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Straus/Fukuda Letter: Goal of 1994 Definition Discussed

Discussion in 'Latest ME/CFS Research' started by C_Maupin, Mar 16, 2014.

  1. C_Maupin

    C_Maupin

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    Following submission for publication of the integrative CFS case definition in 1994, some goals/hopes for the new definition were discussed in a candid letter between Stephen Straus and Keiji Fukuda.

    Ironically, Straus predicts the new definition may be abandoned and the concept of a distinct disease will "evaporate" into "idiopathic fatigue". The letter also covers Straus interest in pain perception, the mind/brain, two areas of emphasis within the NIH CFS program --"state of science" conferences, RFAs, and peer review policies -- for the last 15 years.

    http://cfidsreport.com/News/14_Chronic_Fatigue_Syndrome_Definition_IOM_Straus.html

    The letter is linked and is available to anyone.
     
  2. Esther12

    Esther12 Senior Member

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    Thanks for that. I didn't think that those letters seemed unreasonable.
     
  3. Simon

    Simon

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    I found that a bit depressing.

    However, I think he has a point about CFS vs Idiopathic fatigue, insofar as few people try to distinguish the two, instead looking at CFS vs healthy, which isn't necessarily that helpful. Personally, I think that when ME/CFS is nailed - probably as several different diseases - it will be possible to clearly separate the newly defined illnesses from Idiopathic fatigue, ie they will have a distinctive molecular signature. (cue a gratuitous plug for my blog: A Dozen Different Diseases? Stephen Holgate Calls for Radical Change in ME/CFS Research )
     
  4. Bob

    Bob

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    Really? From what perspective do you find it reasonable?

    I think it superficially seems reasonable, which is probably why they've had so much success promoting such a paradigm. I think it would especially seem reasonable to anyone ignorant of all the issues, including ignorance of science in general, the scientific process, and all the issues specifically relating to ME and CFS.

    But in terms of science and medicine, it's corrupt. They are ignoring, and dismissive of, the specific symptoms, and the nature of onset, associated with the incline village outbreak, and associated with ME; apart from the single symptom of fatigue, which they inappropriately place their entire emphasis on. And they are also dismissive (but without sufficient evidence to inform them) of the possibility that there maybe a discrete illness, or group of illnesses, that have the symptoms described by ME criteria.

    And they're not even discussing the difference between idiopathic fatigue and ME. They've already dismissed ME criteria by this stage and are now discussing the lack of difference between idiopathic fatigue and CFS. There isn't much difference between idiopathic fatigue and CFS because that's how they, themselves, designed the CFS criteria. So, again, the discussion seems superficially reasonable, as they are discussing 'CFS' and not 'ME'.

    They propose that chronic fatigue should be diagnosed as either idiopathic fatigue or secondary to an identifiable medical or psychiatric disorder, with no other possibilities, and predict that the notion of a discrete form of fatiguing illness will eventually evaporate. This seems obvious and reasonable, in itself: Fatigue is universal, and if you can't identify the source of pathological 'fatigue' and associate it with a discrete illness then it is, by definition, idiopathic fatigue. But they are ignoring the nature of ME for which fatigue is only a single symptom, and for which fatigue has a discrete nature.

    They also seem to be undermining the scientific process by curtailing any scientific curiosity that there may be in attempting to identify different types of fatigue and different sources of fatigue. Instead of dismissing possibilities they should be encouraging biomedical investigations into differences, however subtle.

    (Luckily, that sort of prehistoric approach to medicine is beginning to be relegated to history now: even psychiatric research in the USA is moving away from symptom based research and towards investigating biomedical pathways.)

    It seems that they were keen to push fatigue research into the field of psychiatry, with their discussion re fatigue being confined to a single locus of the brain. Perhaps that, in itself, was a reasonable hypothesis, but it was only a hypothesis and the hypothesis only related to fatigue, and not to other symptoms experienced in ME. As such, their partial hypothesis should not have been rolled out as a government department strategy for ME patients or incline village patients.

    I don't see how this correspondence can be considered reasonable when considering the full history of ME and CFS. But even taking it purely at face value I think it demonstrates a massive failure of the scientific process within a government department. Given what we know, it probably came about as a result of vested interests and corrupt practices.
     
    Last edited: Mar 16, 2014
  5. Bob

    Bob

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    In short, first they dismiss and dismantle the notion of ME; and inappropriately focus their attention purely on a single symptom (fatigue); then they create an inappropriate set of criteria (CFS) that only defines symptoms that are related to fatigue and vague feelings of unwellness (i.e. headaches and sore throat); and then they compare those fatigue-related symptoms with fatigue and assert that there is no difference; Then they assert that all the illness/es (which they have defined and mis-defined, and inappropriately lumped together under a single set of criteria) stem from a single locus in the brain (i.e. a psychiatric illness); Then they suppress discussion of ME and research into ME.

    Evidently, their hypothetical model of illness has failed us. It's a shame that they allowed corruption and vested interests to blind them to the fact that their model of illness was purely a weak and misguided hypothesis.
     
    Last edited: Mar 16, 2014
  6. Bob

    Bob

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    @Esther12, none of that rant was aimed at you... It was just a general rant. :)
     
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  7. Esther12

    Esther12 Senior Member

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    @Bob : Happy to be ranted at! Good to be pushed back against- it might help me clarify my thoughts.


    I didn't read it in that way, but I could be wrong.

    Medical researchers have lots of groups of patients that are pretty screwed, and that can lead to them talking about people's problems in a way which we may not like, but I just read the letters as saying: 'I don't think we've got a criteria which is going to identify any discrete illness here'. I have to admit, I did have to do some reading on the use of the word 'idiopathic', and I could have misinterpreted what they meant.

    I'm not well read on Straus, etc, but often find that I agree with (my impression of) that sort of person's criticisms of a lot of biomedical explanations for CFS, and it just pisses me off that they don't apply the same (or any) level of scepticism to psychosocial models and interventions. I think that sort of one sided-scepticism has been really harmful, but I don't really disagree with the scepticism that they do display.

    re focussing on fatigue over and above everything else: They didn't really talk about that in those letters, did they? I was just judging that Straus letter in isolation, and haven't read much directly from him before. Also, I have real difficulty knowing what 'fatigue' is supposed to be/mean - it seems that it could encapsulate a lot. To me, it seems ridiculous to lump together all patients suffering from unexplained fatigue, and then 'manage' them as if they have a meaningful diagnosis, but I'm not sure how much better a lot of the other proposed criteria for ME are.
     
  8. Esther12

    Esther12 Senior Member

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    Wouldn't 'idiopathic fatigue' also be people who had been diagnosed with CFS/ME, but then did not have explanations found as a dozen different causes of patient's illnesses were found? If/when ME/CFS does get picked apart, presumably there will also be patients who did not get an explanation/treatment for their symptoms (I'll be one of the lucky ones, but don't worry - I won't abandon the rest of you!)
     
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  9. Bob

    Bob

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    It can't be interpreted in isolation.

    I don't interpret it as a healthy degree of scientific scepticism. Instead, I see it as an unhealthy cognitive rigidity that led to an uninformed and flawed hypothesis being turned into a harmful government health policy.

    And do we know if there were invested interests involved (i.e. health insurance companies)? There may also have been a misguided strategy of wishing to avoid a public health panic.
     
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  10. Esther12

    Esther12 Senior Member

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    Are there any other documents from him you'd recommend reading?

    re the 'uninformed and flawed hypothesis being turned into a harmful government health policy': what did you think that was?

    There could well be problems with vested interests, etc, and I think that has been important for the way CFS has been treated, but I just don't know about that and Straus. I'm totally happy to admit that there's a lot I don't know about Straus, and that there will be further stuff I should read.
     
  11. Simon

    Simon

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    Idiopathic fatigue is fatigue of unknown cause so could be used to cover those in the current CFS definition who don't meet 'new' explanations. The main point is that new explanations should be able to separate those with specific illness from those with as-yet-undefined causes.

    But finding explanations for some is not abandoning the rest, it's just science. Were this to happen ie ME/CFS does get unpicked to a large extent, it would be further evidence that 'unexplained' is not 'unexplainable', which I'd have thought was good for those who still have an idiopathic diagnosis, as it points the way forward.

    I mean, if some people with ME/CFS are proven to have a newly discovered disorder - but I don't - I still think that's progress.
     
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  12. Esther12

    Esther12 Senior Member

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    Yeah - it's just that some people speak as if 'idiopathic fatigue' is almost an insult. I would not naturally use the word 'idiopathic' so worry that I've missed some meaning or connotation!
     
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  13. Firestormm

    Firestormm Guest

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    Da other ting is, that ME or CFS could be an explanation for the 'idiopathic' fatigue, no? :)

    Note: I haven't read the letter - can't be arsed at the moment :)
     
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  14. alex3619

    alex3619 Senior Member

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    In ancient magical thinking, to label something is to have power over it. If its got a name, we understand it. We can control it. It seems ancient superstitions still pervade the debate.

    I am largely with @Bob on all this. However, I do not see anything sinister in what Strauss wrote. What I do see is poor thinking. What I see is undue influence from bureaucracy and government in the advancement of science. This was at a time when Zombie Science was just getting started, when the bureaucrats finally realized they could control medicine and medical science.

    This is largely about labels, and how they restrict thinking in our view. First in the above quote I think Strauss is technically right. However the implications were not thought through. I think all chronic fatigue is secondary to some other disorder. All unidentified causes are idiopathic. This is about technical definitions, but it lacks real understanding.

    Arguing that fatigue is on a spectrum is a failed analogy. Is pain on a spectrum? If you have advanced cancer, is that just on a different spectrum of pain to being run over by a bus? Or post-operative pain? Or severe burns? Its an unhelpful analogy. Most diseases/disorders cause fatigue to some degree. They are not all the same. Severity of fatigue is probably on a spectrum, but it cannot be the case that the fatigue itself is.

    This kind of thinking is bureaucratic, not scientific. Its about definition and control, not inquiry and understanding. Its about labels, not understanding the complex web of factors involved.

    CFS as a label is a construct. Even ME is just a construct. Discovering the real nature is about the science, it takes time, it takes funding, and above all it takes people to do the research, who show an interest, and even better have some imagination to go with that interest.

    The label CFS is what happens when bureaucrats take over science and medicine. It leads to NICE and the IOM. Its a pity that EBM and IOM are three letter "words", four letter "words" are a better label. ;)

    So when Strauss says what he did in the quote above, I think he is right. It IS a desirable outcome for the fatigue to be attached to identified medical disorder/disease, or at least a real disorder and not one of the bogus psychiatric disorders like somatization. That is the goal of ME research, and CFS research generally: to identify the nature of the disorder/s, understand it/them, and develop treatments and cures.

    What is a mistake is all the other stuff associated with this thinking. Particularly in constraining or directing research. Also a mistake was the premature dismissal of viral infection, based on very little evidence, and poorly designed research.

    I am still flabbergasted that we had the technology to measure the problem since 1949, using CPET. How many generations have to pass before doctors and researchers wake up to the facts? Fortunately we are seeing the beginning of that change now, for ME at least, but what about other disorders, other findings? What else have they missed if they can miss the CPET test for over half a century?
     
    Last edited: Mar 16, 2014
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  15. Bob

    Bob

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    I haven't got any specific documents to recommend. I'm sure a search of the web will give some background info. I think Osler's Web has a lot to say about Straus.

    My understanding is that he was instrumental in establishing CFS as a non-disease (i.e. as a concept to be dismissed as a somatoform disorder*.)
    Idiopathic fatigue is a general term for fatigue of undefined origin. It is not a diagnosis. Its use indicates a failure to diagnose.
    It is often used to suggest an undefined functional disorder, or a somatoform disorder* (i.e. without a biomedical origin.)

    Also, people who relate to ME criteria, and consider themselves to have ME, have a relatively distinct set of symptoms, rather than a vague feeling of fatigue. So labels such as 'fatigue' and 'idiopathic fatigue' and 'chronic fatigue' do not define their illness, and do not help them. Instead, ME patients want ME to be investigated, either as a discrete illness or a group of illnesses. ('ME' doesn't have to define a single illness for it to be a useful term.)

    Note: I've used the term 'ME' here to avoid confusion, but some people might use 'CFS' in the same way that I've used 'ME'.

    * A somatoform disorder is a mental disorder that is characterized by symptoms that suggest physical illness or injury but cannot be explained fully by a general medical condition and are not attributable to another mental disorder.
     
    Last edited: Mar 17, 2014
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  16. Bob

    Bob

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    @alex3619, I think you articulated some of my thoughts better than I did... Yes, some (but not all) of the letter is technically accurate, and superficially reasonable. But when context is applied, then the general thrust of the letter becomes corrupt, in terms of science.
     
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  17. Esther12

    Esther12 Senior Member

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    ... a poor explanation though!

    I think I see CFS as a non-disease, so might just have less of a problem with Straus's views. I think that there are potential problems with the labels of CFS, ME and idiopathic fatigue. All of these labels need to be used cautiously, and with an honest awareness of how little they tend to really mean.

    It's immoral to assume that patients should be psychosocially managed just because they happen to fulfil the criteria for CFS, but I've not seen Strauss arguing otherwise. I really don't know a lot about the history of CFS in the US though.

    I think I agreed with most of Alex's post too, so maybe we're all saying quite similar things in different ways?
     
  18. Bob

    Bob

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    Just to clarify: my main complaint about this letter is the failure to see and describe what was in front of them* (for whatever reason), and their* role in denying patients' experiences, and the role they* subsequently played in denying research. I'm surprised were having this conversation actually. I thought we were all well rehearsed in the history of CFS/ME.

    * I mean the entire government structure that led to, and enforced, the 'CFS' paradigm.
     
    Last edited: Mar 16, 2014
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  19. Bob

    Bob

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    Many people see 'CFS' as a non-discrete-disease (i.e. as a 'waste-basket' diagnosis.) One of the points that I made earlier was that Straus wasn't comparing idiopathic fatigue with ME, but he was comparing idiopathic fatigue with CFS, where CFS is a concept they invented that is simply a slightly more complex, and thus politically more acceptable, concept than simple 'fatigue'.

    Whereas 'fatigue' can be similar to CFS (depending on the additional symptoms), 'fatigue' does not describe, and is not so similar to, ME.

    Many people see 'ME' as a distinct entity, or a set of illnesses, (rightly or wrongly) and so are not happy to see the label dismissed as describing a non-illness.

    Perhaps I'm making some assumptions as well, as I'm not very familiar with Straus himself. I was associating him with the movement that led to the Fukuda CFS criteria being formed, and the subsequent history of CFS. (i.e. I'm assuming guilt by association.) I think that Osler's Web doesn't have very good things to say about him (that's an understatement.)
     
    Last edited: Mar 16, 2014
  20. GalaxiiGrl

    GalaxiiGrl

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    From page 2 of the Straus letter:

    "In any case, I commend you again on your efforts to forge an international consensus that has scientific merit and is politically acceptable".

    First of all, we now know that Fukuda's "efforts" didn't really have scientific merit. Second, I think it's VERY sad that scientists would ever have to think about whether their work is "politically acceptable" in modern society.
     
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