Your Move, HHS

chessSince the IOM report came out, the patient/advocate online community has been on fire. Everyone is staking out a position. You like the name, or you don’t; you think the definition will work, or it won’t. And I have plenty to say about these issues, too. But what I don’t hear people asking is: what is HHS going to do with this IOM report?

HHS itself has made a single, bland statement. Dr. Nancy Lee said on the CFSAC listserv that, “We are committed to working with our Federal partners, stakeholders, and experts in the field, as well as with the HHS Chronic Fatigue Syndrome Advisory Committee, to review the report’s recommendations and appropriate next steps.”

That’s inside-the-beltway-speak for “we’ll get back to you.”

Remember that HHS received the report at least a week before it’s public release. Remember that the sponsoring agencies received a briefing from the IOM committee about the report, and Dr. Clayton said they were “breathtakingly clear” about their recommendations. I realize that government moves slowly, and there will probably be meetings and actions proposed and approvals sought and so on. But the patient population is reading and discussing the report in public (as well as in private), and I think we all know that HHS monitors the blogs and forums. So we are telegraphing our analyses, controversies, and plans to HHS while they remain silent.

But we need to know what HHS thinks and what HHS is going to do. Fellow advocates, we really need to know this because we must shape our own advocacy to push the right levers and get the results we want. Here are some of the questions I’m thinking about:

  • Will CDC accept the SEID definition, especially the requirement of post-exertional malaise? CDC has refused to make PEM a requirement for years.
  • Will CDC use the name SEID, but simply lay it on the Empirical or Fukuda definition? This would be disastrous for us.
  • Will CDC take down its Toolkit, and put a properly revised one in its place? Advocates have been battling with CDC to remove the recommendation for GET for years.
  • Will HHS appoint an SEID czar, as IOM recommended, to oversee the dissemination of the new name and criteria?
  • Will the National Center for Health Statistics create a new diagnostic code for SEID? Who will be charged with writing that proposal and seeing it through?
  • Will FDA adopt SEID as required criteria? Thus far, FDA has been agnostic on the case definition and said it will accept definitions specified by sponsors. But if FDA were to focus on SEID, that might require sponsors to reanalyze their data to examine participants who meet SEID criteria.
  • Is NIH giving the P2P Panel a chance to revise their recommendations in light of the IOM report? For example, the draft P2P report recommended, “that the ME/CFS community agree on a single case definition (even if it is not perfect).” Does the P2P Panel think that SEID meets that need?
  • And the $100 million question: Will NIH finally step up and provide the funding we need to effectively research this disease?

The answers to these (and other questions) should shape our advocacy. To that end, I faxed a letter to my Congressmen today asking them to find out what HHS intends to do about the IOM recommendations. You can see the text of my letter here, and I urge you to send a similar letter to your own Congressmen as soon as possible.

The advocacy debates will continue to rage for many weeks. In the meantime, it’s your move, HHS. You commissioned this report for $1 million. How will you put its recommendations into practice?

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35 Responses to Your Move, HHS

  1. Cort says:

    Thanks for keeping our eyes on the prize, Jennie.

    The reports means NOTHING unless the DHHS acts on them. In six months they’ll just be more reports.

    The entire purpose of the reports is to spur action. Up until now, the NIH and CDC have thwarted all attempts to move this disease forward significantly. I’ve got to believe that these reports were commissioned with the knowledge that they were probably going to end up like they did. That means some people in the DHHS are pushing for change.

    We shall see – but we must help them out.

  2. Amy D says:

    This is wonderful, Jennie. I will send a letter to my Congressman. As always, I so appreciate your insight and work. Thanks, thanks, thanks!

  3. Stacy Moore says:

    Your clarity is a gift. Thank you for articulating these issues/questions and for the sample letter.

  4. Polly says:

    Finally! Someone articulates what has been nagging at me since I read the first word of an advocate vilifying the IOM’s final product. Thanks for making it clear that it hasn’t been adopted by any agency yet. I will also contact my congressman and ask the question.

  5. Laurel says:

    Thanks for articulating this, Jennie. I’ve been wondering the same thing.

  6. Michelle says:

    YES! Instead of arguing about whether the name is a good (enough) one or whether the streamlined CCC criteria don’t convey our specific symptom set, we should be taking what is a pretty good report and forcing HHS to make good on it.

    I would go one step further and say that the patient community needs to develop a comprehensive advocacy plan so that letters and petitions have strategic, cumulative value that meet clearly defined, specific goals. We have been very reactive as a community (understandable given how debilitated we all are) but we could be more effective if we initiated the agenda ourselves.

  7. billie moore says:

    No. It is not the HHS’s move. It is OUR move. We must spend a few days getting a list of demands, not requests, together for the HHS. Most are listed above, of course. But we cannot wait for the HHS – faceless amorphous behemoth that it is – to respond to us. Just because the IOM came out with sensible and needed recommendations, and just because HHS depts. paid for them does not mean that they will even think about coordinating those depts. to take actions required.

    The IOM is the Big Stick we have needed for decades to get the HHS to do at least some of what is needed for patients. Funding for research. Treatments. Accurate information on the CDC website. Respect by those in the HHS depts. (some will gain more respect; some won’t). Justification by other than our community to create Centers for Excellence to help educate medical personnel and treat patients. Anyone who trashes the IOM because it doesn’t say exactly what you wanted misses the bigger point here. We have received more (mostly) good publicity for this disease in one week – about 2000 times more – than we have had in the last 30 years, and much of the latter was wrong. Even our representatives in Congress and the Senate and their staffs will have heard something about the IOM report. What they will have heard is – the disease of ME/CFS/SEID is real, not psychological. Maybe they will even have picked up that the patients are underserved, neglected, without treatments, suffering badly.

    We need to determine what our priorities are; what WE want the HHS to do, not what they plan to do. We can help the HHS avoid wandering in the wilderness (or hiding behind doors) any longer by giving them specifics about what we want and how to go about it and from what depts.

    • Jennie Spotila says:

      But should we be determining our priorities in public, where HHS is watching? Should we be arguing with each other about the name or criteria in public? I suspect HHS already has a good idea what they will or won’t do in response to the report. They should tell us. In the meantime, we can be formulating our own positions and start prioritizing. For example, if CDC decides to pull down the Toolkit, then there is no reason for us to waste energy screaming at them to take it down. We deserve a more thorough response than what is essentially a one-liner from Dr. Lee.

      • Cheryl says:

        The problem is, how do we strategize in private, when so much of the patient group is fractionalized ?
        I know some has been done before, although my brain cannot bring up the details. Reps from different groups met and conferred. Disagreements of who should rep who were voiced then. And it was not as significant a plan. That said,
        there will always be those who don’t agree. There are some pretty big differences out there and I fear a divide and conquer is on the horizon.
        Perhaps the best approach is to take what we like about the report and add to it things we want. ( IE for me, I like the tone and “meat” of the report but the name is not really much better than CFS. The criteria I am unsure of and would like our own expert clinicians to weigh in on this report — i.e. the signers of the adopt CCC letter. )
        We have a chance to use the foundation of this for good. We don’t have to like it all. But let’s not throw the baby out w/ the bath water as I see so many ready to do.
        Thank you for your attempt to bring us back into focus.

        • PKKühl says:

          I Agree with everything Cheryl said …just add my name I too appreciate you and all your advocacy on our behalf .Thank you.

  8. Carollynn Bartosh says:

    Ditto on your ability to synthesize and articulate, Jennie! And thank you for the sample letter. I will contact my congressman and my senators.

    To your list I would add–though you will know how to better phrase this–striking ME/SEID from the DSM-V (can they do an adendum?) and future DSM’s as a somatoform disorder.

    And since all this IS public: Hey P2P! You can one-up the IOM by making these recommendations! You can bring back into this discussion how at least the encephalo- part of the name “ME” speaks to the many studies that show brain-based anomalies of many systems. I think patients have felt that something the World Health Organization got right is calling this condition a neuro-immune disorder.

    • Suzy Chapman says:

      “To your list I would add–though you will know how to better phrase this–striking ME/SEID from the DSM-V (can they do an adendum?) and future DSM’s as a somatoform disorder.”

      There is no ME or SEID or ME/SEID in the DSM-5.

      For DSM-5, the old DSM-IV “Somatoform disorders” categories were replaced with a single new diagnostic category called “Somatic symptom disorder (SSD).”

      The DSM-5’s new SSD construct eliminates the requirement for somatic (bodily) symptoms to be medically-unexplained. So SSD can be applied as an additional diagnosis to patients with any diagnosed medical condition, for example, in association with a diagnosis of cancer, heart disease, FM, IBS, CFS, angina, MS, diabetes etc.

      With regard to WHO classification of ME:

      “I think patients have felt that something the World Health Organization got right is calling this condition a neuro-immune disorder.”

      WHO has not called the condition a “neuro-immune disorder.”

      It is the case that within ICD-10, WHO locates the terms “Postviral fatigue syndrome” and “Benign myalgic encephalomyelitis” under Diseases of the nervous system (ICD-10’s Neurological chapter).

      But there are no definitions or disease descriptions within ICD-10 for PVFS, BME or CFS (and the latter is in the Index, only). WHO does not set out its understanding of the aetiology of the disease “BME”. All that can be said about WHO’s position on BME is that it locates the term under Diseases of the nervous system as an inclusion term under the PVFS code.

      It is not yet known what chapter(s) the three ICD-10 legacy terms will be proposed to be located under in ICD-11 (or under what parent terms).

      They could, potentially, be listed under more than one chapter within ICD-11, because the ICD-10 concept of discrete chapter location is being dispensed with for ICD-11 and multiple parents are permitted.

      But WHO has clarified that there is no intention to locate ME, CFS or FM under the ICD-11 Mental and behavioural disorders chapter.

      ICD-11 will contain definitions and disorder descriptions for all coded for ICD terms.

      If you are in the U.S., the U.S. is scheduled to implement an adaptation of the WHO’s ICD-10 (called ICD-10-CM) in October 2015. This is the responsibility of the NCHS.

      Currently in the ICD-10-CM, PVFS and BME are both located under Diseases of the nervous system. But CFS (as CFS NOS) is located in Chapter 18 (the Symptoms and signs chapter).

      Assuming SEID is adopted at some point in the future by U.S. agencies, it is not yet known which chapter of ICD-10-CM SEID would be located under, if a submission to add SEID to ICD-10-CM is requested by whichever federal agency would be taking responsibility for submitting a request to NCHS.

    • Suzy Chapman says:

      Carollynn, a further point about DSM-5’s SSD.

      For ICD-11, it has also been proposed to replace the existing ICD-10 Somatoform disorders categories and Neurasthenia with a single diagnostic category, which is currently proposed to be called, “Bodily distress disorder”.

      “Bodily distress disorder” is not defined as the same disorder construct as Fink et al’s 2010 “Bodily Distress Syndrome.”

      BDD, as defined by the ICD-11 Beta draft, has greater conceptual alignment with DSM-5’s SSD.

      Its definition, and the characterization of its three severity specifiers (Mild, Moderate and Severe) are based on SSD-like psychobehavioural responses to distressing bodily symptoms – not based on symptom counts, or symptom clusters from body or organ systems.

      Whereas Fink et al’s BDS is based on symptom clusters or patterns from various bodily systems and no psychobehavioural features are required to meet the BDS criteria.

      The co-chair of the ICD Revision Mental and behavioural disorders Advisory Group agrees with me that BDD and BDS are conceptually different but that there is potential for confusion between the BDD and BDS terminology, and that he will be discussing this issue further with the working group.

      He has also said, “…there are reasons that the Working Group in this area was not happy with the term ‘Somatic symptom disorder’ and did not adopt it from DSM-5 proposals. Problems with this term include the fact that in the context of ICD it could describe a large majority of health conditions whose symptoms are, by definition, somatic.”

      Although ICD-11’s proposed “BDD” construct will not be conceptualized exactly the same as the DSM-5 SSD construct, the term “Somatic symptom disorder” has recently been added under Synonyms to BDD, in the ICD-11 Beta draft.

      The co-chair has told me (via personal correspondence) that there has been no proposal and no intention to include ME or other conditions such as fibromyalgia or chronic fatigue syndrome in the classification of mental disorders.

      That the easiest way to make this absolutely clear will be through the use of exclusion terms. However, he would be unable to ask that exclusion terms are added to relevant Mental and behavioural disorders categories (e.g. Bodily Distress Disorder) until the conditions that are being excluded exist in the classification. That at such time, he would be happy to do that.

      I have already requested the insertion of exclusions under BDD for the three ICD-10 legacy terms, PVFS, BME and CFS, in anticipation of their eventual restoration to the Beta draft. If SEID is at some point proposed to be added to ICD-11, either as a new code, or as an inclusion term to an existing code, or under Synonyms to an existing code, I shall also request an Excludes for SEID under BDD.

  9. Charmian says:

    I agree with Billie and Cheryl. Trashing the IOM report is asking for the status quo to continue. The IOM has handed us a lot of what we were asking for – and a lot of our “experts” agreed – the ones on the IOM committee and the many expert reviewers. Sure, let’s ask the others who signed the CCC letter. And yes, there are some concerns and the Committee didn’t expect us to like the name, but they had good justification for it. HHS has no reason to accept the recommendations in the report if the patient community isn’t behind it – that’s more of the same “us against them” and just sets them up for more attacks by us. WE have to decide on our big goals and figure out how to use this report to work toward them. I would suggest we could aggressively pursue at least 3 goals: 1) get rid of the name Chronic Fatigue Syndrome; 2) educate way more health care providers so they recognize this as a real, physical disease that should be treated (at least try to make the symptoms better), and not by GET and CBT; 3) more money, a lot more, for research to move the science forward. If the newer simpler diagnostic criteria help the other 90% of patients get diagnosed, their suffering taken seriously by their doctors, and their symptoms improved (along with good suggestions for helping them manage their lives within their personal energy envelope, that’s wonderful. Those of us in the online community who are having these discussions and disagreements are a tiny fraction of the number of patients who need help. I’m wondering how we can best help them. I don’t think it can be done with the status quo – that hasn’t worked for the last 30 years.
    I think we have to try something different. The IOM has status and credibility – let’s see how we can take advantage of that.

  10. Kathy D. says:

    I agree with your points and also think that the most important action that the HHS
    can take — and NIH — is to fund the needed research, to expand the tests which have found evidence of our disease (brain imaging, genetic expression testing, spinal fluid), and to fund researchers who are working on this aggressively and then to fund new testing.

    I am wary because HHS hasn’t said anything yet nor has NIH. I wonder if
    HHS executives think they can wait for the excitement to quiet down and
    then just move on and push the IOM report under the rug. Who knows?

    A lot of this is about money — for research, for disability benefits, for
    medical care, and the powers that be are not inclined to expand any
    funding now.

    But I think what matters is our voices keeping up the pressure on
    the governmental agencies however we can do it.

    I will send your letter when I am able to do it. Thanks for
    providing that.

  11. Anonymous says:

    In this note, Danny Ze-dog criticizes the new definition’s lack of exclusion criteria:

  12. billie moore says:

    Just one more point regarding expecting any action, un-pushed, from any HHS dept. Can we really expect that the HHS management, which for 10 years has ignored the CFSAC recommendations, the requests to not do an IOM study, not do a P2P study; which has not put the slightest bit of effort into approving any drug for this disease; etc. etc. would actually VOLUNTARILY change the CDC Toolkit? VOLUNTARILY increase funding for the disease? Ha. Will not happen. Charmian’s comment rings alarm bells for me – if we continue to fight amongst ourselves, the HHS will use that as an excuse not to do anything recommended in the IOM report. They will say, “There is no consensus among the patient/advocate community, so we will not change anything.”

    Michelle’s comment is so on target that I restate it here:
    “YES! Instead of arguing about whether the name is a good (enough) one or whether the streamlined CCC criteria don’t convey our specific symptom set, we should be taking what is a pretty good report and forcing HHS to make good on it.

    I would go one step further and say that the patient community needs to develop a comprehensive advocacy plan so that letters and petitions have strategic, cumulative value that meet clearly defined, specific goals. We have been very reactive as a community (understandable given how debilitated we all are) but we could be more effective if we initiated the agenda ourselves.”

    As to doing all this in private, I don’t know how that could be done and be considered inclusive of the community.

  13. jim says:

    I don’t care if they want to name it MUD.

    The only question I have for my useless Congresscritter is, Why won’t NIH help us?


    Everything else is just a giant distraction.

  14. NA Wright says:

    Jenny thanks for answering the HHS question , it’s certainly concerning that a public body would spend $1m and not have in place the facility to make full use of the purchase. It’s bit like buying a major chunk of tech gear and only when it’s delivered looking around for a corner to stash it in, and only then thinking about how it is to be used. As a distant observer I find it frustrating that there’s little that I can contribute, however UK patient orgs are looking at what IOM and P2P could mean for the NHS and of course the WHO ICD is something we can input into so we yet have a role. Can I encourage people to make use of Suzi’s info which is absolutely key to the big issues of classification. I would just add to that the importance of SNOMED – if patients are serious about alternatives to the SEID name, then it’s essential that the basics of modern nosology are understood otherwise efforts will be wasted and communications with the medical profession will be fractious and pointless.

    Your caution about the CDC accepting the SEID name but retaining the Fukada definition is certainly a horrible prospect. Something I think that hasn’t been widely acknowledged in the online discussions is the scale of the paradigm change in diagnosis that the IOM is proposing, this is far more significant than the name or even the criteria (though the later is intrinsic). SEID is proposed to be unequivocally arrived at, as with the vast bulk of modern medical practice, by differential diagnosis. It’s somewhat unfortunate that some advocates see this as a failure of reasoning, yet it is precisely the use of the diagnosis of exclusion that is the failure, imagine if influenza were defined by not being ‘a cold’ or cholera by ‘not being’ typhoid. The only area of medicine to have continued routinely using per exclusionem reasoning in diagnosis while the rest of clinical practice has embraced differential diagnosis, is psychiatry; it would be pretty weird if ME advacacy were to reject the IOM on the basis that SEID wasn’t enough like psychiatric definitions. Exlusionary diagnosis is at heart a diagnosis of failure, it says we don’t know what this is and we can’t tell the difference between one thing and the other – this is surely the opposite of what most of us have been arguing for. There are things about SEID that are demonstrable, whether we call it SEID or something else what must be battled for is the principle that what affects us as patients, in part at least is demonstrable and can, in some signifcant measure, be arrived at through differential diagnosis.

    • Anonymous says:

      Bravo, NA Wright! I once attended an educational session at a university about this disease. The first question after the presentation from the audience was about how could physicians diagnose an illness solely by exclusion? The person asking the question was a very good doc and head of one of the departments. He stated he and others were reluctant to diagnose because they did not feel they could ever exclude all illnesses that had “chronic fatigue” as a main symptom. In contrast, SEID criteria have PEM, a hallmark symptom, as a required symptom.

  15. Diane Lewis says:

    These are all clear & logical opinions. Thank you Jennifer for initiating the real questions that make sense and keep them invested in our well-being!

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  17. Gabby says:

    It is interesting to me that those who call for agreement in the patient and advocate community, are calling for the other side to agree with their own point of view.

    It is commendable to call for unity and of course, it would give us greater impact. The question is, who will be willing to give in, or even compromise?

    You cannot call for unity if you are insisting solely on the adoption of your own views and the elimination of the opposition’s.

    • Jennie Spotila says:

      People can disagree and still work effectively towards a common cause, if they want to. It seems obvious to me that every single advocate wants a substantial increase in research funding. I don’t see why we can’t all unite behind that.

      • Gabby says:

        We can all unite behind increasing funding, keeping in mind that appropriate research criteria are being used.

        Do we know what research criteria NIH is proposing for the future?

        • Jennie Spotila says:

          We do not know, Gabby. That’s one of the many many questions about what HHS plans to do with the IOM recommendations.

  18. Sue Jackson says:

    Right on target, as always, Jennie! This is just what I have been wondering myself and was confused that no one was talking about it…what comes next?? What is the approval process, what needs to happen, will it happen…? So many questions.

    Thanks for the excellent summary, as always – I included your post in my own summary:



  19. NA Wright says:

    It seems obvious to me that every single advocate wants a substantial increase in research funding.
    One would be hard put to find any patient that says they don’t want more research funding, however I don’t think that translates into a unifying principle. It seems pretty clear that there are patients whose wish for more funding is profoundly moderated by their wish to be able to determine how funding is used which then translates into dogmatism about who can be co-operated with or supported. That in turn leads to an unbridgeable divide between dogmatists and pragmatists, two groups who in effect inhabit entirely separate patient cultures.

    I’ve long argued against the notion of a single patient community, on the grounds that there are far too many cultural and philosophical differences to support a single community entity. Once one accepts a multi social/cultural/political patient population, then the focus can move from a notion that there should be no conflict to one where conflicts are openly acknowledged and patients can decide how to respond, who to co-operate with and how. IOM and P2P provides a case in point, there are two implacably opposed views – one that seeks to engage with the bureaucratic process, the other to resist all engagement. My own view of this case is there isn’t problem to be concerned about because frankly there’s no solution; where I do see an issue that needs to be addressed is in how ‘grown up’ advocates are willing to be in dealing with conflicts of view. Entertaining as it has been to watch the spat on Phoenix Rising between those who want to send a Thank You card to the IOM committee and those who want to send a ****off card to the same recipients, it was hardly a demonstration of intellectual strength. The whole thing was conducted at the level of pre schoolers and if there is concern that HHS will not play fair over the IOM, then public demonstrations of ME/CFS advocacy as vehement, infantile and stupid is hardly likely to strengthen any advocate’s hand.

    Those who feel they can co-operate should do so because that will almost certainly produce a more effective outcome. Where co-operation isn’t acceptable then quiet acknowledgement of that and simply getting on with following one’s own course is the mature position. However there’s an unfortunate tendency of some advocates to identify those who disagree with them as an ‘ enemy’ which by dint of its apostasy, has to be attacked. It’s difficult to know how to deal with that phenomenon, every attempt at offering a different perspective, and every attempt at correcting factual errors is then taken as an attack on the one true ME community. There certainly doesn’t seem any prospect of being able to co-operate in that circumstance and the pragmatists amongst ME/CFS advocates might wonder to what end game the dogmatists’ approach is leading.

  20. kathy d. says:

    I think we can unite around the IOM finding that ME/CFS has a physiological basis, is a real disease, and that it needs research and funds to do that.

    We can find a slogan that says it in a nutshell.

    The folks organizing for research funding and treatment for HIV and AIDS came up with a simple slogan in addition to the basic: “Fund AIDS research and treatment,’
    which was “Silence = Death.” It got attention and it had national support.

    Can we come up with a few slogans upon which we can agree and unite

  21. Suzy Chapman says:

    There is a thread on Phoenix Rising for collating questions for an IOM panel member who has agreed to do an interview that will be posted on the Phoenix Rising blog.

    I have added the following questions in relation to ICD-10-CM coding:

  22. Chris says:

    NA Wright makes an excellent point in stressing the importance of the IOM’s shifting from a diagnosis by exclusion to a differential diagnosis, which they hope their new name and diagnostic criteria will facilitate. It should be one significant step to our being accepted into the community of recognized diseases.

    I am not enamoured of SEIDS, but neither was the committee. It included many very smart and experienced minds, and I for one accept their basic reasoning–though there is some research support for brain inflammation, there is not enough to give firmness to “encephalomyelitis,” and the last thing we need is to have another name yanked from under us by new research–the demolition of XMRV should have taught us that–“look at those deluded people who thought they had a virus–give them CBT to get that idea out of their silly heads.” Of course it still remains a possibility that we really do have a virus, or one of many, or even a yet undiscovered retrovirus. But that is for the future to decide.

    The new name does do certain things in pointing to our actual condition–it is “systemic,” it is a “disease,” and “exertion intolerance” is a fact of our lives, even if inelegantly worded. It is not a high definition 3d colour photo, but it does point towards us with reasonable specificity. Since the committee made it clear that they too regard it as a kind of place holder to be revisited in not too long a time, together with the diagnostic criteria, I think it might be wise to go along with their hard made choice, and hope that time and new research will support a better, more accurate name in the not too distant future. The IOM document is already doing us good, and I would hate to see that spoiled by a big fussy protest over the name, unless someone has a stroke of genius.

    I am not at all sure that HHS knew what to expect from either P2P or IOM; the former was much more under their control, but even that depended on just how independent those panel members proved to be. And they may have been almost as surprised as we were by the IOM report.

    Jennie is right–we have to wait for the responses to start coming in before we can get far with any kind of strategy, and I think we have to give these giant bureaucracies some time–it may require some adjustments between them–as Jennie muses, is it possible that the P2P thing will just be dropped? Will CDC bow to “exertion intolerance”? Will NIH declare a bonanza of research money? Some of us were wrong in our fearful expectations of the IOM report, though I think still right in our suspicions of a few members of the committee–but the result was a generally excellent and potentially useful report, which we can use in future communications with DHHS. I am not sure it is the “Big Stick” Billie Moore calls it–and we do not have a strong arm with which to wield it–but a stick it is, and we can discuss how and where to use it when HHS tells us something of where they intend to go.

  23. Kathy D. says:

    Well, it’s not over until it’s over. We don’t know what HHS and NIH will
    say or do.
    Allocating a lot more research funding, both for ongoing projects and new
    ones is crucial. Also, they should look at all of the already discovered data,
    and extend funding to those who are doing research now, like Dr. Montoya,
    et al.

    I am surprised that the muscle pain symptom was not found by IOM
    to be a common symptom among ME/CFS sufferers. I overdid it on
    Saturday and woke up on Sunday with such bad muscle pain in my
    legs that I could barely walk through my apartment and did it as
    few times as possible. It goes with my superexhaustion. Both only
    ease up with aggressive resting for days.

    • Jennie Spotila says:

      Actually, they did find pain to be nearly universal in ME/CFS patients. They elected not to require it for diagnosis, however, because “there is no conclusive evidence that the pain experienced by ME/CFS patients can be distinguished from that experienced by healthy people or those with other illnesses.” (p. 147)

      In other words, research has not shown how ME/CFS pain is different such that it should be used for diagnosis. Patients experience so many different kinds of pain (muscle, joint, headache, sore throat, lymph nodes) but there is no way to say this headache is from ME/CFS and this headache is from something else. Pain is so commonly experienced, the IOM panel thought it could support diagnosis but should not be required. Chapter 5 of the report goes into detail on this.

  24. kathy d. says:

    Op-ed by Julie Rehmeyer in today’s NY Times about CFS needing objective
    tests and federal funding for research for diagnostic tests and treatments.
    Mentions the IOM study and that many doctors are not taking it seriously
    that this is a real disease. Apparently, discussion at Medscape shows this.

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