Clearly, issues concerning reliability of clinical diagnosis are complex and have important research and practical implications. Jason et. al
In the beginning of his overview on the IOM definition and name change Jason notes the numerous false starts and botched definitions that have plagued chronic fatigue syndrome. Because the Fukuda definition did not require core symptoms of the disease be present it selected out a heterogeneous group that may have differed from study to study.
Both the Canadian and International Consensus Criteria did require core symptoms of the disease to be present but they required so many other symptoms they ran the risk of increasing rates of psychiatric disorders – something ME/CFS surely does not need at this point. (There was also the Holmes definition which had too many symptoms as well, the Oxford definition which has too few, and the ME definition which requires infectious onset.)
Nobody has gotten the definition of chronic fatigue syndrome right yet. Did the IOM?
Nobody has gotten it right so far. The IOM definition would seem to be the closest. It requires some core symptoms but not too many. It was not derived statistically but relied heavily on statistical analyses.
Tony Komaroff asserted it was the best definition yet. He stated
“It will likely encompass a more homogeneous and sicker group of persons than the past case definitions.”
The IOM definition requires the following criteria to be met:
- substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities accompanied by fatigue which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest, and
- post-exertional malaise
- unrefreshing sleep;
- one of the two following symptoms: cognitive impairment or orthostatic intolerance.
It’s quite similar to the statistically derived symptom set Jason et. al came up with in a 2015 study. (This study was probably not available to the IOM panel.) Using several statistical techniques Jason found the following symptom set most accurately selected out ME/CFS patients with more severe symptoms
- fatigue or extreme tiredness
- difficulty finding the right word to say or expressing thoughts
- physically drained/sick after mild activity
- unrefreshing sleep
Jason’s “empiric definition” – not to be confused with the CDC’s “Empirical Definition” (which was not derived empirically) probably provides the best symptom criteria yet.
Given that these two definitions are pretty darn close, though, why is Lenny Jason – our resident expert on defining ME/CFS – publishing all these critiques? Jason had the opportunity to be on the panel but declined. Since it’s come out he’s published at least four commentaries/studies that have been critical of the definition and/or the name.
Leonard A. Jason, Madison Sunnquist, Abigail Brown, Stephanie McManimen, Jacob Furst. Reflections on the IOM’s systemic exertion intolerance disease. Polish Archives of Internal Medicine.
The IOM definition was, as Komaroff noted, designed to produce a more homogeneous, probably smaller set of ME/CFS patients. It doesn’t always seem to be producing a smaller, more tightly defined set of patients, however.
Jason’s analysis of different large patient/control sets indicates the IOM criteria – at least in some instances – plucks out about the same sized group as the Fukuda criteria and a smaller group than the CCC, ICC and Jason’s empiric criteria do.
Only 66% of the patients who meet the IOM criteria meet Jason’s statistically derived four symptom empiric criteria. Plus, the IOM criteria selected more patients with less impairment and fewer symptoms than does Jason’s empiric criteria.
If the definitions are so similar what could account for these major differences? The IOM criteria do add orthostatic intolerance to the mix. OI is common in ME/CFS but it’s not nearly as common as some other symptoms. Jason’s analyses indicated, however, that adding OI as a supplementary symptom added only about 2% more patients to the mix.’
Something else is going on.
The Exclusionary Criteria Question
Jason data suggests that the lack of exclusionary conditions in the IOM definition could, in some circumstances, allow more patients, in fact many more patients into research studies than even the Fukuda criteria do.
We should note that the IOM panel was tasked with producing a clinical definition not a research definition. Clinical definitions and research definitions in ME/CFS have a way of morphing into each other though.
Most ME/CFS research definitions have had a fairly long list of exclusionary conditions but IOM definition listed none. Jason reported that “no medical or psychiatric conditions were considered exclusionary for the SEID criteria, as the IOM criteria state that conditions are only exclusionary if they explain all of an individual’s symptoms.”
Much of Jason’s critique focused on the lack of exclusionary criteria
Exclusionary diagnoses in past ME/CFS definitions have ranged from untreated hepatitis B infections and thyroid conditions to Addison’s disease to diabetes to rheumatoid arthritis, lupus, anemia, etc. Some psychiatric disorders such as depression with melancholic features, bipolar disorders and schizophrenia have always been considered exclusionary but depression and anxiety have not.
Jason points out that the IOM core symptom complex (fatigue, unrefreshing sleep, post-exertional malaise) can be found in other chronic illnesses. His sample set was a small one but Jason’s 2015 finding that significant percentages of patients with multiple sclerosis and lupus (35-45%), major depressive disorder (24%) and melancholic depression (47%) could all meet the IOM criteria was alarming.
The IOM definition does appear to work very well at distinguishing ME/CFS patients from healthy controls who do not have chronic illnesses. This is an important point as most studies use healthy controls and/or patients with specific illnesses as controls. ME/CFS doctors tasked with providing patients for ME/CFS studies are not going to provide lupus or rheumatoid arthritis or bi-polar disorder patients to researchers. The risk of those patients ending up in most studies is probably quite small.
In larger-scale community studies that include a wide range of participants, however, Jason’s studies suggest the IOM definition would likely add in significant number of patients with a range of chronic illnesses – possibly increasing ME/CFS prevalence rates threefold. (One wonders as well, absent exclusionary factors, if some psychiatric researchers might add-in more patients with psychiatric disorders for whom ME/CFS is a secondary diagnosis.
Conclusion
Defining a condition is obviously a complex process. Jason noted that even the decision to categorize an illness as a comorbid or exclusionary illness is a complex decision that’s often been treated as a simple one.
Thus far, Jason’s published at least four studies/papers critiquing the IOM panel report. The fact that he’s the only one to publish anything on the IOM report emphasizes how much this is his field. He was clearly missed on the panel and hopefully he will be on the next one.
The fix he proposes, however, is not a large one. If the IOM definition ends up being used in research exclusionary criteria simply need to be added in. If they are then the rest of the definition – the symptom criteria – are close. Jason’s 2015 empiric definition study suggests some symptom criteria might be better.
In this fluid field changes are a sign of progress
The authors of the IOM report knew that the field is a fluid one. The report is probably doing just what the authors of the report hoped. It’s a significant body of work that can’t be ignored which is prompting more work in this area. That work is helping to clarify the nature of ME/CFS. Even as it’s being critiqued the report is working…
The IOM saga also emphasizes just how vital the work of Lenny Jason and his research team have been. His work laid much of the groundwork for a new definition. His studies highlighted the mostly unforeseen and paradoxical problems the CCC and ICC definitions posed. His close monitoring and study of the IOM definition is making it stronger.
Defining a disease is more complex than we knew. In just the past six months Jason has published papers suggesting that people with lifelong fatigue should not be excluded from an ME/CFS diagnosis and how even subtle differences in wording can alter whether people believe they have post-exertional malaise.
In the future Jason wants to provide structured interviews to make a ME/CFS diagnosis bullet-proof, to produce guidelines for exclusionary vs comorbid disorders, and create mental health evaluations to ensure that people with mood disorders but not ME/CFS are not finding their way into studies.
Hopefully the IOM and P2P reports will help him and others get the funds needed to further put the study of ME/CFS on a firm foundation.
Another great summary. It is understood that for research purposes you can’t have physiatric disorders muddying the waters and maybe they should be excluded. Certainly like people chronically many people with ME/CFS will have depression/anxiety …. How could they not?? Let’s hope the focus turns to bio-markers and biomedical research fast and furiously and the “syndrome” will have a diagnostic test. It sounds as if the NCNED researchers think they are close to one as do many others….
I believe that I suffer from both anxiety and clinical depression, that I am hypothyroid (with what passes for treatment in the UK) AND that I suffer from ME/CFS. I can date what I think of as my ME/CFS symptoms precisely so I don’t think I should be excluded on any of these criteria. In fact – so what if they are confounding factors? If as many recent studies suggests, mitochondrial dysfunction plays a part, doesn’t it make perfect sense that both simple mood disorders and hypothyroidism could be part of the same package?
I do hope that Jason gets funding but I’m not sure that repeatedly attacking the IOM definition is going to help. These scientists and academic types have (IM?HO) just as fragile an ego as artistic types and me.
Christine
Neither anxiety nor depression nor treated thyroids conditions have generally been exclusionary. One of the arguments for not excluding the mood disorders is that they are quite common – and you’re excluding too many people.
Oh, Jeez, guys. This brings up, of all things, the concept of what does “diagnosis of exclusion” mean exactly. Another medical concept open to definition in the eyes of the observer. I believe it implies that in the case of CFS/ME for example, that one can be given the diagnosis once every other disease or pathology is excluded. That would be a rare possibility that a particular test or thought wouldn’t be overlooked. This may seem like picking at straws but I think it’s a particularly important concept: if my RA is positive, then Rheumatoid Arthritis cannot be excluded though I may still have CFS/ME. Just adds more confusion to the definition issue and I’m certainly not the expert but the one who’s a bit more than confused about this being the issue. marcie
Marcie my cousin was the pathologist in charge of the prince of wales and Sutherland hospital’s in nsw Australia now 90 years old he developed his interest in medicine from watching doctors scrape my dads bones of infection in 1942he had rheumatoid arthritis my dad died when I was 5 weeks old of viral meningitis my cousins theory is anyone with the osteo or rheumatoid gene suffers a significant trauma then immune disease will follow thus he says I am lucky given to days medical help I still have brain damage and I have a new aorta valve the old one had large infection burn holes in it you see Marcie the baloney cort goes on with is just that he is now on the dark side he is in it for the money the sad reality is if you have full blown me nothing helps except complete rest
I had to laugh at your comment that I am in it for the money Geoffrey. Think about it for a minute. This site makes money in three ways: donations, corporate sponsorships and Amazon.com. Health Rising has one sponsor – Simmaron Research Foundation. If you think those three things are bringing in much money I really don’t know what to say.
Because this site focuses on the broad range of illness found in ME/CFS many of the things that work for others won’t work for you. I think that’s a better explanation than that I have sold out (but to who? :)). I hope that clarifies things.
Of course, for research, other conditions should be excluded or under treatment so those symptoms are gone (hypothyroid) or be a comparison group. But that has nothing to do with a criteria for clinical use. Bateman said one of the reasons CFS is considered not a real entity, a wastebasket diagnosis, is because it’s not based on positive distinguishing signs or symptoms but is what you have when eliminating other conditions. In other words, a diagnosis based on common symptoms (fatigue, pain and forgetfulness) and excluding other conditions doesn’t tell you what it is; it tells you what it isn’t. So, from a doctor’s viewpoint, does “it” exist or is CFS just a label you give to symptoms when you can’t figure out what it is. For this disease to be seen as real, we have to show it’s different from others and that difference can be perceived, even if the person has other diseases.
Nicely said Tina!
The problem with ME is that there is no (single and unique) objective visuel symptom(s).
You’re probably aware of this already, but what might to most to move on case definition research are the two huge datasets being generated by
– CDC multi-clinic study
– CFI funded cohort study
Both have datasets combining rich clinical, self-report and biological data. Yum, Lenny Jason could have a lot of fun with those.
Agreed. Thanks for pointing those out Simon. It’s a bit unfortunate that the IOM report didn’t begin until directly after those studies came out. On the other hand, they will give the NIH a reason to look at the issue sooner rather than later I suppose.
I find it difficult to understand why someone who is so keen on analysing with rigour ME/CFS definitions would decline being on a committee precisely made to produce an ME/CFS definition…I don’t get it! Was he uncomfortable to be among actual clinician-researchers who work on the terrain (at least 7 of them)? Or perhaps he wanted to preserve his freedom of thought and action and publication by staying outside and work from there? Only he himself really knows… But he does make me think of musical critiques who are very good at analysing musical performances, and their analysis are often indeed right on, but who would be intimidated if they were invited to be a jury member of a music competition made of experienced musicians… I don’t know the whole story so I have to give him the benefit of the doubt…But he criticized the CCC, the ME ICC, now the IOM…Why not take part instead of criticizing?! I have known academics, university teachers, who do just that: criticize work after work after work…albeit with rigour…That being said, I am still happy we have someone with rigour on our side…
More likely, Dr. Jason recognized that the IOM had tasked the committee with arriving at an outcome (a valid clinical definition) that was not possible given the resources that the panel was provided (some staff support and an extensive literature review).
Implying that Dr. Jason is only capable of criticizing the work of others because he couldn’t do it himself is both weak and cheap. Dr. Jason has a library of publications on exactly this topic (population studies – http://www.ncbi.nlm.nih.gov/pubmed/?term=Jason+LA+%5Bauthor%5D) and he runs circles around the ME/CFS clinicians who are well intentioned but untrained in research methodology.
Cort is right that Dr. Jason was sorely needed on this panel but I suspect that he knew that this was a task destined to fall short (and in doing so simply add to the confusion in a field defined by confusion) under the restrictions of scope imposed by the IOM.
Actually I don’t believe Lenny felt the resources were not present. In a blog he argued that the IOM panel should have broken protocol and contacted outside researchers to do the analyses needed. When the definition came out he said in an email he was able to quickly analyze the definition using data he already had. (Note that the studies he’s put out have all used archival data.) I don’t know why that wouldn’t have been possible if he was on the panel.
Something else – he said a number of things – kept him off the panel.
Whatever the reason, the analyses are being done and because of them the definition is being improved. That’s the main thing. We’re very lucky to have a researcher and his team that is dedicated to this subject. If not for Lenny (and his simply enormous output :)) we would have virtually nothing on this subject. That’s a scary thought.
Who knows? It’s possible researchers would be using the empirical definition for the CDC without his input..
I think a big opportunity was missed as well. Lenny said there were a number of reasons he not on the panel and the one he mentioned was that he signed the petition against the IOM going forward.
That petition argued that the CCC should be the definition. Lenny, though, has repeatedly pointed out the problems the high number of symptoms present in that pose. That makes me think he thought the IOM was going to be purely a clinical definition – and he was backing it based on that. Still time has shown that having our big gun not on the panel was, let’s say, not a very efficient use of resources 🙂
Lenny has been outside the three big attempts to create a new definition – the CCC, ICC and now this definition – that’s true. On the other hand he did operationalize all those definitions and he did participate in the pediatric definition, I believe it was and perhaps one other.
He has the best critiques of the definitions and he’s steering us in the right path. I hope he’s in the thick of creating the next definition. I imagine it will be based largely on his work.
Personally, I find Jason’s research not helpful. He continues to focus on fatigue and other non-objective things. At the end of the day, the definition still revolves around being tired. I still don’t see how it differentiates people who have “Chronic Lyme”, “Mold Illness” or other similar conditions that cause “fatigue” and “malaise”. I would think the whole point is to make a local PCP comfortable diagnosing this condition. I don’t think that has been achieved. If anything it just adds another definition and more confusion.
We need a blood test, which Dr. Hornig said she could have in 2 years if her research is funded. That would put all this crap to rest.
Dr. Hornig used the CCC and CDC definitions for EACH CFS patient in her study and if I remember correctly the blood tests were pretty unique (100%) against the control patients and MS patients.
SEID is for Clinical use, the CCC and CDC are for research purposes anyway. So are most of the definitions out there. The usual doctor or specialist trying to use CDC or CCC can’t diagnose on their own and several if not a dozen doctors and many, many tests and years have to go by before you can get a diagnosis under any of the other definitions out there.
SEID will work for diagnostic purposes especially if the clinicians recognize that they will still have to run some tests and still have to understand that a patient can have SEID and other illnesses (which is why they often were not diagnosing CFS because once you had another illness the criteria would not allow for a CFS diagnosis.)
If the SEID diagnostic criteria had been around 35+ years ago I would have been diagnosed with it then, not 13 years ago.
Who started the diagnosis of CFS,,,, a symptom is not a diagnosis.
Was the symptom CFS to benefit those who paid for disability?
Is the new definition by IOM any different?
I would appreciate seeing these questions clarified.
Thank you
Dear Joan,
Whether we call if CFS or SEID, that word is the name of the illness we have and not a diagnosis per se. A diagnosis is dependent on an agreed upon definition which is what the Institute of Medicine as ordered by Health and Human Services came up with via a review of the research literature and thus the 4 necessary symptoms. Unfortunately, as with some other diseases, CFS/ME/SEID (some organization will formally have to decide what our illness is to be named and soon, I hope) we don’t have a laboratory or genetic test available yet that would determine positively if we have CFS. Therefore, other diseases and disorders must be tested for and excluded in order for CFS to be determined as at least one of the diseases present. One could have Rheumatoid Arthritis AND CFS both. I may have just further confused you but this is my best shot at the moment. marcie
I don’t think the IOM definition is so bad as some people suggest.
I think its darn good! If its going to be used as a research definition exclusionary factors need to be in there but otherwise it’s a huge step forward. I don’t see how it could be otherwise actually. It really is, in my mind, an updated version of the CCC.
Some very good points made in the comments. Joan, the diagnostic criteria was made up by a group of experts (some liked by patients and some not) under CDC leadership so that it could be researched. Holmes definition was first with “CFS” label, I believe. Fukuda was also group of experts (some liked by patients and some not) under CDC leadership to improve on Holmes.
Yes, the IOM definition is different. It has some that were required that others considered optional. It includes OI, with Fukuda did not even acknowledge. It focuses on function instead of the complaint of fatigue. It’s loss of function with fatigue, not just fatigue complaint. It makes what is often referred to as the hallmark symptom: PEM, a requirement. It is simpler for a clinician to use and understand. All but one of the symptoms is based on research of objective abnormality found in some studies. All the required symptoms have been shown in many studies of patients to be found in high numbers of the patients. So, they are not sometimes symptoms, but so common as to be considered almost always seen in all patients. (Which is why pain is removed.) They are also symptoms that help to distinguish from other conditions, especially when taken together. PEM, is a good example. But pain was not included because pain is very common in other conditions, so it won’t help in diagnosis. Also, as stated by others, the IOM definition can be comorbid with other conditions. This will help the legitimacy of the condition as a separate entity and not just a wastebasket diagnosis, what it is when the doc can’t figure out what it really is, which is how many clinicians view it now based on criteria now in use.
And most importantly, it would do away with “chronic fatigue syndrome” and all the misunderstanding and confusion that moniker has caused.
I hope that answers your questions.
Hi Tina,
I hope you are doing well.
You wrote “And most importantly, it would do away with “chronic fatigue syndrome” and all the misunderstanding and confusion that moniker has caused.”
The IOM did attempt to do away with the name “CFS” and that was long over due. However, I don’t see how they lessened the “misunderstandings and confusion” caused by the name when the symptoms used to define SEID are so common amongst patients with a range of other conditions (major depression, MS, lupus, etc.).
The problem is compounded by the intent of the IOM panel to develop a CLINICAL definition. The target audience is the universe of primary care providers with little or no experience in diagnosing or treating ME/CFS. Those docs do not have the time to read the entire IOM report and many on the clinician forums (e.g. Medscape) have already pointed out that using the SEID diagnostic criteria in practice will depend upon a significant amount of subjective judgement (already a problem leading to patients being dismiss as having a psychiatric disorder and not a physical disease).
Take care,
Shane
I agree they will not read the whole report. However, I think the term “exertion intolerance” and “systemic” communicates a distinction from some other diseases and certainly from chronic fatigue.
I went to a post office and saw the postmaster who has known me for a long while. She knew me as I was getting sick. I used to go to the post office often for my business, but I hadn’t been in a long while. Naturally, she was curious and concerned about my health. I told her I still have good days and bad days. Then I told her there is a proposed new name for the disease: “systemic exertion intolerance disease, which means exertion creates a cascade of biological dysfunction that makes me sick, like I have a bad infection.”
There were a couple of other post office workers listening. I talked a little bit more about other stuff. Then the post master asked again how I am doing. I said I feel pretty good today, but tomorrow or the next day I’ll probably crash and not be able to get out of bed. “And do you know why?” I asked. One of the other postal employees said, “Because you exerted yourself today.”
The name communicated PEM and helped in understanding this primary symptom without the criteria, without scientific studies or three pages of explanation. One simple sentence of the name and a few words of what that name means made a big difference.
Now, I wish they had not continued with “post-exertional malaise.” I have another term I think is better. But I do think the name and criteria is a step forward, a big step. I wish it was a leap or a giant step. It’s not. But if doctors could understand this one symptom better, it would help a lot. They wouldn’t judge us based on our perky demeanor in their office. They would understand that symptoms come and go and to not suggest an exercise program. They would get some insight into the “systemic” and “intolerance” biology, just like gluten intolerance.
To be honest, patients have said PEM is what our disease is and it’s different than other diseases. So, the IoM committee used the name and criteria to communicate that point to clinicians, even if they know nothing else about the disease.
They did provide a quick question algorhythm for doctors to use to determine if someone has ME/CFS.
I think Lenny would agree that more work needs to be done to create “structured interviews” that ensure that everyone – the doctors and the patients – are on the same page. I don’t think the IOM report called for those but I could be wrong.
Thank you Tina & everyone else who helped clarify my questions. I understand those who are receiving/have applied for a disability income are worried. Is there any way to find out if SEID will improve the acceptance by Government and Insurance claims for disability?
I don’t think it will affect those currently on disability. The report can be used to show the biological abnormalities that are most likely the cause for most of the symptoms. It makes it a real disease and moves it away from presumed psychological to physiological in all the studies it uses as references for neurological, immunological and energy system.
I understand that some may worry that they may not meet the IoM criteria. I can’t see Soc. Sec. requiring all with the diagnosing having to be rediagnosed to continue their benefits. Could you imagine how many that would be.
Now for those applying, I can see where the IoM criteria may be the basis for diagnosis. But correct me if I’m wrong, but I think for the diagnosis, Soc. Sec. Does not verify the applicant meets a criteria but depends on the doctor’s judgment in giving the diagnosis.
An Canadian attorney has written that the report will significantly help with disability evaluations and a US attorney I spoke to believes it will as well – although it will take time.
Like many, if not most, of us who were on Disability for income, and who could not work even thought we wanted to, I lived (until retired now, after 25 years of CFS) in fear that one of these yahoos would change the ‘official definition’ of CFS, and I would be out of it for some reason (even after having been properly diagnosed, excluded every other possibility, and have not gotten much better even as I’ve learned to managed my symptoms as much as possible).
That fear is very real – and is still there for those who are on Disability – while all these people who are not sick, and not affected financially, waffle about definitions.
Instead of figuring out what the heck this is, and how to fix it.
It is exhausting to live in fear for that long.
Alicia
I am very concerned about this. I got my letter from SS for my 3 year review and have not heard from them since.
They will usually send a letter back saying we will not be reviewing you at this time and you will be up for review in 3 years. So not hearing from them yet tells me they are digging around.
I was hit with my thyroid blowing last year as well as a breast biopsy that ended up with an infection from the biopsy and also had a lot of visits with counseling and seeing an ENT, Allergist and Neurologist for my migraines (they all ended up booting me back to my Rheumatologist) so I think when they saw all that they figured they would dig around to see what was going on. They review not just to see if you are still disabled but are your doctors bilking Medicare.
But I am nervous about the criteria too. But, it is not officially changed yet, still a proposal.
It’s a constant worry – they have no conception of what people with CFS go through in collateral damage.
Some of it is that we get less fit as time goes on (and older). But the stress isn’t helping, is it?
I believe that the older one becomes with this diagnosis, the more likely SSI is going to just leave you alone. I, too, went through the 3 year checks a number of times until I got into my 50’s when I received a letter stating that for all intents and purposes I was forever disabled and would no longer be having to show evidence of such. A huge relief but kind of a bummer, too, accepting the sick forever part.
Thanks to all for another great, enlightening discussion. What a quagmire. Fatigue and systemic extertional fatigue ( with various neuro symptoms) are all part of the Chiari, syringomyelia, tethered cord symptom profiles. And neurosurgeon experts can not even agree how much Tonsillar herniation ( in Chiari) is symptomatic. And then there is Chiari O. They can not agree on how big the syrinx must be to cause symptoms, or at what level the spinal cord must end to be considered tethered cord.
Is this relevant to SEID diagnosed patients? Well, we had 2 people in support group who were diagnosed with a syrinx after getting full spinal MRIs. Another person read me her sacral MRI – intraosseous lipoma at S-2. This is totally characteristic of a lipoma in the filum – ie tethered cord. Have we all had full- spinal MRIs – including the sacral canal? What about sophisticated urodynamic studies to explore the possibility of tethered cord.
I’ve been thinking about Dr. Jason’s proposed criteria for a couple of days since first reading. I understand what he’s getting at about word-finding, but I think that’s open to the same confusion that “fatigue” has been. People with full health DO have problems finding words, especially as they age, just like everyone has fatigue to some extent as they age or just try to achieve in our culture. The difference in word-finding and verbal expression between those of us with ME/CFS/SEID and healthy people is that effort to or pushing through to find the word or clarify the thought will lead to PEM. Healthy people can find it and go on, even if it takes some thinking to find it. If Jason’s phrasing can capture that distinction, it’s a fine criteria.
Thanks Cort and everyone for great discussion.
“The difference in word-finding and verbal expression between those of us with ME/CFS/SEID and healthy people is that effort to or pushing through to find the word or clarify the thought will lead to PEM. Healthy people can find it and go on, even if it takes some thinking to find it.”
You hit PEM on the head.
I sometimes think that doctors who have worked in the field for years and on definitions and criteria and research feel left out or take themselves out of the process because they will lose the credit they feel they deserve as the search for answers continues. Although everyone can feel that way in any job or position, tough.
No one doctor or researcher ever holds they key it is a process that builds and builds and corrects and different paths are taken. We need to move on from Jason because the answers do not lie with him anymore. Perhaps he built a structure that was recognized and information was derived from it but we as patients, caretakers and advocates have to move on with those who are also moving forward.
The IOM SEID proposed name and criteria will probably go into effect. People are only stuck on CCC because they did not get what they wanted, for this to be the US clinical criteria. But since it hasn’t worked out in diagnosing patients all that quickly (taking years for most patients in Canada) we need criteria that accurately and quickly diagnoses. Fukuda took up to 10 years and if it only took you a few to be diagnosed under it as well as ICC then you were fortunate.
Drs. Hornig, Lipkin and Montoya have been supportive of the IOM and SEID. That is good enough for me because if anyone is at the forefront of research, they are.
Time to leave Jason behind, just as those with Fibromyalgia have left Dr. Wolf behind. He did a lot of hard work but when things did not go his way or his name is not recognized by most for his work, he took a hissy-fit, IMO.
I was remiss in not mentioning Dr. Klimas. I am sure there are others.
I will once again harp on my current issue: until a clinical diagnosis and name is finally agreed upon, we will continue to wait for medical students as well as current practitioners to ever become educated as to our disease . I have spent a great deal of time at the Medical College of Georgia attempting to find a single student who even knew what the acronym CFS stood for. Also, of all the Family Practice clinical physicians, none knew anything about CFS/CFIDS/ME/SEID so they certainly were never going to consider it within the list of possible diagnoses. I certainly don’t need to remind any of us how few specialists are currently available, how long it takes to see them, and that they are unable to take Medicare insurance thus making simply being diagnosed an expensive and almost impossible endeavor. Somehow we must move ahead and through this so that every MD will know how to recognize that their patient may have “this” disease.
I loved the earlier comment about how just trying to come up with a word in our brains is sufficient to crash us. It doesn’t take much and can be due to emotional stressors as well which seemingly can throw us back into the psychiatric pile although I’ve finally come to accept the mind-body connection and the concept of psychosomatic disorders without becoming instantly livid…. and helplessly fatigued for days on end. ANY stressor is a stressor and that likely varies from individual to individual and the particular stage we’re in with both our lives and this disease.