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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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What a new CFS definition review looks like

Discussion in 'Institute of Medicine (IOM) Government Contract' started by alex3619, Feb 7, 2014.

  1. alex3619

    alex3619 Senior Member

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    A review was just published in BMJ Open:

    http://bmjopen.bmj.com/content/4/2/e003973.full.pdf html

    It contains this wonderful gem:

    This in the conclusion:

     
    Last edited: Feb 7, 2014
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  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    :aghhh: #@%&*!!
     
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  3. alex3619

    alex3619 Senior Member

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    They clearly didn't follow up on specific research referenced by some of these definitions, especially the ICC. Further, there was apparently nothing published before 1988! Its like ME never existed.

    This kind of review is inherent in an evidence based review, given the methodology curtails and biases the evidence when data is scarce or skewed.
     
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  4. SilverbladeTE

    SilverbladeTE Senior Member

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    My reply to their crap, in the words of a fellow Scot:


    :p
     
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  5. alex3619

    alex3619 Senior Member

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    Who doesn't like Sir Sean Connery? :)
     
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  6. Ecoclimber

    Ecoclimber Senior Member

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    There analysis of PACE is classic.The results showed that the effectiveness of the treatments was similar across groups, irrespective of the case definition which had been used.

    "An argument for more inclusive case definitions for CFS/ME would be the issue of treatment, since existing evidence indicates that side effects of cognitive behavioural

    "On the basis of our review, we argue that development of further case definitions of CFS/ME should be given low priority, as long as causal explanations for the disease are limited."

    Interesting. So in one breath they are stating more inclusive case definition are needed while at the same time that further case definitions should be given low priority?

    "It might still be useful to classify patients according to severity and symptom patterns, aiming to identify characteristics of patients that might predict differences in prognosis or expected effects of therapy."
    This is the reason ME/CFS researchers and clinicians support the CCC & ICC. Instead they ignore the CCC and state:
    "For this context, the CDC-1994/Fukuda case definition appears suitable, with the NICE-2007 as a good candidate for validation studies.

    The futile dichotomy of ‘organic’ versus ‘psychic’ disorder should be abandoned. Most medical disorders have a complex aetiology. Psychological treatments are often helpful also for clearcut somatic disorders. Unfortunately, patient groups and researchers with vested interests in the belief that ME is a distinct somatic disease seem unwilling to leave the position that ME is an organic disease only. This position has damaged the research and practice for patients suffering from CFS/ME.

    "Our review provided no evidence that any of the case definitions identify patients with specific or ‘organic only’ disease aetiology."
    Maybe they should run a query on PubMed over the last 4 years for all of the research articles explaining the organic disease aetiology of ME/CFS or run the proper medical lab tests on patients with ME/CFS that clearly show a dysfunction within the immune system.

    This is a prime example of flawed logic and analysis based on selective literature review of ME/CFS research articles which generates a preconceived outcome such as the one above. It’s incredible that they do not follow their own analysis that researchers with vested interests in the belief that ME is a distinct somatic disease seem unwilling to leave the position that ME is an organic disease only!

    There are various irreconcilable statements throughout this article. It is surprising that this 'research' article was accepted by the BMJ?
     
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  7. Izola

    Izola Senior Member

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    There was stuff in or before the 50' about Myalgic Encephalomyelitis. It had a lot of different names. It was, in the 90's called "The Disease of a Thousand names". I think something was published. All they had to do was ask Dr. Ramsey.

    Wasn't "Evidence based" slimed by Peter Rabbit and his friend the Weasel?

    Someone brought me both Sean Connery and Silverblade? Whoa.

    I just got back from Doctor and AJ the cabbie helped get groceries. So I really don't know what's going on. Scrambled Brain for breakfast, and all, When I first typed that. I left out the brain. So appropriate. Iz
     
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  8. alex3619

    alex3619 Senior Member

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    They did a careful, methodical review. It just happened to ignore almost all the important issues. It ignores the extensive history of medical observations, autopsies, animal studies etc., because they are not in definitions. They might inform definitions, but they are not part of the definitions. That's a fail for the methodology.

    I might have missed it, but how in Hades can anyone doing a proper review fail to deal with specific disease findings such as post exertional crash? When its now on the verge of being diagnostic using the 2 day CPET? How about earlier findings of delayed muscle weakness? How about all the observational data of neurological issues? Ignored, swept aside by a bland and unsubstantiable assertion there are not any.

    Where are the pre-1988 ME definitions?

    They did a formal review, then in the conclusion went right to unsubstantiated speculation, speculation that is directly refuted by published statements, including letters to the BMJ. Its like if they repeat it often enough, somebody will believe them.

    Let me (almost satirically) rewrite one section I highlighted, to reflect another point of view:

    Somehow I think the irony would be lost on them.

    PS @Izola, our posts crossed. There are indeed older definitions, though I think much less formal than Ramsay's first definition.

    PPS I think there were two detailed descriptions in the 1950s, at least, but I am not sure they were written or promoted as definitions.

    While Ramsay was talking and writing about ME for decades, the formal Ramsay definition appears to be 1986. Does anyone have an earlier reference?
     
    Last edited: Feb 7, 2014
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  9. Izola

    Izola Senior Member

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    I:D:rofl::aghhh::rofl: liked your response. I hope its the whole movie. I've been wondering where you have been and if you crashed big time. Of course I usually don't know what's going on around me, most times.
     
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  10. SilverbladeTE

    SilverbladeTE Senior Member

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    As I've said before, there's no point trying to reason with these kind of people, or appeal to their better nature, they don't have any!
    they are either ideologically driven ARSEHOLES (and ye gods is that dangerous), or evil bloody fraudsters

     
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  11. SilverbladeTE

    SilverbladeTE Senior Member

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    Izola
    hehe ;)
    nah, the Uk government and it's corporate allies are making me a non-person, I'm refusing to accept it!
    knocking hell out of me though, my GP is finally I think realizing this illness isn't psychogenic as my blood pressure is very whacky...and won't respond normally so more tablets:rolleyes:

    I fell like Yossarian in Catch 22! :p


     
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  12. Wally

    Wally Senior Member

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    While I think the video clip of Sean Connery is quite expressive and to the point. I just had to bring Clark Gable to the party, so he could also express how he feels about those "whiny individuals" who want patients to believe the stories they are spinning.

     
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  13. Izola

    Izola Senior Member

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    Sh-e-e-itt :(
     
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  14. Ren

    Ren Primum Non Nocere

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    "Unfortunately, patient groups and researchers with vested interests in the belief that ME is a distinct somatic disease seem unwilling to leave the position that ME is an organic disease only. This position has damaged the research and practice for patients suffering from CFS/ME."

    Truly disgusting propaganda - the very, very tired "blame the victim".
     
  15. Izola

    Izola Senior Member

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    When they tried to take my disab away. I guess they thought if they could show I was medically well, but insane hyy'd 2 years were up.
    A shrink asked me if I heard voices. I said 'yes.' "Are you hearing them now?" Yes. 'What are they saying?" A lot of things. "What?'' Lots of things. "Anything bad? Quite "Do you think they can hurt you?" Definitely. "Anyone else?" OMG. yes. "Do these voices have names?" I'd assume so. "Can you remember any names?" Well, at least one. "Is that one trying to hurt you? Most definitely "Is it imminent?' You mean, now? "Yes" Oh. Uh uh uh "Just calm down and try to tell me his or her name" It's uh uh a . . . please pull your name tag out from under your lapel.

    As you can imagine, I howled w/ laughter. What could he do, so he joined in. . I'm sure he was p---- of at the "joke."
    The physical thing followed, T'was brief. He said I couldn't get my files back until the next day. It was a 2 hour drive in traffic> So, the next afternoon I drove to get my file, a little downcast cause there still was the physical.

    I walked to reception to get my file. Felt a little woozy so I sat to rest. When I left I had to go through two heavy doors. I was in the middle of the two doors when I passed out. luckily two women on their way in and fragged me Into the lobby yelling "Is there a doctor here, someone call the EM.s." That is how I came to meet PEM and the wicked Psychobabbers.

    I don't know why but It was a barely quainted acquaintance with lot of weight with the state powers that save my day.
     
    Last edited: Feb 7, 2014
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  16. Bob

    Bob

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    I guess this is the quality of 'research' that we must expect from any review of the current research base, particularly if the reviewers are selectively reviewing mainly Fukuda and Oxford literature.

    I don't know anything about the authors, but I notice that they are based in Norway. I wonder if this is a psycho-social backlash against Fluge & Mella. I'd heard that the psycho-social lobby in Norway were fighting back. (Can't remember where I read it.)

    I'm assuming bias, and perhaps such an assumption isn't warranted because it is true that there is insufficient evidence in relation to ME.
    But the assertions included in the following paragraph seem to be inappropriate in what should be an objective review, and these assertions are not supported with any evidence, and seem to be polemical:

    We could have told them what their conclusion would be and saved them the time and money.

    Erm, let me guess... 'promising treatments' like CBT and GET?!? :rolleyes:

    Show us a single high-powered study of adults with CFS/ME in which objectively measured outcomes record an improvement beyond the control group after 'treatment' with CBT or GET!

    Show us a single high-powered double-blind RCT investigating adults with CFS/ME that demonstrates that CBT/GET are more effective than a placebo for self-report measures.

    (I'm not aware of any such studies - Is anyone else?)
     
    Last edited: Feb 8, 2014
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  17. Izola

    Izola Senior Member

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    Silverblade: IT's so awful you have to go through this crap. It's not good about your blood pressure. But you are using it for good cause--freedom from those chicken livered creeps , with their apathy and their psychopathic personalities. How can we help? Is there some kind of group there or is ME just as hidden there.

    Or do you suppose a whole country of sick people consistently make the same kind of spelling mistakes over and over again. When we aren't leaving off the middle of words, we leave off the beginning or the end. That right there says something. People who misspell and learning children make totally different kinds of errors. Maybe a study should be done on that. Maybe the IOM should know. Iz
     
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  18. biophile

    biophile Places I'd rather be.

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    Garbage in garbage out, and over-reaching conclusions, are the main problems with this paper. Parts were useful.

    Some of their conclusions are too strong considering that "No study rigorously assessed the reproducibility or feasibility of case definitions. Validation studies were small with methodological weaknesses and inconsistent results. No empirical data indicated that any case definition specifically identified patients with a neuroimmunological condition."

    I found this conclusion rather annoying "Development of further case definitions of CFS/ME should be given low priority." So what then, we just keep using woefully inadequate criteria from the 1990s and hope for the best comes out of this mess? Studies such as that of Nacul et al which they reference and was an OK start to getting the data we need, but the validation and refinement of current case definitions or the development of new ones should be a top priority.

    I am wondering whether the concept of "CFS/ME" as a multifactorial broad-spectrum condition is itself an unhelpful belief and vested interest. It is not that medical conditions do not have a complex etiology, or that the dichotomy of organic vs psychic is not without its problems, but the multifactorial biopsychosocial card seems to be commonly used as a lazy way of glossing over complex issues and is also raised by those who wish to justify the inclusion of flawed research to the model.

    These claims are made without any explanation or references, and may allude to a typical strawman about what patient groups believe about the characteristics of ME i.e. outright denying the existence and role of psychopathology in health.

    A ME definition is not supposed to exclude patients with psychopathology altogether, it is supposed to select patients whose main symptoms cannot be attributed to primary psychopathology. ME advocates do not deny that patients can have psychopathology as a consequence of ME, or even that comorbid psychopathology cannot contribute to worsening illness, but they reject the general attribution of their symptoms and behaviours to psychopathology. Spontaneous depression and emotional lability of suspected organic cause was a common symptom in ME epidemics.

    There is actually more and better published evidence for the role of stress in MS than CFS, but because MS is associated with organic pathology it is not subjected to as much lingering psychobabble and arm-chair philosophy of mind.

    So that is where the authors of the review seem to introduce the idea of a distinct "neuroimmune" condition.

    Unsurprising since quality research is severely lacking. Furthermore, "So far, however, treatment studies based on the Canada-2003 or ICC-2011 case definitions are not available." As alex3619 already said, the review focused on case definitions while ignoring pre-1988 descriptions and failing to further discuss or account for pathophysiology.

    PACE did not use "Empirical criteria-2007/Reeves". PACE used the 2003 recommendations. All patients had to meet Oxford criteria, which requires that fatigue is the only main symptom. London ME-lite was not particularly useful either.

    Which is what you might expect if the "effectiveness" was due to priming, conditioning, reporting bias, or placebo response.

    It has been a while since I looked at that study, but I remember thinking the labelling conclusion was highly questionable because of flawed methodology. Also, too much focus on "fatigue".

    Maybe they attributed their symptoms to ME because it better matched the description of their illness?
     
    Last edited by a moderator: Mar 16, 2014
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  19. Izola

    Izola Senior Member

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    Use me as an example on cognitive dysfunction. After a stressful day I went to my comfort, my laptop. I checked to make sure I wasn't butting into a serious forum. I saw only what an unconscious might want to see. I saw but did not see the first several Posts nor the title. I apologize everyone for continuing to make this dreadful mistake.
     
  20. Firestormm

    Firestormm Guest

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    @biophile Thanks for the post. I also saw some more useful aspects within this paper. I also wondered if you had considered the relevancy here to what the IOM and P2P are planning to do with their own assessments of clinical and research definitions, and attempts to recommend new ones. Nobody else seems to have considered that a similar exercise to this paper might be completed by either of those committees - or that this paper itself could form part of their evidence. One of the things I took from this paper was the I think fair critique at the lack of empirical evidence to better substantiate any definition and properly compare different ones: however neither of the committees are planning empirical testing as far as I am aware - which seems (as has been said before) something of an oversight to say the least, if any new definition is to be taken seriously.
     
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