“It is clear from the evidence compiled by the committee that ME/CFS is a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients.” IOM Report
The committee assessed over 10,000 documents.
The title of the report “Beyond Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: Redefining an Illness” said it all. The committee spent almost a year and went further and deeper into the literature on ME/CFS – ploughing through over 10,000 documents – than anyone has before. Given that kind of effort perhaps it’s not surprising that they felt disposed to swing for the fences. Not only did they propose an entirely name – one with no connections to the past – but they also redefined how to diagnose it.
The Committee putting the report together contained many well known ME/CFS experts including Ronald Davis of the End ME/CFS Project and Stanford, exercise physiologist Betsy Keller of Ithaca College, ME/CFS practitioners such as Lucinda Bateman, Nancy Klimas, Martin Lerner, Benjamin Natelson and Peter Rowe and patient advocate and former MD, Lily Chu. Ellen Wright Clayton of Vanderbilt University chaired the committee and spoke at the presentation.
Six other members from Harvard, University of Miami, Columbia University and others made up the committee. A marketing consultant was involved as well. Reviewers of the report included many well known ME/CFS experts as well.
Important Report
Running well over 200 pages the report will take some time to get to. Dr. Peter Rowe, a Committee member, called it the best summary of ME/CFS evidence he had ever seen. Given the decades and decades of ME/CFS expertise on the committee, that doesn’t surprise me at all.
It’s a important report. It wasn’t just the NIH asking for this report: the CDC, FDA, AHRQ and Social Security Administration also asked for it and that means that whether they agree with the new definition or name or not they’re all, by default, essentially on board. The adage be wary of what you asked for comes to mind.
What they got are slimmed down diagnostic criteria based on the latest research, and a name that illuminates the core feature of this disease and destroys any conception of malingering. They got a name, that to my mind begs for more research – in particular more exercise e.g. exertion studies – to get at the “exertion intolerance” in it.
A New Name – A New Beginning?
“We wanted to move it away from this label that often elicits very trite comments, possibly intended to be humorous, like ‘I’m tired, I must have that too. Everybody’s had some experience of fatigue, but this is so much more than that.” Dr. Peter Rowe
Names are just so tough. Finding a name for the two websites I created was brutal, but naming a disease is something else. Ron Davis said the committee went through over 100 options and stated they really struggled with it. He didn’t feel they’d found the perfect name, but citing his struggles getting the seriousness of the disorder striking his son across to others, that it was essential to get rid of the chronic fatigue syndrome name once and for all.
““My son is sick with it, and when I tell people, they say, ‘I had that once,’ because they were tired once”
The committee proposed that chronic fatigue syndrome or ME/CFS or ME or whatever you want to call it, whould henceforth go by the somewhat awkward sounding, but nevertheless very descriptive “systemic exertion intolerance disease”
A new beginning for “ME/CFS”?
Fatigue is finally out and post-exertional malaise, i.e., “exertion intolerance” is in. Syndrome is out and disease is in – two substantial steps forward. With this name “ME/CFS” finally has the opportunity to be know by its core characteristic – an intolerance to – not a problem with – but an actual intolerance to – exertion.
The committee clearly put a priority on producing a very descriptive name. That meant naming it after a person (“Ramseys’s disorder”) was out, as was probably the crowd favorite, myalgic encephalomyelitis (ME). As good as ME was it simply did not describe anything close to the range of research findings in this disorder. Scientifically the members of the committee could not justify using it.
SEID says what it is – there are no mysteries involved. Any doctor should immediately understand the prime characteristic of the disease – an inability to exert oneself – and refrain from pushing patients too hard, simply by hearing it. Telling them to go exercise themselves out of this illness should disappear. That would help an awful lot of people.
This report makes clear that doctors saying the illness does not exist – something Ron Davis called “malpractice” – should eventually stop as well.
The name has the weaknesses that any entirely symptom-based name does. A little physiology would have gone a long way. A name like inflammatory exertion disorder would be so much better, but with no consensus on the core pathophysiological pathways in this disorder, it was probably inevitable that we would once again be a symptom-based name. At least this time – the symptoms are accurate.
This isn’t the end game for the name. The committee expects changes to come as the research proceeds and called for an overview in five years.
The proposed name is a step up, but what we really need is more research..
If it’s adopted by the DHHS and it’s hard to see why they wouldn’t given the prestige of the Institute of Medicine, it should do the job. This name, as awkward as it is, does focus the mind and it’s got the considerable asset of being accurate. To this day I cringe at telling people I have “chronic fatigue syndrome”. I’ll cringe much, much less with SEID. I’ll stop cringing completely when the name got some physiology in it.
The new name also makes it doubly clear that what we really need is research we can use to build the physiological foundation for a next name – the name that sticks. This name should help.
They Can Definitely Get It
As with the P2P project, the IOM project demonstrates that given enough exposure, people outside the field can and do get it about ME/CFS. The unanimous vote on the report, with no dissenting opinions given indicates that the ME/CFS experts and outsiders agreed with each other.
The video presentation of the report kept cutting out and I was unable to glean much from it. It was clear, though, that the Committee chair – a Vanderbilt law professor – got what ME/CFS was about and at times sounded quite passionate at one point stating
“I think this gives advocates a tool to “Act Up”…..We’ve given you the fodder – Go for it!”
Lots of Press
The media is picking up the story and running with it. My brother told me he heard the news on an LA station. Two long time journalists on the ME/CFS scene, Jon Cohen and David Tuller have pieces on ScienceDirect and the New York Times. Today Health says “Chronic Fatigue Syndrome is Real and Serious and Needs a New Name”. Carol Head was reportedly on NBC Nightly News.
The San Francisco Gate lead off with “Fatigue syndrome validated by influential group“. In the article, Dr. Jose Montoya, the leader of the Chronic Fatigue Initiative at Stanford University greeted the report stating
“The Institute of Medicine was able to come out and say this is real, it’s chronic and it devastates many lives…For 30 years very few voices were saying that and people were not listening. And now here comes an institute with such visibility and clout, saying those words…..(The report) has the potential to change the narrative of this disease”
Take the poll and tell us what you think about the name.
A New Name for MECFS
Next Up – A New Approach to Diagnosing ME/CFS
Useless.
ME defines the disease a lot better and already has considerable awareness.
Actually the problem with the name ME is that there hasn’t been much luck finding any real encephalomylitis in us. To neurologists and microbiologists who see really obvious cases of encephalomylitis it seems like we are pretending to have something that we don’t. I would be happier to have that part of the name go away since it is not a defining part of the disease. Immune dysfunction, dysautonomia, mitochondrial problems, post exertional malaise are all more obvious.
I don’t really like the name SEID but I like the report itself, all 200 pages, and I like all the attention that our disease is getting. I also like the fact that they are calling it a disease.
What I don’t like, and I can see I am becoming a part of it already, is how this is going to further divide the ME/CFS community- or rather the ME group from the ME/CFS group. I didn’t realize what a hot topic this was until recently. Are we now going to have a ME group, a ME/CFS group and a ME/CFS/SEID group? 🙂
Agree entirely, but I would be keen to join the fourth group SEID.
I fit the criteria, I love the word systemic, I understand we can’t list every symptom, to me it is forward.
Keen to see the progress from it.
It truly is a can of worms.
Jen and Claire I agree with you both! I so hope this will move things forward in a positive way!
Thanks Cort! Interesting times… There was some good stuff in the presentation today.
But isn’t exercise intolerance different from PEM, in that exercise intolerance means you are unable to exercise (can’t carry out the task) but PEM is a delayed patophysiological response which means you might be able to climb the stairs but you’ll be ill for days afterwards?
Hi Anne,
The E stands for exertion and refers to physical, mental or emotional exertion (or any other type of exertion there is?). For some people that could mean just the act of sitting upright. It doesn’t necessarily mean exercise.
Agreed – it doesn’t cover everything. You could stretch the definition of intolerance I suppose. Littler tolerance without pain, etc. There is both intolerance – and PEM. in ME/CFS – or rather SEID – more PEM than intolerance for sure….
“More PEM than intolerance.” Exactly. If PEM is the hallmark of the disease, why not focus on it instead of intolerance?
This new name could maybe cause further divisions, but I hope not. We’re all in this crazy, poorly-understood mess together. Let’s stick together. 🙂
Yes, sorry, “exertion intolerance” of course (not “exercise”).
But still, as you say, we have more PEM than EI.
Sorry, Anne, I may have been unclear. I strongly agree with with your point distinguishing exertion (or exercise) intolerance from PEM. I was responding to, agreeing with and expanding on the last point Cort made, that this illness is more PEM than exertion intolerance. That being the case, the name should reflect PEM, not exertion intolerance.
For example, even with my illness being as severe as it is, I can tolerate some exertion. Small exertion to be sure. But the price I pay for that exertion can last for days, weeks, or years! The price or the PEM is huge and disabling, more so than exertion intolerance.
Cort, you’ve got the name wrong in the poll – ‘exercise’ instead of ‘exertion’.
You’re not alone! Everyone’s doing it. 🙂
I’m glad I’m not alone – I fixed it thanks. I’m sure this is the just the first time this will happen…:
This is probably my one biggest heartburn with the new name. Exertion and exercise. These are easily confused, and I’m concerned that either of these terms will tend to make people think about physical exertion. In my mind, this risks obscuring the debilitating affects of mental processing, sensory overload, etc.
Agree.
Thank for posting Cort.
I totally agree!
More press…
http://www.philly.com/philly/health/HealthDay696278_20150209_Panel_Asks__What_Defines_Chronic_Fatigue_Syndrome_.html
Thanks
Cort, Thanks for covering the news as always…..
Agree with the person who said ME more clearly defines the disease. However, I would also go with Ramsay’s Disease followed by an explanation. I hate having something that no one can even pronounce.
Exercise intolerance is a symptom not the disease itself. Like Chronic Fatigue it makes it seem like an experience everyone has had often, – which ME is not!
I would like to see a simple name and would go with ME for the way it fits the disease. To me the neurological and immune issues are key and are left out of systemic exercise intolerance altogether.
Not exercise – exertion, OM.
There is a big difference between exercise and exertion. Important distinction, for sure. I’m not happy about the new proposed name, but it does have its positives, as Cort points out. Thanks, Cort, for this beautiful explanation of the IOM report.
Yes indeed – exertion is so much inclusive – glad they got that distinction right…
Thanks!
I don’t know, Cort. I don’t personally agree with most of this but at least there is some action. I don’t know if it will really help or just make it more confusing. I have been sick since 1986 and I can’t say this report makes me feel that good about changes. There is interest yes, but, it is very confusing to people to now change the terrible name to something else that just isn’t right either. ME, at least, is already known and CFS is also, although I feel like cringing also BUT this new name will be very hard to introduce now. Oh, my, what a terrible ride we all have had on this roller coaster. Sincerely, hipjaven@gmail.com
Having been sick since 1990, I understand your being skeptical about giving it a new name. And SEID is sort of a confusing, wishy-washy label for how devastating this disease can be. To the general public, words like “exertion” and “intolerance” still imply we’re not trying hard enough.
However, Cort’s article explains why this may be the best development I’ve seen in 25 years. The report and even the new name may convince a lot of doctors to take the disease seriously and patients better treatment. It also should lead to more research, more funding and more support from all those institutions that help other sick and disabled people.
Yes, it’s a pain to tell people you have SEID, not ME or CFS. Just tell folks that the name changed because things are happening: The medical community is taking new action against the disease–looking at the research and trying to understand the cause and its affect on patients.
That’s a great way to explain it. You can say the feds finally took a deep look at it and decided that the research indicates that the name was wrong – which is actually what happened.
I like it, good response. I can see people making cute comments like ” I have that also, totally hate the gym” or ” my husband ,the couch potato must have that”, in that vein….
If a name change will help make funds available for research and increase understanding in the medical community, I’m all for it. Snarky comments by the ” glib” I can deal with.
Totally agree about the general public’s response to this name. I would’ve preferred Ramsay’s Disease for two reasons: One, that it would disconnect entirely from CFS. ME doesn’t carry very good connotations in Britain & it would’ve likewise disconnected from that bc they will inevitably be affected by this report. Two, since we are still at the symptom base level, it would’ve avoided the need to classify it by a symptom rather than proven pathophysiology which I do believe will come. The power of this report is not in the name but in the diagnosis. I wish the name had been more nondescript in order to give more attn to the diagnosis.
Karen, that is a great way of explaining it! Very clear and concise.
It’s also important to remember this isn’t just about us and our individual situations, and not even about all of us together, it’s about all those teenagers and young moms, the working men and women, and all the people who will be afflicted with SEID in the future. To them, SEID will be the only thing they know, and this will be easier for them and their doctors to understand and diagnose. Hopefully, with the research I hope this will all drive, we might even learn how to treat it better!
If we don’t take this and run with it now as a positive step, we will only be going backward. It’s important for us all to band together, though, realizing it’s not perfect for any of us, but it can be terrific for all of us!
Maybe I’m just being crabby but, might people tell me to just slow down? What about my swollen glands, my fever, the times I wake up and am fatigued. Is sleeping too much exertion???
Exactly. Out goes the viral/immune related aspects of the disease. The only positive, is that it has Systemic and Disease, so I hope that’s what it will get shortened to, if it does get approval. However, I’m very concerned that the original ME is being replaced. It was tolerated and tagged onto CFS, by health authorities for years, to pacify the patients and patient groups, but at least there was a link to the historical and original Ramsay definition of the Royal Free Outbreak. Even CFS links back to the Lake Tahoe outbreak. They won. They’ve finally eradiacted any links with ME, which was what they wanted with CFS. You know, it might just turn out in our favour, but that’s my hopeful, optimistic side speaking. If the funding grants come in and we have large studies on people who aren’t just fatigued, yeah, then we may get somewhere, but for those of us who know the history, this is still ME, whether research is conducted on brain and spinal cord inflammation or not, whether it’s there or not, it described the original entity, with some objective signs (and peripheral weakness) and the findings at the epidemics, should have added to that and not turned into CFS, which was what caused such problems.
I like ‘systemic exertion intolerance disease’
but what if people see this as simply laziness? (Healthy but ‘lazy’ people are also ‘intolerant to exertion’)
How about ‘systemic post exertional pain’ instead?
I personally would agree with pain but somehow not everyone with ME/CFS experiences pain. Some people just experience weakness…
P.S. I usually call it chronic Epstein Barr. People understand that. People always know someone who has or has had that. Ive not been the same since the Epstein Barr and it feels like flare ups from that.
I wouldn’t be surprised at all if that ends up being one of the names for this disorder…
Cort,
I read the whole thing and learned a lot. Thanks for the great info. I did not see a link any where for the IOM report. Did I miss it somewhere?
Patricia,
That sounds like a good idea. I am seeing a doc. in Palm Coast FL (Dr. Dantini) I discovered through his lab analysis that there is more than one type of Epstein Barr. For many years I tested negative for Epstein Barr until Dr. Dantini tested me for all of the different types of it. Currently, my Epstein Barr is latent and another virus, HHV-6 is active. He says, he may get that one under control, and then the Epstein Barr may become reactivated. He believes that Epstein Barr is the main virus that started my chronic health problems. Anyways, although chronic Epstein Barr may explain how we initially became sick….it does go dormant after a while and can reappear later. BTW, I am not getting better after 8-9 mths. of anti-viral treatment. However, Dr. Dantini thinks I will get better eventually if I just stick with it.
There is enough confusion already with the ME/CFS definition, which is not all that old. No one gets it unless they have it or know someone that does. We are an island.
Glad lots more reseach is going on
CFS was on the news tonight they really have no idea.
Thank you for the excellent summary, Cort. I think the thoroughness and seriousness of the report and its source are good signs. The name, however…
Maybe it’s just me, but “systemic exertion intolerance disease” sounds as much or more like a bad punch line as “chronic fatigue syndrome.” Can you not see it applied in the standard jokes about couch potatoes, and overweight people at Walmart? To be taken seriously it must describe some pathophysiology. E.g. Neuroinflammatory syndrome of unknown etiology, or something like that (not making a serious attempt at a name).
What does “intolerance” mean? It could mean anything from “I just don’t like it,” to “it will kill me.” It’s not a medical term.
SEID sounds as lame to me as CFS. The use of ME/CFS, in my opinion, has more gravitas and is more descriptive, especially ME.
When I explain my disorder ( happily now a disease I discuss my neurological, endocrine, metabolic and central nervous system issues. I try to keep it physiological so that people will believe that multi medical systems are at play. I swear away from fatigue and certainly away from exercise. – my fear with this new proposed name is that it will be
Reduced to exercise intolerance period. Even NBC NIGHTLY NEWS. That featured Carol Head had a rheumatologist that said CBT and exercise help- did she not understand what the new name meant. One minute out of the gate and already confusion.
I highly respect ever doctor and researcher who comprised this panel and of course I would love to read the full report, but I just cannot get on board with this name, or saying I have SEID. I would have preferred ME until such time as we can name our disease by its origins rather than its symptoms.
I agree. I was shocked to hear Carol Head’s comment about exercise. I know I can only see things from my own experience, but I am completely unable to exercise. It only sets me back. I know some people do report being able to do some things in their energy envelope, but for most of us that envelope is so small and the consequences are so great if we misjudge, that I don’t see how this is helpful. It just confuses people who think we don’t try hard enough. I am convinced that most of us are in the boat we are in because we tried too hard. We continued to push when we had nothing left to push with.
Sorry, it was not Carol Head who mentioned exercise, but the NBC health correspondent.
I think SEID is a huge improvement. Healthy people often describe themselves as fatigued, but would probably never describe themselves as exertion intolerant. Let’s give the IOM credit. They worked hard on this!
Thanks again for keeping us informed, Cort. My first thought was that SEID is so much better than CFS (but then, what wouldn’t be?). But I also tend to agree with VLynx in that people will hear this and jokingly say, ‘yes, I have exertion intolerance too’, when in reality they just don’t like to exercise or get off the couch. Once again, the seriousness of our condition will most likely be trivialized by this name. I fear most people will ignore, or not understand, the importance of the ‘systemic’ implication. Maybe the medical community will do better with grasping that. And I also fear that if this name gets popularized, then any of us seen doing anything exertive (which, let’s face it, most of us have to do semi-regularly in order to survive) will be accused of being untruthful. Hopefully this won’t affect disability claims. As with many CFS sufferers, my problem isn’t that I can’t exert somewhat, it’s what happens afterwards. It will be interesting to see how this all plays out.
Until there is concensus on the cause of this disease or causes of it I think this is just a problem we are going to have to deal with. It think they probably produced as strong a symptom-based name as they could – but it is still a symptom-based name.
We need more research – I think I’ve said that a thousand times.!t’s like an ME/CFS mantra……:)
Systemic means affecting the entire body, rather than a single organ or body part. The use of this word won’t help us as it will keep us away from specialists and as is currently the case, GPs won’t want anything to do with us either as it is too broad.
ICD G93.3 (myalgic encephalomyelitis) already covers this disease and should have been validated by this fiasco, but that’s not what the NIH wanted and the IOM is the NIH’s pawn, so I didn’t expect much from this dog and pony show.
The most accurate name for this disease is: non-HIV AIDS.
I would prefer something like ” Chronic Exhaustion and Immune Dysfunction Disease” (CEIDD) which is similar to the existing CFIDS.
Anyway I think the immune aspect should be present.
Great job Cort!!. Regards from Spain.
Who knows – maybe in five years or in two years – after the Montoya and Unutmaz and Klimas and Australian immune work is done – immune will be back in there, I wouldn’t be surprised!
I would prefer something like ” Chronic Exhaustion and Immune Dysfunction Disease” (CEIDD) which is similar to the existing CFIDS.
Anyway I think the immune aspect should be present.
Great job Cort!!. Regards from Spain.
I look forward to what sounds like a very substantial report, and to some kind of name change. But “exertion intolerance” is a symptom description, albeit a hallmark one, not an illness. I’d much prefer, ME, or “Neuro-immune-inflammatory Disease Spectrum” or something equally cumbersome but more clearly disease-ish in tone.
We’ve had enough of being given an illness label that even vaguely smacks of the psychological: “Oh, can’t ‘tolerate’ exerting yourself, buddy? Poor you!” I’m a psychologist myself, and I regret that my profession has helped foster the rational for medical doctors blame their patients for their own ignorance.
Regarding “exertion intolerance,” I think it gives us the opportunity to explain what that means if it comes up at all. Such as, that means that when I am able to go to a medical or dental appointment without cancelling, I will need to spend the next three days bedridden. Or I pushed myself to fly to my closest friend’s daughter’s wedding and was housebound with muscle pain and flu-like aching for four months afterward. Or I couldn’t go to the movie with my grandson on Sunday because I had to rest in bed for two days before going to the dentist on Monday. Or after going out to dinner one night when I shouldn’t have, I was so cognitively foggy that I couldn’t follow a sit com on TV.
Exertion Intolerance can mean I couldn’t sleep after too much stimulation being in a noisy environment with people at a party. So I had to rest in bed all the next day and couldn’t shop for food I needed. Or I took my son to the emergency room one night and couldn’t leave my bed for 5 days afterwards.
Anyone else?
Thanks, I appreciate this…a good account of what my life looks like.
This is what so many of our lives are like when we are doing WELL. Many of us are bedridden or housebound for months/ years. You described it very well. Thank you! If only we could get others to understand. Unfortunately many of us are too fatigued to be our own advocates.
This name isn’t perfect, but it IS a start. I am also happy that it includes the words systemic ( although I would have preferred Multi-systemic) and that we are acknowledged to have a disease instead of a syndrome
I don’t want to be a knocker when the committee has worked so hard on the report and agonised over the name, but I think SEID is no advance on CFS, and is likely to create more misunderstanding and trivialisation of the disease.
I like Jim’s ‘Neuro-immune-inflammatory Disease Spectrum’ which covers all the bases. And it sounds like what it is: a fearsome disease, not simply an inability to exercise – which may be the one symptom we all have in common, but doesn’t go far in describing the disease as a whole.
I like Pendergast82’s ‘Chronic Exhaustion and Immune Dysfunction Disease’ too, but when the neuro symptoms are so prevalent for so many of us I think that should be in the name somewhere.
I like this name. Especially like that it includes a spectrum, since there is a wide range of symptoms and severity.
Totally agree on your second paragraph.
If they can’t be specific at this time, then at least sound serious. Systemic Dysfunction Disease Spectrum. Systemic Dysfunction Disease Spectrum with Severe Post-Exertional Deterioration. Something, which won’t elicit a smirk from late-night comics.
I’m sorry you had such a frustrating time trying to listen and hope you can see the replay when it comes out. I felt good about Dr. Clayton’s and the panel’s communication. For me, the name was premature and I believe it was a mistake to require one at this time, but the IOM committee did the best they could and I fully understand the rationale for the terms they came up with. The new definition and their recommendations, the full report, seem much more significant and helpful than the name. I think we may have a valuable resource to substantiate requests, objections, points, etc. for many necessary communications we are involved in. For them to strongly advise that the whole subject be revisited within 5 years also seems like an excellent idea. I hope that this report will result in greatly increased funding for our illness.
I look forward to it. I was impressed by Dr. Clayton when I could pick her up. I think Dr. Klimas said she thought it might be a year or two too early for the name change. I hope shes right 🙂
I think the name totally sucks, and gives me the impression that even the ME/CFS researchers don’t get this disease, and how systemic and disabling it is. Yes, I have PEM, but that is only ONE friggin symptom. I feel like I have a combination of polio and MS. My affliction and disease is that systemic and disabling. So do you think that Systemic Exertion Intolerance Disease gives the doctors or anyone elst the perception that this disease is as bad as polio or MS? Absolutely NOT. SEID is just another stupid Chronic Fatigue Syndrome name. This is beyond disappointing. No words to express my disappointment.
“Studies show that it takes an average of 17 years to implement clinical research results in daily practice” (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC130085/).
We’ve been waiting years already for results. Now by implementing the name SEID we start the clock over again. ME would be a much better choice for patients.
I puzzled over “swings for the fences”, picturing monkeys swinging through the trees, or children on swings, but then the lightbulb went off and I thought of baseball and how, if you can hit it over the fence, you will have a home run and making knock a few other guys on base home too. So I solved the puzzle of the metaphor. I like this metaphor for another reason because it refers to being out of bounds. I found Dr. Clayton’s tone, energy and passion so refreshingly non-compromised. She wasn’t the cringing, maybe this/maybe that, “I only hope the important players are going to be happy with this”, don’t dare to take a risk type which we have seen and heard too much before–the bureaucrats repeating the past in an effort to keep their positions.
I love the new name!!
Having wasted time with a very senior neurologist while he debates the name ME as being inappropriate as no proof of inflammation …..while all I wanted was help for my severely ill daughter.
I am delighted with a name that describes my primary sympton and core problem.
Lets move on together a lot of hard work went into getting this result. Nothing is ever perfect but we have moved a long way forward- a disease not a syndrome, a disease that stands on its own and is not ignored if there are other co-morbid issues i.e. no longer a waste paper basket diagnosis.
Changing the name doesn’t negate anything the criteria haven’t really changed and really there are so many ME/CFS criteria that it is easier to start again.
A journey starts with a single step…..
Yes, indeed. I like this – “Nothing is ever perfect but we have moved a long way forward” – that’s how I feel about it .It’s not a great name and it’s not the name but it’s a step forward.
Agree entirely, but I would be keen to join the fourth group SEID.
I fit the criteria, I love the word systemic, I understand we can’t list every symptom, to me it is forward.
Keen to see the progress from it.
It truly is a can of worms.
The 6:00 news carried a piece on the new name and diagnostic criteria and had an expert doctor who commented that CBT and exercise could help the patients…..??????????
Jeez
Call them and complain, and demand a retraction. Retraction is better than nothing.
I was happy with NBC’s coverage but their “expert” was awful!
Here is the link to contact NBC Nightly News. contact.nbcnews@nbcuni.com
I saw their medical expert make the claim about exercise and CBT being so beneficial and I thought first, she is clueless about this disease and second, I am so glad not to be a patient of hers.
Please, can someone in authority ask for a retraction of her comments.
The new name, SEID is a proposed name and the HHS, et al, will take up that decision. I like the fact that medical schools will get a curriculum change in order to include SEID (ME), and that doctors, educational institutions, and various medical venues will get the questionnaire in order to diagnose the “disease.” Finally, recognition as a disease. That’s great.
This article mirrors exactly how I feel. We need to understand that the committee cannot allow CFS to be called ME because there is not enough scientific evidence, yet. They also set forth a plan to change the name again when more research is available. I guess the name change is not necessary, but the committee said if one more person hears I’m tired too, it’s too late. So they are acting with our best interests in mind and I think we should get behind them.
Is it perfect, no but it can and must be improved upon with further research. However, this is an important fact to remember. This is the first time that a committee of researchers from prestigious institution recognized this as a biomedical disease. Therefore, it cannot be labeled as psychiatric disorder, pyschosomatic disorder or somatization disorder. Otherwise, medical practioners could be sued for malpractice. It is a foundation to build upon.
It is a complex medical disease that will generate further medical research and paves the way for future private/public funding. It allows for medical treatment and lab tests, not psychiatric treatments.
It allows patients to be treated under medical benefits provisions for diseases and allows for disability for medical not psychiatric reasons.
It’s a step in the right direction. Research papers on the ME side are limited in scope so it could not support an ME designation to date…maybe later. Further research is required to determine if it is an immune dysfunction cause by one or more pathogens or an autoimmune disease.
Thanks Ecoclimber
I am happy that the results of the IOM seem to be positive and the members seem to be grasping what is going on. SEID does not describe the very weak immune system component that is a serious part of our illness. It is good that the name has moved beyond a syndrome to a disease in the mind of some of the healthy. I think a real name will have to wait until it is discovered what is causing the destruction in our bodies.
While I have not been crazy about the name ME (just what in the world does “Encephalomyelitis” mean to a regular person?), SEID suffers from not referencing immune system failure, among other critical diagnostic symptoms. So my hope is that a potential name change moves the medical community into a better understanding of the our massive difficulties. But I’m unsure that it will (I’m just such an optimist 😉 ). And trying to explain to my friends and family that the name is changing again is not a welcome prospect for me.
Gord
28 years of ME/CFIDS/SEID and counting
I’m a caregiver for my adolescent moderately-severe ME/SEID daughter. I can use this IOM report to make my case to any doctor who wants to marginalize her or push her to psychiatry. Why aren’t people talking about what a big deal it is that Dr. Clayton specifically stated that this is not a somataform disorder but a real biomedical disease. That alone is HUGE! This report is going into important journals that doctors use for the latest information. It had to start somewhere. No one said this was perfect, but it is clean, logical and invites further discovery and analysis.
I have been incredibly discouraged by the vehement negativity by so many in the patient and advocate community. Like rage and name calling and fury. So many individuals had decided they weren’t going to be happy with the report, or planned to boycott/reject it before it was released. What now? Have the battlelines been drawn and everyone is going to stake out their respective corners until they get what they want? And this advances our cause, how? I am so sad that it has come to this.
Finally, it occurred to me today that perhaps ME/SEID will some day be like cancer. Cancer is manifest many ways with many symptoms and many causes. Some is fatal, some is curable, some is relapsing remitting. What everyone can agree on is that it is bad. ME seems to be similar In that people have different triggers, experience different expressions and degrees of symptoms. Like cancer, different treatments, therapies, lifestyle choices and interventions work differently for different patients. We say “cancer” but it is far from a homogenous diagnosis or prognosis. Why can’t the ME community find a way to coexist similarly, recognizing differences but unifying to find what EVERY afflicted patient, patient’s family and friends want: the why, and how to cure this disease.
I am certain that when the inflammatory, immunological, and neurological biomarkers are better understood, perhaps the “ME” part will gain prominence in the case definition. For now, it seems the committee focused on what was unifying and provable. Whether that is good or bad is too soon to say.
For myself, if I never have to use the initials “CFS” again, I will be overjoyed.
I agree completely and couldn’t have put it any better. Thank you for your thoughtful comment, Heather.
I can’t agree with you more. Especially re all the negativity among people with SEID/ME/CFS. So disheartening. Thank you for your comments.
Amen, Heather! Though I am not thrilled with the name…the report is what really matters and it is a God-send!! I cannot say it better than you have. Thank you for your thoughtful, heart-felt words. Far too often our community sounds like Congress!! I will be headed to my doctor with the report in hand also!
Thanks, once again, to Cort, for your insights, honesty, and positive perspective!
Christine
You said that all so well, Heather! Thanks.
Bravo, Heather.
Hallelujah!
This is some of the best news in the history of this illness. Sure, the name is not perfect, but way better than CFS and more evidence based than ME.
Also, it just feels awesome to know that some of the smartest minds in the U.S. have looked deeply into this disease and produced a sensible report. This greatly strengthens my trust and belief in scientific medicine.
I prefer ME. I think it explains the condition. SEID sounds like we’re lazy and we are anything but lazy. Pain, fatigue, inflammation are not contained in exertion intolerance imo. I really really don’t like seid, not at all. Thank you for the report.
I think Ron Davis likes ME more too! He just couldn’t justify it scientifically. It’s certainly possible that that justification may come in the next year or two as we see studies finish up that are looking for inflammation in the brain.
I consider this name to be another stepping stone for “ME/CFS”
Thanks so much Cort. Your summaries and reports are so important to all of us.
In the new name SEID I too like the the “Systemic” (under which, I presume all the other symptoms lie?) and “Disease” (finally! Some validation.) But I do share concern over the “Exertion Intolerance.” While an accurate description for our core symptoms, exertion is already being confused and conflated with exercise. And intolerance sounds like it could be voluntary…though that is not how they meant it. While not ideal, I am cautiously optimistic about the new name.
What I could absorb tonight of the report information online looks promising. What was disheartening was the comments by Medical Doctors under the Medscape article about the report…comments like “another name? When will it end? When we ALL know what it is REALLY.” Nod nod – wink wink. (Gee, wouldn’t we all like to know what it really is.)
Re: ME…while ME is more accepted by PWCs, and CFS is annoying if not outright harmful with the word fatigue, as you pointed out, ME is not scientifically accurate. We need an educations campaign for PWCs that explains this more clearly. Personally I have stuck with CFIDS because of the immune dysfunction. I hope we are not now heading towards the train wreck combination of ME/CFS/SEID.
Finally, I hope this report moves us forward in the right direction with more research, more medical support, and more knowledge for everyone. Thank you Cort for keeping us updated and informed.
Robyn
I agree with everything that Heather says in the comment above.
I’m not madly keen on the new name myself – but it is still a big step forward. Surely ?
The hope for me is that the medical profession will have to take us seriously now. The number 1 reason that this thing keeps us so debilitated is in the name – ie, exertion makes us worse. Physical or mental or emotional.
And what Heather says about people having different types and severity levels of ME (or SEID ?) makes total sense. And should be acknowledged. It is a huge condition, so of course there will be different severity levels (as with cancer). And diferent triggers – as with cancer.
I see sometimes comments on twitter which I detest like – “if they can do that . . . (eg, play a sport, recover, etc) then they couldn’t have had ME in the first place.
I’ve always felt comments like that were very divisive and harmful – but of course, they are a result of the dreadful stress sufferers are having to live under with this condition.
Also, I feel the name at least gives recognition to it being a serious disease rather than a vague “syndrome”.
It’s got to be a step forward.
After all the futile endless years of psycho-babble . . .
Thanks, Cort for this timely reporting. This name does not describe the illness I have. Worse, as others mentioned above, it creates the misconception that CFS/ME patients cannot exert themselves. The ability to exert oneself in the first place, is what has created the worst misunderstandings of this illness. People see a person who can exert themselves as healthy. This has been my experience. “If you can do X, you must not be sick.” Systemic exertion intolerance disease reinforces that false view. The problems come afterwards and boy do they come!
The other problem with this name is that it seems to ignore all other symptoms. Also, the CFS/ME patient is not well without exertion. I still have pages and pages of symptoms without exertion. Any naming process needs to include input from patients. After all, we’re the ones who have to identify ourselves as such.
But the most important thing is that years of arguing over names is still not going to bring funding to researching this illness. The President has already proposed his budget. Congress (both parties) will counteroffer. They will fight and eventually come up with a budget in the next few months. Unless things change, no matter what the name, we will still not have research funding. Convincing the Congress to prioritize funding for this illness is the only way we will ever have an accurate name.
To that end, I hope it’s OK to mention, please sign this White House petition:
https://petitions.whitehouse.gov/petition/remove-fda-roadblocks-and-approve-ampligen-use-treating-me-myalgic-encephalomeylitis/NX8yBcps
The sister of a CFS/ME patient created it. It was posted here. It isn’t mine. The White House is required to comment if we get 100,000 signatures by March 7th. This is the kind of direct and public political attention we need and it supports Cort’s campaign to get congressional attention on Ampligen. Pharmaceutical advertising would lead to more funding.
So my question is how does one pronounce the acronym SEID? “See-id”? The acronym is critical because I have been trying to say “systemic exertion intolerance disease” to people all day and it takes me at least a minute or two to remember all the words and put them in the right order, and I don’t even have that bad of brain fog. At least CFIDS, which is what I’ve used, was easy to pronounce and included the immune aspect. I also don’t see why they couldn’t have named it after a person. Using a person’s name has not hurt Parkinson’s or Alzheimer’s research funding that I can see and when those diseases were named very little was known about their actual etiology. Finally I think there will be late night jokes, exertion intolerance (even bracketed by systemic and disease) is ripe for the pickings and just not descriptive of the disease nor does it sound serious. I find it hard to believe they had a marketing consultant helping, though given some of the names drug companies come up with to sell drugs on TV perhaps it is not so surprising. I was not against the IOM report, I understand why they didn’t use CFS or ME, and they have done great work but I have to disagree with Cort on this one, I think the name has a high cringe factor.
I AGREE. FOR US TRYING TO SAY IT AT LEAST.
Agree with James. And the difficulty in saying it WILL be a problem.
It just makes the illness seem more inaccessible and marginal.
Trust me, working in and around public relations…
It reeks of medical nerd-dom, and whilst perhaps technically sound………
Also, we’ve had ME, CFIDS, CFS….I actually think another name change undermines progress….for better or for worse CFS is now out there and recognised.
Really, for me, thumbs down big time.
I think I’m probably just going to say SEID – and not the whole name…it does flow trippingly off the tongue – that;s for sure.
CORT–THE NBC, BARELY 5 MINUTE PIECE WAS A JOKE! DID MORE HARM THAN GOOD, IN MY OPINION.
Don’t like the name. Just my opinion. I think CFS should be retained. Once we better define the cause then we can change the name
I don’t believe this name is going to be helpful, especially in the light of recent public articles over here in the UK, see this in one of our papers, http://www.theguardian.com/society/2015/jan/14/chronic-fatigue-syndrome-patients-fear-exercise-hinder-treatment-study-me
It is those PACE researchers at it again.
I don’t like the word intolerance, as lots of people diagnose themselves as having gluten intolerance because it makes them a bit bloated, so it dies not reflect the severity of PENE.
I do like the inclusion of systemic and believe this is a good step forward. The same for neuro-immune inclusion. I don’t understand why they haven’t included idiopathic to reflect its unknown etiology.
And FYI, this is not the first time it had been recognised as neurological by an organization. The World Health Organisation has categorised ME and PVFS as neurological for decades.
I agree with you, Tory. It troubles me that the exhaustive (no pun intended) work of the International Consensus Document from 2011 (and the CCC) have now been boiled down to 5 criteria, with no mention of immune or brain dysfunction.
One thing the ICC did was to do away with the word “fatigue’, in favour of “exhaustion”. I was so relieved when I read that, and had hoped that the findings of this international body would be accepted worldwide. No such luck.
The panel of experts may have done away with the title “Chronic Fatigue Syndrome”, but their first criterion for diagnosis is “fatigue”. How do you quantify “fatigue”? It seems in a way that we’re back where we started.
So many people complain of fatigue, and sleep disorders are very common in our fast-paced world. Mothers with young children are chronically fatigued, people who commute hours to work and don’t sleep long enough would meet the 6 month criteria for fatigue. And people who don’t get enough sleep often have cognitive problems.
I fear that busy physicians will not bother to read the whole report, and will diagnose far too many people without properly assessing them, based on this new oversimplified view of the illness. There’s a reason why physicians like Dr. Paul Cheney and Dr. Byron Hyde take hours or days to assess people with this illness, as those of us who have it understand and appreciate.
I for one am disappointed.
Christine
Nooo! Sorry but what’s the point in removing one humiliating label and replacing it by another?? “oh so what, you’re a bit tired all the time?” now becomes “oh so you’re just lazy and don’t like to exert yourself”. Even if ME is not strictly correct it’s much better. Or “systemic immune dysfunction disease” or something similar. Don’t describe a symptom, describe a pathology or just give it a name like Parkinson’s i.e. don’t describe it at all!
The nrw name dies backwards is terrible. If they dont want ME than use neuro-immune disease or even CFIDS as they are recognizing the immune dysfunction. The suggested name could easily have people with just benign fatigue without immune dysfunction fit the criteria which will harm research.
They should keep the CCC for diagnosis but with added biomarkers like low nk function and or cd8 t cell function as well as abnormal cytokine tests.
we need to refine the diagnosis not broaden it.
the problem was was that they wanted something that reflected either science or the condition. There is immune dysfunction but there’s also ANS dysfunction and brain dysfunction and endocrine…I don’t think they wanted to give it a generic name – so NEID was out.
They settled on a name that describes the core symptom of the disorder. While it’s not pretty – it makes sense to me. We are where we are. When the pathophysiology comes around – then we’ll get a good name.
I think the name is ok, albeit I’d have liked the word pain in it and am not keen on the fact it spells DIES backwards. Whether it makes any difference with research, diagnosis and treatment though remains to be seen and that is what is far more important than a name.
Indeed….
Great job Cort!
Below is how our media responds to this new information..I want everyone to write NBC and this NATALIE AZERA who comes on at the end and embarrassed us once again on national tv. Will post link of the news segment last night.
Thanks Mike – we got the whole problem thrown in our face right away – but it also gives us a chance to correct it.
http://www.nbcnews.com/nightly-news/video/what-doctors-want-you-to-know-about-chronic-fatigue-syndrome-397029955917
I totally agree about that NBC report, What the Heck? Still using CBT, and GET as treatment sounds like we have gone nowhere. CDC needs to get that off their website as treatment!!
How can you possibly describe this disease without including Autonomic and Immune Dysfunction??? Neither of these are in the name, and immune irregularities are not even anywhere in the criteria!! It is a huge step forward to be discussing this at all, but it is a huge step backward to cut out the fact that this is an Immune disease, with total Autonomic Disregulation/Dysfunction. I think it’s better than CFS, but barely. It ignores decades of research proving immune and autonomic dysfunction, which are equally core elements to the disease and most importantly ARE MEASURABLE! The reason the exertion is not tolerated is very likely at least in part autonomic dysfunction anyway, and that would describe my disease so much better than only focusing on the idea that if I exert myself, I don’t tolerate it well. Plus, I feel like I have the flu all the time, exertion or not, and M.E. patients are most definitely at greater risk for cancers and heart disease, or other secondary-cause deaths like brain stem inflammation (found in autopsies) than are the general healthy population.
There is no justification at all for not unifying with the global medical community and using ME temporarily (which many are suggesting should be “Encephalomyopathy”), given that we do not have enough research and we anticipate another name change anyway. The US should never have broken away from the rest of the world and used CFS anyway. At least M.E. is known, and sounds serious. It is premature to give a definitive name if it’s not going to be a pronoun one like Ramsay’s that can grow with the times, because we do not know the causes, nor have good research on all of the symptoms anyway. I don’t think the systems fail purely because of Exertion as most people will define it – they seem to start failing first, and then after being sick Exertion makes it worse. It is still just naming it after a symptom.
There is a good discussion on the naming, and alternate names, on Phoenix Rising also
http://forums.phoenixrising.me/index.php?threads/what-do-you-think-of-the-ioms-new-name-for-me-cfs-vote.35450/
Hi Just wondering what the new diagnostic criteria is? I have been trying to find what I have and it teeters back and forth from M.E. to Lyme disease…both of those titles and treatments mean I’m screwed at this point.
That’s the next blog 🙂
Our disease is as complex as our bodies. And symptoms can be different, if not opposite, in different people. For example Immune Disfunction. Cort…isn’t it true some people’s immune systems function poorly and they are more suseptable to viruses and infections, while others have up-regulated immine systems that over respond to viral and other assaults. Both are immune dysfunction but totally opposite in patient presentation which makes this so much more complex for defining symptoms and diagnostic criteria.
I agree Robyn! I seem to have the up regulation form.
You may not be totally screwed if you have Lyme. Get to an Infectious Disease doctor and get tested and treated for Lyme – if that’s not what you have, it won’t hurt you much, but if you do the sooner you get treatment the better. Some people do recover very well from courses of Doxycycline, etc. I took it for a year because my labs were inconclusive, and it didn’t help because I definitely have M.E.
Even if you have M.E./SEID/whatever it is, it’s not hopeless. Many people have significant improvement with experimental drugs, vitamin supplements, hormone adjustments, or they go into remission (although relapse is common after a few years). The most important thing is getting to a doctor who is known and respected in the M.E. community, even if you have to travel there and can only see them a handful of times over years – at least they can give you adequate testing and some paperwork to document what you have and your needs so that a local doctor can collaborate and follow-up with appropriate treatment. It’s not a cheap or easy process to deal with this disease, but it is by no means hopeless. Focus on the symptoms that you can relieve, like if you have Fibromyalgia, POTS/orthostatic intolerance, sleep disorder, etc. – the less strain your body is under, the more energy is has left to heal itself, no matter what the name is of what is wrong. A daily stress management routine will also help, although of course it by itself is no cure. But you want to give your body every opportunity to fight, and to recover or at least to feel a bit better.
Don’t give up!
I think the new criteria are much better but this name SEID why not call it Ramsay’s disease with updated criteria 2015 ? That would be great wouldn’t it. Anymay thsi report is better than i was expected, well done IOM!
I like the name SEID, I’m pronouncing (SEED). I think the sooner we all come together on this, whether you think ME/CFS, ME, CFS, I think they will do what they want to do, but I don’t think its a good idea to call this ME/SEID, I think we need to move forward together, grab hold of SEID, and get more funding. Now that they have said 2.5 million have this disease that means we get $2.00 per year, per person by the funded by the NIH, Tragic.
Now the name to me means this.
Systemic means system wide failure, that can be the Brain, Central Nervous System, Muscles, Gut, Immune, Cells, Organs, The whole Body can be affected. Since we have multi symptom issues, I like Systemic.
Exertion means Physical, Mentally. I am not sure that this grasp the nature of the illness, considering we can feel the same way with no Exertion.
Intolerance means we cannot handle any Physical, or mental exertion, but what about when were not exerting, we feel the same way.
Disease is the kicker for the for SEID, because I think people will take it more seriously, less likely to make fun.
Only time will tell. I am hopeful.
Honestly, after 26 years of this life-wrecking disease, with some substantial and difficult relapses and remissions, I cried to hear it called a disease and to feel for once that a medical body is acknowledging the complexity and seriousness of this horrible and misunderstood disease that has robbed me of living a more fulfilling life. Until it is understood, it is not understood and no name will capture it correctly. For me, Im crying tears of some relief and some sadness and some peace that things are finially moving beyond the medical mess this disease has been, personally and in the medical profession, and I hope I am still around to see more improvements. This improvement, for me, trumps the ways the new name falls short. I have a disease and now it is called one.
I cried too Emily! To be honest I blew past the name, all I saw was “disease” and kept rolling! This is a game changer IMO, doors will open to funds for research, doctors will have to treat us seriously. I immediately forwarded the news to my two adult daughters so I could try out the new name 🙂
This is a really good article on it that I think is pretty accurate and represents the issues well. We should reward such articles with high readership, making them more likely to be posted on news websites with high traffic such as Google News (which sadly right now has a link to this page but does not feature the issue anywhere on its Health headlines for the day) – check it out!: http://www.sfgate.com/health/article/Fatigue-syndrome-validated-by-influential-group-6074054.php
Agreed!
Thanks. Of the major media outlets I read, these two were the best and most accurate:
http://www.npr.org/blogs/health/2015/02/11/385465667/panel-says-chronic-fatigue-syndrome-is-a-disease-and-renames-it?utm_medium=RSS&utm_campaign=us
http://www.pbs.org/newshour/rundown/report-urges-new-name-better-diagnosis-chronic-fatigue/
(I read NBC, CBS, NYT, WAPO. No articles on WSJ, LAT, CNN and only an AP wire article on ABC.)
I think changing horses in midstream is a mistake. We can call this illness anything we want but that will not alleviate our suffering. We need new science, not a new name.
Precisely Nina.
Finding the cause and then cure is much more pressing than the name.
If the name matters so much, then find the cause and name it in accordance to it.
My medical info is that a condition can’t be called a disease until there is a known cause. Why not drop the CFS and use ME/SEID or the other way around? When the CCC was developed by the top international medical team I understand the US CFS was added to the ME then.
Precisely Nina.
Finding the cause and then cure is much more pressing than the name.
If the name matters so much, then find the cause and name it in accordance to it.
exactly and for the life of me I can’t understand why supporters can’t see that a name change is awful in terms of awareness etc. It’s not a perfect name but people by and large know what CFS is. throw seid out there and that takes us way back….
I totally agree…less fuss on name more on important research…
also I don’t think name changing does much for credibility….people will think its some syndrome in search for a name, maybe showing it really is psychomatic
sorry to harp on – don’t like it one bit
Because in English, French–maybe other similar languages–a letter i can be interchanged with y, this word SEID might also be SEYD. This gave me the indicator of how to pronounce it as a whole, as if it were SAYED.
Generally, I plan to use the letter by letter, S. E. I. D.
So what happens now? What will HHS, NIH, CDC say and do? (when will we know?)
I think it will be REALLY interesting to see what CDC and Unger do, now that IOM has put PEM as a mandatory symptom. CDC and Unger have been opposed to that (sadly). Let’s hope they are gracious enough to change!
I don’t see how they can’t really. They generally require validation for something – and now they have it.
The name is imperfect, but nothing can be less effective and stigmatizing than Chronic Fatigue Syndrome. The medical legitimization of a disease state and consequentially more funds for research is a tremendous stride forward and one of today’s main stories. An equally important story: how a handful of brave researchers (like Nancy Klimas, Charles Lapp, Leonard Jason, and Jose Montoya, to name just a few) and activists (like Kristin Thorson and Cort Johnson, whose equanimity, sharp intellect, and gentle humor have made this blog indispensable to anyone, professional or patient or family member, with an interest in SEID) fought for decades on our behalf. These people will be remembered by medical historians and anthropologists as the compassionate vanguard who fought the shameful, inexcusable denial of recognition to us, by the majority of the medical community, as suffering patients worthy of decent treatment. They came armed with reason, persuasion, data, and most essentially, the spirit of what it means to be a caring human being. I thank them all — we patients would be nowhere without them.
Well said, David. I want to express my appreciation to those battling for all of us who would not have a voice otherwise.
It’s not perfect, but isn’t chronic fatigue the universal symptom in this disorder??…
also there are so many levels of severity (I am luckily mild) but they all tie back to some level of fatigue
as a severe sufferer of me/cfs since 1974; I don’t like the new name…except for the words systemic and disease. I think it maybe should be Systemic Immune Autonomic Inflammatory Disease. S.I.A.I.D. Touches upon a lot but no one believes me anyway so I NEVER mention it…cfs. Thanks Cort for your excellent reporting as usual…you’re the best voice we have!
SIAID – I like it Arlene! – it’s got just about everything in it. Maybe in a couple of years that’s what it will be called.
Thanks for your nice words 🙂
Excellent suggestion. Arlene. I very much like your proposal of ‘Systemic Immune Autonomic Inflammatory Disease’ aka S.I.A.I.D.
This disease has stolen my entire life, the lives of countless others. I want an appropriately grave name for a grave disease that causes extreme suffering and anquish.
S. I. A. I. D. works for me.
We could pronounce it Sea-aid.
What David said! Yes, indeed, thank you, thank you, thank you to all our advocates and researchers who’ve been working for us for years now!
On the name, I tried saying it to my postgrad supervisor yesterday and ended up sounding like an idiot as I had to think of each word. They had no clue what I was trying to say. I think I’ll just start by saying I have a systemic disease, and go on from there. I loved the name Ramsay’s Disease. So easy to remember.
I agree “exertion” is problematic. It’s fairly accurate, but the media is liable to reinforce its muscular connotations. I don’t have a great suggestion but maybe “effort” has a broader connotation (though it might reinforce suspicions of laziness).
I do agree that “systemic” is a very good word.
I have been diagnosed with fibromyalgia since 1995 and have extreme pain and fatigue. How will fibromyalgia fit in to this new recognition and name?
Fibro is engaged in its own rather turbulent definitions 🙂
I think one question for you and other people diagnosed with FM is whether you will also fit the SEID diagnosis….A blog on that is coming up next
Exertion is a psychological word, so we bring back psychology into the disorder. I wish I had a dollar for every time a doctor implied to me or told me outright that I am not trying hard enough with regards to this disease. As stated above, effort is opposite to laziness.
They should have put the name up for a vote. I think the patients should form a coalition and come up with a name. Actually, I agree with the others who say that ME is good enough.
What about intolerance? Doesn’t that imply that you simply can’t exert yourself as you used to? Intolerance is a pretty strong word.
I have a medical background.
“Exertion” is not a “psychological” word in the medical field. Professionals use the term regularly to describe people who have heart or lung disease/ arthritis/ multiple sclerosis, etc. that have problems with breathing, chest pain, fatigue, bone pain, etc. when they make an effort to do something. “Exertion” also does not equate to “exercise.” For example, the classification scheme for moderate/ severe heart failure uses walking a block, being able to do day-to-day activities (e.g bathe, dress yourself), etc., not swimming or running.
Likewise “intolerance.” People have a hard time with that in the name but seem to have no problem with “orthostatic intolerance.” Also, “oral glucose tolerance test”, “exertion intolerance”, among other terms are used without the words implicating anything psychosomatic in medicine. The former a test to find women at risk for diabetes during pregnancy, the latter in mitochondrial disease.
The meaning of word really makes it too, separately from the individual words. Does “mild cognitive impairment” sound benign to you? It is not. This is a condition where 10%-20% of people affected go on to develop Alzheimer’s disease. Well-educated docs don’t take this term lightly.
I think where people may be getting confused is the “colloquial” meaning/ connotation of a word may be very different from its medical/ technical meaning/ connotation. While SEID will be used and viewed in certain way by the public, keep in mind that healthcare professionals/ scientists may view it differently.
Thanks for clarifying that.
I forgot to say that if doctors, psychologists and psychiatrists cannot detect their own biases, then they need to take training for that. The name should have no impact on them. They are supposed to be trained to challenge relevant attitudes, beliefs, biases, schema, etc.
Thanks Cort,
Is the new diagnostic criteria yet available somewhere?
Yes! – I’ll cover that in the next IOM blog – coming up soon
” I thought this was an Onion article at first.” < a facebook comment in response to an NPR article re the 'name change' posted on fb today. Story @ http://tinyurl.com/oxdxom3 My physical therapist ( who knows nothing about CFIDS/ME other than the fact that I 'have' it ) told me today that she was excited to hear this news story on her car radio this a.m. as she drove to work. She had thought I would be pleased. I simply smiled. I try not to talk about the hell I live in…very much. I think she wondered WHY I simply smiled and changed the subject. It isn't their fault that the well have no clue. But…it does make life lonely
I have a love / hate relationship with this already. I love that they crushed the “CFS” name. This is a well earned punch in the nose to the CDC and the entire era of Fukada nonsense. On the other hand I think they went too far in tossing ME out. Well, I think I have ME and the description “myalgic” yep muscle pain in quantity and quality and “encephalomylitis” yep that would explain the patent brain damage including narcolepsy, hypogonadism, hypothyroid, loss of intellectual acuity etc and spinal inflammation seems to correlate well with multiple peripheral neurological issues as well. May we get some money for research with a cohort of patients who all have PEM. That is the one defining characteristic of ME that seems to be the most unique.
As to “systemic exertion intolerance disease” I like it mainly because it is not CFS.
Wow, I learned there are a significant number of people out there who have this disease who do not have pain. I find it hard to even imagine what that would be like and I wish you all well and hope this is a continuing condition.
Pema Chardron said in one of her writings “Pain is inevitable, suffering is optional.”
Thanks Cort and best wishes for all,
Greg
I love many things about the new name. What I don’t like, though, is that it does not mix well with brain fog. It’s going to be difficult for all the patients to remember it. It will be ages before it trips off my tongue. However, we’ll all learn.
In the end i think this disease will be caleld after the specialist who will find the real cause.
I would like to know too why always has been named CFS/ME if the WOH’s exact definition in the ICD-10 is Post-viral Fatigue Syndrome / ME.
We suffer from exercise intolerance? What about brain disfunction? Inflammation? POTS? Sensory overload? Pain? Immune dysfunction? Inflammation? Spinal cord pressure? Autonomic nervous system dysfunction? Irritable bowel syndrome? Pain? Flu? Neuropathy? Nausea? Joint pain? Migraines? Insomnia? Chest pains? Seems to me that SEID has focused on only 1 problem.
We now have another 1 dimensional name for a very complicated disease.
Anyone for Myalgic encephalomyelitis?
Houston? There is a problem.
Overall I think it’s a step in the right direction. The part that pleases me the most is changing the word from Syndrome to Disease. What makes me crazy is Dr. Clayton of IOM, comment that “This is not a figment of patients imagination”. Why does that comment have to be included whenever there is a serious discussion about ME ? It’s like saying “the earth is not flat” every time we discuss our planet. Stop telling us that you believe us, instead start showing us that by appropriating the kind of money for research that other serious illnesses receive.
While I am grateful for the attention and publicity, I have to admit that I am completely baffled by how so many well intentioned, highly intelligent people could come up with this name. This will be trivialized just as CFS is. (Like before, I’ll be hearing things like, “Exertion intolernce? – oh yeah, i have that too”). Also, how will it be pronounced? People will surely be pronouncing it as sids and then the jokes will fly, “Sudden Infant Death Syndrome?” Good night nurse. To borrow a comment from the NYT article, we would be better off calling it Compassion Intolerance Disease. I’ve had this disease for 21 years and I am sick and tired (literally) of it not be taken seriously. While ME is not bad, it doesn’t roll off the tongue and you’ve already lost the person you’re talking to by the time you get to itis. Can’t they just give it someone’s last name?? I’m happy to throw mine in the ring. Moore’s Disease. There. Done.
Moore’s disease – I like it.
Quite a few ME/CFS physicians contributed to the report – I think they were thinking of their colleagues when they created a name which basically said what it is….
Until there is consensus around pathophysiology we’ll have a symptom based name I think.
When ill most of your life, disabled by something that causes so much physical suffering, you grow weary of all this re-naming BS. Most of us cannot find a doctor who even acknowledges our suffering/disability, who is even well read about the disease. I give docs links…STANFORD links ( reputable links) and then the docs don’t read the sites they link to. I often wonder about THE MEMO…that must have gone out. The one that says ‘IGNORE THIS PATIENT POPULATION”. Exertion intolerance? Does that mean some flake of a doc is gonna ‘condition’ me to tolerate exertion? DANGEROUS NAME. and FLAKEY IDEA.
I am sticking with More’s Disease.
http://en.wikipedia.org/wiki/BS ( BS is in the ‘other’ category at this link. Refers to BULLSHIT. )
David Tuller reports on the IOM report in today’s New York Times blog.
http://nyti.ms/1CecIO3
correction : Moore’s Disease
My big concern is that the 6-month wait for diagnosis has been carried over from the Fukuda criteria to this one. We know that the longer it takes for someone with any illness to be diagnosed, the worse their health outcomes. I haven’t read the report yet. Cort, do you know why the 6-month thing has been left in?
I didn’t have the energy or ambition to read every reply here, so if this is repeating what others have said — sorry.
THIS IS LUDICROUS.
I don’t know how long anyone else’s problems have been going on, but for me it’s been 30 years.
So . . . after they misused and wasted millions of dollars in funds . . . and let 30 YEARS go by . . . now, the best they can do is propose a new NAME?
WTF !?!
Talk about clueless, incompetent, wasteful . . . (fill in the rest of the description yourselves). Disgusting.
The IOM Disaster
The IOM recently published its report into ME and has renamed the illness to Systemic Exertional Intolerance Syndrome (SEID). This will be a controversial decision and will encounter considerable opposition from patients and doctors. Let us look carefully at the facts. The name itself tells us nothing about the illness as many illnesses including Cancers and MS cause substantial “exertional intolerance”. Yet these illnesses do not have “exertional intolerance” in their name. The report accepts the illness as a serious biological illness but fails to accept this and quantify this in its diagnostic criteria. Unfortunately the new IOM criteria uses most of the same criteria used in the Fukuda criteria of 1994. It uses a substantial reduction in physical activity and profound fatigue lasting for more than 6 months unrefreshing sleep and cognitive impairment. The addition of Orthostatic Intolerance being the only new addition to the criteria. What about the immune system abnormalities ? the mitochondria abnormalities ? the neurological abnormalities ? the HPA axis abnormalities ? the infections consistently found ? the cardiac abnormalities ? the genetic abnormalities ? the gastrointestinal and microbiome abnormalities ? These important biological factors were omitted, left out.
The IOM diagnostic criteria is far too vague, loose unclear and ambiguous. The IOM criteria cannot diagnose or treat any illness. The IOM criteria advises doctors not to carry out intensive biological tests to decipher the illness factors in the patient. This is extraordinary, as medicine and science is about identifying and establishing facts and not about making assumptions and presumptions regarding fatigue for 6 months or more. The new IOM criteria does not deconstruct this complex multi-system illness illness into it’s constituent parts so as to diagnose and treat with precision. This means that patients will not get a proper of diagnosis of ME / CFS or SEID and thus they will not get proper treatments. Millions of patients will continue to be left in a limbo and many of these will continue to be vulnerable to premature deaths as a result. The following list is a sobering reminder of what happened in the past when vague, ambiguous, unclear and loose criteria were used to diagnose the illness – http://www.ncf-net.org/memorial.htm
In addition the IOM criteria includes co-mormid illnesses in the diagnosis of SEID, and Depression and mental illness are included. This means many of those people with Depression and other mental illness will qualify for a diagnosis of SEID or ME / CFS. This will add these patients to the mix of SEID and ME/CFS patients and this will confuse doctors and researchers, and cause inconsistent research findings and further confuse the research field and the meta analysis of papers. It’s a disaster. It is this inability to accept well known biological makers for the immune system, mitochondria, neurological system, HPA axis, heart etc. which condemns doctors, researchers and civil servants to continue to repeating the same mistakes over and over again, while patients suffer, become more frustrated, and die.
The malign influence of some London psychiatrists continues in the field of ME / CFS and this is evident in the new IOM criteria. The emphasis on fatigue and exertion intolerance and the omission of biological markers proves this point. The excessive research monies wasted by the NIH and British government and other EU governments on CBT, GET and other psychiatric nonsense has robbed the field of quality research into biological factors for over 20 years. Yet despite these setbacks, there are many high quality research papers proving consistent biological makers in the illness.
There are some known biomarkers for the illness – http://www.me-ireland.com/structure.htm#8 and some forward thinking medical clinics which use these and diagnose and treat the illness – http://www.me-ireland.com/diag-treat.htm . The Norwegian government feels that the immune system abnormalities are important and is continuing to fund research into the use of Rituximab in ME / CFS and this should produce some results by the end of 2015. The Open Medicine Institute (OMI) is continuing to fund raise for high tech research into ME /CFS combining immune system, neurological system, gastrointestinal, genetic and endocrine factors in a large research project. This will produce some findings by the end of 2015. The Rituximab and Microbiome projects in Britain are due to begin soon. Also Dr. Lipkin’s microbiome study is to begin in the near future. These provide realistic hope in terms of identifying all biological markers for the illness.
The IOM debacle and controversey is proof that the fine art of deconstructing complex, multi-faceted systems / illnesses into their component parts and understanding their nature and their dynamics and linkages with each other has been lost.
The problem Kathleen – and this was explained to me and others by one of the study members – is that none and I mean NONE of the findings in ME/CFS – as tantalizing as they are – are conclusive enough or validated well enough – to be included in a name. Take the most well-known immune finding – natural killer cells dysfunction. we all take it for granted that NK cell dysfunction typifies ME/CFS but the committee concluded that the studies on NK cell dysfunction are too small and too few to be able to confidently say that. The problem is that the field gets so little research money and that money is spread across so many different areas that none of them may be well enough validated to meet the standards of rigor needed for this body to day – ME/CFS is NK cell dysfunction.
There’s a reason there’s no consensus around biomarkers – there just isn’t enough study evidence to say “x” is a biomarker for ME/CFS. If NK cell dysfunction isn’t a biomarker yet – then nothing is. There’s a big difference between someone saying this is a biomarker and it helps us treat patients – and I’m sure it does – and validating that biomarker to the satisfaction of researchers like Ron Davis – who was on the committee. It’s a very high bar….
That’s why this group – which needed that kind of validation to incorporate a physiological finding in the name – stuck with a symptom based definition.
Hopefully – I hope to God – that the report which does legitimize ME/CFS as a serious disorder -will provide the impetus for that funding.
This – “The IOM criteria advises doctors not to carry out intensive biological tests to decipher the illness factors in the patient.” is simply not true. Do you think Nancy Klimas or Lucinda Bateman or Dr. Lerner or Ron Davis with his severely ill son, for god’s sake – would say don’t search further? Of course they wouldn’t and it doesn’t….
“The Norwegian government feels that the immune system abnormalities are important and is continuing to fund research into the use of Rituximab in ME / CFS and this should produce some results by the end of 2015.”
As a Norwegian, I can’t say I have gotten the impression that the government feels the immune system abnormalities are important. The government has primarily been funding research on stress/ME (Wyller). They are still recommending CBT and GET as a treatment, and for some reason large parts of the medical establishment still has huge faith in this. It’s no surprise that a coincidental discovery is what led to a break in research coming from Norway (is my understanding, anyway).
Yes, it’s cool that the government partly funded this project. They donated a tiny part of the research budget. The headway is being made by the doctors (all two of them), barely enabled by the state. To me it seems like it’s the US government that is changing the deal here, if anyone is. For all our sakes, I don’t think anybody should use Norway as a good example of how to treat ME/CFS-patients (if there even is any such thing).
Also, it might be good to keep in mind that we’re not guaranteed any results from the RituxiME-study until 2017. Perhaps even later, if the report takes ages. They have said that they might bring some results on the study done before this one (around 30 patients, no placebo) in 2015. Sorry to be a downer! (This is all my understanding of the issue, I have not fact-checked any of this now because ME.)
In regards to the name…MS does not portray the seriousness of the disease. I’m sure the majority of people don’t even know what a sclerosis is. The name does not suggest paralysis, death, and the severe disability the illness can cause.
Then there is Alzheimer’s and Parkinson’s, all serious illnesses much respected by the community and yet the name does not imply anything serious, no symptoms are named, no cause is in the name, no science, etc etc.
Then how about cancer? Cancer means ‘crab’! and yet everyone fears the name, knows it’s seriousness and would never take it lightly. How can ‘crab’ do that????
In other words, I am starting to believe the name has nothing to do with it. It’s the overall respect the medical community has given these ilnesses because of their seriousness. The lame names did not hinder that. I think it is important to concentrate on those subsets who are seriously ill and weed out the rest. I’m sorry but it is the rest that are creating the muddy waters (I have a volunteer from church who is an ex-nurse from Baylor U. who said just that…that the ‘fatigued’ people who say ‘yes, I had that’, are muddying the waters)…so I think it will be the criteria that will be the most important part. Perhaps we should not get so caught up in the name…but be grateful fatigue is not a part of it.
Personally I feel like SEID + CFS sums it up for me. One very big aspect of my condition is PEM, absolutely. And it’s what I use to explain why I have to reduce my activity. But I can be sitting on my butt, resting and still feel ill! And that is what I feel CFS describes, to an extent. I am ill whether I exert myself or not. And that is the thing I feel people don’t get a lot of the time – that I don’t function to begin with. Hopefully this will all change soon 🙂 (I do actually use the term ME, mainly due to associations with criteria I agree with and less stigma…)
Agreed – that is actually part of the definition – fatigue and symptoms that are not substantially relieved by rest….
I’m sorry but I think the name SEID is just too lame. It does not convey the seriousness of this disease. Someone in the above comments mentioned the term non-HIV AIDS. But, there has been so much stigma associated with HIV most of us want to distance ourselves from it, I think. If doctors are not too keen on calling the disease a type of encephalitis, which is an acute inflammation, why not just call it encephalopathy, or perhaps encephalomyelopathy, which includes the brain and spinal cord; and then, Because the disease also affects the immune system, tack that on the name as well. then you end up with a disease called “immunoencephalomyelopathy”. IMEMP. We need a serious name for a serious disease.
On pages 58-59 of the IOM report are names suggested to the committee by the “public”. Among them was “Catastrophic Multisystem Dysfunction”. Much better, to my way of thinking!
Christine
So this is supposed to relieve us of the joking comments??
“Oh (Exertion Intolerance), I get that every Monday”.
My husband got that the day we were married.
All my employees have that..
That’s why I lost my race last week.
There is no way, telling my father-in-law, that I have “Systemic Exertion Intolerance Disease” will go over any easier that CFS.
My 2 cents…. Call it ..
Cardiovascular Autonomic Nervous System Disease. ( CANS Disease )
The ANS dysfunction is screwing up the cardiovascular system, not allowing proper blood flow to all muscle, thus causing muscle hypoxia, lactic acidosis in the muscle, and all the lovely after effects.
Or simply…. “Muscle Hypoxia Disease”
Out of 100 names, this?
Until they know where the core of the illness lies and that has been validated – yes.
Remmember the AHRQ report? They couldn’t validate any biomarkers in this illness because of poor study designs and small studies. If they couldn’t do that why would you expect this committee to be able to pick a name like CANS disease? Naming a disease is far more difficult that finding a bimoarker for a disease…
I would have been much happier to have a name that has none of the aspects of the disease in it. Parkinson’s Disease, for example, or Alzheimer’s. If somebody does not know what it is, then the doctor or the patient can tell them, or they can do some proper research instead of forming an opinion or listening to myths about it and assuming that the name encapsulates its symptoms and seriousness.
The general public do not view the term intolerance as a physical inability to do something or as causing physiological harm. The word intolerance is used to indicate that someone refuses to have or to do something, or that they are opposed to is. Unless you are talking to a highly educated person who is careful and particular about language, intolerance in any sentence is like this: “Right wing religions are intolerant toward gays and lesbians.” If I say I am intolerant toward exertion, then someone would assume that I don’t like to sweat and get blisters on my hands from doing heavy gardening all day, or that I don’t want to run a marathon.
Also, the word exertion implies that at most, I would have a problem with going up 8 or 9 flights of stairs. That’s what a normal person thinks ‘exertion’ means. So, in terms of taking away stigma, abuse, and accusations of malingering, this name is not helpful. Name it after the doctor who first identified it, or after one of the researchers who has done the most to help us understand that it is a true biological, medical disease. Then we don’t have to have all this argument about the name not reflecting our personal symptoms. If this illness has a variety of sub-groups… if fibromyalgia is indeed as linked to it as some researchers believe, that it may be a manifestation or sub-group of this illness, then doctors will have to learn that by reading proper information instead of forming assumptions based on a name.
I have never had an ME diagnosis. In the UK, getting an ME diagnosis can make things more difficult for someone severely affected, and I have stopped short of going to the local ME clinic because they claim that Fibromyalgia is at the opposite end of the spectrum and that ME can be treated with CBT and GET. The head of that clinic believes that Fibromyalgia patients just need to do CBT and join a gym! Seeing him and having those conclusions written in my records could make future treatment difficult, especially as my GP would act on his recommendations. My GP has already referred me for CBT for my IBS symptoms, which are quite mild compared to the rest of my problems. I resent having that referral when she has only seen me once and not even really discussed my IBS to know what it is like. The more I get referred for treatment and decline to participate in it, the more it seems to her and future doctors that I do not want to get well, or that I am a malingerer.
All in all, I would like to see strong statements made by influential scientists and clinicians in BOTH the popular press articles and ‘esteemed’ medical journals like the Lancet (not that they always deserve esteem when they continue to publish more trials and articles based upon premises drawn from PACE trial conclusions.
Bioenergetic Disease (BD)??
Chronic Bioenergetic Disease (CBD) ???