1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS and Beating the Clock
For Jody Smith, the ticking of a clock was enough at one time to chase her back to her bed. But with the passage of time, she has been able to reclaim her living room ...
Discuss the article on the Forums.

CFS Patients War Against Controversial U.S. Health Research Plan

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Ember, Feb 8, 2014.

  1. leela

    leela Slow But Hopeful

    Messages:
    2,367
    Likes:
    2,689
    Couchland, USA
  2. beaker

    beaker CFS/ME 1986

    Messages:
    386
    Likes:
    565
    USA
    I know Penny made a few errors -- ok more than a few- but she is trying. Heck, I know a lot of patients that know less than she does. Sadly, way too many. She seems to want to be helpful. That's a good thing to me. Why not guide her along, with relevant links, a copy of Osler's web and so forth ? We can use all the help we can get.
    Ren, Iquitos, rosie26 and 2 others like this.
  3. Firestormm

    Firestormm Senior Member

    Messages:
    5,781
    Likes:
    5,868
    Cornwall England
    Personally, I quite like the NICE definition as it happens - not all of NICE - but the definition was a reasonable compromise at the time I felt, a time when we had nothing, and no doctor had any guidance at a national level.

    You sure it is 'Oxford'? I didn't know that. I know they reviewed existing definitions at the time including CCC, and favoured if anything the Australian definition. But I've talked about this quite a lot on several threads. See full NICE Guideline Chapter 5.

    NICE was never empirically tested either of course, which it should have been in my view. Of course the haggling begins really - when you get to the exclusionary tests. Something again that we haven't really considered in any presentation or engagement.

    It's hard for me to determine what the extent of the IOM review will be. Clearly they are not seeking to replicate NICE to its' full extent, as their remit is not to cover so-called 'treatments', but will they be seeking to explain other things as NICE tries to do?

    I can't help but wonder at the number of people who will meet a so-called 'ME' pure definition. And whether there will be anyone left with 'CFS'. I rather myself like the 'spectrum' idea that has been advanced.

    Breaking apart the 'two diseases' may also be tricky when relating them to severities and the fluctuating nature of the illness. Will I be 'CFS' today, and 'ME' tomorrow - based only on symptom definitions and tick-boxes?

    What would that mean for any 'treatment' or management plan?

    I find it all rather silly at the end of the day. It will be the same people involved in clinical care. And until such time as a biomarker or markers can be determined - what difference does all of this 'talk' make?

    People hope that if they are determined by some symptom based definition to have 'ME' it will mean they have an 'organic' disease and those unfortunates 'left' with CFS will be at the mercy of the 'shrinks'.

    It will not work like that. Not a chance. Not now. The opposition from 'experts' - the clinicians - has a lot to do with wanting to retain control and be able to apply their clinical judgement and expertise I think.

    Because I do wonder at how rigidly those who signed the letter in support of CCC actually follow it verbatim when diagnosing patients. I do not believe it to be as rigidly applied in practice as some patients might like to think.

    I also think patients should be grateful to HHS because until this process began - the experts had not united around anything in such a way before.

    If they had gotten together round a table to thrash out a definition - do you think it would be the CCC that emerged at the end of the process? Because I don't think it would. I think it would have been adapted.

    Reading some of the comments left against articles or blogs surround IOM controversy, it is also clear to me that not everyone understands that they are looking at a clinical and not research definition or that IOM is not tasked with looking at or recommending 'treatments'.

    I do wonder as well at the extent to which people are also aware of what the CCC comprises - and how much the opposition to IOM is based purely on the feeling that 'our experts know best'.

    Of course as I said, some of those experts are on the IOM panel and thank the gods for that. That is unless they resign as was asked of them by several making the presentations. I have to then wonder where we would be.

    It's not to me as black and white as some are trying to portray it. As was said in the article, the earth is not flat, either; but perhaps not in the way that they meant.

    I picked up on this from the article above, also:

    Fascinating then, that Lily Chu is a Board Member of IACFS/ME is on the IOM panel isn't it? And, again, I would like to think the 'community' would be grateful to her for stepping up to the 'hot' plate on our behalf:
    The words of IACFS/ME President Dr Fred Friedburg recently:

    So, while it may be true that IACFS/ME endorsed the CCC, that comment doesn't really tell the full story does it?
    Last edited: Feb 9, 2014
  4. Ember

    Ember Senior Member

    Messages:
    1,728
    Likes:
    1,776
    Wally has done just that, posting these references on mecfs forums:
    Chris, Ren, Iquitos and 2 others like this.
  5. leela

    leela Slow But Hopeful

    Messages:
    2,367
    Likes:
    2,689
    Couchland, USA
    I'm so grateful to Wally. This is so great for all of us to have on hand.
    Ren and beaker like this.
  6. Firestormm

    Firestormm Senior Member

    Messages:
    5,781
    Likes:
    5,868
    Cornwall England
    @biophile There is another interesting point, talking about the NICE Guideline, and that is, is it really a definition at all? There has been some recent discussion about this elsewhere, and I think it centres around the simple fact that it was never published as a paper. So, does it constitute a definition in the true sense? If not, and if the IOM are seeking to issue their own recommendations, and let's say that HHS endorse them: will they also actually be a definition in the true sense - or clinical guidelines? Not that I suppose it makes much difference really. It's never been mentioned though on here before.
  7. beaker

    beaker CFS/ME 1986

    Messages:
    386
    Likes:
    565
    USA
    @Wally Thank you !!! Fantastic.
    Ren and Ember like this.
  8. biophile

    biophile Places I'd rather be.

    Messages:
    1,348
    Likes:
    3,977
    @Firestormm. When I said "what if they just adopted something poor like Oxford for NICE" I meant Oxford or NICE. I did not mean to imply that NICE was based on Oxford. The NICE criteria is chronic fatigue with PEM/PEF and at least one additional symptom. I do not think brief or vague descriptions of PEM/PEF are good enough. The Canadian criteria, although technically only requires some vague PEM/PEF, has a rich description of post-exertional symptomatology that resonates with patients and is far superior to any CFS definition before/since. The ICC-ME attempted to build on that.

    There might be lack of empirical testing of the definitions, but there has been some work on defining symptoms of CFS.

    For example, the work of Jason et al (repeatedly?) suggests that multidimensional fatigue, post-exertional symptomatology and neurocognitive impairments are key symptom categories. Furthermore, patients experience "several different types of fatigue including postexertional fatigue, wired fatigue, brain fog, energy fatigue and flu-like fatigue compared to the healthy group which only experienced just an overall, general type of fatigue".

    They found that post-exertional symptomatology is accurately exampled as: "Dead, heavy feeling that occurs quickly after starting to exercise; Next day soreness or fatigue after non-strenuous, everyday activities; Mentally tired after the slightest effort; Physically drained or sick after mild activity; and, Minimum exercise makes you physically tired." (etc)

    "Our research group feels that post-exertional malaise is a cardinal feature of ME; the definition recognizes post-exertional malaise as prolonged restoration of muscle power following either mental or physical exertion."

    They also discovered that when patients report symptoms of post-exertional malaise, those symptoms are independent of emotional distress, but when the general population report what they think are post-exertional malaise symptoms, their symptoms of post-exertional malaise are significantly related to emotional distress.

    The Jason et al revision of the CCC even allowed patients to be diagnosed without chronic fatigue.

    I have not conducted a systematic review of all the literature and am unlikely to ever do so, but surely any attempt at creating a new definition should take into serious consideration research such as that I described above? If the IOM contract come up with another vague poorly worded criteria, then I will suspect they were sleeping at the wheel. If a definition is going to be symptom based, then those symptoms better be richly and accurately described.

    As a personal anecdote, when I first read the CCC, I was impressed with the rich descriptions of symptoms. It resonated with me in a way that no vaguely worded CDC/Oxford definition ever did. It was the first time I felt that the authors of a definition actually knew what they were talking about when describing my symptoms. It made me reconsider that "CFS" (I did not know much or anything about ME at the time) may not be some bullshit wastebasket diagnosis afterall but an actual entity. I know the CCC criteria itself is far from perfect and needs to be refined, but still.

    Many patients felt the way I did about the CCC or ICC or Ramsay descriptions etc. Who ever felt the same way when they first read the CDC/Oxford/NICE definitions and were not instead left with a sense of ambiguity and vaguenesses? So yeah, I think immediately adopting CCC or similar would be an improvement over the current situation.

    Back to the experts, good point about the "ME/CFS" experts may not be so black and white on their opinions and actions. They are still outnumbered by non-experts, right? Would be amusing if they walked out and refused to sign it just as White et al did when they walked out of the CMO report for disagreeing with the endorsement of pacing or whatever?
    Last edited: Feb 14, 2014
    WillowJ, beaker, Wildcat and 2 others like this.
  9. Firestormm

    Firestormm Senior Member

    Messages:
    5,781
    Likes:
    5,868
    Cornwall England
  10. biophile

    biophile Places I'd rather be.

    Messages:
    1,348
    Likes:
    3,977
    Doesn't seem that sensationalist if BDS is replacing ME/CFS, and BDS is listed under "Mental and behavioral disorders".

    BDS i.e. bodily distress disorder, taking over a bunch of diagnoses = "one ring to rule them all".
    Last edited: Feb 12, 2014
  11. leela

    leela Slow But Hopeful

    Messages:
    2,367
    Likes:
    2,689
    Couchland, USA
    Well, let's say it's inaccurate, rather than sensationalist, because
    1) it has not as yet been relabeled
    2) either way it should read "mislabeled" to clarify the erroneousness of the proposed classification
    Last edited: Feb 11, 2014
    Iquitos and WillowJ like this.
  12. Firestormm

    Firestormm Senior Member

    Messages:
    5,781
    Likes:
    5,868
    Cornwall England
    My comment from the other thread about the latest article: http://forums.phoenixrising.me/inde...e-under-nervous-system-dis.28171/#post-429334

    Iquitos likes this.
  13. alex3619

    alex3619 Senior Member

    Messages:
    6,639
    Likes:
    9,715
    Logan, Queensland, Australia
    But is this the ring around Ur-anus? :p

    BDO is claimed to be superior because it covers just about every disease that is not nailed down. Its the quintessential wastebasket diagnosis.
  14. leela

    leela Slow But Hopeful

    Messages:
    2,367
    Likes:
    2,689
    Couchland, USA
    Why don't they just go ahead and make one ICD Dx for all diseases everywhere:
    BOSP Bugger Off, Sick Person
    Iquitos, alex3619 and Wally like this.
  15. Firestormm

    Firestormm Senior Member

    Messages:
    5,781
    Likes:
    5,868
    Cornwall England
    Can anyone tell me, in summary, what actual difference it makes if the WHO change its' classification index? In terms of research, diagnosis and treatment. I mean it has made bugger-all difference having benign Myalgic Encephalomyelitis under diseases of the nervous system and hence neurological - has it? Absolutely none whatsoever. Thanks.
  16. Bob

    Bob

    Messages:
    7,428
    Likes:
    8,566
    England, UK
    I think the major difference may be for private medical insurance claims, esp in the USA. If CFS is categorised as somatoform/psychological, then the insurance industry may save billions. (My undesrtandign is that private medical insurance tends to have substantially lower limits for claims for psychological/psychiatric illnesses than for 'medical' issues.) (But I don't know a great deal about the legal technicalities of medical insurance, and someone else may know more about it.)

    Also, of course, it's one extra weapon that the cognitive-behavioural lobbyists will have to beat us with.
    aimossy, Iquitos, leela and 1 other person like this.
  17. biophile

    biophile Places I'd rather be.

    Messages:
    1,348
    Likes:
    3,977
    @alex3619 . The BDS "ring" may not be around Ur-anus or My-anus, but it is certainly around Sum-anus!

    @Firestormm . Good question. Having ME listed under diseases of the nervous system in the ICD appears to have done little. However I imagine things would get worse if ME was dropped entirely and replaced with BDS. The ME listing has important historical value, and perhaps its true value will be reinstated when more recent science justifies its ongoing inclusion there?

    @Bob . Good point. The listing may have widespread consequences for the (denial or limiting of) insurance payouts. And yes, all historical and scientific issues aside, a (mis)classification would be a moral defeat of sorts.

    @leela . "BOSP Bugger Off, Sick Person" ... also known as GTFO therapy!
    Last edited: Feb 12, 2014
    aimossy, leela and Firestormm like this.
  18. WillowJ

    WillowJ Senior Member

    Messages:
    2,852
    Likes:
    2,196
    WA, USA
    Specifically: The treatment for bodily distress disorder is CBT to persuade the patient they are not sick (not coping help, but rather the LP/"you should think of yourself as well [and not bother your doctor or spend any money on wellness]" variety), and basically putting an "IGNORE" stamp on the patient's chart: limit doctor visits, no urgent visits, and no more tests (it says limit, but as tests are difficult in some areas anyway, and the ones recommended for ME/CFS are few in any case, it seems like if you reduce limited, you get none).

    So if you're one of the many people misdiagnosed with CFS who really has multiple sclerosis or a rare disease or cancer or something like that, you're out of luck. If you have ME and concurrent asthma, you're out of luck. Etc.



    Generally speaking, placement in the classification index sends a message to doctors about what kind of disease it is though to be.

    For instance, if it's thought to be a psychological disease, debility will be expected but not much physical debility. Thus a patient with physical debility will be confusing to the doctor: generally they will either think the patient doesn't have ME (leaving the patient without any diagnosis, which is unhelpful), or they will think the patient is exaggerating or making up the physical debility, which degrades the working relationship between doctor and patient.

    If it's thought to be a somatoform disease, the patient will be thought to be experiencing symptoms without any basis in biology (as these are here thought to stem from emotion and/or lack of social support, etc., though this cannot be demonstrated). So anything treatable like asthma, UTI, orthostatic intolerance, etc., can be totally missed/ignored.

    If it's thought to be a vague disease or unclassifed symptom (as US has CFS classified currently), the doctor may think anything they like, including either of the above, some combination thereof, or that there is a yet-to-be-diagnosed cause. Or rarely, that it's a neglected disease still left in this limbo code, or that not much is known about it.

    If it's classified in a major medical code like neurology, it's thought that doctors would expect more physical debility and pay more attention to the specifics of diagnosis rather than some of them using it as a wastebasket code or a "secret" code for disliked patients (they use fibro for this, too).

    ETA: But as @biophile said, maybe not. That idea comes from US, where we don't have a neurological classification. /edit



    That was diagnosis and treatment, but research would be similar, as interest in research, funding, and approval of grants by reviewers relates to what researchers think the disease is and so what would be valuable to do (e.g. if it is somatoform or can be cured with GET, there is no use studying B cells, so that funding application would be denied, and no one with a strong science background would want to work in the field).

    ETA: at any rate, BDD would be worse than the current situation! /edit
    Iquitos likes this.
  19. In Vitro Infidelium

    In Vitro Infidelium Guest

    Messages:
    646
    Likes:
    280
    Firstly - echo praise for Susie Chapman whose work on maintaining a watching brief on the ICD and DSM processes has been immensely valuable and her decision (which no one could begrudge her) to withdraw from activism in that area, is undoubtedly a loss.

    Secondly - ICD is: a CLASSIFICATION SYSTEM ! it is not a diagnostic manual, it is not a list of case definitions, it is not ICD-10CM or any other national ‘Clinical Modification’. The purpose of the ICD is to allow common reporting of ill health by all the WHO member organisations, it is primarily an epidemiological tool and because so little epidemiological work has been carried out on M.E/CFS/PVMS etc, the WHO coding has to date had very little impact on M.E research. What seems to have happened with citizen journalist Penny Swift’s article is that it regurgitates as definitive, a position adopted by some M.E advocates that the ICD classification of M.E as ‘neurological’ was a unchallengable rebuttal of the psychosocial model of the illness. The axiom ‘never believe your own propaganda’ seems pertinent.

    Having M.E/CFS/PVMS etc lumped into an ICD class along with or headed by, BDS would certainly not be a happy position, but it would not impact the clinical situation directly. For nations that use a ‘Clinical Modification’ as part of their health care delivery system, the impact of any change to the ICD would be filtered through each national Clinical Modification process.

    The concern that Susie Chapman has most recently raised is that there is no one in the ICD process who is willing to publicly engage over the issues affecting M.E/CFS. Certainly this needs action*, however as publication has been put back until 2017 there remains the opportunity to influence the consultation process. It would seem that given the timing, to be highly likely that the IOM process will influence the ICD outcome and would certainly affect any US ICD-CM rewrite. The IOM offers a point of influence for patients, that the ICD lacks, and for the US specifically the IOM offers a stronger position of influence than will an eventual ICD-CM rewrite where health providers (HMOs etc) will have a large say.

    Realistically, holding onto neurology as the sole ICD class for M.E/CFS, in the face of expanding research which implicates a range pathologies, is probably not feasible. However ICD 11 is going to be structured differently to ICD-10 with the potential for a named disease to appear under more than one subheading, how this will work I’m not clear but a more expansive listing of M.E/CFS/PVMS etc could well be of benefit to the cause of M.E/CFS patients and to researching the disease(s).

    * http://forums.phoenixrising.me/inde...writing-about-me-cfs.28165/page-2#post-429506

    IVI
    Last edited: Feb 12, 2014
    Firestormm likes this.
  20. alex3619

    alex3619 Senior Member

    Messages:
    6,639
    Likes:
    9,715
    Logan, Queensland, Australia
    @In Vitro Infidelium is right, ICD is only a classification system. It does not prove anything. However its not just doctors who use it. Its government too, and insurance, and possibly others.

    The issue with just being a classification system is one big reason why I have been warning about using the claim that ME has a neuro classification in the ICD. It means very little as proof.

    It means more in a political framework though. Doctors code disease, as do bureaucrats. Suddenly all the codes will be psych codes. This isn't a whole lot different from now, what has changed though is doctors who want to code ME as neuro will no longer have that option.

    The ICD recoding can still be fought though.

    In the final analysis it still comes down to the science. Continue expanding our knowledge of ME as physical, the details of the pathophysiology and (hopefully) the cause, and the ICD label will mean little. Validated, robust diagnostic biomarkers will change everything. Currently the most robust is the 2 day CPET. I really suspect every patient might have to consider doing this if they can get the funding together (it will not be free) and think they can handle it. Its indisputable proof of real physical disability, even if it turns out to not be diagnostic. Lipkin or others might come up with a less risky and less expensive test. I hope so.

    In the meantime, let me emphasize that fighting psychogenic medicine is not just about ME. Its about all psychogenic diagnoses. The track record in the scientific history timeline is abysmal. Zero times fully validated, oodles of times proven wrong. Hysteria was always the ultimate too hard / wastebasket diagnosis. Now we have BDD. The (Infernal) King is dead, long live the (Infernal) King!
    WillowJ likes this.

See more popular forum discussions.

Share This Page