IOM: Report Card

It’s here. A new case definition and a new name. It will take some time for me to get through the 300 page report and prepare a more detailed analysis. But based on the press conference and summary, how did the report stack up to my criteria for success?

Post-exertional malaise: This was my drop dead deal-breaker, and the new definition makes PEM the central feature of the disease. Dr. Clayton said that PEM was “the essence of this disorder,” and it is required for diagnosis.

Core features: As I had hoped, the new definition requires only four symptoms for diagnosis: a substantial decrease in function (work, school, social); PEM; unrefreshing sleep; and cognitive dysfunction and/or orthostatic intolerance. These core symptoms also match what Dr. Lenny Jason’s work has shown. At the press conference, Drs. Clayton, Bateman and Rowe all emphasized that this is an evidence-based definition.

Frequency/Severity: Another requirement I was hoping to see. The new definition requires symptoms “persist for at least 6 months and be present at least half the time with moderate, substantial, or severe intensity.”

Name: CFS is out, but so is ME. Citing a need to focus on the key feature of the disease, the committee proposes Systemic Exertion Intolerance Disease. Um, what? Dr. Lenny Jason told David Tuller that the patient community will not like or accept this name. I think he’s probably right about that.

Making the diagnosis: As I hoped, the report provides guidance on how to make the diagnosis, with an algorithm, short list of tests, and clinician materials to be published soon.The committee insists that any healthcare provider can make this diagnosis and start treating patients. I want to read more in the report about how they think this is possible, given the radical under diagnosis we currently face.

No psych: Dr. Clayton was emphatic at the press conference that this disease is not somatization. I’ll be reading the report carefully to see how they address the psychosocial theory.

Where To Next: This is the BIG question. Will HHS accept this name and definition? Who will submit the proposal to create a new code in ICD-10, and what category should it lodge in? Will the name CFS simply be replaced with SEID, without refining the research cohort selection?

Dr. Clayton said that this report gives advocates the “fodder” to “act up.” Will we? Can we find a way to pull together and use the good parts of this report to advance the cause? That is the question that will keep me up tonight.

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61 Responses to IOM: Report Card

  1. Lisa Petrison says:

    This is a name that Sir Simon Wessely would fully endorse. Which makes it an epic fail in my book.

    Can’t wait to read the whole report. 🙁

  2. Nancy Henson says:

    Systemic Exertion Intolerance Disease is no better than Chronic Fatigue Syndrome. The focus is on fatigue. That it is systemic is good and defined as a disease is good. Why couldn’t they come up with something more like ME. All this will do is let CFS hang on into infinity.

  3. Michelle B. says:

    Thanks for this post, and your blog, of course.

    Personally, and I may be a minority, the proposed new name for CFS sounds better than CFS. At least, systemic is in there, and exertion.

    I’m still confused about the psyche part.

    Michelle B.

  4. Laurel says:

    I don’t like the name either. It’s CFS all over again, and leaves us open to being called lazy woolgatherers.

  5. Chris says:

    Jennie, wow, you are QUICK! I agree that the proposed new name is clumsy, but at least it describes us, and underlines the primacy of the PEM requirement–wonder how the CDC will react! Obviously this will not change the situation overnight, but it sounds very good to me overall–will I fear wait before buying the book–that is a lot of Canadian dollars! Now see how reactions come from NIH and CDC and others–but what a difference from the P2P stuff!

    I note two interesting comments in the brief account–under “What will these new criteria mean for clinicians” is placed this: “Avoid the prescription of potentially harmful therapies”–points at GET? I hope this is elaborated in the full report. And under “Recommendation 1″ is placed this: “A new code should be assigned to this disorder in the International Classification of Diseases, Tenth Edition (ICD-10) that is not linked to ‘chronic fatigue’ or ‘neurasthenia’.” I like that suggestion!

  6. Cecelia says:

    Dr. Clayton said that the IOM group sent a lot of suggestions to their funders, which include the NIH, HHS and the FDA–that is what I recall. Maybe the CDC was on the list. Clearly all those have the full report too. They have passed the ball. I like that they emphasize the need for another review of the research data in no more than 5 years.

  7. Suzy Chapman says:

    I shall be interested to see, within the report, whether a symptom duration of less than 6 months is recommended for children and young people. Delays in a firm diagnosis can result in considerable problems for families with schools, Educational Welfare Officers, community paediatricians and social services.

    If these recommendations come under consideration for ICD-11, ICD-11 permits multiple parentage, ie, diagnostic terms can be assigned to primary and secondary parents, within the same chapter or across two or more chapters.

    So the ICD-10 concept of discrete chapter location has been dispensed with for ICD-11.

    In 2010, the ICD-11 Revision Steering Group posted a discussion paper on the potential for incorporating a new chapter into ICD-11 for Multisystem diseases, but this proposal has since been rejected.

    In 2013, consideration was being given, instead, for generating a multisystem diseases linearization – as a virtual chapter – compiled from the Foundation Component which is a list of all ICD disorders and diseases, but there would be no separate Multisystem diseases chapter within the print version.

    It isn’t known whether a decision on how multisystem diseases should be represented within ICD-11 has been reached yet, but there is currently no ability to generate a multisystem diseases linearization from the Foundation Component, at least not within the public version of the Beta drafting platform.

    • There is an entire chapter on pediatrics. It does use the six month criteria, but states that children can and should be given a preliminary diagnosis earlier, to be confirmed at the six-month mark.

      The committee expressed astonishment that after so many years, there were only a handful of studies of the impact of the disease on children and adolescents (I am remembering Bill Reeves saying in testimony that he didn’t think it affected children or teenagers, so why bother studying them?).

      The chapter finished by saying ME/CFS was a major reason to have to miss school, and that school authorities should be careful not to diagnose these children with school phobia.

      • Nancy Henson says:

        I’m glad they are going to focus on children. Horrid circumstances have arisen with sick children not being believed. But Dr. David Bell studied children in his practice when he was still able to practice. He must have a ton of study data to contribute. He had a web site years ago just for children.

        But he did treat adults as well but the children really were his focus and probably because of how they can be taunted in school and not believed even though they were just too sick to attend school let alone be able to study, etc.

  8. Here is what concerns me:

    1. According to the Washington Post: “Treatments can include drugs such as anti-depressants and sleeping pills; gentle exercise and psychological counseling; and lifestyle changes such as limiting stress, caffeine, nicotine and alcohol.”

    2. One of the panelists was an “expert” on neurasthenia (an outdated and sexist psychiatric diagnosis often paired with hysteria). Think of neurasthenia. Now go back and look at the criteria.

    3. They dumped M.E., not their right, really, because it was not a US diagnosis.

    4. You also asked what I think is the $64 million question: where will it be coded in ICD-10-CM? That will really tell you what this is going to mean.

    • It appears that they have explicitly ruled out neurasthenia. I’ll switch that problem with the absence of anything about immune defects or viruses – or even the Fukuda suggestion that researchers should identify homogeneous subgroups.

      Mostly, the door for psychiatric diagnoses remains wide open. Which is the main path by which patients are abused. Frustrating.

    • Anne Boyd says:

      The Washington Post article also drew on older sources (I heard NIH or CDC website) for their article and kind of jumbled that older information up with the information from the IOM report. It’s misleading because it makes it seem like all that stuff was actually in the IOM report. This may be a problem with some of the other press, so check the report itself for confirmation.

      • You’re right. I downloaded the full report (available for free) and treatments are only vaguely discussed in Appendix C, and they pretty much mention only CBT, and I wouldn’t call it an endorsement. Mostly they say more research is needed.

        And I have to admit it’s the first decent bibliographies I’ve ever seen from the govt. on this subject. Each chapter has a bibliography.

        I only found one sentence at the end about the possibility of subgroups (as part of a well-defined subgroup I find that enormously frustrating). They are still saying it’s possible, not that there’s not a lot of evidence. (As someone who published in the peer-reviewed social science literature, I think there IS a lot of evidence to identify subgroups via immune and virology all testing NOW.

        For the record, you CAN identify cognitive problems in someone who has a high pre-morbid IQ – you can use SAT test scores, for example, if taken before the patient got sick.

        I remain concerned about this being used to dump M.E. internationally, which would be just plain wrong …

        And any definition that relies on subjective and fuzzy criteria, n matter how much closer that criteria is to what we really have (and this is), still leaves us open to abuse.

        But the full report – IF USED – has a lot in it that can be helpful.

    • Flo says:

      Mary, I think that the author of the article, Lenny Berstein, got the stuff about treatment from the Mayo Clinic website–not from the IOM report. Bernstein embeds a link to the Mayo Clink in his sickening sentence about treatment:

  9. billie moore says:

    That new name is PERFECT. “Systemic” – I have been telling people for years that this is a “systemic disease” to try to get across to the uninformed how serious and all-pervading it is. “Exertion intolerance” – REQUIRED as part of the definition – how infinitely better than “post-exertional MALAISE” – ptooey, ptoeey on that horrible phrase. “Disease,” not “disorder” or “illness” – DISEASE. YES! Plus, SEID is new, uncontaminated by old notions, including ME, accurate and in no way that I can see suggests a psychological or somatic disorder. Let’s be open minded about this. If, as Dr. Clayton strongly suggested, this report gives us much to carry forward and ACT upon, let’s read it and give it a chance. I opposed this IOM effort at the beginning. I am delighted to see that I am likely to mostly wrong. Let’s see where it can take us.

    • Flo says:

      Loved your post. I was surprised to see in comments on David Tuller’s article in the New York Times that many people make fun of the words “exertion intolerance” and “exercise intolerance.” To me, that’s the heart of the disease. Funding should go to measuring it and finding out WHY. I also dislike the psychiatric term “malaise.”

  10. emma6 says:

    Oh, for pity’s sake. Stop renaming it and do some damn physiological research. There is nothing wrong with the name M.E. It does exactly what it says on the tin. Myalgic Encephalomyelitis. Swelling of the brain stem and spinal cord. Why can’t you just use the same name as everyone else?! Now shut up and do some damn research!

    • Jim Ellsworth says:

      Yes, absolutely. I don’t care what anyone calls it. I just want it to stop. Without REAL funding for REAL research, everything else is just re-arranging deck chairs as patients continue to suffer and die, like our own advocate Vanessa Li. May she rest in peace.

  11. Catherine says:

    I’d like to see the word “neuroimmune” in the name. I can still predict “extertion intolerance disease” eliciting scorn. Instead of saying, “Oh, CFS? Yeah, I’m fatigued too,” people will say, “Yeah, I don’t like to exert myself either. I’d watch TV all day if I could.” SEID is better than CFS, but not by much, IMHO.

  12. Michelle says:

    Systemic = affects multiple systems of the body
    Exertion-intolerance = exercise will make this worse, not better
    Disease = not a “syndrome” or a “disorder” but a disease

    Doctors will not diagnose an “encephalomyelitis” without consistently reproduced inflammation that is demonstrable on MRI. White punctate lesions are also seen in healthy people so they are not helpful as a way of distinguishing patients with inflammation — if that’s even what white punctate lesion signify.

    Emphasizing that exertion is bad is always good in my book. The committee essentially streamline CCC and stated the criteria must be reviewed in no more than 5 years. My list was pretty much the same as Jennie’s and they appear to have met them all. And it’s not like ME has been working out really well for British patients.

    • Flo says:

      Good one, Michelle.

      • Claire says:

        I agree.
        The name ME is as bad as CFS since the “E” encephalomyelitis part is proving hard to find. It feels like we are trying to hold onto an old name because it sounds good. It appears that the UK uses the term ME more than CFS yet they treat the people with it the worst.
        I’m all for a new name. SEID isn’t perfect but it’s a start.

        • But what if those if us – like me – who DO fit both the historic and technical definitions of M.E.? What of other nations, where M.E. Has been diagnosed for SIXTY YEARS – the US is the one who rejected it. I not only fit the Ramsay criteria (1986), but off Ampligen I have symptoms of both encephalitis and meningitis, and we found active viruses in my spinal fluid known to cause both. And I have significant muscle pain. So why are they rejecting the name M.E. for those of us who have it?

          The combination name M.E./CFS goes with the Canadian Consensus Criteria of 2003, which used that terminology because Canada had just explicitly placed M.E. And CFS in the same category at G93.3 when they adopted their version of ICD-10, ICD-10-CA.

          Otherwise, M.E./CFS was a devise for introducing tunnel-visioned Americans to M.E., and that has now backfired.

          Did that committee really have the right to reject M.E.?

          • Nancy Henson says:

            I would speculate – and perhaps be wrong – but politics always seem to come into play in these matters. They do not put themselves in the shoes of the sick. Nor do they look into the depths of the sickness to really understand it enough to derive a proper name from what they know.

            There is a very long report with a lot of good information from what I’ve heard but why spoil it with another humiliating name? Why not pick something that reflects the neurological nature of the symptoms. I don’t believe they were right to toss out M.E. I’m sure many believe the same. But how do we fight the powers that be. I wish I knew.

            I got sick in 1984 when I think it was Epstein Barr but I had no doctor that took it seriously. But I learned from others who had the disease as well. Eventually I got the FM diagnosis. But it wan’t until 1997 that I got the CFS diagnosis. It was about that time I read Dr. Ramsay’s definition and I got so excited and knew THAT’s that I have…M.E. My first symptom was vertigo. I’d had a cold several weeks before but nothing bad like the flu.

            After that the war raged within me. I was well enough to drag myself to work everyday and crash on the weekends. And when I hired someone to clean my house, I had to put up with sarcasm from many who had no clue how dizzy I was as well as all the other symptoms like gut problems and constant aching, etc. I’d acquired. Dr. Cheney called us the walking wounded. Not everyone is bedbound but we still are sick with what Ramsay described and named M.E. But it was 8 years of torture until I was forced to take early retirement.

            M.E. is the proper name and nobody can convince me otherwise.

          • Michelle says:

            Why can’t you have both (ME and SEID)? Dr. Clayton made clear that SEID should no longer be the wastebasket that CFS has been. If you have post-exertional malaise, cognitive difficulties, and unrefreshing sleep, you have SEID. If, in addition, you also have demonstrable inflammation of the brain and/or spinal cord on MRI, then you have encephalitis/encephalomyelitis along with SEID.

            To be sure, the science may clarify that SEID/CFS/ME/insert name of preference here IS a disease of chronic encephalitis based on improved MRIs or new use of PET or SPECT scans. The science isn’t there yet perhaps because nobody has been able to do the science showing that because HHS has woefully underfunded this disease. Which is why the panel has recommended revisiting the criteria and name within the next 5 years as the data becomes more apparent.

            Yes, I foresee “I’ve got ‘exertion-intolerance'” jokes. I’d have preferred the clarity of specifying it as post exertional and something identifying pathophysiology on some level (immune and/or neurological). But it’s a step in the right direction. Journeys, 1000 steps, single step, etc.

          • Nina says:

            Thank you for this comment. Thanks.

          • Michele – of course that makes sense – why not permit a diagnosis of M.E. for those for whom it is appropriate. I wish that is what the committee had said. But it did not.

            M.E. Is more than a name. It is a defined disease that has been diagnosed in OTHER countries for 60 years, and was recognized by WHO in 1969.

            Yes, it should still be available as a diagnosis. The committee said no, however. And I do not believe a US committee had that right.

  13. Cecelia Blair says:

    We need to know what is in this report in order to insist on followup. The IOM committee sent suggestions to all their funders including NIH, HHS, FDA and I don’t know who else about what would be appropriate to do next–followup, implementation. Everyone has got the report. We also need to use what is in this report to hold institutions and anyone else accountable to where the science is now “at”. This is our “global warming” report, our climate change evidence, so to speak. But we will also need to be involved in seeing that newspapers, journals, government institutions, etc. etc. do not deny what is in it.

  14. Janelle says:

    Key to the value of having PEM required is how it’s explained.

    I am underwhelmed with the name, but it matters more that we get good science, for which we need new funding.

  15. Pingback: IOM Gives ME/CFS a New Name and Definition | Rag and Bone Shop of the Heart

  16. Nita Thatcher says:

    It is now time for all patients and advocates to kick down their petty egos and to strongly push forward together to promote the good points this report makes. This is an opportunity that cannot be missed. The infighting MUST STOP! That is essential. I hope and pray the entire community can begin to pull together for the common good. Some may not like the new name SEID. Get over it and lets move on. Some may not like that there are so few criteria needed to diagnose this disease. Get over it and lets move on. Some may not like the IOM. Get over it and lets move on. Some may not like it……………. (for whatever reason). Get over it and lets move on. Please, push forward and take this report and ram it down the throats of those who make the decisions about funding research, approving treatments like Ampligan, putting together a new tool kit. etc.

  17. Marilyn says:

    SEID is SO much better than CFS. I’m all for it.

  18. billie moore says:

    I agree with Nina Thatcher. Let’s take what we can from the report, including the name, and run! This report will have double or more the impact with the HHS departments if the community gets behind it. They are all going to assume since we opposed it in the first place that we will spit all over it. Well, we can’t. We have no options. Nothing has worked so far. And this report is positive and helpful; it is not the IOM’s Gulf War report. We can support it if we choose to.

    Cecelia, as for the name, ME has indeed not been a bit helpful in the UK, and it is limiting. It does not suggest a total-body disease, even if the brain and spinal cord inflammation can cause such. It has much baggage. As for the name fully describing the disease, none could, without about 10-15 words! (I did like Ramsey’s Disease also, as it, too, was not already contaminated with prior misconceptions and was so accurate. But the IOM is not going to change their recommendation.)

    What might be even more important than this IOM report is what the Annals of Internal Medicine and JAMA say today in their reports on it. If they disparage it, the doctors won’t care what the IOM says, good or bad. They will continue with their disparagement of the disease. If, on the other hand, they seem to embrace it, it will go miles toward helping our cause of medical education.

  19. Cindy says:

    Are you kidding me? SEID? Yeah, I’m exhausted after exercise. But I’m also exhausted 1 hour after sitting up for my morning coffee, after taking a shower, or a trip to the grocery store. Some days I lie in bed hungry and thirsty, but too fatigued to get up and get something. I think this name is worse than CFS. Now it sounds like we all just get tired after some exercise.

    • Flo says:

      Hi Cindy. The word in the suggested name is “exertion,” not “exercise.” I agree with you that the latter word would be too limiting. But “exertion” is broader. It covers drinking your morning coffee, taking your shower and going to the grocery store. For the severely ill, it covers speaking, sitting up in bed, rolling onto a bedpan. I like it.

  20. Adin says:

    RE: the name

    With the current level of strong medical evidence, I think SEID strikes a decent balance; while it isn’t ideal, it reflects the state of current research. Systemic is more general than neuro-endocrine-immune thereby potentially including additional systems and exertion specifically calls out physical, mental, and emotional exertion – thus something like GET only addresses a fragment of the issue. The name had the potential of helping both patients, care providers, and researchers shed the fatigue stigma.

    I think the real tell will be how agencies respond with budgets, research, provider education, etc. There’s potential to really get the ball rolling….and there’s also the possibility that nothing will really change other than a new acronym to stigmatize.

  21. Robert Morley says:

    I have to agree with Michelle, above, on the problems with the name Myalgic Encephalomyelitis. We don’t know that the encephalomyelitis occurs in all cases, and in any event, it’s not sufficient for diagnosis on its own.

    Is SEID any better? Not in my books! Sure, it’s systemic and there’s exercise intolerance, but at least for me, that’s NOT my primary symptom. Sure, it’s a feature, and I feel awful if I walk for more than 10-15 minutes, but if I don’t overexert, I’m far more bothered by the 24/7 orthostatic intolerance, malaise, and tinnitus. Then there’s the common, but not 24/7, sleep disruption, headaches, nausea, and the never-healing tendinosis.

    Exertional malaise? Next to all the other symptoms, that’s only an occasional issue as long as I’m careful (albeit a massive one when it does happen).

    So SEID? No, that doesn’t work for me at all.

  22. I sleep like a baby and feel great when I wake up in the morning.

    I have severe neurological symptoms that this definition does not capture – of course, it doesn’t need to capture all the symptoms to be diagnostic but I am very worried about doctors not understanding how common certain symptoms are (sound sensitivity, GI issues, muscle or neuropathic pain) if they are not listed. This is so similar to the old criteria except for PEM being required and a large part of the reason I was diagnosed not with CFS but with a psychosomatic illness was because my neurological symptoms were not thought to be a part of CFS and so my neurologist declared them psychosomatic. And while I definitely have cognitive dysfunction, I am so high functioning (brain not body wise) that it would take some digging to surface that.

    If I tell my doctor, sometimes if two people are talking in the other room at the same time and I’m watching Netflix, and then my husband walks into the room and puts his arm on my shoulder, I might then start screaming (sensory overload) and then my heart rate will go up and I will suddenly feel extremely cold, will he say, “Oh, classic severe SEID?” Or will he refer me to a neurologist who will then refer me to a psychiatrist who will then…?

    And what about how overdoing it can lead to severe inflammation of my brain and spinal cord, i.e., the same symptoms as aseptic meningitis?

    Unless the physician’s guide is amazing, I fear severely ill patients will be left in the dust…again.

    • Flo says:

      “I sleep like a baby and feel great when I wake up in the morning.”

      Jen, tell us your secret. Do you have excellent “sleep hygiene?” Follow all the rules? (Please say yes.) Wikipedia: “Sleep hygiene is the recommended behavioral and environmental practice that is intended to promote better quality sleep.”

  23. Valerie says:

    I am not moved by the name at all. I don’t think I will feel much different calling out CFS or SEID when I explain it to doctors or the general public. In my experience, they both feel like superficial symptoms to a much deeper problem. I do feel the language is important and that the word “intolerance” is like comparing celiac disease to a food “intolerance” which people do not generally respect ;despite them both having severe and equal consequences in some people. Not great terminology nor will it be great for the public to take seriously. I have not read the rest of the report but have it being printed now so I can see. I am sure there are great treasures in the intention and in the work compiled. I would have hoped for a name that did not conjure up preconceived notions like Lupus or multiple sclerosis or celiac disease. People cannot make up meanings for these because they are not in their regular terminology such as “exertion intolerance”. This part is disappointing for sure.

  24. Prefer not to say says:

    Thanks, Jennie (and Nina Thatcher) for setting a positive tone for us to work with the report. I share a lot of reservations that Jen Brea mentioned, but I think looking at the report and trying to figure out how to use it for what we need is probably the best tack, from an activism standpoint.

    And I am genuinely looking for the bright side to this when I ask if someone can help me understand the advantage of the markedly streamlined diagnostic criteria? It strikes me that even a grave disease like multiple sclerosis has a rather elaborate diagnostic criteria, so I’m not entirely sure why the committee felt so strongly about so radically streamlining the criteria for ME/CFS/ SEID.

  25. rivka says:

    thanks, jennie, for your fast assessment. very helpful.

    lenny jason was right (in the NYT article cited above), i don’t like the name at all. still sounds trivial to me. and it is based on malaise, which is still in the definition of the disease. malaise sounds just as belittling as fatigue. and, as one patient wrote in phx rising, if i go to my doctor and say “i think i have systemic exertion intolerance disease,” s/he’ll tell me, “so don’t exert yourself so much.”

    what we need now is funding, funding, funding. research, research, research. clinical trials, clinical trials, clinical trials. will that come based on this IOM report? we certainly got a lot of media attention today. whew. but will that translate to $$?

    – rivka

  26. rivka says:

    by the way, i can not exert myself at all, and i may still be in bed the next day, week, month, year. so this disease for me is not so much based on exertion, tho exertion does make it much worse. just BEING makes me sick.

  27. Final thoughts:

    As THEY explained it, the impact of “exertion intolerance” fell on numerous systems – not just muscular, which is what tiredness invokes. So the “systemic” part is the RESULT of the exertion intolerance, and the intolerance is for exertion anywhere – cognitive, physical, whatever.

    As we have already seen, the press does not seem to have absorbed all that. I’m not sure anybody will, unless they really want to.

    Peter Rowe was on the committee and … We have a very respectful description of dysautonomia.

    Lenny Jason was in the committee and I do believe the report trashed PACE and the other research behind CBT and GET. They said multiple times that the disease is not psychogenic. Also the chapter on pediatric “SEID” is not bad at all. They took it seriously and said school administrators should not assume things like “school phobia” or goldbricking.

    That tells me that somebody there was capable of listening. And that Rowe and Jason made good cases.

    IF – and this is a big IF – NIH wants to move on to fund research based on this new definition, I think we can get other findings accepted. IF.

    And IF – and this is also a big IF – CDC pays attention to this report, their “toolkit” and website will have to change dramatically. IF.

    The two things that frustrates the bleep out of me is the totally ahistorical, American-centric treatment of M.E., and the reluctance to give any credibility to testing and research on immune defects and pathogens.

    Other than that, we will have to see what happens next.

  28. Michael Allen says:

    1. Will this lead to a big increase in research funding from the NIH or not? Why should it? The NIH has stonewalled increased funding for 30 years. Why will this report change the attitudes of the key decision-makers there?

    But if it does then it has been worthwhile.

    2. The name. Systemic Exertion Intolerance Disease. While it captures some important elements will not be taken any more seriously than Chronic Fatigue Syndrome. I respect the good intentions of the committee in creating it but I am quite sure as a writer and a psychologist that it will be misunderstood, i.e., it sounds like it references people who are intolerant of exercise, that is, people who don’t want to exercise. Doctors are incredibly busy and they need to hear a name that really sounds like a disease, such as M.S., ALS. R.A. and Lupus. This may have disease tagged on at the end but that won’t make doctors believe it’s a disease.

    I think, ultimately, the only way out of our 30-year trap is research from someone, somewhere that makes for an inarguable case for certain pathophysiologies. It might happen faster if the NIH would help. Won’t take long to find out.

  29. Annie8 says:

    I agree with Jennifer Brea. The new criteria does not address those who have severe neurological manifestations of disease. Where do they go for diagnosis and treatment? Is SEID a subgroup of a larger disease process that includes symptoms such as ataxia, seizures, vertigo, chronic infections, immunological deficiencies, severe headaches, mild cognitive impairment, etc. or are we talking about two different diseases entirely? Symptoms of SEID are a small part of a horrific disease process that continues to rob the lives of so many! Five years is too long to wait for our governmental entities to get this right. When SEID is adopted the neurologists will be given a free pass to continue to ignore the most seriously ill patients, once again.

  30. gradual-onset & disabled since adolescence. now in middle age. says:

    Immune system dysfunction needs to be included in the diagnostic criteria.

    Chronic, low-grade fevers and sore throats are one of the key features that distinguish this disease from other diseases that have severe fatigue as a symptom. Immune dysregulation is one of the things that *can* be tested, and that doesn’t rely on what some will dismiss as subjective reporting.

    Subjective reporting and subjective misinterpretation are huge factors in why we’ve been dismissed for decades now.

  31. Robert Morley says:

    @gradual-onset & disabled since adolescence. now in middle age.

    While immune system dysfunction appears to be a distinguishing feature, not everyone gets low-grade fevers or sore throats. Some people, myself included, have dysregulation in the other direction where the immune system becomes overactive. We don’t tend to catch anything, even when the rest of the family has it, or if we do get something, it doesn’t last long at all. I don’t know if it’s a strong co-relation, but I believe those are the same people who don’t get the fevers and sore throats. Sadly, I’ve heard from several people that during the course of their illness, they switched from super-immunity to low-immunity. That hasn’t happened with me yet, but it may.

    I don’t disagree on the subjective reporting problems, though. I’d say the fact that many previous diagnostic criteria have relied on purely subjective reports is what has given hypochondriacs a home in our wastebasket and allowed the psych-proponents to claim it’s all in our heads.

  32. Let’s hope that the name encourages research for all autonomic and immune dysfunction. Not all ME/CFS patients have POTS or NMH, though none of us do tolerate activity without a shutdown at some point. At least they recognize the core issues. Systemic is the key word here. Finally! Now, if we could only see this for FM patients who have taken a big hit due to the Wolfe criteria. Rock the boat SEID!

  33. A day later, and this has been all over the MSM – and is getting respect! I have to say I am impressed. Very nice article on the front page of the SF Chronicle today.

    I guess we wait now for the P2P report and the responses of NIH and CDC …

  34. Chris says:

    I think overall this is a good review, with great bibliographies of relevant stuff, though I do feel they underreported, under the “fatigue” label, the gathering research pointing to muscle-mitochondria problems–work by Sarah Myhill and her colleagues, with a test to boot, the research showing rapid build-up of lactate in muscle cells, the very recent evidence that our muscle fibres have shifted from slow-twitch to fast-twitch–things going on here that definitely play a large part in our fatigue and PEM .

    I can live the new name–it is reasonably descriptive, though still sounds vague and a bit unreal–but wish they had seriously considered “Ramsay’s disease”; there is good precedent for using a name–Parkinson’s, Huntington’s, etc.–and more than that, it would reconnect over a gap of over 30 years to the moment in time when good research was making headway, until derailed by the psychs with the claim that the Royal Free Hospital outbreak was simply female hysteria (put a bunch of women together, and what do you expect), and the ensuing take over by the Oxford and “medically unexplained” and all that stuff.

  35. Nicole Binns says:

    It’s been many years since I tried to research chronic fatigue, as such, online. Now I have come back to read about it after many years, and I find out that people out there are trying to identify it, people are talking about it, it still exists out there in the world and it’s being taken seriously.

    My reaction to the name change: I like it that it more clearly emphasizes exertion intolerance. That’s what I’ve been trying to explain to my boyfriend, who believed that exercise would make me feel better. The one day when I did some push-ups with him, for fun, I had to call off sick from both jobs the next day because I was so dead exhausted and my entire body was in agony. All I did was a few push-ups. If it’s so severe that I have to call off sick from work the next day, something is wrong. Exertion doesn’t help, although I also feel worse if all I ever do is sit inside – I enjoy a gentle walk outdoors, and if I feel well I can jog just a little bit, but not much – if I walk too far, or jog more than just a little bit, I can be knocked out for days.

    So I’ve been away from the news about chronic fatigue all these years, and I’m just getting back into it now, because I am considering trying to get some kind of disability payment from the government, which I was never willing to do before. In order to get any kind of disability payment, you have to have something that they acknowledge is real. I’ve been unemployed since November, when somebody had the brilliant idea to spray pesticides all over the entire restaurant where I worked, and I got so sick I had to quit/get fired from both jobs – I tried, I kept telling them I would try to come in to work, but kept having to call off sick or go home shortly after I went there.

    I’m also trying to transition away from asking my parents to send me money every time I lose a job. I’ve had recurring job losses due to fatigue and chemical sensitivity, over all these years, since about 1998 or so when I first got sick. My parents are quite old now, retired, and they need their money and can’t send it to me every time something happens, so I’m trying to get government help now, which I’ve never done before.

    A strange illness went around the whole town in 1998, and a bunch of people I talked to got this illness all at the same time – one of the strangest, most unique, most noteworthy symptoms of the illness was a feeling that you didn’t want to hold your head up, a feeling of weakness and fatigue in the back of the neck, so that if you were sitting at a desk, you had the urge to lay your head down on the desk rather than holding it up. Several people spoke to me of this exact symptom, which I also had, which caused me to lose the job I was working at at the time. My ex-boyfriend also had that exact symptom. We also had a digestive problem that came with it, but mostly, overwhelming fatigue was the primary symptom. After that, I never went back to the way I was, and it’s 2015 now. I improved slightly, and found ways to avoid ‘triggering’ it, and found a few tricks and helpful things, but still never went back to my old self.

    Anyway, now that I’m trying to stop asking my elderly parents for money every time something goes wrong in my life, I’m once again interested all of a sudden in the definition of chronic fatigue, the name of it, what people are saying about it, do they take it seriously, is the government recognizing it as real. I don’t really care so much what a doctor thinks I have – I’ve long since decided that most doctors range from either useless to downright evil, with just a small minority of them actually being helpful and intelligent.

    Note, my dad is a retired radiologist, and my mom is a retired nurse, and they met each other in medical school – I love my parents and I exclude them from the ‘I hate all doctors’ statement – and the truth is, I did occasionally find doctors who were kind and helpful, I’m just very prejudiced against them after a lot of bad experiences, especially after hearing the ‘It’s all in your mind’ claim repeatedly. I wonder what the equivalent of the word ‘racist’ would be, applied to doctors? Medicist? I’m not a racist, but I’m a medicist, or a docticist.

    But I can’t afford a doctor anyway, and have no desire to get health insurance. I don’t want drugs. I react badly to every drug I try, and I’m opposed to drugs in principle except in some extreme circumstances. I use caffeine, tons and tons of it, to ease the pain and fatigue, but I so want to quit it – if I quit it now, I won’t be able to finish the paperwork I have to fill out to get food stamps and county assistance, because I will be sleeping in bed all day long, like I was the last time I quit caffeine.

    I’m still not going to be confident enough to ‘act up’ or whatever the word was, giving people fodder to act up. I feel slightly more spirited and hopeful though. I’m not sure I’m strong enough to demand that I receive disability payments for this.

    But I think my hips and knees are the last straw. My hips have gotten bad from riding a bike for the last couple years. I had to get rid of my car, long story, and ride a bike to work. Wow! you’d think. Exercise! Healthy! I’ve survived, but the exercise didn’t do any miracles for me either. Just tons of caffeine every day, destroying my bones, and I’m 40 years old now and can’t afford to be losing any more minerals from my bones. My hips and knees hurt from the bike.

    I’ve realized that in 20 years, I will be in a wheelchair because my hip joints will be so worn down I won’t be able to walk, and I REALLY don’t want to get hip replacement surgery. All implanted objects in the body are extremely toxic, regardless of what kind of material they’re made of, and nobody will ever fool me again into believing that an implanted object is made of some newfangled material that is ‘inert’ and ‘safe’ and ‘nontoxic,’ not after having my mercury dental filling replaced with a plastic one, then reacting horribly to the plastic one as well. If I have to get my hips replaced, I’ll just use a wheelchair and stop walking, I guess, because I don’t want anything else ever implanted in my body again.

    But I need to change my life now – stop working so hard, stop working manual labor jobs that require me to run around like crazy (McDonald’s!), stop drinking a hundred gallons of caffeine every day and depleting all my minerals from my bones. It’s time to retire! I can’t do this anymore.

    I’m so sorry for the rant. I’ve just gone for years ‘self-medicating’ for my chronic fatigue and have suddenly decided to read about it on the internet again for the first time in ages.

    Chronically fatigued people drinking huge amounts of coffee, stuck in bed all day with nothing to do, have an enormous power to rant on the internet and create endless walls of text, which I have now done. This can be embarrassing sometimes. Oh well.

  36. Anonymous says:

    I’m generally pleased with both the new criteria and the report, which are far better than I expected. The report is also much better than the outrageously bad AHRQ report of last year, written by amateurs.

    I like that the name and the criteria focus on the cardinal symptom of our disease: post-exertional morbidity. (Wish we could get away from the psychiatric-sounding “malaise,” though!)

    While I was attached to “M.E.,” that name has already been drained of power, especially in the UK, by becoming synonymous with idiopathic mild fatigue. Anyone can say they have M.E.

  37. Jane says:

    I’m on page 60 or so, but I expect to find that the report itself (when I’m done reading the whole thing) is a step forward. It’s obvious that smart people really went to work on this and that they “got” the disease. I agree with the sentiments expressed above about taking the positives (instead of finding or focusing on negatives) and running with it.

    But this all makes the NAME all the more of a huge disappointment. My initial gut reaction, which hasn’t changed in the 36 hours since I first encountered it and tried to make myself buy into it, is that it is a fail. I can’t take it seriously and don’t want to use it, and I’m a patient, so I’m wary that wider reception will be any different.

    It’s not that “exertion intolerance” isn’t descriptive of the cardinal symptom (which I happen to agree is PEM, PENE). It’s that when you’re not “in the know” about what this symptom IS (the only ones “in the know” are patients/caregivers and the small handful of experts, which the IOM committee who immersed themselves in this became to some extent) — when you just hear the name out of the blue (like most mainstream doctors, medical journalists, and the public will) — it sounds like an innocuous malady and not the severely disabling multi-system organic disease that we have.

    I fully understand that that IOM was tasked with recommending a clinical diagnostic criteria and name, not figure out the etiology or pathophysiology, which is explicitly pointed out in the statement of task. But I do wonder if naming the disease after a symptom was really the only option they had, and wish they could have tested it out somehow (with stakeholders, with members of the medical community NOT “in the know” as a sounding before) before it was simply announced.

    As frustrating as it is, the name affects so much. It’s been a chicken and egg problem that’s plagued us for all this time: trivialized name and illness –> no research funding sufficient to create a name that reflects the pathophysiology –> pathophysiology can’t be reflected in the name –> trivialized name and illness, etc.

    Just had to get that out!! Now back to reading the rest of the report and trying to focus on the positives.

  38. Kathy D. says:

    I think the IOM report is a step forward. At least, people who have knowledge of the disease were part of the panel and those who announced its findings. Finally, it’s a real “disease,” with physiological causes. And it’s systemic. And exertion exacerbates it.

    I think now what NIH does with it is key, like everyone else thinks. Will there be more funding allocated for research? Will NIH rewrite the definition and symptoms (and the CDC)? What will concretely happen as a result of the report?

    There are still glitches. For instances, I can push myself, usually with caffeine and sugar, but then I crash afterwards, often for days. And I’m someone who not only doesn’t get refreshing sleep, I often get NO sleep or, as lately, 3 or 4 hours of it. Then I crash a fwe hours later and can’t even take a shower or do anything at home, even mail bills at the corner or pick up snacks there.

    At least, I can show this to friends, especially health care workers, who are among the most insensitive, in my experience, and show that exercise is not helpful, and is often harmful. I have tried to explain this, but to no avail. Now I can show her the report.

    How are folks getting the full report? I read the 3 1/2 page summary. But are you reading the online or pdf version at the IOM site? I can’t print out 300 pages; my
    printer will break down. And much online reading is hard for me. Any ideas?

    Thanks for posting and this discussion. I have to study everyone’s comments. I
    think this report helps us, but now the ball is in NIH’s court, and we’ll see what happens. I think the activism, comments, emails, calls, must continue to keep
    the pressure on to make real changes.

    • Jennie Spotila says:

      The report is available online for free, or to print out yourself. The hard copy version will be available next month, and you have to pay for that.

  39. Kathy D. says:

    I just looked at the NBC home page and the same story with Lester Holt narrating is up, and the same call-out; nothing is up with a correction on GET and CBT.
    Also, it was shocking that the news showed a woman with hairdo and make-up, doing household and childcare tasks, which many of us could not do like that, but would be lying down or dragging ourselves around the house, sitting or lying down intermittently.

    • Jennie Spotila says:

      Someone sent me the correction text in an email, Kathy, so I’m not sure where to find it on the NBC site.

  40. dlauryn says:

    Some of it makes sense, driving the point home that Dr’s need to stop being ignorant and lazy and start diagnosing and treating, but the name: HATE IT! Feel like I’m reliving the stigma terrorism the media inflicted on us with the “Yuppie Flu.”

    It’s BRUTAL!

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