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New Exercise Study Brings Both Illumination and Questions
Simon McGrath looks at new objective evidence of abnormal response to exercise in ME/CFS patients, and the questions that researchers are still trying to answer ...
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Simon Wessely wins prize for "Standing Up For Science."

Discussion in 'General ME/CFS News' started by urbantravels, Nov 6, 2012.

  1. Leopardtail

    Leopardtail Senior Member

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    Ester,

    the whole argument around the 'psychosocial' aka psychotic approach to ME revolves around several technically inaccurate and naive premises.

    Firstly the assumption that most people with ME become de-conditioned due to inactivity is soundly wrong. Most people with ME spend many years fighting valiantly to do as much as they possible can, those of us who are not very severely affected often retain a surprising amount of strength for our level of activity. The issue is one of stamina, however further exercise decreases that stamina - soundly debunking the 'de-conditioning model'.

    Secondly there is an assumption that people with ME have 'given in' or 'maintained illness belief' my personal experience of people with ME is that more than half are 'very determined to get well' Speaking personally for the first 6 years of my illness I was quite determined that I needed to 'shake myself out of this' and tried relentlessly to get myself fit and stay active. It was only when I became too ill to function and was forced to rest that I began some degree of improvement.

    The two founding premises of the Psychosocial approach are in short dogma and completely without scientific or technical foundation. They also show a profound lack of medical ability since the individuals presenting this claptrap are clearly NOT listening to their patients. Effective communication is the single most important medical skill - no test can match the massive volume of qualitative information available to the patient's own brain. Treating patients as though they are stupid or delusional and failing to listen them is an act of negligence that precludes correct diagnosis.

    The approach also confuses trivial fatigue (as caused by hard work) with the exhaustive energy deficit that occurs in ME. This model also fails to provide any solid explanation for the biochemistry behind post exertional malaise with delayed onset.

    It also fails to explain aspects of the disease such as Insulin resistance (in severe cases) over which the brain has no control.

    Further it fails to explain why this approach causes severe and sometimes permanent increases in disability. In time the psychotics stopped running the nut house and admitted they are wrong.
    Last edited: Jan 7, 2014
    Kati, Antares in NYC, Bob and 2 others like this.
  2. Leopardtail

    Leopardtail Senior Member

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    Bob,

    I agree in large part with what you have said. PEM is the hallmark symptom of M.E., if you don't have it, you don't have M.E.

    With regards all of the methods used in M.E. NONE of them are entirely objective by virtue of M.E. being imperceptible. For example a healthy person and one with ME might achieve the same score in a test but feel VERY different the following day. Further if you repeated tests day after day, there is potential for severe and lasting harm to the subject of the study.

    The Mitochondrial function test is the only thing that might work, but its very expensive and not widely recognised.

    The long and short of it though is no measure is perfect, even thyroid tests have been found to be less reliable than symptomatic reports of the patient.
    Iquitos likes this.
  3. Leopardtail

    Leopardtail Senior Member

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    Ellen,

    I make no comment about the personality of Simon Wessley, other than this. He was responsible for the MRC in Britain and appointed only people who agreed with him. He also spent the funds only on research that agreed with him. He has also suppressed NICE minutes as 'state secrets'. These are not the actions of a rational or a decent person. His actions speak for themselves.

    Once one has the label of a mentally ill malingerer it is impossible to effectively complain, if one has ME one also dose not have the finance or energy to make any such complaint. Hence that is no indication.

    His actions in research and the press have presented a distorted view and created a negligent medical system. He actions in NICE have actively prevented GPs taking appropriate action. Further I wanted to conduct research into ME but concluded that it would NOT be a good idea. This was not because I fear ME patients as he alleged, but because I considered the psychiatric activists would make my life hell and cause the research to be ignored.

    As far as I am concerned he is responsible for Mass medical negligence and multi-organisational discrimination by the state.

    Ignorance is no excuse in law, it is no excuse in medicine either.
  4. alex3619

    alex3619 Senior Member

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    [My underlining]

    I wonder about this. I suspect they are in a logic trap, or circular reasoning. It is highly likely that most of their patients do not have ME, and so the stories they hear will not resemble at all well those with ME patients. If they then presume that ME patients are atypical, as the stories are different, they may tune them out. So they are left with the only stories they listen to are those that appear to support their ideas.

    If their hypothesis that the Oxford definition of CFS is a valid logical definition, then they can accumulate data and experience showing that the Oxford definition is a valid definition. This is the fallacy of begging the question if it happens. If Oxford is valid, then the data shows its valid. If however its not valid, then the data does not show its valid. Since we already know it selects for a highly heterogeneous group most of which do not have ME, then its not valid.

    They also have a very bad tendency to ignore objective evidence.

    Here are some factors for which I have never seen quality evidence, never seen studies showing them for ME, and do not match ME patients in my experience:

    1. We are deconditioned.
    2. We are afraid of the psychiatric stigma of having a mental illness so reject what they say.
    3. We don't want to exercise, perhaps from mistaken illness beliefs, perhaps from phobia.
    4. We overdo things and boom bust - this one is partially right, but misinterpreted.
    5. We are depressed, or have anxiety. Again this is a misleading half truth.

    All these statements appear to be FALSE. Lets review them again:

    1. We are deconditioned. This is NOT what the exercise physiology shows. What we have in ME is a crash in energy production after activity that persists and can worsen for a while. That is measurable using CPET, a highly objective measure. Of course we do get unfit, but that is because we have so many problems for a very long time.

    2. We are afraid of the psychiatric stigma of having a mental illness so reject what they say. I have been impressed with the compassion with which our community embraces those who do have a mental illness. Many of us have also tried psychiatry, and it failed. I see no evidence that most of us are afraid of the stigma of mental illness. In my personal experience I have found ME and CFS to have more social stigma. Depression is almost acceptable these days, though I think some mental illnesses are not so accepted.

    3. We don't want to exercise, perhaps from mistaken illness beliefs, perhaps from phobia. The biggest problem we have is not exercise avoidance, its trying to do too much. It can take years for us to learn to take it easy. So what maintains our illness during those years? With me it took about a decade from diagnosis to pacing myself, and even then I spent years more pushing myself mentally.

    4. We overdo things and boom bust - this one is partially right, but misinterpreted. We do often have boom-bust cycles in our experience. Do we overdo things and so perpetuate the response? Not likely. How do you explain a bust from walking a few dozen meters, or from cooking dinner, or just about any minor thing? How about those who are so sick that activity that crosses the line is going to the bathroom, or getting a drink of water? Boom-bust happens, but it can only take trivial activity to cause it. Given the CPET data its highly likely this is connected to whatever metabolic problems underlie our crashes.

    5. We are depressed, or have anxiety. Again this is a misleading half truth. Some of us do get depressed, typically reactive depression. Some of us probably do have primary depression, but many of those are diagnosed with CFS and it may often be a misdiagnosis. The Oxford definition selects for depression. Further most doctors can tell ME apart from depression with one simple question: if you could do anything what would you want to do? Most of us have a long list, and we want everything on that list. We do not lack desire to do things, we just can't do them.

    Similarly some of us do have anxiety, but this is to be expected - we are sick, and lots of things make us worse, its not irrational to be anxious. Of course some of us have more severe anxiety, but this needs to be investigated. Its not a cause of ME according to any objective science published.

    Simon's papers need to be examined, analyzed and criticized, but then again so do any papers from psychogenic medicine, the biopsychosocial approach, or even regular science. Criticism is how science works, without it science is a dud. Criticism is also how other non-scientific disciplines work .. things need to be checked, questions need to be asked.
    Last edited: Jan 7, 2014
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  5. Bob

    Bob

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    But, like you go on to say, they ignore the evidence.
    Their pet hypothetical model of illness (i.e. fear/avoidance/deconditioning etc.) has been debunked by their own research studies (e.g. FINE & PACE), suggesting that perhaps we are not discussing such different patient groups, and demonstrating that they do not objectively consider the evidence. Their lack of objectivity/candour/honesty, in terms of interpreting and promoting their own research, supports the notion that they aren't interested in actually listening to, or observing, their patients. Or if they do, they ignore their observations. Instead, they construct a flawed (and now debunked) hypothetical model of illness, and try their best to shoe-horn all their patients into it. They cling onto their model of illness despite all the evidence against it. (Mis-promoting CBT and GET as leading to 30%, and then 22%, recovery rates is an example of this. Along with massaging the data such that a recovery rate of 15% could be inappropriately published.)
    This is a case of wilful blindness/ignorance, IMO, at best.
    They are at liberty to say that CBT and GET should only be used as coping mechanisms for a small minority of patients, and that CBT/GET don't make any objective difference to the illness. But they don't say that. They continue to mis-promote CBT/GET as rehabilitative treatments that lead to 22% recovery rates and 60% improvement rates.
    Perhaps there is some element of self-delusion involved. Perhaps they make some efforts to delude themselves by mentally focusing on all the patients who are pliable and who are receptive to their ideas and treatments. (I expect that most newly diagnosed patients are pliable with respect to receiving CBT etc, and receptive to their input and ideas.)
    Any patients who do not like the treatment, or who respond very negatively, will either stop attending, or will be labelled difficult psychiatric cases, or with some other label.

    Sorry, slight rant there! I know I'm preaching to the converted.
    Last edited: Jan 7, 2014
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  6. Cheshire

    Cheshire Senior Member

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    This one really makes me angry. I don't fear any stigma coming from my close friends and family. If I had a mental problem, I know they would be supportive, as they have been with people I know. But I won't forget the change in medical staff attitude towards me when they realised that I had "medically unexplained symptoms". Some started talking to me in a patronizing tone as if I was 5 years old, some looked at me with disdain or pity. These are part of the worst moments of my life. Where is the stigma coming from??? From what I experienced, from the medical world itself!!!
  7. alex3619

    alex3619 Senior Member

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    There is a fine line between ascribing motivations and describing actions in these things. We cannot prove motivations, only ask questions about them.. We can prove failures in reasoning and ignoring evidence. These two are their Achilles Heel. Their statements are often counter-factual and sometimes irrational. That can be objectively demonstrated. Ascribing motivations buys into the very thing I want to avoid: psychobabble. Yes, those motivations might be correct, but how do we prove that? We can suspect, we cannot prove.

    To get to the heart of motivations requires a whistleblower or a very specific documentation. To show misleading statements is easy. To say why they wrote those statements isn't. In my opinion we often waste far too much time trying to prove intentional misconduct or deception, when we would be much more productive demonstrating failure and misleading or ambiguous statements. The result is the same - the research will be discredited, and enter the wastebasket of failed hypotheses.

    So by all means use suspicions about motivations to drive advocacy, but its the actual things we can demonstrate that will bring them down. Facts and reason. That and the science advancing to show their models and hypotheses are nonsense, which is actually happening right now.

    Now this is different if we have a powerful political process in play. Yet even then ascribing motivations can backfire.

    Now I don't doubt some are, if not actively engaged in bad research practices, at least aware they might be. Yet the human tendency is to explain this away. Their careers are on the line. Our lives are on the line. This is not a fight we can back away from. There is no way they can suppress advocacy forever, even using highly dubious tactics. Eventually facts and reason will make a difference, but it is the science and politics that operate in more reasonable time frames.

    I am in favour, however, of asking why a lot about their actions, claims and methods, and doing so publicly. Don't make the mistake of ascribing bad behaviour, demonstrate a problem and keep asking why, why, why?

    PS The entire field of psychiatry has some very dubious practices, practices that are enshrined in tradition. If it worked for them in the past, no matter if its valid, then they will continue to do this. Its unethical, and probably immoral, but its not easy to demonstrate this. It is easy to show its irrational.
    Last edited: Jan 7, 2014
  8. alex3619

    alex3619 Senior Member

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    Yes @Cheshire, exactly. The stigma is largely medical community generated. For the most part its not coming from us, and we quite rightly resent it.
    Bob likes this.
  9. Bob

    Bob

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    Indeed. Absolutely. We are only concerned about getting an appropriate and accurate diagnosis. The alleged concerns about stigma are an invented problem on the part of CFS psychiatrists only.
    alex3619 likes this.
  10. Bob

    Bob

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    Yes, I totally agree that speculating about motivations is not helpful in advocacy work. I believe that discussing unproven motivations is entirely 100% counter-productive in advocacy work. However, this forum is a fairly safe place to explore some speculative issues.

    What we do know is that they are either purposely misleading, or stupidly ignorant.
    alex3619 likes this.
  11. alex3619

    alex3619 Senior Member

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    One of the issues here is a history of the recognition of stigma about mental illness that goes back to at least the 1970s, though I haven't looked to see if it was discussed much before that. So there is a stigma meme running around the psychiatric community, and a claim to stigma or fear of stigma makes intuitive sense even in ME, until you actually look for the evidence.

    Entire programs have been created to change attitudes about mental health. When they make claims based on these ideas, they resonate. This is in effect a rhetorical claim, not a scientific one. Where is the evidence?
  12. Cheshire

    Cheshire Senior Member

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    And what upsets me more, is that Wessely keeps asserting is "fear of stigma" theory, while he should, like many psychiatrists that do show a deep concern towards their patients, fight against it, and claim that this stigma is something unbearable. Instead, he implies that we should accept it.
    greebo likes this.
  13. Leopardtail

    Leopardtail Senior Member

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    My stuff in bold

    Did you know that the field of Psychiatry labelled diabetes, lupus and MS psychyogenic? The field requires no hard proof at all for these theories and often argues with the scientific field of Neuerology? It's little more the dogma pretending to be science.
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  14. Leopardtail

    Leopardtail Senior Member

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    I agree but am much more worried by his partners in human rights abuse labelling every scientist who criticises them as 'An Acitvist' or 'Campaigner'. Their attitude is essentially 'we are sane, the rest of the world is nuts'. Given that the very definition of madness is 'having a view of the world that contradicts the normal view' - one could form an obvious conclusion.
  15. alex3619

    alex3619 Senior Member

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    I am writing a book on this. The list is much much much longer than that ... if a cause isn't nailed down they want to label it psychiatric. Yet their batting average is zero to many. They have never proven any disease is psychogenic, but they have been is disproved again, and again, and again.

    I too had traditional CBT and it was mildly helpful, though I had already encountered most of the ideas in Buddhism.

    I tentatively classify psychogenic medicine as pseudoscience. It has all the hallmarks. Its definitely nonscience for the most part. The key hypotheses not only are not tested, they cannot be tested, which is nonscience. Unfortunately most of psychiatry is nonscience, so the entire psychiatric industry has a vested interest in denying the problem. Yet lately there are strong moves within psychology and even psychiatry for change. That is a good sign.

    You might like to read some of my blogs, starting with this one: http://forums.phoenixrising.me/index.php?entries/the-witch-the-python-the-siren-and-the-bunny.1149/
  16. alex3619

    alex3619 Senior Member

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    Some of them, including Simon, exert effort to repeatedly claim that its a few malcontent activists, who are not in their right mind. They almost never acknowledge that their strongest critics are researchers, some doctors and some scientists, who oppose their claims, and now one has made a call to strike doctors off the medical register who prescribe exercise for ME. Most of these researchers have not had ME either, so its not patients or former patients who are opposing them.

    Psychogenic approaches to ME will die out, just as they did with gastric ulcers. Yet psychogenic medicine survives because its so airy fairy that nobody can prove they don't have, for example, hysteria, and they thrive on the doubt. Psychogenic medicine reinvents itself all the time. Their diagnostic definitions are not stable, yet they everyone to think they have the answers.

    The evidence from their own studies is enough to show that CBT/GET is a failure. Its not even one tenth as good as antivirals. (This is both from the numbers of patients who respond, and the size of the response, which when combined is an order of magnitude improvement over CBT/GET, see Lerner's research.)
  17. Roy S

    Roy S former DC ME/CFS lobbyist

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    Things on the internet like this don't seem to prove that Simon is a nice guy, Ellen.

    http://www.whale.to/a/me12.html

    Maybe Sonia Poulton would like to know this.
  18. Leopardtail

    Leopardtail Senior Member

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    Alex,

    there have been at least two books on this issue in ME specifically, and another on poor use of evidence in NICE (the British standards body for drug choice by doctors). I am kinda hoping your book will be a general coverage of the issue and thus more likely to be taken notice of.

    With respect to what's going on in ME I have actually have found a way to prove that the hypotheses are more/less likely to be true - the method however is horrendously expensive so I will not get funding for that until I have found a smaller project on which to cut my teeth and generate a track record. (My specific area of interest is biochemistry - I got involved in it when my Doctor refused to do everything that might help, in attempt to bypass them).

    I look forward to your book being published, any ideas how close you are?

    Brian

    PS, If you would like suggestions for some cheeky titles, I am up for it... (wicked evil grin)
  19. alex3619

    alex3619 Senior Member

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    There are a lot more than two books on this issue. If you have a list of books I would like to see it. Kennedy's Authors of Our Own Misfortune? is perhaps the newest I have read. I have also read Overton's Charcot's Bad Idea, and Walker's Skewed, plus older work and criticisms in various papers. These three books are on ME and psychogenic medicine, though Skewed also covers MCS. There are more books I think might be relate but I have not read them yet ... lots more books. I have lists of them somewhere, but those lists are hard to find in a hurry.

    My book will not be done for ten years or more at current progress, perils of having ME. However a big picture outline might be available in 2016. This will look at failures in methodology, pseudoscience, failures in reason, neglecting evidence, impact and support from the biopsychosocial and evidence based medicine movements, as well as the medical community generally and politics ... and even economic theory. I am casting a wide net, but each section of the book (really an extended report, too big for a book) will look at one specific issue.

    I got into biochemistry more or less the same way, and finally got my biochem degree.
  20. Firestormm

    Firestormm Senior Member

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    I think EllenGB left the forums some time back. Though I could of course be wrong, but I'm fairly sure she did, so those expecting a reply from her may be disappointed.

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