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Telegraph Article on Severe ME Day

Discussion in 'General ME/CFS News' started by Wildcat, Aug 8, 2014.

  1. Wildcat

    Wildcat Senior Member

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    Last edited: Aug 8, 2014
    Bob, alex3619, DanielBR and 7 others like this.
  2. chipmunk1

    chipmunk1 Senior Member

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  3. Wildcat

    Wildcat Senior Member

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    Yeah - the illness trivialiser/denier and CBT/GET promoter got into the Comments section pretty fast.
    If anyone can get through the Telegraph Registration could you post some bioevidence (2 day CPET maybe) in the Comments section?
    .
  4. Wildcat

    Wildcat Senior Member

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    Naomi was featured in the film 'Voices from the shadows, so you may recognise her. This is a very good article.
    .

    From the Telegraph article: .......' For me and thousands of others locked in this prison, the only prospect of release lies in quality biomedical research, of which there is far too little. There are promising developments in the study of viruses and immune abnormalities, and the hope of identifying diagnostic biomarkers and eventually drug treatments. But lack of funding means that progress is slow and in the meantime lives are wasted.

    I will never get my youth back; but progress in understanding ME is urgently needed, before future generations lose theirs.'

    Voices from the Shadows, an award-winning documentary, tells the story of several severe ME sufferers, including Naomi and Sophia Mirza, who died aged 32. www.voicesfromtheshadowsfilm.co.uk

    .
  5. chipmunk1

    chipmunk1 Senior Member

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    sure they will. why wouldn't they? if i have a broken leg and someone tell me it's psychological i would certainly reject that.

    if someone wrongly accuses me of having murdered someone i would reject that too. Any sane person would.
    GalaxiiGrl, Min, DanielBR and 4 others like this.
  6. A.B.

    A.B. Senior Member

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    But that means it is psychological. You aren't fooling an experienced nutjob.:rolleyes:
    NK17, Min, DanielBR and 3 others like this.
  7. alex3619

    alex3619 Senior Member

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    I replied to the latest comment:


    Virtually nobody I know with ME or CFS, and that's a heck of a lot of patients probably numbering in the thousands, dismisses the involvement of the brain in ME. We most typically push brain involvement and brain research. Claims that we do not inevitably are linked to the issues we have with some psychiatric explanations, explanations which have extremely poor evidence and are mostly based on unproven and inadequately tested hypotheses.

    Many of us have tried both CBT and GET, and they failed. They usually do, even in the PACE trial. The PACE trial is, in my current view, an exemplar of what is wrong in modern psychiatry. It has so many obvious flaws, from basic logic and reasoning to statistical error, all of which can be seen in the studies themselves, and most of which have been published and ignored. There is no objective evidence that any substantial improvement can be made by pursuing these hypotheses. Requests to have full data disclosed from the PACE trial have been ignored.

    There are other studies which show no substantive benefit or a decline. Given the misdiagnosis rate is often more than 40% in the UK using the Oxford criteria, and given that the Oxford criteria has been shown to misdiagnose about 60% of patients if I recall correctly, the real problem is failure to diagnose. I do not doubt some subset improve, but what was their correct diagnosis?

    In the history of medicine not ONE claim that an illness is psychogenic, that is caused by mental factors, has ever been proven. Not one. If anyone wants to claim otherwise, please cite a paper. It wasn't true for probably hundreds of claims including MS, gastric ulcers, diabetes, rheumatoid arthritis, gastric ulcers, breast cancer and cancer in general.

    Substantive evidence now exists that ME symptomology is both CNS and peripheral. It involves abnormal brain electrical activity (qEEG), abnormal MRI results (looking at brain density and thickness, not for lesions though those are often seen too), abnormal brain structure (right arcuate nucleus), high brain microglia activation (specialized PET scan) and many other findings. Further, there is a massive reduction in metabolic capacity after activity, as demonstrated by repeat CPET scans, two days in a row.

    ME patients do not deny brain involvement for the most part, it is a PARTICULAR unproven hypothesis they are rejecting, and proponents of that hypothesis sometimes claim (without evidence) this is due to the supposed mental problems, or stigma, or false illness beliefs, and so on. Yet they have never provides any substantive evidence for these assertions. Nor is their hypothesis substantively demonstrated, and every time its been subject to objective evidence they have not disproved the null hypothesis. Where is the evidence they are right? Certainly not in the PACE trial papers.
    cigana, Art Vandelay, SOC and 10 others like this.
  8. Wildcat

    Wildcat Senior Member

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    Thanks very much, Alex.
    AndyPandy, Min and golden like this.
  9. alex3619

    alex3619 Senior Member

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    I just noticed I can edit my comment, so I went in and fixed two issues.
    Min likes this.
  10. alex3619

    alex3619 Senior Member

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    A comment on a reply to my comment:

    I addressed two specific comments:

    "As a neuroscientist, I find it shocking that the ME community is so entrenched in the outdated and biologically impossible concepts of "physical" versus "psychological"."

    "I am confused why this idea is so abhorrent to the (vocal) members of the community, and am even more surprised that they would so easily disaffiliate themselves from mental health disorders, who also suffer devastating biologically-based diseases."

    High citation means nothing substantive. Most of the disproved claims about psychogenic causation are highly cited. What matters is evidence. The papers out there do not adequately address evidence; the methodologies used fail to meet what I would consider a minimum standard when the existence of such disorders is concerned. Further, the paper you cited was not even aimed at addressing the question that psychogenic seizures do not exist. Let me assert again, every such claim for which we have finally had good evidence has been proved to be false. Studies of prevalence of presumed disorders for which no adequate diagnostic capacity exists do not provide evidence that they exist.

    ME is different as a diagnostic entity compared with psychogenic claims. Substantive evidence exists of brain, immune, hormone, pathogen, metabolic and other biochemical disorders. It occurs in epidemics, backed up by the physical evidence of problems. Further nearly all symptoms can now be explained based on pathophysiology, though underlying causation is still being investigated.

    For the record I am a biochemist and a monist on theory of mind. There is no mind, only brain and brain function in my view.
    Mij, cigana, SOC and 8 others like this.
  11. alex3619

    alex3619 Senior Member

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    A further reply:

    Agree, but unfortunately the only specialist treatments NICE guidelines recommend (mild-moderate ME) are CBT and GET, which show clinical efficacy in people who want them. By contrast, antivirals have not been shown to have efficacy in a RCT as far as I'm aware- the biggest study I know about wasn't blinded and isn't particularly valid, research-wise.


    • Alex Young
      This misconstrues the nature of evidence based medicine. Double blinded RCTs are only highly useful for clinical interventions. Further, psycho-psychiatric studies are not double blinded. Evidence ranking is only used to prioritize where to begin looking at evidence. Current estimates include a possibility that 10% of RCTs are wrong. Even metastudies may not address this.

      The PACE trial for example, is not double blinded, uses flawed statistical methods in the claim to recovery and normal physical function; redefines terms in highly unusual ways which often are not mentioned outside of the papers so that reference to "normal" and "recovered" are not realized to mean something entirely different from the common meaning.

      The evidence is primarily subjective, the effect sizes are tiny, and the flaws make this research unreliable. In EBM it is the practice to downgrade studies because of flaws, and to upgrade studies because of effect sizes. The evidence is that antivirals for targeted patients have an effectiveness about an order of magnitude above that of CBT/GET. As a result such case series studies should have an evidence upgrade. Compare this to the PACE trial which has so many flaws that at the least it should be downgraded one level of evidence, and I would argue two.
    AndyPandy, Valentijn, golden and 2 others like this.
  12. chipmunk1

    chipmunk1 Senior Member

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    golden, alex3619 and Wildcat like this.
  13. DanielBR

    DanielBR Senior Member

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    @alex3619 Thank you so much for fighting for us in the comment section.

    This neuroscientist suffers heavily from confirmation bias. He wants to be right and not to discover the true underlying pathology.
    NK17, golden and Wildcat like this.
  14. alex3619

    alex3619 Senior Member

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    I like the article on severe ME. Such articles need to be more visible.

    It is indeed the case that confirmation bias is rampant in some areas of modern science, and even more so in "social science". Compounding this problem is the use of statistical methods in inappropriate ways. If I can get my brain working a little better I will blog on this.

    For me to comment on some individual's over-use of confirmation I would need to know a lot more.

    My position is now that sufficient evidence exists for a pathophysiological explanation of ME that we should not and I will argue cannot tolerate argument from ignorance on this issue. Sure we don't have ultimate causation, yet, but I have no doubt we will get there.
    NK17, AndyPandy, Mij and 3 others like this.
  15. DanielBR

    DanielBR Senior Member

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    I would love to see more descent articles and radio/tv features about ME in Germany as well! Mostly there are none or they are poorly done.

    In my opinion there are three big problems with modern psychiatry. They still rely on the idea of the soul/body dualism, which doesn't exist. They constantly loose ground to neurology (whenever science pins down a defect area of the brain, e.g in Parkison)
    and to psychology (which is much more scientific and better in therapy) and so try to defend their position with all means (with rubbish science). They heavily fall into the trap of confirmation bias, because they don't have substantial evidence for their claims.
    Cheshire, NK17 and alex3619 like this.
  16. chipmunk1

    chipmunk1 Senior Member

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    i don't know. I think both psychology and psychiatry should stay away from a lot of conditions they claim to understand and treat. Also i think both often have very poor science. Not sure which one is worse. Psychiatry can be more cruel as the law gives them more power over people. Psychology is probably more human as they focus more on human interaction while psychiatry likes to take a clinical and detached view of human beings.
  17. Purple

    Purple Bundle of purpliness

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    As of now, today's most viewed article in the Health section of The Telegraph is about 'the great ketchup debate' - whether to fridge it or not. The Telegraph lists the top 5 most viewed articles for the day, week, month - so let's share this article about severe ME, to give it more views and more exposure - and to get it into the top 5 :)
    SOC, Countrygirl, Valentijn and 2 others like this.
  18. alex3619

    alex3619 Senior Member

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    [Satire] Why, all of them? Doesn't this mean the researchers wear a blindfold and then imagine what the results must be? It must, because how else do you explain the PACE trial?[End Satire]
    Last edited: Aug 8, 2014
    jimells, Cheshire, Bob and 1 other person like this.
  19. alex3619

    alex3619 Senior Member

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    And again:

    "I agree with Polder. The history of claims that diseases have psychosomatic causation is a history of unmitigated scientific failure. NO disease has been proven psychosomatic, possibly hundreds that were claimed to be psychosomatic have proven not to be. That includes breast cancer. I am writing a book on this, and there are other good books and articles out there.

    Richard Sykes pointed out that a huge underlying issue is the psychogenic inference, which I like to call the psychogenic fallacy. His published papers on this are worth reading.

    Popper would be that philosopher I suspect. He started by demonstrating Freudian explanations were nonscience, from about 1922. Later the term pseudoscience became more widely accepted for this issue. Psychogenic medicine has lost the plot, lost the original research question, and is now dogmatic unreasonable religion masquerading as science. Its not ossified though, as it keeps morphing whenever its disproved.

    Let me give a little flavour of the odds involved, though while I would not call this scientific or even mathematically valid, it does demonstrate the point. Let us look at the evidence of psychogenic causation was proved? Number of cases? Zero. Let us look at the evidence that psychogenic causation was disproved. Number of cases? Many. Zero goes into a big number how many times?

    Yet I keep reading that there is a great deal of evidence that psychogenic diseases are real, with an implication that they are proven to exist.

    Let me make several statements to think about:

    If we have a psychosomatic illness because a physical illness cannot be
    objectively shown, how is a psychosomatic illness any more valid since
    it cannot be objectively shown?

    A psychosomatic disorder is simply the belief that someone has a
    psychosomatic disorder. It is failure to diagnose. If there are any
    papers that prove the existence of any psychosomatic disorder, NAME
    ONE!?

    Medically Unexplained Symptoms are Psychosomatic? Psychosomatic illnesses are medically unexplained."
    golden, chipmunk1, Cheshire and 2 others like this.
  20. jimells

    jimells Senior Member

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    I only have one big problem with modern psychiatry: it exists.

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