About 4500 people saw the survey and about 550 took it. The survey consisted of a ranking mechanism that allowed the participants to rank their favorite names from first to last. The survey tool from Gravity Forms then produced an aggregate score.
Survey Round I
ME was the clear winner with Ramsey’s Disease and ME/CFS in the next tier and CFS and SEID in the last one.
- Myalgic Encephalomyelitis (ME) – 2564 (26% of total points)
- Ramsay’s Disease – 1942 (20%)
- Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome – 1932 (20%)
- Chronic Fatigue Syndrome (CFS) – 1720 (17%)
- Systemic Exertion Intolerance Disease – 1713 (17%)
Survey Round II
Neuroendocrineimmune Disease was added to the list after the first day and proved to be about as popular as ME. Perhaps because of information added to the blog suggesting that the World Health Organization (WHO) does not support naming diseases after individuals, Ramsey’s Disease plummeted in rank. It was not much more popular than SEID or CFS in the second round of the survey.
- Myalgic Encephalomyelitis (ME) – 789
- Neuroendocrineimmune Disease – 725
- Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome – 592
- Ramsay’s Disease – 531
- Chronic Fatigue Syndrome (CFS) – 515
- Systemic Exertion Intolerance Disease – 481
Discussion
SEID
SEID came in last in both survey sections and was essentially tied with CFS in popularity. An earlier poll indicated that many believed it would help out in the doctors office but it’s pretty high “cringe” factor clearly played a role. The comments suggested that many worried it would be misinterpreted and that it lacked the weight needed to describe this illness.
Myalgic Encephalomyelitis
Myalgic encephalomyelitis (ME) and neuroendocrineimmune disease( NEID) are clearly preferred by the patient community.
ME’s strong points include it’s long history with this disorder, its scientific, weighty sounding name, it’s widespread use in the UK and Europe, and its embrace by the patient community.
How much the DHHS weighs historical factors and patient desires will probably make the difference for ME
It’s main weak point is that it describes a condition – inflammation of the brain and spinal cord – that is not, at this point, known to be present in ME/CFS. While names that are not good descriptors of a condition abound in medicine, they were generally produced long before a disease was understood. It’s not clear in this day and age that an medically inaccurate name is viable. On the other hand there is historical precedence for ME. Would that trump it’s lack of medical accuracy? Only the DHHS knows.
Jason’s finding that medical students are more inclined to take a disease with a scientific sounding name seriously suggests your experience in the doctors office could be improved with ME.
With regards to research funding there’s no indication that having a scientific sounding makes a difference. “ME” has been commonly used in that bastion of federally funded behavioral research – the UK – while “chronic fatigue syndrome” has held sway in the U.S. – which has mostly funded pathophysiological research.
In scientific circles that prize accuracy over all, it’s possible that calling ME/CFS a name that doesn’t reflect research findings could lessen its legitimacy.
Neuroendocrineimmune Disease
Neuroendocrineimmune Disease turned out to be about as popular as ME. It does describe many of the findings in this disorder, and it refers to research findings rather than symptoms – something which is clearly important to many patients. It’s main minus is that it’s vagueness allows it to fit many disorders. As such it might run into some of the same reaction in scientific circles as ME may.
The Decision
We should note that a name change is not mandatory. The name could stay the same.
There’s no process at this point to introduce another name to the DHHS. Doing that would presumably require a round of federally approved surveys and meetings that were designed to bring researchers, doctors and patients together to hash this subject out.
SEID – the name proposed by the IOM panel – is clearly not a crowd favorite. It ranked about the same as CFS. If the IOM report reflects the desires of the research/physician community it appears that it and the patient community are far apart on the name they wish for ME/CFS.
Unless the DHHS leans heavily on historical factors and patients wishes, my guess is that the DHHS would not, in this day and age, go with ME. I’m also guessing that NEID is simply too vague for the researchers populating the DHHS to agree to as well.
Those are just guesses but if they’re true that would leave the DHHS with the choice of formally accepting the name as it is (ME/CFS) or going with SEID. The advantage of ME/CFS is that it does bring ME into the equation in perhaps the only way the scientific community may allow it to be brought – as a historical factor. The disadvantage is that CFS is still in there, the name is really long and difficult to explain and it’s basically confusing.
SEID does accurately describe the core symptom in this disorder, and would surely help doctors and others understand the disorder better, but it’s not well-liked by a patient community that is very wary of another symptom-based name that may be misinterpreted.
The backing from the IOM committee could be determinative with regards to SEID, but bucking public opinion is not something the feds do very well either.
It’s possible they’ll simply punt – leaving the name as it is – until research reveals a better name.
Time will tell.
Another Survey
Paradigmchange and ME Advocacy have produced a larger survey on the proposed name. It’s biased against the proposed name and the naming process.
There is a page, for instance, where participants can list the negative aspects of the proposed name, but there’s no page for participants to chart their positive responses to it. Likewise, there is only room to register negative reactions to the naming process.
The survey does provide a wide variety of options to describe your response to the proposed name, however, and should help us understand just what it is about the new name that is most off-putting.
Find out more about the survey here.
Cort, I really need to share my honest opinion here. I’m not trying to start a fight but the reaction from much of the patient community to the IOM report really bothers me! I personally think that SEID is good name, at least an improvement over CFS (trivializing) or ME (not accurate – why, oh why, do people want a name that is not medically accurate, perhaps others can help me understand this?). At least it describes the central feature of the illness and uses the word disease and not syndrome.
It just is the facts that we don’t yet understand the biological cause of this illness. That shouldn’t insult or threaten us, especially when we have people working very hard to study and to treat this illness. Wonderful people like Nancy Klimas, Lucinda Bateman, and Benjamin Natelson who were all on the IOM committee that so many patients now want to demonize. Honestly I get scared that these clinicians and researchers will want to quit because we as a community come off as so demanding, touchy, and ungrateful.
I really don’t understand why we should have a say in naming this illness. Since when are those decisions made by patients, not medical professionals? Won’t these demands by the patient community only serve to reinforce the perception that we are malingerers who just want a medical sounding name for our psychological ailment? I know that we have often been mistreated and misunderstood (I have plenty of my own scars in that regard), but we can’t allow that to make us defensive and difficult to please. That will only hurt our cause in the long run.
Again, I am not trying to start a fight and please don’t attack me personally. I’m sure that there are issues here that I just don’t understand and I promise I will listen with an open mind and heart as others share their perspectives. I just feel very concerned that much of the reaction from our community is hurting, not helping, our image and perhaps discouraging or even driving away those with the greatest ability and willingness to help us.
I guess we’re in the minority Rachel, but I totally agree. They worked hard on the name, kept to the scientific conventions, and it’s a much better name than CFS. All this fussing over the name by patients may stick us with our old nemesis CFS. Is this what we want???
I agree with you too. I am not opposed to SEID but it is not catchy or easy to say or even easy to explain. I have had trouble with ME in that the Doctors I have tried to use it with understood its real meaning and knew that was not what I am experiencing. My Doctors understand CFS and believe it is a real illness – my endocrinologist even handing me the CDC Toolkit printout when she diagnosed me with CFIDS – the term I prefer to use. Fatigue is a weak description of what we experience but it is understood and accepted by researchers. I think we need to wait on a name change until there is new information and a more compelling name that presents itself. For now the IOM diagnostic criteria should help more doctors make the diagnosis even if we still have to call it CFS, CFIDS, or ME/CFS.
Hi Rachel, as an ME patient I usually do what lots of others probably do when I feel the urge to say something – I skip the part that says “I see what you mean, I mostly agree” etc. and just go right for the disagreeing part. Maybe that’s partly why we sometimes come across as demanding? In any case I do see what you mean, I just wanted to add my two cents about those who work to help us solve this disease.
If a doctor/researcher cracks the code and figures out ME they will most likely get a huge load of recognition. The suffering and bad treatment patients have suffered for YEARS might be used as an extra argument for why they have done such an important job. Which we’ll all agree with, more than anyone of course. But it is in their professional interest to work on this. We do not have to come across as nice and jolly for them to justify research into our condition. There are plenty medical, economical, sociological reasons why they should dedicate their time and effort to figuring out this disease. It has nothing to do with our personalities or image, in my opinion. I understand where you’re coming from, but why does it matter? If we want this to be about medical facts only and not personality and our psychological makeup? Sure, nothing’s that simple. But with regards to whether they will “ditch us” if we say this or that, I don’t think it’s relevant. What matters is that they have every reason to devote resources to this problem, and we should not forget it. In case they need to be reminded (again).
Good manners go a long way but the powers that be should not discriminate based on personality! Er. Is what I’m trying to say, I guess.
JUST READ A FUNNY COMMENT–A LADY SAID IT SPELLS ”DIES” BACWARDS. THAT’S A GOOD NAME. IRONICALLY, THAT’S WHAT THIS DIEASE DOES–ROBS US OF OUR LIFE, YEAR AFTER YEAR. IF U R LIKE ME, WORSE EVERY YEAR.
Rachael, well said and I fully agree with you and Marilyn who also replied to your comment. I so hope we can move forward.
I agree as well. We may be biting off our noses to spite our faces. Remember, the IOM committee did listen to us and give us a new name as so many requested.
Check below for my posts on why I don’t think we should have a fight to change what it in the end a temporary name. I also found it easier to explain our illness to a reporter. You are not alone. Also some of us, Cort, were unable to use your survey for technical reasons.
Very well said.
Thank you Rachel, I feel exactly the same.
I agree completely Rachel. We lose credibility if we stick to a name that is incorrect.
I like the ‘exertion intolerance’ part. I have lots of friends with food intolerances – and have some myself. I know how serious these can be. I think ‘intolerance’ is becoming better understood in our society and this name is a growing part of that.
I like the fact that this name is only seen as temporary – that it will bring about enough research to find out the real cause and thus a proper name. However, I suspect this may be confusing to the general public if we keep changing names.
I also agree with your comments Rachel. I think we should all be prepared to stand behind this report, and the new criteria.
Recognising our condition as a legitimate stand-alone disease is long overdue. A disease arrived at by differential diagnosis rather than by way of exclusion, is to be welcomed.
I think the IOM committee did a cracking job here, and await the clinical guideline – albeit with some anxiety because I suspect treatments or illness management approaches will need be mentioned and that will likely kick off another storm of protest.
But, as the IOM were not tasked with reviewing treatment, more’s the pity, perhaps America will have to wait on this aspect until your Govt. has had its say.
With regards to CFS: the king is dead. Long live the king!
It’s not about the name. It never has been, for me. It’s been about the diagnostic criteria. ME has history. The Lake Tahoe outbreaks and other around that time, were ME with additional evidence for immune abnormalities. What the CDC did was a mistake…perhaps a deliberate move, but I won’t go into the politics now.
Many have been saying the reasons why ME is important for years before SEID, so I don’t get why you don’t get it, unless you only follow certain viewpoints.
Everyone seems to be repeating the bit about not having evidence for brain and spinal cord inflammation. Well, firstly there’s no post-mortem biobank in full operation yet and secondly, that’s just part of what ME was and is. The support for Ramsay’s ME brings in more than that.
SEID doesn’t mention viral symptoms or even viral onset, in the diagnostic criteria. Even Fukuda had that! The immune system abnormalities is a big part of having PVFS/ME.
We don’t need another vague diagnostic criteria muddying the waters. If people are concerned about not getting a diagnosis, we could have ME and Atypical ME, which is I think what the ICC:ME recommended.
It’s too soon. We needed subgrouping with biomarkers and diagnostic tests. It’s a waste of money, unless you have stricter diagnostic criteria, which without diagnostics, it needs to be.
‘why, oh why, do people want a name that is not medically accurate, perhaps others can help me understand this?’
From a British perspective, it came about like this:
Myalgic Encephalomyelitis has been classified in the ICD as a neurological disease since 1969. CFS has not. That’s why the patient community (together with some doctors) here in the UK have battled so hard to keep the name ME – because it already had recognition as a physical illness. It was primarily the psychiatric lobby that fought for the name CFS. As a symptomatic name with no formal ICD classification, they could fit it to their understanding of the illness. And they very nearly won. ME/CFS was a compromise.
To be honest, I sincerely doubt whether the name would ever have been questioned in the UK if it had not been for the psychiatric lobby. Any inaccuracy would simply have been dismissed as an archaic quirk. As it is, I think a disproportionate amount of attention has been paid to it.
Meanwhile, the psychiatric community will continue to accept any name based on symptoms, without changing their view at all. Seriously. It’s like talking to a wall. They will understand ‘exertion intolerance’ in exactly the same way as they understood ‘chronic fatigue’. SEID will get us absolutely nowhere with such people. What will is the rest of the medical community (with the support of government) standing up and telling them they are wrong.
Note: When I said ‘I doubt whether the name would ever have been questioned’ I was referring to the (original) name ‘Myalgic Encephalomyelitis’.
Thank you for sharing that information, Ros! My experience here in the US has been that few people, including physicians, have even heard the term ME, but it’s helpful to understand the history on your side of the pond.
Ros is EXACTLY right. M.E. is the historical name and is recognised by the WHO. It’s only the American lobbying from Pyschs that tried to impose CFS for their own agenda, which meant biomedical research was dropped for CBT & GET in the UK. It’s muddied the waters and put research and taking it seriously back many years.
It has a name. What we desperately need is mass, widespread testing and biomedical research. It needs to be found out how many patients ARE affected by brain and spinal inflammation and looking for other verifiable markers using the latest techniques.
They should just drop the CFS or just stick with ME/CFS instead of thinking up new names, just work with what we’ve got and push for new biomedical research. The naming will be a lot easier when we know exactly what we’re dealing with. Invest in research looking for testable markers, subgroup patients accordingly then name and give treatment protocols for the different subgroups. Until we do widespread testing and subgrouping patients accordingly we will not be able to move forward effectively. Renaming is just a waste of resources at this time and a bit of a smoke screen.
I agree entirely-ME sufferers have battled 30ys to keep the name ME(muscle and brain infection as described in Dr Melvin Ramsey’s research) It was 2 psychiatrits that said ‘it was all in the head’ how can severe pain and bad fevers , high temperatures be ‘all in the mind? its a bloody infection-
Sincerely Jacqui-26yrs of ME then Lyme
I agree, too, and I am really sorry to see so much negative reaction.
Just last year, two studies, one at Stanford University and one in Japan, used brain scans to show brain inflammation in ME patients. The study in Japan found brain damage. Several other studies have found brain inflammation. These studies were presumably left out of the IOM report because they are considered not large and robust enough to define the disease… but it is highly possible, and likely, that brain inflammation is a major part of ME.
The problem is that our govt is not putting money into replicating these brain studies on a larger scale, not that the name doesn’t fit the illness!
I voted for Ramsay’s disease. I think it makes sense with the heavy dose of politics involved with every other name, and the danger of naming it after a symptom that trivializes a highly complex disease. Even ME leaves out the immune and viral issues.
Rachel Stanton, in response to your comment that “we as a community come off as demanding, touchy & ungrateful” these are absolutely NOT the words I associate with the M.E community. Courage, strength & bravery are a far better fit for the biggest majority (especially the severely affected). Many of us can’t leave our beds ever & we are very rarely able to let our voice be heard. Don’t stamp it out and please don’t throw insults to an entire patient community just because a small minority want to ‘demonise’ the IOM committee as u word it. I’m not aware of anyone doing this. I’ve only read people’s heartfelt messages about the name. The IOM committee doesn’t deserve backlash, they are good people, with good intentions & I really appreciate what they’re doing. Being disappointed about the new name & voicing this politely on an article that asks what we think seems perfectly reasonable to me.
Regarding the comment you made:
“Won’t these demands by the patient community only serve to reinforce the perception that we are malingerers who just want a medical sounding name for our psychological ailment?”
I find this comment insulting. In particular the word ‘malingerers’. It’s devastating each time I hear that word associated with us. Many of us with M.E are the most driven, hard working people who lived life to the full before getting ill. We are at the opposite end of the scale to malingerers. It is like calling a nun a prostitute, it’s ludicrous! & you’ve mentioned it twice now on different articles. I’ve spent 2 days struggling to write this because your comment was harmful. Its important that we aren’t afraid to speak up & let others hear just how extremely severe & devastating this disease is. This is only the 2nd reply I’ve written in 8 years so bear in mind that there are people too unwell to ever give their opinion & when they manage to, it’s important that their viewpoint isn’t shut up. While SEID is perhaps the perfect name for what some are experiencing, for others its seriously inadequate. It partly depends on illness severity. But one things for sure, SEID could be a lot worse when considering that Per Fink uses the term PAW (which I think is Pervasive Arousal Withdrawal) yuck!
Rachel Stanton, in response to your comment that “we as a community come off as demanding, touchy & ungrateful” these are absolutely NOT the words I associate with the M.E community. Courage, strength & bravery are a far better fit for the biggest majority (especially the severely affected). Many of us can’t leave our beds ever & we are very rarely able to let our voice be heard. Don’t stamp it out and please don’t throw insults to an entire patient community just because a small minority want to ‘demonise’ the IOM committee as u word it. I’m not aware of anyone doing this. I’ve only read people’s heartfelt messages about the name. The IOM committee doesn’t deserve backlash, they are good people, with good intentions & I really appreciate what they’re doing. Being disappointed about the new name & voicing this politely on an article that asks what we think seems perfectly reasonable to me.
Regarding the comment you made:
“Won’t these demands by the patient community only serve to reinforce the perception that we are malingerers who just want a medical sounding name for our psychological ailment?”
I find this comment insulting. In particular the word ‘malingerers’. It’s devastating each time I hear that word associated with us. Many of us with M.E are the most driven, hard working people who lived life to the full before getting ill. We are at the opposite end of the scale to malingerers. It is like calling a nun a prostitute, it’s ludicrous! & you’ve mentioned it twice now on different articles. I’ve spent 2 days struggling to write this because your comment was harmful. Its important that we aren’t afraid to speak up & let others hear just how extremely severe & devastating this disease is. This is only the 2nd reply I’ve written in 8 years so bear in mind that there are people too unwell to ever give their opinion & when they manage to, it’s important that their viewpoint isn’t shut up. While SEID is perhaps the perfect name for what some are experiencing, for others its seriously inadequate. It partly depends on illness severity. But one things for sure, SEID could be a lot worse when considering that Per Fink uses the term PAW (which I think is Pervasive Arousal Withdrawal) yuck!
Rachel Stanton, in response to your comment that “we as a community come off as demanding, touchy & ungrateful” these are absolutely NOT the words I associate with the M.E community. Courage, strength & bravery are a far better fit for the biggest majority (especially the severely affected). Many of us can’t leave our beds ever & we are very rarely able to let our voice be heard. Don’t stamp it out and please don’t throw insults to an entire patient community just because a small minority want to ‘demonise’ the IOM committee as u word it. I’m not aware of anyone doing this. I’ve only read people’s heartfelt messages about the name on Corts previous article. The IOM committee doesn’t deserve backlash, they are good people, with good intentions & I really appreciate what they’re doing. Being disappointed about the new name & voicing this politely on an article that asks what we think seems perfectly reasonable to me.
Regarding the comment you made:
“Won’t these demands by the patient community only serve to reinforce the perception that we are malingerers who just want a medical sounding name for our psychological ailment?”
I find this comment insulting. In particular the word ‘malingerers’. It’s devastating each time I hear that word associated with us. Many of us with M.E are the most driven, hard working people who lived life to the full before getting ill. We are at the opposite end of the scale to malingerers. It is like calling a nun a prostitute, it’s ludicrous! & you’ve mentioned it twice now on different articles. I’ve spent 2 days struggling to write this because your comment was harmful. Its important that we aren’t afraid to speak up & let others hear just how extremely severe & devastating this disease is. This is only the 2nd reply I’ve written in 8 years so bear in mind that there are people too unwell to ever give their opinion & when they manage to, it’s important that their viewpoint isn’t shut up. While SEID is perhaps the perfect name for what some are experiencing, for others its seriously inadequate. It partly depends on illness severity. But one things for sure, SEID could be a lot worse when considering that Per Fink uses the term PAW (which I think is Pervasive Arousal Withdrawal) yuck!
Oops I didn’t intentionally send this numerous times. It kept saying sending failed so I re-tried several times.
Kelly, I did not intend my comments to be harmful or insulting to you or anyone else. The last thing I want to do is insult any of my fellow ME/CFS sufferers. This illness has been an agonizing experience for me and I know it is for countless others as well. But it is because I believe that we as a community desperately need to be taken seriously and shown compassion by the medical community and by society at large that I felt compelled to voice my concerns. However I did not want to do it in a way that was disrespectful and I sincerely apologize for hurting you.
That being said, I still would like to clarify a few points. First, is it possible that people could be courageous, strong and brave AND still behave in a manner that comes off as demanding, touchy and ungrateful? Is it possible that at times we are responding out of our very legitimate hurt and pain, but don’t recognize how much that colors our reactions and alienates others? I know that has certainly been true in my own life at times.
You mentioned that you are not aware of people wanting to demonize the IOM committee. I know of a website with over 200 hostile, angry comments aimed at the committee by patients. They certainly have the freedom to express themselves in that way but I am arguing that it is counter-productive and insulting to the people trying hardest to help us. I thought about posting a link to that site to prove my point but I honestly do not want to drive any more traffic their way.
Also you said that the word “malingerers” was insulting and that it is devastating to hear the word associated with us. I know what you mean, since I have experienced exactly that type of contempt. I think most of us have. However, I said “Won’t these demands by the patient community only serve to reinforce the perception that we are malingerers?” Heavy emphasis on the word perception. Because of my own miserable experience with CFS, I know that we are not malingerers. But I still am concerned that if our collective voice is seen as primarily anger and outrage at the IOM committee, we hurt our very legitimate cause.
PS – I am not familiar with Per Fink or PAW. If you feel able, could you share more about it? Thanks!
I agree with you rachel! SEID is far from perfect, but it is a step forward and all the medical establishment can allow at present before there is enough evidence concerning the pathophysiology. I am so scared that the name will continue to be CFS because of this disagreement. I believe the IOM is on our side and we should support it. Should we reject changes that are not big enough or not exactly what we want? If the NIH offered us 30 more million a year in research would we reject it because it is still not enough?
do small changes eventually = big change?
“I am so scared that the name will continue to be CFS because of this disagreement.”
I agree, Sophie! For those of us here in the US, the name ME has never caught on with the medical establishment and it is a no go at this point. That leaves us with our old nemesis CFS and I think SEIM is much better by comparison!
I have had this for 30 odd years now and have to say I agree SEID is better than CFS. It is after all got systemic and disease in it and it hasn’t got fatigue or syndrome in it. It’s no doubt an interim name anyway.
Let’s just let them get on and solve the far bigger problem than not having the absolute very perfect name and let them try and find out what’s wrong and something that can actually help us.
Hi all,
SEID is a big improvement over ME. ME makes me cringe every time I say it and doctors and public alike often associate it with a “psychological” illness here in the UK.
I took part in a B cell trial this week at UCL in London (part of the Rituximab research and working closely with Norway) and the doctors and resesearchers there thought SEID will help a lot. So there you go.
Trust ME is not gonna help. I am surprised so many think it will. Personally I like Ramsays but SEID will do for now until more is learned in research field and it is certainly a lot better than ME or ME/CFS.
Interestingly the name they are using for the B cell study I just took part in is Myalgic Encephalitis/Chronic Fatigue Syndrome not “myelitis”.
Tim
I have had this for 30 odd years now and have to say I agree S.E.I,D. is better than CFS. It is after all got systemic and disease in it and it hasn’t got fatigue or syndrome in it. It’s no doubt an interim name anyway.
Let’s just let them get on and solve the far bigger problem than not having the absolute very perfect name and let them try and find out what’s wrong and something that can actually help us.
It is senseless to change the name when they plan to change it again within 5 years. I was strongly involved in advocating for the name change from CFS in the US to ME because the rest of the world used ME. Myalgic Encephalomyelitis has been classified in the ICD as a neurological disease since 1969. Until our CDC made the unilateral decision to give it the insulting CFS name and treating it as a psychological illness. It is confusing and alienating to unilaterally change a disease name the rest of the world uses. We handed the UK’s man in charge – Simon Wellesley, a psychiatrist – exactly what he was looking for. NOW HERE WE GO AGAIN!!! Unilaterally changing the name to yet another symptomatic name.
THE NAME MATTERS. If you have not, study the history of what happened to the disease when the powerful CDC, the leading national public health institute of the United States, got involved.
THE NAME MATTERS because public perception drives politics which drives government funding.
THE NAME MATTERS because most of us have lost family support when we needed it most.
The IOM did a good job overall yet what have the news media mainly covered? THE NAME. If you believe SEID is any better, read the comments following the reports by the NYTimes, WashPo, CBS, NBC, etc. They are brutal.
I have had this disease for 25+ years. I am not apologizing for being angry that my government ignored the seriousness of a disease to which I have watched many friends and acquaintances die from. Many of who committed suicide. A disease which has robbed me of my life. We have every right to be angry that history seems to be repeating itself and our neighbors around the world are understandably worrying about the powerful influence the US has. There is an excellent book about the long and winding road we veterans have been on, Osler’s Web. If you haven’t, please read it, assuming you are able.
Here’s my rebuttal to the name matters.
Myalgic encephalomyelitis has been used in the UK – the bastion of behavioral thinking – to describe this disease since 1959 I think it was. I’m fairly sure that more CBT and GET studies have come out of the UK than any other country. ME/CFS’s classification as a neurological disorder did little that I can tell to do anything in the UK or the US.
Meanwhile the country that gave it the bad name has easily done more physiological research than any other country. The US has never been at the forefront of a behavioral interpretation of ME/CFS – it’s done very few CBT studies – and the CDC has done NONE….
It’s not the CDC, it’s not the name – the behavioral interpretation of this disease is UK and European driven – the lands of “ME” and it’s always been that way…For some reason they got off on that foot and stayed that way and the US was able to beat the psych lobby down.
Cort, I agree that the US has had far more luck beating the psyche lobby down. However, it is my understanding from my UK friends/advocates (and my own reading) that when the US adopted CFS as the new name it gave Wellesley his ammunition.
I would love to hear from our friends in the UK and abroad to weigh in on this subject. Wish we could tag in comments. 🙂
Thank you for your reply and ALL your hard work.
I agree that having post exertion symptoms would be important in the name.
Well said Rachel. I think it is a good name too as it describes what happens and gives a better understanding of this illness. ME/CFS doesn’t do it for me. When i was first diagnosed i thought “fatigue, what fatigue, machines suffer fatigue when nuts and bolts get fatigued but humans….” I still 15 years later can’t relate to the word fatigue for humans. Yes, since the researchers are working on it, they need a name they can relate to the illness but hopefully one the community will accept.
Rachel, I couldn’t agree more strongly with your post. I think you are right on every point. We are so used to mistreatment from the federal government that it is, perhaps understandably, our first reaction to feel mistreated and to attack back. This report and this name, however, are the best thing to happen in a long time!
This is really sad to me. The IOM report feels like a new beginning and it would be really nice to have a new name to go with it. Instead we will probably be stuck with the same crappy name now that the patient community has rejected SEID.
I agree with so many of you. Well put Marilyn and Rachael! I felt so uplifted and full of hope, even happy after reading the IOM report. It looked to me like finally the way was being paved in which we would have our illness taken seriously by our practitioners! But within a few day sadness set in after learning of the outcry from the ME/CFS community regarding the name change. Perhaps I’m being complacent but really almost ANY NAME has got to be better than one with CFS in it. Our demands are going to wear thin on those trying to help us and quite possibly we’ll be back at square one 🙁
Correct me if I’m wrong but I could swear that I’ve seen reports of inflammation being present in various studies. I wish I could recall which study or the last report I read but alas I cannot. Perhaps the inflammations was not present in the spine and brain. Can this be determined without a corpse? How can the determination be made when you cannot prove that inflammations is NOT present in the spine and/or brain of every person with this disease. I think ME could head the 2 subgroups of opathy or itis.
You are correct. A small study did find inflammation in the brain http://phoenixrising.me/archives/24936
Among my multiple symptoms & diseases is brain inflammation and I have been treated for it for a couple of decades now. Everybody’s body is different and responds with myriad reactions to the triggering event or factors. I’m sure the panel tried, but my feedback to SEID with the word ‘exhaustion’ in it (a symptom, not a causal factor) was one of true frustration. Unless required to by insurance demands, I’ll stick to M.E. or M.E./CFIDS in self-describing my situation. Thank you for listening, even if you happen to disagree. Or, maybe, especially if you disagree.
Kate, just to clarify, the name SEID doesn’t contain the word exhaustion (thankfully!). It stands for Systemic Exertion Intolerance Disease. According to the committee, “This name captures a central characteristic of the disease: the fact that exertion of any sort—physical, cognitive, or emotional—can adversely affect patients in many organ systems and in many aspects of their lives.”
http://www.newscientist.com/article/dn9342-first-official-uk-death-from-chronic-fatigue-syndrome.html#.VOqFI2dQ2uA
LOW GRADE ENCEPHALITIS IN ME/CFS PATIENTS
First Direct Evidence of Neuroinflammation – ‘Encephalitis’ – in ME/CFS
April 29, 2014
Simon McGrath reports on the new study that indicates low-grade encephalitis in ME/CFS …
A small study with just nine patients has captured the attention of patients and researchers alike after reporting direct evidence of inflammation in the brain of ME/CFS patients. The finding was one of the highlights picked out by Professor Anthony Komaroff in his IACFS/ME conference round up.
Neuroinflammation may lead to ME/CFS symptoms. credit: Canstock
Neuroinflammation may be behind ME/CFS symptoms
Photo credit: Canstock, http://www.canstock.com
Back to the future
What makes this study so fascinating is that it provides tantalising evidence supporting not only of current views that inflammation in the brain is central to understanding the disease, but also of Melvin Ramsay’s original name of ‘myalgic encephalomyelitis‘.
Encephalomyelitis is inflammation of the brain and spinal column, and critics of the name pointed to the lack of direct evidence for inflammation of either. This study only looked at the brain, not the spinal column (so could only find encephalitis), but the immune cells found to be activated in the brain are also present in the spinal column.
The study
Yasuyoshi Watanabe
Dr. Yasuyoshi Watanabe
To see if there is immune activation in the brain, researchers need to look inside the brain — which is not so easy if you want patients to still be alive when your study is done.
The scientists in this study, led by Dr. Yasuyoshi Watanabe from the RIKEN institute in Japan, used PET & MRI imaging to peer into the brain.
What make this study work is the use of tiny quantities of a radioactive tracer that binds to specific proteins that appear on activated microglia (the main immune cells of the brain) but crucially doesn’t bind to non-activated microglia. The marker also binds to activated astrocytes, which play an immune role in the brain. The brains of nine ME/CFS patients meeting both Fukuda and International Consensus Criteria were compared with those of 10 healthy controls.
The results showed that neuroinflammation markers were higher for patients than controls across many brain areas including the thalamus, the pons and the midbrain. They also found that the severity of symptoms correlated with the degree of inflammation in multiple brain regions, particularly for cognitive functioning.
It was the correlation between a biological finding — neuroinflammation — and clinical problems that Komaroff found so exciting about this work, because it suggests a biologically plausible explanation for the symptoms of ME/CFS:
“[If replicated] it would, for me, say that there is a low-grade, chronic encephalitis in these patients, that the image we clinicians have of encephalitis as an acute and often dramatic clinical presentation that can even be fatal has — may have — blinded us to the possibility that there may be that long-lasting — many years long — cyclic chronic neuroinflammation is underlying the symptoms of this illness.”
Representative PET scans showing activated microglia in a CFS/ME patient. AMY, amygdala; CC, cingulate cortex; HIP, hippocampus; MID, midbrain; THA, thalamus; and PON: pons. Credit: Image courtesy of RIKEN
Representative PET scans showing activated microglia in a CFS/ME patient.
Key to brain regions: AMY, amygdala; CC, cingulate cortex; HIP, hippocampus; MID, midbrain; THA, thalamus; and PON: pons.
Photo credit: Image courtesy of RIKEN
Intriguingly, the midbrain, thalamus and amygdala — all regions where cognitive problems correlate with neuroinflammation — are also all part of neural circuits involved in awareness, arousal and attention. Concentration problems are typical of ME/CFS, and one of the problems found most consistently in laboratory testing.
Harvard Professor Tony Komaroff on these PET findings, and their potential importance
Starts at 30′ 10″, Q&A re encephalomyelitis @ 37′.
Replication needed
While tantalising, these findings are far from conclusive, as the authors acknowledge. The study has only nine patients, albeit diagnosed with ICC criteria. The tracer used to identify activated immune cells produces a very ‘noisy’ signal, giving rather indistinct readings, and the overall level of neuroinflammation was relatively low.
Although cognitive issues correlated with neuroinflammation in several areas, generally other symptoms, including fatigue, did not significantly correlate with inflammation.
There was almost no sign of inflammation in the prefrontal cortex, the region of the brain most involved in higher cognitive functions, that might be expected to be a problem in ME/CFS. And there was a potential technical weakness in the way the study was run.
Commenting on the neuroinflammation, Komaroff emphasised the need for replication:
“If it were confirmed by multiple other investigators … these data are consistent with [encephalitis], but I would feel more strongly if other labs using same technology came up with the same result.”
The good news is that the authors of this study are already working on a new study using the same patients but with a newer and more sensitive tracer to pick up neuroinflammation. They will address the earlier technical issue, and to make the study more powerful they will also be looking at neurotransmitter activity in the brain, following up their previous findings of neurotransmitter abnormalities.
Hopefully independent groups will try to replicate this finding too – and in the U.K., Dr. Charles Shepherd of the ME Association has already said it would welcome applications to fund a replication attempt.
Microglia — key to ME/CFS?
microgliawikimedia
Microglial cells (green).
Photo credit: Gary Shaw, Wikimedia, CC 3.0 licence
So neuroinflammation — specifically activation of microglia — correlates with cognitive problems, but how might microglial activation cause the problem?
The most plausible answer is through what is termed ‘sickness behaviour’ — a characteristic set of responses to infection, including fatigue, malaise joint and muscle pain and problems concentrating — which might just sound familiar to ME/CFS sufferers. (‘Sickness behaviour’ is a lousy name for biological phenomenon, as Dr. Dan Peterson has noted).
Microglia are known to play a key role in regulating sickness behaviour, and that’s a big reason this study has attracted so much attention in ME/CFS.
sick
‘Sickness Behaviour’ is driven by biology: infection leads to a rise in pro-inflammatory cytokines in the blood, triggering activation of brain microglia and their production of cytokines. This triggers sickness behaviour.
The fatigue, malaise, problems concentrating, etc., of sickness behaviour help us survive an infection by forcing us to rest so our body can devote all its resources to the energy-greedy immune system.
However, sickness behaviour is normally a short-lived response to an acute infection, designed to temporarily divert resources to ensure a swift recovery. If that doesn’t happen, e.g., if there is a chronic infection, or the process goes wrong, for instance, if microglia remain activated after an infection has been cleared, then sickness behaviour can itself be a problem. ME/CFS may be an example of this.
Cytokines in the spotlight
Cytokines are a key trigger for sickness behaviour, and researchers have often found elevated cytokines in patients, but the findings have been inconsistent and in small studies. The new studies reported on by Dr. Jose Montoya at the Stanford conference and Dr. Mady Hornig at the IACFS/ME conference are helping to firm up these findings in huge cohorts.
Probably the most important piece of work on the role of sickness behaviour — and cytokines — in ME/CFS came from the landmark “Dubbo” studies.
The researchers found that about 11% of those with glandular fever and two other infections developed CFS after six months. And crucially, what predicted the length of the illness (and chance of developing CFS) wasn’t psychological factors, but the severity of the initial ‘acute illness’, or sickness behaviour.
The researchers also showed that those with more active genes for the pro-inflammatory cytokine Interferon-gamma had a more severe sickness behaviour (and longer illness) than those with regular versions, linking cytokine response to sickness behaviour and ME/CFS.
The Dubbo study did not look at inflammation in the brain, but the authors did speculate that the cause of CFS could be long-term activation of microglia and astrocytes. And that is exactly what was found in this new PET imaging study.
As with all research findings, replication is essential, and a new version of the Dubbo study is currently under way in Sydney, Australia.
The new imaging study from Japan has found provisional evidence of activated astrocytes and microglia cells (both types of glial cell) in the brain of ME/CFS patients. This is support for the suggestion from the Dubbo team that ME/CFS develops from certain infections as a result of activation of brain microglia.
Dr. Michael VanElzakker’s recent vagus nerve infection hypothesis also features glial cells heavily. And recently Professor Hugh Perry, who has studied microglial cells in neurodegenerative diseases such as Parkinson’s disease, proposed that primed microglia and sickness behaviour lie at the heart of ME/CFS.
Neuroinflammation and Sickness Behaviour the final common path in ME/CFS?
It may prove to be that ‘neuroinflammation’ — i.e., activated microglia in the brain/spinal column — is a common endpoint of numerous triggers, including glandular fever (EBV), other infections, vaccines — or even, as Dr. Lipkin has proposed, disturbances in the microbiome.
Discovering if this is the case — and firming up the finding of neuroinflammation is key — could be a big step forward in understanding and then treating ME/CFS. And those it is still very early days, it is possible this approach could eventually show that Dr Ramsay was right about ‘encephalomyeltitis’.
Watch out for a new blog on sickness behaviour, microglia, cytokines and their role in ME/CFS, coming soon.
Simon McGrath tweets on ME/CFS research:
http://www.newscientist.com/article/dn9342-first-official-uk-death-from-chronic-fatigue-syndrome.html#.VOqFI2dQ2uA
Yes, it was just nine patients. They’re enlarging the study and hopefully the results will be validated but it will take several good-sized studies with consistent results in which symptom severity is clearly associated with the degree of inflammation for a real foundation for ME to be laid.
In short it’s going to take several years. That said I wouldn’t be surprised if encephalomyelitis or some version of it does end up being correct enough or close enough to be the name. (My brain certainly feels inflamed (although I know the brain has no feeling…:)).
I don’t see how myalgia ends up being a part of it but who knows.
This is the crux of the matter with the name ME and the new research will show brain inflammation and validate the name. Prof Lloyd of The Dubbo study also has a grant for a large study of @500 to build on the Japanese one. Ramsay was right. (Unfortunately he is a pom so the US might like Gilliam better!)
Not sure we eed the “MYE” though. Encehaphalitis would be more accurate.
Claudia, I had to go and look up the meaning of the word “pom.” Here is the definition according to the Urban Dictionary:
pom
Either comes from ‘prisoner of mother England’ or pomegranate – a reddish coloured fruit that native Australians (Aboriginals) thought had a similar colour to the skin of sunburnt Brits. Not meant to be an insult (as some English think for some reason), merely a nickname for our less-tanned former rulers. Nicknaming everything is very Australian.
🙂
OM, thank you for this very thorough over-view of several studies. My foggy brain was trying to remember where I read about the neuroinflammation studies. It will be interesting to find out what additional studies bring.
Didn’t the Stanford conference last March touch upon this subject also?
There are potentially myriad dysfunctions of several pathways in the systems of people with ME-I’m still calling it that, I also have FM so I do have the myalgia part.
There also seems to be cell energy transference problems. Don’t ask me to go into detail because my brain is having a difficult time today, but doesn’t that also make sense? Also years and years ago I took a kinesiology course studying VO2 and there may be an interference with normal functioning there, at least part of the complicated pathophysiology.
I read the report on “sickness behaviour” and even though I don’t like the terminology it certainly describes exactly how I feel. I often tell people, when describing how I feel almost 24/7, to remember what you feel like when you have a bad flu then think about it going on and on and on.
In addition to ME/CFS/SEID I have the odd-sounding condition called MGUS (Monoclonal Gammopathy of Unknown Significance). It’s a possible precursor to Multiple Myeloma, so I am regularly monitored, and the pathologists often chuckle goodnaturedly in reference to the phrase ‘unknown significance’… But it has occurred to me that something along similar lines might work for our slippery disorder. So, I wish to put forward the suggestion of Complex Systemic Dysregulation Disorder (unknown cause and course)… Well, the words in brackets are not necessary, but perhaps CSDD is as close as we’re gonna get, at this stage – medically accurate, descriptive of the illness experience, and most importantly, respectful of patients’ dignity.
Marilyn, Hi there! I found out today I also have MGUS (My kappa/lambda ratio is high & the bence jones protein showed up, but no bone lesions were found in my skeletal survey). I’m wondering, do any of your doctors suspect that MGUS is the cause of your CFS ? Or, do you have any insights on how the two might correlate? Or, perhaps tips to offer specific to having both conditions?
In addition to MGUS I suspect I have chronic fatigue syndrome , triggered by malaria that went undiagnosed & untreated for over 2 years. I haven’t been well enough to hold a job since I returned from Africa 3 years ago. Unfortunately the University of Michigan ‘s health system won’t diagnose & manage CFS, but I will be paying out of pocket to hopefully receive a diagnosis at the end of summer. And to possibly have my bone marrow screened for malaria.
I’m still concerned about bad bone marrow being the cause of my fatigue. Do you feel confident that your CFS is unrelated?
(If any one else reading this knows of cases of post-malaria chronic fatigue persisting for more than a couple of years, would you mind leaving a message? I’m compiling cases for the CDC to consider. Thanks!)
I vote for Ramsay’s (or Ramsey’s) disease. Like Alzheiimer’s Disease, Parkinson’s Disease and other diseases named after the person who first called attention to them, there are so many problems associated with CFS/ME/SEID/CFIDS, etc. that it may be better to just use a name of a person.
I think that the patients just want the scapegoating to subside.
Dr. Zinn
I didn’t like the name either, but ranking worse than Chronic Fatigue?
I think that’s just bein over reactive. At least is a disease now…
Someone mentioned Hillebrand Disease in some other article, I liked that.
I just started calling it “Hillenbrand’s Disease”. It makes me feel better. It makes it a validating factor to tell people I have the same disease as Laura; and the world knows of her now; and hopefully her popularity will grow.
I’ve also contacted her to ask her to advocate for our community more. I just had to ask.
Judy
http://www.Structured-Water-Devices.com
P.S. Does the box “Notify me of new posts by email.” work for anyone? I always check the box, but never get notifications of new posts…
Yes, I ger Cort’s notifications. Amazing how it’s something new almost daily! Don’t know how you do it, Cort.
I think Judy means if you make a comment. I, too, have checked that box but never receive notification that someone has responded with a further comment. Cort, I think we have a problem 😉
It sounds like we do. I will pass it on to Stavya – our WordPress Genius 🙂
I wonder that myself Cort. Kudos to you!!
The “Notify me of new posts by email” feature does not work for me either, Judy.
I reluctantly agree with Rachel and Marilyn. I have problems with with SEID name, but also think that the IOM report has the potential to open a new door for us – a door behind which there might be new diagnostic criteria and more research dollars. I don’t want to see us make the perfect the enemy of the good and miss the potential opportunities here. If there is a way to split diagnosis and dollars from name, I’d like to see that explored, but I suspect that is not possible. Let’s keep our eyes on the prize.
“I don’t want to see us make the perfect the enemy of the good”
Well said, Amy!
Exactly, let’s not put up road blocks to the ‘prize’
Medical consensus is based on lots of replicating studies. 9 patients is phooey (interesting by non-conclusive) in scientific research—a study has to build on more and more research subjects and be confirmed by other scientists–they have to get the same results or lead to other interesting developments.
I think the new name is good. It’s simple, to the point and it’s a good, diagnostic starting point from what is actually easily seen/known. Whatever-you-want-to-call-it is extremely complicated and debilitating. I hope this augurs a new era of intense research!!!!
I seem to recall that the IOM panel itself acknowledges this isn’t the best name and that it should be reevaluated in 2-5 years. Given that, why change it at all? How many times is the name going to change? I’m for waiting until research points to a definitive name. To me, the most important message from the report is that this is a serious, debilitating illness, and that this be communicated to doctors, along with the new diagnostic criteria. Maybe not everyone is familiar with ME/CFS but very many are. With that and the new demands that it be diagnosed and treated I feel we are further ahead than with a new inadequate name that has to be explained and then changed again in a few years.
I agree. Just leave the name alone for now and wait until we know a bit more about the disease. Surely it can’t be much longer now? Aren’t there some big studies coming out soon? I would think in a couple of years quite a bit more will be known as to whether it truly is causing any brain inflammation or not, is causing immune dysfunction beyond that of other illnesses, is autoimmune or not etc.
I do think we’re going to see some really interesting findings this year. My guess is that we’re going to move more in the next couple years than we have in quite awhile.
Laying the foundation for a name is not going to be easy I don’t think because it should really identify the core problem in ME/CFS. I’m a little worried that we’re going to get a bunch of findings in different areas that make it hard to determine what the core finding is…
I agree with you Cort. The name does not matter right now! At least we have something to call it. It is progress in different areas starting with the brain for one.
I have had ME/CFS and in 1979 (was 34yrs.old)there was “NO DR.” TO FIND ANYTHING WRONG with me or a NAME??!!. It was diagnosed as all in my head. Diagnoses was to see a head therapist out of all the Dr.s I had seen. The findings of the problem’s would be the better answer. At least today we have some Dr.’s to say this does exist and more findings will come about. Now, I am 69 yrs. old & I hope within a yr. or two would be nice to find the solution to ME/CFS. God bless all.
P.S. I find it hard to believe that sick patients being unhappy with a name would cause research dollars to dry up. Surely gratitude from the patient community isn’t the primary motivation driving research.
Here is a link to information about a new survey designed to evaluate the name SEID as well as the naming process (i.e. using IOM to pick a name).
http://paradigmchange.me/wp/name-evaluation/
The results will be written into a formal report and presented to HHS and CFSAC, as well as to other government officials and to the media.
My background is in survey design (Ph.D. in marketing, Kellogg School of Management, Northwestern University), and I had help on this project from some other people who also are very experienced in survey design. So I think that this project will be taken seriously by the decision makers who evaluate the results.
The goal of this survey is NOT to choose a new name for the disease. It is ONLY to provide useful feedback to decision makers on whether the name should be used.
There’s a question about other names, but it is only to get a preliminary sense of what people would like for the name if they felt the criteria were acceptable (which many do not).
The survey is presented by Paradigm Change and ME Advocacy. It is estimated to take 4 minutes to complete.
Thanks much for considering participating!
Best,
Lisa Petrison, Ph.D.
Paradigm Change
Here is the direct link to the survey.
http://www.surveygizmo.com/s3/2020116/Evaluating-the-IOMs-Proposed-Name-for-MECFS
As Cort said above, I think the survey from ME Advocacy and Paradigm Change is quite biased which doesn’t say much in terms of any claim of professionalism.
The Institute of Medicine committee were charged to:
“recommend whether new terminology for ME/CFS should be adopted”
That was their instruction. Whether or not they should have been asked to consider this is irrelevant and goes back to some people’s resistance towards HHS granting the commission to IOM in the first place.
This was an independent committee that considered the evidence base as it currently stands, whose members included many well know ME/CFS experts.
Dr Rowe and Dr Davies, had this to say in the article from Science, by way of example:
“This is a phenomenal report,” Rowe said, noting that it had unanimous support. “It has the best summary of the evidence that I’ve ever read.” The U.S. Department of Health and Human Services and the Social Security Administration sponsored the IOM study and report.
Systemic exertion intolerance disease does not exactly roll off the tongue. IOM committee member Ronald Davis, a biochemist who heads the genome center at Stanford University in Palo Alto, California, says the group considered about 100 options. “Boy, did we struggle with that,” he said. “It’s hard to come up with a good name, and I don’t think this is a perfect name.”
But Davis thinks its essential to do away with chronic fatigue syndrome. “My son is sick with it, and when I tell people, they say, ‘I had that once,’ because they were tired once,” he said. “ME is a better name, but there are no real data that fit the name.”
http://news.sciencemag.org/health/2015/02/goodbye-chronic-fatigue-syndrome-hello-seid
The IOM committee concluded (quoting from page 227 of the report):
“the term “chronic fatigue syndrome” can result in stigmatization and trivialization and should no longer be used as the name of this illness.”
Debate and survey’s should really in my view be around a replacement for Chronic Fatigue Syndrome which, even in the UK, is used by the vast majority of medical professionals.
Ask patients if they disagree with the above conclusion reached by the committee. I bet nobody will. That is the discussion you should be having.
We are talking about an evidence-based replacement. SEID is the IOM’s proposal to replace Chronic Fatigue Syndrome.
Inflammation of the brain and/or spinal cord has NEVER been proven as a key factor in this condition causing the symptoms we experience. It was originally a clinical hypothesis – this is also set out in the report and the source can be located online.
Doctors like Byron Hyde who claim ME = brain injury, and that inflammation can be determined by SPECT, should put up or shut up. He states he has diagnosed hundreds if not thousands, so why has he never produced any research or even documentation?
If people only considered for a moment what is was Ramsay was describing, they might well associate with the many symptoms – as I did 16 years ago and still do – but even Ramsay does not mention inflammation and neither was he able to provide research to prove it:
http://www.cfids-me.org/ramsay86.html
I use that source online as it takes the evidence direct from Ramsay’s book. Take a look at the symptoms. Ramsay could ascribed fatigue to muscles – this was never proven either – though I always hoped someone would return to that research.
Consider ‘Emotional Lability’ for a moment. It never gets mentioned today. One has to ask why – is it because people would rather not think that some part of this illness might prompt an emotional response? I wonder. I sure as heck suffer from it.
But the Institute of Medicine were charged with considering if Chronic Fatigue Syndrome needed replacing. Ramsay himself is on record as saying, he wished they hadn’t introduced Post-Viral Fatigue Syndrome, and you might say it was that which then developed into CFS.
Surveys should be based on whether or not patients feel a) that CFS should be replaced at this time, and, b) if SEID is a better evidence-based alternative.
Also from p227ff. of the IOM report:
“In considering what name would be most appropriate, the committee turned first to “myalgic encephalomyelitis” or “encephalopathy” (ME), which was the name most commonly supported in the public comments.
The committee, however, was concerned that the term “encephalomyelitis” is not well supported by the evidence and that there is substantial controversy surrounding the two versions of this name. Neither version conveys the full complexity of this disorder.
The committee notes that many of the other names that have been proposed focus on particular organ systems. Others suggest particular etiologies, such as immune or infectious, for this disorder that are not yet proven.”
“The committee was convinced of the value of creating a name that conveys the central elements of this disease, a practice for which there is much precedent in medicine for disorders whose etiology or pathophysiology is not yet well understood.”
“Systemic exertion intolerance” captures the fact that exertion of any sort—physical, cognitive, emotional—can adversely affect these patients in many organ systems and in many aspects of their lives. The committee intends for this name to convey the complexity and severity of this disorder.”
Thanks, Firestorm I totally agree with your analysis. The survey seems to me biased too.
And as others have pointed out, I feel that the name is just a minor aspect of an overall great report, which has so many points which could be used for constructive advocacy rather than fighting publicly about a name (which is anyway only intended to be used for 2 – 5 years).
I agree that there are some issues but several surveys (including the one on my Facebook page https://www.facebook.com/canaryfilm/posts/523755074428897) have all shown similar results.
I think it’s important to remember that it is possible to hold different opinions about the report, the criteria, and the name. I am on the whole enthusiastic about the report, lukewarm on the criteria, and very, very concerned about that name, primarily because the response thusfar from doctors to SEID has been derision.
Good points on the different parts of the study.
I’m really surprised about the doctors, though, since the panel was mostly derived of doctors.The doctors on the Committee included Nancy Klimas, Cindy Bateman, Lily Chu (an MD before she became ill), Benjamin Natelson, Martin Lerner, Peter Rowe, Cynthia Mulrow, Michael Shelanski, Theodore Ganiats, Charles Cleeland and Betty Diamond are all MD’s.
Then the report went through a review that included at least five more MD’s…
I assumed the name was created by MD’s for MD’s! I would note, though, that the ME/CFS MD’s are not the ones the name is targeted to – I think it’s targeted to the uninformed MD’s. Would they respond differently to this disease if its was called SEID? That’s the big question. They’re the ones we really need to know about but they’re also, of course, the ones that are hardest for us to get at.
A couple of non ME/CFS expert MD’s were on the committee but they don’t REALLY count- we need “virgin” MD’s 🙂
The comments on this post surprised me – they suggest there is also strong support for the new name. Maybe some people are having second thoughts? Completely new names are probably rarely going to be very popular at first.
I was pleased with the criteria given concerns and study evidence that adding more symptoms might bring in a subset with increased rates of psychological disorders. I don’t think it’s set though. I think we need more studies. At least it’s based mostly on study evidence this time – not just a consensus.
We’ll see as time goes on.
“The comments on this post surprised me – they suggest there is also strong support for the new name.”
Cort, do you have the ability to let members of the committee know that there are many of us who ARE pleased (or mostly pleased) with the work they have done? How do we get that message out?
“Cort, do you have the ability to let members of the committee know that there are many of us who ARE pleased (or mostly pleased) with the work they have done? How do we get that message out?”
Great question! I hope too that we find a way to get that message out!
Caroline, here is great place to express your appreciation: http://www.groupcard.com/c/52DxE5A73Uz
Thanks Rachel, I have already signed the card 😉
I agree with you, Jennifer.
To me, after being sick for over 26 years and being subjected to the ridicule and mistreatment of several members of the medical community, I want respect for what we’re all dealing with day in and day out for possibly the rest of our lives. I don’t believe the name SEID will help us gain respect or better treatment, unless you’re one of the lucky ones who lives nearby and can afford to see one of the few specialists.
After the report came out I was very disappointed in NBCs report. Possibly the following day, I saw another report from KOAT news. They’ve taken the story down but it’s on YouTube:
https://www.youtube.com/watch?v=hhCU53t24VU
I encourage everyone to watch it. The name SEID will do nothing, IMO, to change the way we are viewed by the general public.
I also receive Medscape newsletters. In their recent rheumatology newsletter there was a report on SEID. The comments, many from doctors, were terrible.
When “CFS/ME A Primer for Clinical Practitioners” came out, I made copies for each of my doctors. My neurologist practically laughed in my face when I handed it to him.
How many docs do you think will actually read the entire report???
It was obvious from many comments on Medscape that several of the health care practitioners did NOT read the report, only the name and definition.
One woman commented in the past week that she asked her doc what he thought of the new name. He said, and I’m paraphrasing, that every PCP will look at the name and say right, CFS. The patients will keep suffering the same stigma. What was the point of getting a name that’s even worse. Crazy.
Sorry…wanted to clear up my above post.
Re the Medscape comments, I shouldn’t have said, “The comments, many from doctors, were terrible” though many did fit that description.
There was a lot of back and forth, as is common when commenting. One physician who is also sick with ME/CFS/CFIDS/SEID
let the others know how debilitating this illness is as well as others who deal with the illness directly (caregivers, etc.)
Just wanted to clear that up.
BTW, I’m not getting notified of new posts by email, either.
Also Cort, thank you for the work you’re doing.
Well said, Firestorm! You make a number of excellent points. I personally took the above mentioned survey and I found it to be quite biased. It seemed as though the central question was, “How much do you dislike the name SEID?”
I think we should have a quick survey asking people if they have been able to read and understand the report in full.
Because from reading comments online – forums, Facebook, and Twitter – even from some of our most known advocates, I very much doubt it.
Heck I am only now on a more careful read-through (though I have read specific sections more than twice).
For example:
Did people read the list of considered names garnered from members of the public that the committtee actually considered? See page 57-60 and box 3.2.
Listed there are ALL the names including I think every single one people have since suggested.
As previously noted here and elsewhere, the primary conclusion of this committee was to abandon CFS and replace it with a new name: SEID.
BUT, do people here realise that ‘ME’ could exist either separately or as a sub-group within SEID?
“Historically, however, the diagnostic criteria for ME have required the presence of specific or different symptoms from those required by the diagnostic criteria for CFS; thus, a diagnosis of CFS is not equivalent to a diagnosis of ME.”
But the name itself myalgic encephalopathy or encephalomyelitis was rejected by the committee in part because it couldn’t be held to account for all people diagnosed with CFS.
Bateman herself said on Twitter that ‘ME’ could exist as a sub-group, or at least I took this to mean, specific symptoms pertaining to what people believe ‘ME’ relates i.e. pathological inflammation of brain and spinal cord or myalgia, or indeed specific ‘pain’.
Who is to say what will happen down the road?
But research strongly argues that the identified core symptoms that now form these new criteria are adequate for diagnostic determination.
Let future research determine the constituent parts of the pool.
Cort,
If they (IOM) knew the name had to be SEID if there was any chance of changing the name from CFS in the U.S., then why bother having a patient survey? Why does their name have a better chance than NEID? NEID covers more issues related to this disease than just exertion. So is it really more important to IOM that they submit their choice of name or after waiting all these years for a much needed and wanted name change to seriously consider patient advocacy? That is the question.
Finally, your survey was flawed because 4550 viewed it and only 550 took it. I personally tried twice to take the survey and it was non responsive to my choice. In other words I could not take your survey. I am betting many others shared this same experience. Also, the late addition of NEID and yet the near equal number of votes it received compared to ME leads me to believe that if that choice had been available from the beginning the outcome may have been different.
Was this survey done just to pacify those patients who complained about the name? It sounds like you are saying thanks for your input, but it doesn’t matter. We either do it IOM’s way or we will just stick with CFS. Incidentally, ME really isn’t recognized by the CDC or NIH in connection with CFS in the U.S. any way, so not certain why we are injecting it like it is with the ME/CFS name. That in itself would be a name change for the U.S.
As much as I loathe the name CFS and do not see SEID as much of an improvement, it’s the research that is important to me. So unless IOM is really serious about our input and it is really going to make a difference, don’t waste our energy on useless surveys, just get on with the business at hand; funding and research.
🙂 Say like it is Bette!
Really the part of the survey that should be focused on was the second part – after NEID was entered. Since adding NEID made such a difference I think we can really discount the first part.
There were two reasons for the survey. One – it’s a topic a lot of people are interested in and two – I wanted to see how it turned out. I would have rather SEID ended up being higher: I don’t think the DHHS is going to be willing to take on ME or NEID – I could, of course, be wrong _ I don’t know them and I’m not in contact with them. I just don’t think in this day and age they’re going to accept either one. On the other hand patient input is more and more appreciated in this day and age as well.
Is the DHHS is interested in surveys like this? My guess is that they are actually. My guess is that having the patients behind a name is actually a pretty important thing. I don’t think its the most important thing but I think it probably does fit into their calculus. I would be surprised if it didn’t.
Lots of people had problems with the survey – and I apologize for that. On the other hand 550 people or so did take it which is a pretty good number. My guess is that it reflects the general opinion.
I’m sure there are better ways to do this survey as well. I’m just an amateur 🙂
I agree, though, lets move onto research and funding! – and I will – stay tuned for what I think is a major blog on that topic in a couple of days.
I would like to add Guillain-Barre Syndrome to the list of infections listed by OM.
Cort-
Obviously you are far more informed about ME that I am, but I was surprised by your opinion about the maintaining the name ME because ‘It’s main weak point is that it describes a condition – inflammation of the brain and spinal cord – that is not, at this point, known to be present in ME/CFS.’
What then does this imply: http://www.newscientist.com/article/dn9342-first-official-uk-death-from-chronic-fatigue-syndrome.html#.VOqFI2dQ2uA
Were these findings incorrect?
Della Mae Johnston
It was present in that person and it may very well be present in many people with ME/CFS. But in order for the scientific community to base a name on a disease that finding needs to be shown to be true in the ME/CFS population at large – and one patient is simply not enough to do that.
The neuroinflammation studies underway may show that and if they do – that will be a different story indeed.
The technology is just now being developed, by the way, to show the kind of inflammation in the brain that some people is causing ME/CFS.
Thank you, Cort for your reply.
I realize that this finding applied to only one- deceased- person. However, at the time, the importance of the finding seemed to be less about inflammation having being found on autopsy than that the cause of death of an ME patient had finally been attributed to the disease. I believe that it was thought that this fact would somehow lend more credence to the seriousness of the disease, and help those debilitated by it to be able to apply for and receive health plan benefits.
Since no further autopsies seem to have been performed (or at least reported on) on ME patients, its fortunate that new techniques are being developed enabling studies of the brains of live patients.
I wonder how many of your readers have had brain scans that have revealed damage?
Given, as Cort suggests, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is likely to be the main player in town I would like future surveys to compare it with Myalgic Encephalomyelitis/Systemic Exertion Intolerance Disease.
Neuroendocrineimmune Disease would have been a much better name choice over Systemic Exertion Intolerance Disease. Neuroendocrineimmune Disease would reflect the seriousness of the condition and the dysfunction of the nervous, endocrine, and immune system caused by this illness. Whereas, the new name change SEID, or (Systemic Exertion Intolerance Disease) only reflects the problem with fatigue and exertion which causes sufferers to flare. I don’t think it is much of an improvement over Chronic Fatigue Syndrome. People will still make fun and trivialize the severity of this terrible illness. We need a serous name for a serious disease.
“Demanding, touchy, ungrateful.” Are women letting their survival issues be defined by medical authorities based on fear of how their human needs are perceived and expressed? Guys with AIDS got some justice after some strong actions. I do not know if the decision makers in medicine and government at that time were mostly males, or if they are now. In too many ways men are still making decisions about the value of female bodies and minds, or the epidemic of gender-based crimes and medical abandonment would be front page headlines daily. Hidden gender bias in women themselves might be a factor in some of this controversy. ( Of course a small percentage of males in our patient groups are being dismissed too.)
Names, languaging and labeling play a great role in social perception of human worth and resource allotment.
Were there not a few changes of names in the beginning of the AIDS crisis? How did the name finally change to AIDS? How many in the advocacy groups publicly stated they were afraid that the medical establishment would label them “demanding, touchy, ungrateful”? Unconscious gender bias even among women may pay a part in some of the responses above and outside this forum.
I do not recall hearing anything like this as an issue among the male AIDS patient groups (historical research needs to be looked into to verify this); look at what was achieved when mostly male patients gathered together and fought for their common good instead of how they were being perceived. ( — In the US and developed countries, at least.) They did not hesitate to be assertive or aggressive.
People with AIDS fought long, hard and loudly with whatever medical perceptions existed, changed those perceptions, and prevailed by far in getting funding for research and treatment, functionality and recovery to the point in 2010 when Dr. Klimas made her famous statement in the New York Times (paraphrasing the quote: ” … given the choice, I’d rather have AIDS.”).
Given the choice of names, I’d rather have NEIDS, or plain M.E., in that order. There is a vintage cartoon about women viewing another woman receiving an award; the cartoon thought balloons above the audience’s heads read: “How dare she?”. Continue to ACT UP loudly, and never be afraid of what others think. Guys generally assert; we must too, to get quicker action.
Great dialogue, and hope it continues louder and clearer.. ty always to Cort
Becca, I can only speak for myself, but I don’t think gender issues are at play in my comments. During the early days of my diagnosis, I discovered Cort’s blog, Rich Carson’s ProHealth website, and Dan Moricoli’s online ME/CFS Community. It was on Dan’s site that I met and interacted with a number of men with ME/CFS from around the world. I think it is for that reason that I have never thought of CFS as a “woman’s disease.”
I agree with you that we need to be assertive and to advocate for ourselves. For the last year I have been seeing a psychologist who specializes in working with chronic pain and chronic illness patients and one of his primary objectives has been to help me be more assertive and direct, especially when interacting with medical professionals. In fact, it is that new found assertiveness that gave me the confidence to post my potentially unpopular opinion on this blog! 😉
But I also think there is a difference between being assertive and being very demanding and difficult to please. When my brothers and I were growing up our mother would tell us, “You can catch more flies with honey than vinegar.” If we come across as shrill and defensive, we will only hurt our cause, not help it. And as I said before, I am concerned that we not discourage or drive away the very physicians who are working so hard on our behalf.
Oops, Rachel, posted my reply in the wrong place; it was not directed at you. My post quoted from a previous post and was meant to address the segment of our polite community that understandably wants to avoid divide and conquer tactics and scaring scarce help away. But AIDS patients got nothing until they acted up in all areas of life. Plenty of media controversy there… Ad hoc education. Plenty of flies were caught despite the vinegar; every situation is different and requires a different approach. AIDS folk were validated and supported decades ago. No “Philadelphia” movie or “Angels in America” play has ever been created educating the public about our community’s travails. Why not? And how will we ever get what we need unless some people (it’s not for everyone) keep visibility growing by getting in some authorities’ faces about these issues in a very effective way? Multiple perspectives and activist dialogue coupled with political action raise everybody together. Who defines what, for mostly women, is shrill and defensive? Assertiveness is not aggressiveness. It is only practical to use all approaches and come back together with respect, unity and mutual support, more politely loud and persistent on all the valid issues raised in this thread. Effective assertiveness gains respect with medical authorities; I have seen this many times.
Didn’t we just have this conversation?
Maybe my favorite comment so far 🙂
I think that the word “imflammatory” could safely be added. Seems the increase in certain cytokines and other chemical events indicative of the same is well-documented but, again, it may be lacking in sheer patient numbers and unquestionable scientific controls. We can “feel” all we want, but if evidence of a brain inflammation is lacking, then the “E” in ME is incorrect by the scientific definition of the word. marcie
Might as well add ‘inflammatory’ to depression as well then 🙂
ME is an unsuitable name as a great deal of people with a CFS diagnosis do not have ME, hence no brain inflammation. ME got it’s nane from solid scientific evidence – it’s victims all having entero viruses the original cause of ME and how it got it’s name and WHO classification. There were not only physcical exams done on these patients in the 1930’s to the 1960’s, but there were also autopsy reports which showed the inflammation. It was even entered into the ‘bible’ of neurology at the time. It was all the solid evidence that got it it’s WHO classification. The problem we have now have is that a large portion of people diagnosed with CFS do not have ME and do not and will not have the abnormalities found by Ramsay. ME needs to be left alone. It would be far wiser to call CFS/SEID Neuroendocrine immune disease.
Della, Cort is not saying there is no inflammation of brain and spinal cord, we all know, it’s pretty obvious we have that type of inflammation..The IOM needs more validation/Studies to confirm this so they can justify the name ME.
Why I believe NOW is the Wrong Time to Fight about the Name
Many but not all of us with ME/CFS are angry and disappointed by the name SEID. I agree that we need a better name. Just not now… I think we need to think strategically and long range to take best advantage of the IOM Report NOW, and postpone the name fight till we’re talking about a permanent name. SEID is but a temporary name we can ride until more research can be used to choose a permanent one.
If you think the name stinks, I might agree. But it has one thing that no other name proposed will have at this point–credibility based on scientific validity. And it will only be changed when there is sufficient biomedical evidence to pick a permanent name that really works for us. So for now I am willing to husband our resources, hold our fire and suck it up on the name. Why? I’d rather win the war than a public battle over a temporary name!
We certainly didn’t get everything we wanted from this report, but we got a whole lot of what we need: Validation that we have a real, medical disease, that its prevalence in the US is incredibly large with the majority of us neither a diagnosed or treated yet and that most medical schools and texts don’t teach about it at all. And most importantly, that PEM (or as I like to call it PEC for collapse or crash) is the central feature of the disease. Plus a clarion and unequivocal call for more research funding!
If we become oppositional about the name now, we will step on our own message and, I believe, reduce our chances to get the kind of research funding we need to prove the nature of our biomedical disease! The IOM committee calls for a review in 5 years or sooner if we have new research findings. We have so many small research studies showing biomedical markers that need to be followed up with well-funded large studies to be accepted scieget those and new research studies done now. Let’s turn our attention and fight for “massive compensatory research funding” to discover biomarkers, treatments and a cure. We can shame the medical establishment into providing what we need now much more effectively if we are not fighting about a name that be willingly changed with needed research.
The IOM looked at 100 names and given the paucity of medical evidence, this was the best they could agree on unanimously. The fact that the IOM Report is unanimous all its particulars is very powerful and will serve us well. Many of those on the committee were our people: Drs. Lucinda Bateman, Lily Chu, Nancy Klimas, Lucinda Bateman, Ronald Davis, A Martin Lerner, Benjamin Natelson and Peter Rowe. We fought to get them on the committee and need to support them now.
Likewise, reviewers who had input included Drs. Jose Montoya, Daniel Peterson, Charles Lapp, Susan Levine and Rudd Vermeulen, all people working diligently to help us. We should back up our people on the committee and those who reviewed on our behalf who no doubt fought for us in deliberations.
We have a proud and well-earned reputation for being a difficult patient community! We had no other choice and I wish we could have taken to the streets to oppose the way we were treated for so many decades. We need to keep up the good fight but now a different tack is required for us to be successful.
If you’re thinking about having a public fight about the name now, I caution that our own ME/CFS community may well have an internal fight about it as well. It will distract us from what we need to do now which is to seize this moment when the medical establishment finally acknowledged that we have a serious, debilitating physical disease! And to do this, we should back up our people on the committee who no doubt fought for us in deliberations that resulted in an empowering unanimous report.
We’re free to divide ourselves into camps and have a name fight now, of course. And it will capture all of the media attention and overshadow the valuable parts of the report we need to publicize, lobby and advocate for now. The media love nothing better than conflict. They’d rather cover conflict and dissension in our ranks than report on actual medical content. Just think about how much of political campaign coverage is about the horse race and how little is about the issues. Is this what we really want now?
Or we could unite and speak with one voice, back up our own experts, publicize the powerful findings of the report, advocate and lobby for “massive compensatory research funding,” take advantage of the clout that will come from many more diagnosed patients and live to fight another day for what will be the best permanent name we can come up with!
I think it is wisest strategically and politically for us to fight as a united community for desperately-needed research that can lead to biomarkers, treatments and ultimately a cure. I hope we decide to suck it up on the temporary name for now and fight for the best results for our health and that of so many others.
Excellent points, Esther! I wholeheartedly agree!
Spot on Esther! Thanks for posting.
Well said Esther! (Can I borrow some of it? :))
The big battle is for funding and research and treatments which will lead to the discoveries that produce the next and most fitting name or names which I imagine there will be little dissension around (but who knows???)
We definitely do not, in my opinion, want to spend too much energy on the name issue that we could use getting more funding. Hopefully that will not occur.
We can easily have a good name and lousy funding – look at fibromyalgia. The name doesn’t get us anywhere that I can see with regard to funding.
Funding must be our main goal…If we get that the name will take care of itself. If we don’t get it it’s business as usual….and a lot more suffering than would occur otherwise.
Thank you, I totally agree. The last thing we need now is public fighting about the name. Making surveys about this in forums of the patient community – okay. But making surveys to produce a report afterwords to gain media coverage?
I really hope people think about this again.
To me the name is the least important point honestly (no doctor I know ever took M.E. seriously, so I don’t understand at all why so many people want to stick to this name). As Esther said, we should focus on the many good points in the report to move forwads – more funding, more education of doctors, better diagnosis etc.
Well done. Totally agree with you 🙂
By the way, I did an interview for The Tennessean, the largest newspaper in Nashville, and found the new name made it easier to explain the disease. I said I worked for four hours spread over a whole day doing impassioned, advocacy writing the day before. Therefore I couldn’t sleep, had a terrible night and woke up exhausted, aching, with a stomach problem and diarhhea. This worked to explain systemic from the name and it was also pointed out to me by a doctor from the IOM committee that it also demonstrated PEM because an inability to sleep after exertion is only seen in SEID, not in healthy people or other illnesses.
I was worried about my cognitive problems affecting the interview after little sleep, but the reporter had been made aware of them because she talked to Dr. Clayton before me. I commented midway that I was amazed because I thought I was doing pretty well but shortly thereafter couldn’t come up with the number of years I’ve been married, 34 in July my husband told me later. I did a demonstration of cognitive dysfunction.
So systemic refers to all of the symptoms we get from any kind of exertion, not just fatigue.
Exertion refers any kind of effort, stimulation or stress, including physical, cognitive or emotional exertion.
Intolerance means even the smallest amount of activity can lead to systemic repercussions ie PEM or PEC ie crash or collapse.
And Disease means it is not just a collection of symptoms but a biological dysfunction that leads to multiple symptoms.
I found it easier to explain than any of the other names. I thought it helped me get through the nature of our suffering more easily, actually. We’ll see how the article comes out though. And this is just my evolving take on the meaning of SEID.
Esther, when the article is published please be sure to share the link. And thank you for speaking out on behalf of all of us!
Well stated, Esther. Maybe it is wise to “suck it up” for a truly temporary name. The same old political, medical, media, social and gender divide and conquer games are being played against the patient community that existed in the 1980s and 1990s with AIDS, and now the stakes seem to be greater. Reminders of how patients and advocates are being played are always useful as context for any discussions about our survival. Still, the AIDS folks got most of what they needed, with maybe a strong validating named included. The same patient unity would be useful now as existed back then; AIDS successes evolved with plenty of media controversy and demonstrations of all kinds, too.
I only took the earlier survey; I would have liked having NEID as an option. While I don’t love the name SEID, I do appreciate the IOM’s reasons for coming to that term–and that a group of scientists understand PEM. During the press conference I felt like they were going to bat for our community, and I am grateful. And again, while I don’t love the name SEID, like one of the previous commenters, I have found that the name makes it easier to explain the illness. At the same time, I have preferred ME for the serious scientific sound of it, so I’ve found myself emailing or posting on Facebook ME/SEID.
The provisional name should be NGNY (no good name yet). Or LOEFN (lack of evidence for a name). Yes, I’m being facetious but there is no good name for this illness. The good studies we need to understand its pathophysiology haven’t been done yet, or have involved such small numbers of patients as to yield only anecdotal information We need money for research. Then we’ll have a basis for an accurate name.
SEID is an improvement on CFS but it’s a mistake to name an illness for any of its symptoms, albeit a universal one. My hope is that if the term SEID will be used, people refer to the acronym only as is the case with illnesses like ALS. Most people know what the illness is but not what those letters stand for.
And so we wait some more.
NGNY – I love it! and agree with it….It’s where we are – so let’s not worry about it too much….It’s simply the way it is.
The problem with CFS is that too many separate conditions/ illnesses can be lumped into one group.
M.E. is a far better definition. It certainly does effect the brain and spinal column plus the muscles. If fatigue is the main problem per se, then perhaps there needs to be a clear division between the groups, and surely that’s what the Canadian criteria sought to do.
Main problems with ME are brain fog, cognitive difficulties, balance problems, pain, involvement of the autonomic nervous system, combined with the myalgic part – problems with muscle pain, post-exertional malaise, problems in the mitochrondria and uptake of energy and discharge of waste leading to a build up of lactic acid and pain – especially the day after the day after.
I see the endocrine and liver and other problems due to to the systemic problems – probably stemming from the onset (via a virus?) and the involvement of the autonomic nervous system.
I would hate to see M.E. jettisoned, even though it is a problem in that it’s been called “yuppie flu” and is generally equated to those who are swinging the lead. It doesn’t help that psychiatrists have got a firm hand on the treatment here in the UK.
Too heavy a focus on chronic fatigue as a condition rather than a symptom has led to misdiagnosis and the lumping together of many different conditions. M.E. is clearly a separate and well-defined illness. I’m incredibly surprised to see the author of this article state that the involvement of the nervous system is not proven. Tell that to me and those of us struggling with central nervous sytem plus autonomic system illness combined with muscular dysfunction – I have ME it just so happens that because of this I also have CFS.
Instead of getting further along you appear to be going backwards. We should be fighting for ME to be taken seriously.
Regarding disease naming and the reported trend away from naming diseases after people, the CDC just discovered a new tick-borne virus and named it after the sick individual’s place of residence. The Bourbon Virus. There are no definitive rules. If an illness is accepted by the CDC and/or NIH, the name will reflect that acceptance. We’re not there yet.
As for this community fight, it would be much easier to move forward together if the patients who like the new name would accept that the patients who don’t like the new name are coming from a good place. I’ve seen too many commenters assume ill-intent on the part of those who unhappy with the name. The attitude being: “They’re just being negative.” “The complainers just want to complain.” “Their complaints have no merit.” Personally, I’ve gotten enough of dismissive attitude from friends, family and doctors who don’t believe I’m really sick. This kind of sentiment doesn’t belong inside the CFS/ME community. If we truly want to work together towards research, acceptance and treatments, we must respect everyone’s opinions on the matter.
A significant portion of the patient community has valid criticisms of this name. To move forward, we need optimists, pessimists and realists. Every good organization has both dreamers and pragmatists. Every good movement has people who focus on what could be and people who agitate and say “what we have is not good enough and we won’t be quiet till we get there.” The AIDS/HIV community was difficult and loud and insistent. They got it done and are still doing so. There does not need to be unanimity, but there does need to be a basic level of respect.
This illness is very heterogeneous. It seems that a lot of the valid criticisms are coming from the severely ill part of the patient community, like myself. I’m in an dire situation. I needed progress on treatment years ago, not in 5 years. I can’t afford to wait. Some in the community may be progressing positively now, have access to doctor or doctors, have a large support network, you name it. A little progress is OK with them, because they will continue progressing or are in a tolerable state. For some patients, the new definition and diagnostic criteria fit their illness to a tee. For others, like myself, the CCC describes their condition, but the new criteria do not. Along with sheer luck, the main reason I sought out a CFS doctor was the CCC definition. If only the IOM or Fuduka criteria were out there, I might never have gotten the diagnosis and known what to avoid doing. It took over 3 years, exploratory surgery (which made me significantly worse) and 25-50 doctors to get there. I’m completely housebound after my last relapse and might lose doctor access. Some patients have no insurance, no doctor, no home. A little progress is not enough for them or me. In other words, my situation is not other patients’ situations and vice versa.
Can we work together to make progress? It all depends on if there’s respect and acceptance of opposing points of view. Mutual respect leads to the ability to find common ground. Mutual distrust and disdain leads to chaos, gridlock, resentment and people tuning out. The way forward is up to us.
My comment above has been posted as a reply to Lisa. It wasn’t intended to be, but should have appeared as a general comment beneath Cort’s blog.
When Tom posted a survey on Phoenix Rising the results were as follows;
http://forums.phoenixrising.me/index.php?threads/poll-which-name-is-better-chronic-fatigue-syndrome-or-systemic-exertion-intolerance-disease.35522/
Myalgic Encephalomyelitis is not an option worth consideration. The only published evidence relating to autopsy, revealed Dorsal Root Ganglionitis in one out of the FOUR patients, but the Dorsal Root does not form part of the spinal cord, as Dr Charles Shepherd once again explains:
“There is, at present, no pathological or neuroradiological evidence to show that people with ME/CFS have an encephalomyelitis, and that incudes the findings from the post mortem research group that I am a member of.
Like everyone else, I want to establish what the neuropathology of ME actually is – but there is no point in coming to flawed conclusions about cause unless there is sound scientific evidence to demonstrate what you are claiming.”
Do please read his further explanation and abstract from the autopsy findings of which he was a part:
http://forums.phoenixrising.me/index.php?threads/new-name-for-me-cfs.35440/page-2#post-557298
I do hope that others are as willing as I am to see post-mortem tissue banks formally established for work with ME/CFS. A feasibility study was completed in the UK in 2010, and I sincerely hope if we see fund-raising efforts for such infrastructure in coming years, this community will turn out in support.
Only research is going to change the evidence base and improve our situation with regards to understanding and treatments. A situation I think everyone wants at the end of the day.
All this focus on nomenclature is really to my mind clouding the issue at state. The IOM report deserves this communities support. I do really see it as official recognition for our disease.
Firestormm, you need to do more research going back many years. Because it does indeed exist. It is how ME came into existence. Dr Hyde found it, Dr Ramsay and fellow doctors did it. I have seen the papers. It requires extensive research to find it. Back to the 1930’s and 50’s. Scientific research papers.
Thank you.
Please note the medical information I quoted was from Dr Charles Shepherd and not myself – though I do of course agree with him.
He and a small team are the only people that carry out autopsy work on people with our condition that I am aware of: please correct me if I am wrong and indicate other post-mortem research of this nature.
I have Dr Ramsay’s book in front of me, the one referred to here: http://www.cfids-me.org/ramsay86.html and he mentions nothing like what you are referring to.
Indeed it was Acheson who coined the phrase (see below): and much of the work was done based on clinical examination and hypothesizing – no post-mortem work involved.
And Hyde? Well I mentioned him above. I can’t locate any PubMed research from him that proving his stated claim that SPECT scans relating to inflammation or even ‘brain injury’ are relevant to encephalomyelitis in people with ME.
Hyde claims that it is simple to identify ‘inflammation’ and that if we don’t have it, then we don’t have ME. Well – I would ask him to prove his science.
Publish his work. These claims have persisted for far too long and he is potentially denying a great many people from a means of diagnosis that should be available.
Why hasn’t anyone else copied his method if it is so easy? Makes me suspicious in the extreme.
What we have needed for the past 50 years are larger post-mortem studies, and studies revealing pathological evidence for inflammation to justify the cause of our symptoms – and in turn justify the name. Not assumptions and speculation.
But see also page 28 of the IOM Report we are discussing, which provides a reasonable summary of the history:
“Myalgic Encephalomyelitis
Beginning in 1934, a series of outbreaks of a previously unknown illness
were recorded around the world (Acheson, 1959; Parish, 1934-1980,
1978).
The illness was initially confused with poliomyelitis, but was eventually
differentiated and became known as “epidemic neuromyasthenia”
(Parish, 1978).
The term “benign myalgic encephalomyelitis” was first
used in the 1950s to describe a similar outbreak at the Royal Free Hospital
in London (Wojcik et al., 2011).
The details of each outbreak vary, but in general, patients experienced a variety of symptoms including malaise, tender lymph nodes, sore throat, pain, and signs of encephalomyelitis (Lancet, 1955).
Although the cause of the condition could not be determined, it appeared to be infectious, and the term “benign myalgic encephalomyelitis” eventually was chosen to reflect “the absent mortality, the severe muscular pains, the evidence of parenchymal damage to the nervous system, and the presumed inflammatory nature of the disorder” (Acheson, 1959, p. 593).
The syndrome usually appeared in epidemics, but some sporadic cases were
identified as well (Price, 1961).”
Note: cause could not be determined and ‘presumed’ inflammation from Acheson above.
Does inflammation play a role in our condition? Yes. I believe it does, quite strongly as it happens. But not in the way of encephalomyelitis.
Indeed I would suggest you take a look at Jarred Younger’s webinar from Pandora recently: https://www.youtube.com/watch?v=bFwAyrb5p34
Or read the one of the reports from Simon McGrath relating to ‘sickness response’ e.g. here: http://phoenixrising.me/archives/25148
The Japanese study on 9 subjects – whilst really very interesting and in need of replication – puts me more in mind of ‘encephalitis’ than encepahalomyelitis.
And it was viral encephalitis that kicked off my descent into this crazy world of ME.
Go figure!
Yes, well the report is defining this condition as one exacerbated by exertion yet has rejected the objective 2 day CPET test. Why is subjective “worsening of symptoms” after exertion any better than equally scant evidence of inflammation occurring in the brain?
Thanks.
It did not reject the 2-day test. Indeed much of the evidence-base relating to PEM was based on the 2-day test and Betsy Keller was on the panel.
I believe what you are referring to is that the panel do not recommend the test as necessary for diagnostic purposes i.e. to be used by GPs in clinic.
Perfectly reasonable in my view. Do you know how much these tests currently cost? And would you want such a test to be a core requirement for everyone with this disease?
If you don’t ‘pass’ the test, you fail? If you are severely affected, you have to climb onto the bike and suffer the consequences?
I suggest you read chapter 4 relating to core symptoms and criteria in the report, especially PEM on page 78 and objective measures on page 82 – featuring 2-day CPET.
The report did suggest CPET testing for welfare/benefit claims if applicable see one of the tables in the report – I forget which one – but again surely cost would be a factor especially if you are needing to claim welfare.
A friend of mine in the US said only last night, such testing was billed to her friend at $1500 I think it was. Not cheap by any means for a test that needs careful recording, and reports written.
Or for a test that has I suspect only limited relevance for an individual, by which I mean: 6 months later how relevant is the result?
Personally, I want to see more research into CPET and ME/CFS to measure response rates against other ‘fatigue’ illnesses e.g. MS, Cancer, Sjogren’s and Depression etc.
I am not yet convinced CPET provides more than simply a measure of disability. What I mean to say is, that I am unconvinced yet that PEM is unique to our condition – not that it needs to be – but it would be great if in some measurable way it was.
I think you’re missing a lot of nuance in the illness population. Not everyone is a “fatigue” patient and certainly not every estimated 1MM in the US are “severely affected”. And not every “expert” thinks that this is a “fatiguing” condition. And most importantly, not everyone is looking for “inclusion” into SEID. I, for one, would gladly leave this waste bin diagnosis behind. I’ve seen 3 relatively well known experts (Klimas, Komaroff and Natelson) and they can’t agree on my diagnosis. You are way over simplifying the dynamics of those caught in between Lyme, Mold Illness and other similar conditions. $1500 is quite reasonable for proper diagnosis, me thinks. And if you think the average clinician is going to read this document and thoughtfully assess it…
As far as I know, this Canadian doctor diagnoses ME/CFS by excluding all other possible diseases that cause the same symptoms. Haven’t we read posts about Dr. Hyde (possibly on PR) saying he doesn’t even know how to read the SPECT scans he orders?
I believe the name should be Myalgic Encephalomyelitis because
My Muscle
Algic Pain
Encephalo Brain
Mye Spinal Cord
Itis Inflammation
Myalgic Encephalomyelitis sums up the chronic condition perfectly so why play around with changing it?
In the UK the term ME is seen by Drs merely as an attempt by pts to give it an organic-sounding name. They allow it as a sop. A nod to the history of the condition without changing their perception that it’s really CFS. Lay people are perhaps more impressed. With nothing other than tiny studies we wont get it accepted.
A name change alongside a reasonable report (from the summaries I’ve seen) by a prestigious body seems a big step forward to change perceptions. If we clamour for a name we like it’ll lose credibility as just another sop thrown to us compared to a name given by the medicos. Harder to dismiss.
We are sensitised to psychy sounding words for fear of being dismissed again and so dislike ‘intolerance’. However ‘Systemic’ and ‘disease’ are organic sounding. It gets at the defining symptom which few realise and gets away from fatigue, that dreadful trivialisation. I say go with it with the expressed hope of something more definitive arising. Maybe they’ll be different names for subgroups in 5 yrs?!
Well said, Alban!
I’m not sure how popular the name ME would be in the UK. When it was first talked about (and when I was first diagnosed with it) in the 80s it was also commonly known as ‘yuppy flu’. I know that, as a result, I kept quiet about my diagnosis. That is why I would like something different. NEID sounds ok to me.
The obsession with the name is doubly frustrating, not only does it deflect from the key aspect of the IOM report which is shifting the paradigm of diagnosis from a failed ‘exclusionary’ process to an inclusinary and deliberative process of ‘differential diagnosis’, but the whole debate about the name is taking place in abstracted misappehension.
To repeat a post from the Paradigm Change blog:
>Modern disease naming is complex, it’s not a question of just plucking a name [that sounds good] out of the air, every name has implications for classification that are difficult to assess without familiarity with a range of classification processes; paragraph 2.2.4 of http://www.who.int/classifications/icd/ICD10Volume2_en_2010.pdf?ua=1 is essential reading as is http://library.ahima.org/xpedio/groups/public/documents/ahima/bok1_030837.hcsp?dDocName=bok1_030837 <
SEID may not appeal to our individual senses of what 'our' disease is, but SEID works in classification and naming conventions, and most importantly it underwrites a 'differential diagnosis', rejecting SEID without a replacement that meets these conditions is very, very poor strategy.
I’m more worried About the IOM SEID criteria than About the name.
We want funding and better/more research?
Does anyone find it as troublesome like I do that the criteria don’t have exclusion criteria?
To be frank: my sister has chronic Major depression and she fits SEID and its criteria pretty well too !
@E,
Exclusionary criteria is exactly what needs to be avoided. Outside of psychiatry the vast body of modern medicine achieves sound diagnosis via a differential process. No one would think it sensible to define influenza as ‘not a cold’ but that is what an exclusionary process does – it is actually a failure of scientific thinking and is an Albatross around patients’ necks.
I’m surprised that someone with Major Depression as their only disabling illness would meet the SEID criteria – activity is usually indentified as beneficial in most cases of depression where no other factor is involved. If someone who happens to have Depression is actually unable to exert themselves without PEM like consequences or the other impacts listed in the SEID criteria, then by definition they would have co-morbid SEID. I don’t see any problem with that.
For what it’s worth, I didn’t respond to the survey because my preferred name wasn’t listed. It’s a close run thing, but I’d probably have picked Myalgic Encephalomyelopathy. I’d have picked this for the following reasons:
1) It has the same initials as Myalgic Encephalomyelitis – ME. ME is widely familiar here in the UK and has long been preferred by the patient community. Most people don’t bother to call it by it’s full name, so making a small change to that shouldn’t be a problem for doctors, patients or indeed the general public in terms of recognising that we are talking about the same thing.
2) It cannot be argued by anyone (except the psychiatric community) that Myalgic Encephalomyelopathy is medically inaccurate because all it says is that there is pain in the muscles and that there is something wrong with the brain and nerves. It’s true that not everyone has muscle pain, but I’d say that this is sufficiently ubiquitous for it not to be a problem in the name.
3) As far as I’m aware, the first doctors to properly describe and document the illness were Dr Alexander Gilliam of the US and Dr Melvyn Ramsay of the UK. The first called it ‘atypical poliomyelitis’ and the second ‘myalgic encephalomyelitis’ or ME. Whatever has happened since, I think said doctors deserve some respect. They documented a physical illness with clear neurological signs, despite not having access to the same kind of tests as are available now. Rightly or wrongly, Ramsay assumed these neurological signs to be the result of inflammation… and his name stuck (at least here in the UK). Personally, I think he was probably right about the inflammation, since an infectious illness was clearly involved in the cases he documented. So I’d still be happy to use Myalgic Encephalomyelitis. However, I can accept that there may be neurologists out there who feel that Myalgic Encephalomyelitis is misleading for one reason or another. Hence Myalgic Encephalomyelopathy – which should at least get their attention and hence a proper work up for patients.
4) The main reason why the name ME has been disparaged by the medical community here in the UK is due to the preference of the psychiatric community for CFS. Let’s face it. It suited their purposes to call it CFS because it was a symptomatic name and it didn’t appear in the ICD. And they very nearly won. It was only after a massive battle that even the compromise of ME/CFS was accepted here. So I don’t think we should underestimate the power of such folks. Giving them another symptomatic name like SEID to play with will not help our cause in any way at all. Here is just one example of how destructive such psychiatrists can be: http://voicesfromtheshadowsfilm.co.uk/2013/karina-hansen-is-a-severely-ill-danish-patient-who-was-forcibly-taken-from-her-home-update-may-2013-9th/ More here: https://valerieeliotsmith.wordpress.com/2014/07/01/karina-hansen-prisoner-of-denmark/ They make what they are doing sound good by admitting that perhaps there is a physical element to the disease, but they still clearly believe that psychiatric intervention is the best way forward. I honestly dread to think what such people will do with words like ‘Exertion Intolerance’. We do not need another symptomatic name.
……………………………………………..
At the end of the day, the real matter at stake here is the recognition of ME/CFS as a profoundly debilitating physical illness. That’s the message we need to get across. And that’s why the patient community (together with some doctors) here in the UK have previously fought so hard to keep the name ME. Myalgic Encephalomyelitis has been classified in the ICD as a neurological illness since 1969. To be honest, I sincerely doubt whether the name would ever have been questioned in the UK if it had not been for the psychiatric lobby. Any inaccuracy would simply have been dismissed as an archaic quirk.
My perception as an ME patient in the UK is that ME as name is a huge disadvantage. Patients prefer it to CFS, sure, but only because that is such a hideously inadequate description. I also agree with several of the comments above that unless we get a name that bears some relationship to the emerging science, we will not have moved forward. I’m all for NEIDs. Systematic Exertion Intolerance is just CFS by another description. Having said that, I think this has the potential to be an important process, and one in which we need to act with both determination, political acumen AND tact.
OK, enough! I am getting really fed up with all this picking away about a name. Or is it me that is missing the point?
I don’t care what they call the disease that has blighted my life since 1995. I do care – and am thrilled about all the research that is going on. I have no problem with SEID especially since I first saw it expressed as Systemic Exercise Intolerance Disease and the exercise seems to have been replaced by ‘exertion’. After all dragging myself out of bed by the hand-rail I had fitted is hardly exercise to most people.
It is a temporary name I’m sure and one that gives away little about the totality of symptoms so why bother getting het up!
For once we have a lot of research happening. Can’t we just be happy with that?
Agreed!!
Definitely. I do have some sympathy with all this worry about what our illness is called, but it’s really the stigma that came with it at the time I was diagnosed and then persisted.
I was diagnosed with Myalgic Encephaloymyelitis 16 years ago, the stigma of ‘Yuppie Flu’ hit me no differently, and I don’t regard myself as any different to people with ‘Chronic Fatigue Syndrome’ written down in their notes as their first diagnosis.
In my time with this illness, my notes comprise both names used interchangeably – it all depends on the one the physician at the time uses himself, be it ME or CFS.
But the stigma persists.
This new criteria gives us an opportunity to get behind our condition and have it recognised like any other as a legitimate stand-alone disease.
One that does not exist as a ‘diagnosis of exclusion’ and one to which doctors should be feel comfortable diagnosing.
My various comorbid conditions are distinct from my main illness of ME/CFS and I think these criteria help reinforce that.
All the best.
Even though, I would have preferred NEID, over SEID, if the new name eliminates people who claim, or are told they have ME/CFS, but who actually don’t have the illness, I guess it is a step in the right direction. If exercise makes their fatigue and symptoms disappear, then they don’t have ME/CFS. The fatigue they are experiencing is most likely caused by depression (down-regulated, unmotivated, poor immune response). Exercise gives them a lift; boosts them up, stimulates their immune system and makes them feel better.
People who truly have ME/CFS are already suffering from an over-stimulated immune system. This hyper-immune response is what makes them feel so very unwell. They are up-regulated, wired, their immune systems overreact and are in a chronic state of overdrive. Because exercise boosts the immune response even further, stimulation from exercise will only cause ME/CFS sufferers to flare (crash and burn) making them feel even worse. So, if this name change eliminates people who are suffering from depression from being diagnosed with ME/CFS, I guess we have made some progress.
i totally agree with Esther and others- i did initially back the mE adovcacy campaign but having seen the report they need to get that in some respects they were wrong – understandably fearful given our history- and back the report albeit with reservations. it was never going to be 100% perfect but it is a step, a very positive one at that. They really need to have some humility and change tack.
Zip, I totally agree- I too donated to MEadvocacy (expecting the worst about IOM), and I hope very much they recognise the many good points of this report and won’t bring too much negativity into the discussion…
I’ve been thinking about the concern that our community is in disagreement. While we may seem to be a contrary bunch, public rants flourish in all communities, however tightly or loosely they have formed. It’s the “nature” of social media (which seems not of Nature at all!) Maybe it’s just our times; maybe we don’t have to worry about that aspect of this discussion.
I agree – there’s dissension on blogs and Forums all over the internet…it’s not really unusual.
I completely agree, Carollyn. I think this discussion is being conducted in a very respectful manner. I have seen plenty of online forums where people curse and YELL at one another, call each other nasty names, and launch very personal attacks on those with whom they disagree. None of that is going on here and I’m very grateful. Props to Cort for creating a forum with healthy, open dialog!
Nancy Klimas – who was on the Committee – just had her say on the name. She closed the door on myalgia but appears to leave the window open, interestingly enough, for encephalomyelitis.
“At this point in time, there was not going to be a perfect name. The public testimony did not move in that direction, nor did the expert review. What could be said was that the current name was harmful, and the committee did not think it reasonable to complete their main task (a clinical case definition) without moving away from Chronic Fatigue Syndrome.
What would you have picked? I agree it’s hard to capture the complexity and the severity of this illness with an acronym, but I do see it as a move forward.
Unfortunately, in an evidence based review there was not sufficient evidence to support the M in Myalgic Encephalomyelitis. If there is a better pick, now is the time to rise up and say so, if only in response to this report.
That’s my two cents” – Dr. Nancy Klimas
I like the fact that SHE is saying, “If there is a better pick, now is the time to rise up and say so, if only in response to this report.”
We all deserve a right to express our opinions to rise up and say what we believe.
Cort, I think it’s fair to say we have been doing just that, “rise up and say so now” in picking a name! I think there has been excellent dialog on this topic amongst ourselves on your blog and if “they are listening” then our intelligent input has not been for naught. By the way who is “public testimony”?
Those are two very precious cents!! Thanks for sharing them Cort… – I like how Klimas has reservations about “M” alone, but not “E”… It’s clear that “muscle pain” is not ubiquitous, and what’s more, “E” alone can account for it… If you suffer from brain and spinal cord inflammation, myalgia can well be a symptom (or not) . So, “M” is redundant! Let’s simply reverse ME into EM (for encephalo-myelitis, it’s long enough to begin with to be broken down in two parts…)
That is already what it is in French, by the way (EM). Not that this is an important concern for the IOM (let alone the HHS or the CDC…) but I have to point it out: you have no idea how SEID sounds ridiculous in French! The word “exertion” does not exist in French. “Effort” is the closest word available. Imagine how that would sound in English: “Systemic effort intolerance disease”! A real joke!! I beg you, on behalf of hundreds of thousands of francophone “EM” sufferers in Canada and Europe, NOT to adopt “effort intolerance disease”!!!
Seriously, now that we have a tiny insight on Klimas’ view, I would love to hear why Ron Davis also leaves the window open for ME…
Dr Lucinda Bateman said similarly on Twitter – as I refer to above in my reply to Jen Brea’s comment.
Even Dr Davies might have been said to lament the lack of evidence for encephalomyelitis as I said in the quote above from Science.
Bateman went further – see comment above – in suggesting ‘ME’ might exist as a sub-group i.e. that ‘inflammation’ of the spinal cord and brain could if proven in a significant patient cohort, or myalgia.
Who knows where the evidence may take us?
I repeat. This was primarily about dropping CFS and replacing it with something that recognised the Systemic nature of the illness, as its legitimacy as a Disease, whilst noting the core symptom: Intolerance to Exertion.
Dr Bateman in her posted statement which I am sure you all have read, also said I believe that the people to canvass and petition with alternate views on the name – though good luck sourcing any evidence – would be your Govt.
That’s me done with this name business. I think this community is seriously in danger of losing the plot and largely because some advocates simply ‘do not like’ the fact IOM got this contract in the first place.
Don’t look a gift horse in the mouth.
That said, did anyone catch Lenny Jason on the radio Sunday night? He was talking about patient engagement specifically over this IOM report I believe.
Well , at least we know that ‘encephalopathy’ is a fact.
http://med.stanford.edu/news/all-news/2014/10/study-finds-brain-abnormalities-in-chronic-fatigue-patients.html
I present with a pos ANA, so there is also an autoimmune factor. I present with natural killer cell dysfunction. I hurt. Maybe this is just a downstream bonus of the encephalopathy.
SEID? I don’t love it but I don’t hate it, either. CFS, I hate. I’ve had doctors smirk at me and scream at me when saying CFS. I see 2 good points about the name.
One is I have long felt it is the response to exertion, even mild exertion at times, is the defining symptom for this illness. I believe that, in itself, weeds out a lot of fatiguing illnesses that are often misdiagnosed as CFS and it gets around the issue of unscrupulous stakeholders (ie: disability adjudicators and insurance companies) who want to cling to the notion this is psychological and deny benefits for disability and treatment based on that. The psychological disorders that can mimic this in terms of fatigue do not have the symptom of PENE. I believe, if educated properly, the delayed response to exertion we see in PWME is a big step towards proper diagnosis. The lack of exclusions for so-called ‘mental illnesses’ is of concern to some but I believe proper assessment of exertion intolerance is sufficient to guard against the problems they see with that. After suffering decades with this disease, 2 of which were spent working as an RN in diverse fields, I can say I know of no other disease, physical or mental that has this symptom as a feature. Is there still room for abuse by the medical community and insurance companies? Yes, but I don’t think any name would stop those who want to keep perpetuating the mythology. As the evidence about our disease continues to grow, they will become much more marginalized and science will move on without them.
The second positive aspect of this name is the word, “systemic.” As a medical professional the word ‘systemic’ carries a lot of weight with me. It clearly implies a physiological response in one or more systems of the body is at play either as etiology or response to an insult to the body. I do think it’s a word people in medicine understand to imply physiological systems.
I have cautious hope this is a change that will bring about more respect and credibility for the illness we are battling.
Excellent points, Minnie!
I like “Systemic” and “Disease” and Exertion Intolerance does describe what is more specific to this illness and stands out from other illnesses. The IOM did what they were tasked with.
I don’t care or ME at this point as it really has not served the rest of the world well where very often it is treated as it depends too much on a psychiatric component.
I do like the diagnostic criteria as at age 17/18 I would have been diagnosed instead of early 40’s using CDC criteria when I finally started getting swelling of my lymph nodes. I do like CCC but getting a Primary or even a specialist in one fields be able to look at all that criteria and diagnose is impossible. That is why it can take years because you are going from doctor to doctor bringing all your past history with you until you test positive or are diagnosed with something in the extensive criteria. This criteria notes it would have a specific illness onset which MS and Lupus, etc. don’t have. If something like Lymes fits that does the patient have either issue under section 2? Probably not but if they have cognitive issues then do the test positive for Lymes? If yes they would probably get a Lymes diagnosis and not SEID. You might have both but then when was the illness onset for SEID? If only one onset and not two then probably not both. Lymes if they test positive, SEID if they don’t.
Also, I know other criteria would say, is there another illness that can account for the symptoms and if YES, then diagnosis would stop and patient did not have CFS which makes no sense as the IOM pointed out, in healthcare you can have multiple illnesses/diseases.
I like Ramsay’s as when new discoveries on illness is made the name does not have to change. Or Bell, Cheney, Peterson (BCP) disease for the Lake Tahoe outbreak researchers?
Like others pointed out, encephalopathy has been proven at Stanford.
we should rally behind the name and work with it. At least its a start and hopefully a lot of research could back up the name. Of course it could be better, but its being called a systemic disease is pretty good place to start and I feel like all the debating about the name is not helpful to our cause. We should try and inform people what exertion induced really means, that would help us more than the name fight at this point. (and no, I don’t love the name either, but its a step in the right direction and that’s something I think?)
For those of us who would like to express our appreciation to the IOM committee members, an online Group Card is available. It was started on February 14th and will be available through the 28th. Here is what Sasha from the UK who originally posted the link had to say:
“Scarecrow has kindly set up an e-card that each of us can sign to thank the IOM committee for working hard for us – for a year, unpaid! – and coming up with a powerful, groundbreaking report that has federal clout and that we can use for advocacy.
The committee included familiar, big names from the ME/CFS world such as Dr Nancy Klimas and Dr Ron Davis but no-one who saw Dr Ellen Clayton, the committee chair, in action at the launch of the report, could doubt that even the newcomers to the field were thoroughly on our side and anxious to give us the ammo we need to get diagnosis, funding, and respect.
Sign the card here: http://www.groupcard.com/c/52DxE5A73Uz
There may be bits and bobs that you want to criticise in the report – the name is proving contentious, of course – but a thank-you card is not the place for that! Please stick to words of thanks and appreciation in your message on the card.”
Yawn. Can we please move on from the name debacle and focus on research.
Select an abbreviation that is easy to pronounce and spell. the name should also have family doctors to consider the symptoms that are most severe ; I am thinking of brain fatigue.
I think one should name diseases after the patophysiology rather than symptoms. If I had chosen a new name then it would be along “NEUROIMMUNE VASCULAR MITOCHONDRIAL DISEASE”, or “NEUROIMMUNE ASTHENIA GRAVIS” as proposed elsewhere. Use of names of persons or geographic locations is advised against.
I think it is important to stick to MYALGIC ENCEPHALOMYELITIS (ME) because changing the name of established entities is the worst thing to do, because it will cause confusion at many levels. Most people will not be aware of the fact that the name has been changed, and will think of it as a new (highly unknown) condition. One will lose the link with earlier research, documents, information, etc. If names are changed back and forth, then people will not find relevant data if they do not know older versions of the name, or if they forget to search on all versions of the name at the same time.
Right now I perform searches on PubMed with the following in the search field:
(“chronic fatigue syndrome”[Title] OR “myalgic encephalomyelitis”[Title])
adding a third term, would make the search exuberantly complicated. Remember that I am probably an exception. Most people will only search on one term, and that way important results would not turn up in their search.
There is of a halflife of 45 years of medical “truths” that are false (Poynard T, Munteanu M, Ratziu V, et al. Truth survival in clinical research: an evidence-based requiem? Ann Intern Med. 2002;136:888-95.). Introducing a new term in this environment would have a very long time ahead before it penetrates the clinical medical care.
I am open to that in the future new scientific discoveries of the patophysiology and aetiology will lead subgroups. When knowledge have advanced so far, then it will probably be straight forward to name the subgroups based upon the identified aetiology. Until then I think it is too early to think about changing the name.
I have seen discussions about whether ME or CFS is on the ICD-list or not. Here is a snaphost of what turns up on the WHO site when one searches for G93.3 in ICD-10 version 2010:
http://me-foreningen.se/images/icd-10-g93_3.png
For example the following turn up:
Akureyri’s disease
Icland disease
Benign Myalgic encephalomyelitis
Neuromyasthenia (epidemic) (postinfectious)
Chronic fatigue syndrome
Postviral fatigue syndrome
I really think we do not need any more names for this disease. The names that already exist I think must be enough to satisfy all kinds of tastes.
Stop debating about a name, we need funding and new specialists to examine this diseae. When they found (if they ever do) the cause or mechanisme a new name will be born.
This thread has 129 comments (till now)
And by no other choice, this disease have became one with the most educated patients ever.
God knows how many doctors we had to teach during a consultation.
Yet we keep seeing these divergent opinions and argueing about things that just doesn’t go any further.
There must be a way to get all those patients together and more, to call attention. Do something better than just argue. Perhaps even start organizing studies. Start sending e-mails to every important person we can think of. Wathever. Anything that can be done in massive action.
For example, god knows if a politic decided to raise milions of dollars to SEID he would win thousands of votes in one strike. But does a politic knows it?
Thanks again for another interesting post on the name issue, Cort.
But I’m starting to think that in focusing on which name patients prefer in all of these various surveys by you and others, we’ve lost sight of a more important and urgent question, which is: does the name matter enough for us to pressure anyone to change it? Or by trying to change it, do we undermine a report that we want to use to leverage all sorts of benefits for ourselves such as funding, respect, and so on?
You may be aware that MEAdvocacy.org has just had a blog post published in the Washington Post, calling for the IOM report to be rejected:
http://www.washingtonpost.com/news/to-your-health/wp/2015/02/25/new-chronic-fatigue-syndrome-report-doesnt-help-us/
It’s not clear even how many of MEAdvocacy.org’s own supporters take that position: a member of their committee has stated publicly on a forum that they haven’t polled them since the report came out and therefore don’t know their views on the issue. The many positives in the report took us all by surprise, of course.
I think it would be good to take the temperature of the community (as best we can, given that all pollers will attract their own particular audience with their own particular biases) on this kind of issue.
Meanwhile, I’m very much looking forward to reading your upcoming post on what positive advocacy uses we can make from the report.
PUT ON A COMMENT I HAVEN’T SEEN. CORT, DO REALLY READ ALL THESE???
Hey fellow sufferers, do you guys ever think that while were arguing over the name, the FDA, CDC, and the NIH, are just stretching back putting there arms behind their head, and putting their feet up on their desk?
The name has not mattered!!!!!! We are not taking seriously because the organizations that represent our illness don’t take us seriously, FDA, CDC, AND NIH.
FDA does not approved Ampligen.
CDC continues to have CBT, AND GET as treatment, and has not modified medical school information on this illness.
NIH continues to fund this life threating illness at a rate of $2.00 per person, per year.
These are the people who guide the Doctors, its a trickle down. If we don’t get respect from the FDA, CDC,AND NIH, we will not get respect from doctors.
We need funding, funding, funding!! Come on NIH put your money where your mouth is!! That will convince me. FDA approve the only drug in the pipeline, and CDC for the love of GOD PLEASE take down CBT, AND GET, as therapy. Then I will believe you.
Hi all,
SEID is a big improvement over ME. ME makes me cringe every time I say it and doctors and public alike often associate it with a “psychological” illness here in the UK.
I took part in a B cell trial this week at UCL in London (part of the Rituximab research and working closely with Norway) and the doctors and resesearchers there thought SEID will help a lot. So there you go.
Trust ME is not gonna help. I am surprised so many think it will. Personally I like Ramsays but SEID will do for now until more is learned in research field and it is certainly a lot better than ME or ME/CFS.
Interestingly the name they are using for the B cell study I just took part in is Myalgic Encephalitis/Chronic Fatigue Syndrome not “myelitis”.
Tim
Hello-
I have had ME/FMS since 1987. At the time, I was so relieved to have received a diagnosis- a name!- for the baffling constellation of symptoms that had put the brakes on my busy and productive life.
This was only 5 years after a disease formerly known as ‘GRID’ (Gay-Related Immune Deficiency), ‘Gay Cancer’, ‘Community-Acquired Immune Dysfunction’, ‘Gay Compromise Syndrome’- and ‘Four-H Disease’ (Homosexuals, Haemophiliacs, Haitians and Heroin Addicts- and sometimes- ‘Hookers’) had begun to be known as: AIDS. In France and Europe, it was christened ‘SIDA’. When the cause of AIDS was clearly confirmed to be the lentivirus HIV, the disease began to be known as ‘HIV/AIDS. When I was diagnosed with ME, my family doctor had me tested for HIV ‘just to be sure’ as some of the symptoms overlapped between the two diseases. After all, the term ‘Acquired Immune Deficiency Syndrome’ had once been universally applied to those conditions where the immune system has been compromised by either known or unknown pathogens. In chapter 4 of his book ‘History Of AIDS- Emergence And Origin Of A Modern Pandemic’ Mirko D. Grmek discusses the naming of HIV/AIDS.
To be absolutely clear- I am not suggesting that there is any pathological link between ME and AIDS. However, I’ve always felt that ME shared a kind of ‘shadow’ history with AIDS. ME was once sneered at and was dismissed by being called the very derogatory term, ‘Yuppie Flu’. But because AIDS clearly killed people- and ME apparently did not but rather, ‘merely’ made made people tired (confirmed by the name CFS), and because the gay community mobilized so efficiently to demand action and the ME/CFS community did not, ME was largely ignored. The amazing activist group ‘Gay Men’s Health Crisis’ was mainly responsible for demanding action from the health community and for forwarding and securing the rights of AIDS patients. ME has never had such organized advocacy. But maybe now is our time.
So, what’s in a name? Names are extremely important. The response by the ME community reflects this. It is not because we’re ‘demanding, touchy, and ungrateful’ or because we’re ‘defensive and difficult to please’.
Although the name ‘AIDS’ really only reflected a symptom rather than a cause, it still gave the world and its sufferers a rallying point. To me the terms ‘CFS’ and ‘Systemic Exertion Intolerance Disease’ are rather like the terms ‘Yuppie Flu’ and ‘GRID’- they invite dismissal. They diminish the full scope of the diseases they were coined to describe. They invite derision.
Myalgic Encephalomyelitis- ME- is, at least, familiar without being overly specific. Neuroendocrineimmune Disease( NEID) may be more specific and more accurate, but is new and has no history. Either would be more acceptable to me than ‘CFS’ or ‘SEID’.
When I saw the new name, I wondered if I had been misdiagnosed with “ME” by the UCLA Radiology Dept. in 1993 using Brain Spect. Dr. Jay Goldstein sent me there and he spoke of ME, my Brain Spect results, and “CFS”. The new name leaves out SO much of what is and goes wrong with me it is astonishing.
Psychiatrists have done an enormous disservice to patients. Of the assortment of them doctors sent me to in the early days, I got varying diagnoses from somatoform pain disorder, bio-medical depression, psychotic disorder (office mistake!) , “paranoid disorder?” (on chart notes because I “failed to make a 2nd appointment” – I hadn’t liked the unfriendly fellow), to a very quick assessment that “…it is not a psychiatric problem because there is too much going on at a cellular level..” The last one was someone I knew personally and had worked with in the same clinic so he knew me – the only break I got from the group of them. (I got copies of all my medical records and chart notes. )
I would not hold out hope for any acceptance or clarification from the psychiatric community.
I also saw 43 doctors before I got to Dr. Goldstein. I was black and blue by then from insults, laughing in my face, being dismissed, “..are you still here??” from UMN clinics, and fortunately, the kind few who simply said they didn’t know what was wrong. One rheumatologist in St. Paul said to stop looking for that one-in-a-million doctor who could help me and just decide if I could live with it or not. Our county coroner said he had never seen/heard anything like my medical problems and that “if I get you, I will save your blood for 20 years”. That would not have been long enough.
This is not a forum for our horror stories, but until the constellation of problems we face are taught (regardless of name) in medical schools, the great majority of us are not going to have help. I have hung on through these years because I believe in scientific research and problem resolution. There are answers to be found. I look to the researchers, not the medical profession, for real help. Dr. Goldstein was charming when he smiled and said to me (as I raised endless questions), “Finer minds that yours and mine have tried and failed to figure this (all) out.” I wish he was still in practice.
I think the new name is too simplistic and exclusionary to be worth implementing. The primary care doctor I have been going to for 7 yrs. laughs and says he doesn’t believe in “Chronic Fatigue Syndrome”. If I go in and say the new name, he will laugh some more. ( I had 2 good doctors in OR, but doctors in our little Las Cruces, New Mexico are clueless. )
I get excited and optimistic about research news, any drugs that the national doctors are using, etc. as we all do with this, but not this name. I HOPE others of you here are right!!
Hello, Connie-
Thank you for sharing your thoughtful insights with the rest of us. I expect that most of us who have been long in the trenches have encountered the same attitudes and suffered through similarly damaging and traumatizing experiences with the medical profession.
I was thinking about that when reading about Dr. Atul Gawande’s documentary ‘Being Mortal’ about to be aired on PBS. Two quotes from him really made clear how (most) physicians respond as they do to those of us who’s conditions baffle them:
‘Nothing is more threatening to who you think you are than a patient whose problems you can’t solve,’ Gawande says.
‘Medical schools do a great job teaching students how to fix people. But they aren’t so good at preparing doctors for what Dr. Atul Gawande calls “the two big unfixables” — aging and dying.’
I know that ME isn’t generally thought of as a ‘terminal’ condition, but it (and other poorly understood ‘chronic’ conditions) certainly fall within the medical profession’s description of ‘unsolvable’. Dr. Gawande states that the medical profession isn’t prepared to deal with aging and dying- the ‘two big unfixables’. From our experience it is clear that there are actually ‘three big unfixables’ the third being unsolvable chronic illnesses. Interesting, isn’t it, that to even a fine doctor and researcher like Dr. Gawande we’re all but invisible. But maybe we could somehow persuade him to consider us for his next book or film 🙂 ‘The Land Of The Living Dead’. ‘When Death Doesn’t Kill You’. ‘A Couch With A View’. ‘Not Lifting A Finger’. ‘Bankrupt At The Energy Bank’.
Ah, well. Even so, I’m really looking forward to watching this documentary- its apparently very well done and, ME or not, we are all aging and we are all going to die. And all knowledge is empowering.
If anyone is interested, here is a link-
http://www.nextavenue.org/blog/being-mortal-pbs-documentary-takes-life%E2%80%99s-end
Della Mae, Thanks for the information on the PBS documentary – I will look for it and watch.
As regards doctors, I believe there are many kind, thorough, and compassionate doctors out there. The good ones I have worked with were wonderful people and I expressed deep, deep appreciate to them for their efforts and empathy for their frustrations. I also know there are many quite arrogant physicians who are also very dismissive of any information they did not learn in medical school. When people are suffering and in pain, I do not believe that under any circumstances it is appropriate or acceptable for them to deny the existence of (your) pain or to ridicule patients.
My husband is a retired clinical psychologist who worked for years in the psychiatry dept. of our state medical school, created and directed a longitudinal study to predict which medical students at entrance could predictably stay in rural practice settings (NIH cut funding for it in 1976 saying that physician distribution was no longer a political issue), and for many years at a VA facility and his experiences with staff physicians at the university and especially the VA were far too frequently horrid. He was always an unrelenting, stubborn advocate for good care for patients and was truly endlessly thwarted, challenged, and even told at the VA that he wasn’t a “good team player” for pushing for better, more comprehensive and timely care and not going along with what they got by with in terms of provision of care.
There were numerous doctors I saw who took him on personally in my appointments, even loudly laughed at him when he stated that my problems did not fit the diagnostic criteria for a psychiatric or psychological illness. He has never given up his quest for improved patient care and has been involved in retirement in improved nursing home care (wrote a book) and is now participating in developing a research design for evaluating the effectiveness of a mentoring program for third graders. He does not give up, used to see patients for as little as $10 in private practice if they could not afford it, and keeps in touch with patients who want to contact him in retirement.
Between his broad experience in the field with doctors, our experiences with my pursuit of diagnosis and treatment, and caring for my dying mother during multiple hospitalizations and nursing home care, we have seen a disproportionate number of doctors we would like to have had nothing to do with. Doctors are just people, but they have enormous influence and power over patients’ perceptions, delivery of health care or lack of it, and with Fibromyalgia, ME/CFS, PTSD, Gulf War Syndrome, etc., they can compromise your ever getting appropriate care by documenting a misdiagnosis that sticks with you in your records forever.
The good doctors are worth their weight in gold, especially in complicated and difficult circumstances. They truly rise to meet the occasion and deserve unending praise and respect.
Thanks again for the information.
Personally I find just saying systemic exertion intolerance disease to be very confusing. While I am aware of the reason behind the new name, I’m not sure that I will be stating this at a new Dr.’s appointment. Just by itself, (I feel) is going to put us in a position to explain what it is and now defend the reason for the new name. In reading literature I found that only 1/3 of Medical schools lecture on the topic of CFS and that only 40% of Med books even mention it. If we are still battling and or trying to convince uniformed Dr.s about an illness that started gaining recognition in the 80’s then officially recognized by the CDC in 1994, how is it that 30+ years later this new name is going to change their minds? In reference the the term “exertion” I also feel this is an injustice, as one can do absolutely nothing for days, but lay around, and still be in crash mode.
SEID is a huge improvement in conveying the confounding systemic complexity of this disease.