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Michael Sharpe: "Chronic fatigue syndrome: Neurological, mental or both" incl. PACE

Discussion in 'Latest ME/CFS Research' started by Dolphin, Apr 25, 2011.

  1. Dolphin

    Dolphin Senior Member

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  2. Snow Leopard

    Snow Leopard Senior Member

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    Sharpe is still at it. Does anyone remember this: http://cfids-cab.org/cfs-inform/Cfsdepression/sharpe05.pdf
    In it he fleshed his point of view out in more detail. He even states that is 'rational' for patients to dismiss implied notions of psychiatric disease. (I even laughed when I read that).

    What Sharpe needs to realise is it isn't the stigma we are worried about. It is the fact that such treatments don't actually have any effect on most patients and repeated suggestions that these are the only 'evidence based' (but arguably not science based) treatments makes both scientists and those who fund such scientists less interested in doing research that would ultimately lead to understanding of the aetiology and highly efficacious treatments.

    Nor are we implying mind-body dualism. We are simply pointing out that the efficacy of CBT/GET is not well proven in terms of objective results. Secondly, it has not been proven that cognitive behavioural treatments actually treat the biological dysfunctions in CFS.

    The evidence on the PACE study is poor. The problem is that individuals are easily conditioned or primed to give different results on questionnaires, but objective measures of improvements - such as time spent in employment (can be volunteer) or doing study are usually not found. Other psychologists and sociologists regularly investigate such priming/conditioning and the effect on questionnaires (eg the results on the questionnaires don't necessarily reflect the persons opinion in general), but yet there seems to be a blind spot in considering these factors when it comes to the reporting of cognitive behavioural interventions.

    Has anyone wondered why it is only the neurologists who actually do research towards bridging the psychology-neurology gap?
  3. WillowJ

    WillowJ Senior Member

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    yes, psychiatrists regularly decry the physical/psychological disparity, but it is they themselves who perpetuate this divide by continuing to publish regarding "mood disorders" and "somatization" (or "functional" disorders, whatever).
  4. Dolphin

    Dolphin Senior Member

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    That reminds me that Michael Sharpe was one of the authors of 'What should we say to patients with symptoms unexplained by disease? The number needed to offend', a short paper about trying to chose a word that didn't offend patients (basically hiding what the doctor is thinking): http://www.ncbi.nlm.nih.gov/pmc/articles/PMC139034/pdf/1449.pdf .

    One of the co-authors was Charles P Warlow, the Lancet Ombudsman (if you're unhappy with the Lancent)! Another is Wojtek Wojcik who wrote the paper on the neurologists' views of whether CFS is neurological. It's really annoying how these journals seem to get colleagues/people with similar views to write accompanying editorials. If one just read the editorial for the FINE trial, one would think it was a great success: http://eprints.soton.ac.uk/147139/2/bmj.c1799 .
  5. Snow Leopard

    Snow Leopard Senior Member

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    Exactly. The concept of "functional" disorders promotes the duality. Until actual pathways between cognition and "functional" symptoms are biologically demonstrated (at which point they cease to be merely "functional"), there will continue to be a duality.

    The fact that the Neurologists don't believe they can help CFS is more worrying and you wonder why Sharpe would focus on patient advocates and not those Neurologists?
  6. Mark

    Mark Acting CEO

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    Sharpe as Attack

    Well said Snow Leopard.

    I can agree with half of Sharpe's argument, because his argument almost seems to recognise that so-called "mental" illnesses are in reality physical illnesses affecting the brain. But the mental part of his argument, apparently elevating the "psychiatric" half of his equation to equal and complementary status with the "neurological" half of a mind/body equivalence, begs the question: So how effective, then, are talk therapies for conditions like bipolar disorder, in comparison to pharmaceutical interventions? In fact, the true progression of history is the growing understanding that conditions that used to be denigrated and shunned by society as "mental" illnesses are really just as physical as any other illness. And the real progress in these fields has come from better medical treatments, not from better counselling.

    But the most annoying aspects of Sharpe's piece aren't in the dumb implication that the "psychiatric" field should be seen as dealing with "mental" issues as distinct from physical issues (as if modern psychiatric treatments consisted of some magical kind of highly effective non-physical interventions, quite unlike regular medicine), they are in his arrogant and offensive speculation about the real reasons for patients' objections to what is handed down to them.

    He doesn't reference the ignorant internet comment he cites, and that's not surprising because the rest of the discussion is a demolition of PACE on the Guardian discussion thread, and he would prefer himself and his readers to ignore everything from that discussion except for this bemused and befuddled comment by Slurper:

    Here's the reference to the internet discussion he mentioned - just ignore the pretended journalism at the top, the comments below speak volumes as to the intellectual content of the two sides of the debate: where oh where is that scientific and evidence-based response from the PACE trial's many well-informed fans at the Guardian, I wonder?...
    http://www.guardian.co.uk/society/2011/feb/18/study-exercise-therapy-me-treatment

    Funny old world indeed! It's a damn good question though: Why on earth would so many sick people be so angry and unreasonable about something that might help them? What possible reason could they have for rejecting a treatment that could bring health in place of their suffering? Baffling, isn't it? Slurper, of course, doesn't really want to know the answer...

    One possible reason - insinuated successfully to some, perhaps - is that the patients actually want to be sick: they enjoy all the pain and suffering, and all the attention and perks they get out of it (ha bloody ha).

    Another possible reason, of course, is that the patients know damn fine well - from bitter personal experience and without need for the ample evidence that PACE itself provides - that these treatments are about as much use as a psychologist in an operating theatre (which is to say: not quite as useful as a chocolate teapot), and that 5m would be better spent on the real medical research into their illness which is so conspicuous by its absence.

    Indeed, Dolphin, pretty annoying stuff! I really don't know how I managed to get through this post without swearing, frankly - perhaps I'm getting mellow in my old age...
  7. WillowJ

    WillowJ Senior Member

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    good point!
    neurologists who don't believe they can help are not competing him with or challenging his position in any way. the patient advocates, on the other hand, are asking reporters, physicians, and the public to use critical thinking skills to assess Sharpe's position and compare the PACE methods to normal scientific procedures
  8. richvank

    richvank Senior Member

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    Hi, all.

    I found it interesting that the neurologists generally don't view CFS as a neurological disorder, but I really don't find this too surprising. I think they are right.

    In my view, ME/CFS is fundamentally neither a psychiatric nor a neurological disorder, though it involves effects on both the physiological "brain" and the psychological "mind."

    I believe, based on what I consider good evidence, that ME/CFS is fundamentally a metabolic disorder, as described by the GD-MCB hypothesis, which can be found at

    http://aboutmecfs.org.violet.arvixe.com/Rsrch/GSHMethylation.aspx.

    The core issue in the metabolism leads to problems in a wide variety of body organs and systems, including neurological problems, and the deleterious effects on the victim's ability to live her/his life in a normal way can produce secondary depression, which is currently considered a psychological condition.

    I sincerely wish that the ME/CFS research and clinical communities, especially in the UK, would move away from this meaningless and self-defeating conflict and get on to looking at the real basis for this disorder so that meaningful progress can be made in helping those who suffer from it. As an example of worthwhile work from the UK, I would particularly draw your attention to the study of Myhill et al., which can be found at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2680051/?tool=pubmed

    Best regards,

    Rich
  9. WillowJ

    WillowJ Senior Member

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  10. Marco

    Marco Old blackguard

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    Sharpe could have a useful discussion with this guy :

    http://asp.cumc.columbia.edu/facdb/profile_list.asp?uni=baf1&DepAffil=Psychiatry

    http://www.psychologytoday.com/blog...ic-fatigue-lyme-medically-unexplained-no-more
  11. oceanblue

    oceanblue Senior Member

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    Exactly. As Michael Sharpe said in his ABC interview, they needed to treat 7 patients with CBT (its 8 for GET) for one patient to improve by a rather modest amount. It's about efficacy, not social acceptability.

    So this really bothers me:
    'More effective' than APT might be true, but they're still pretty ineffective. And their model didn't predict that the 'illnes can be improved' but that 'symptoms are temporary and reversible' and that GET & CBT would make a big difference. Leaving aside issues of bias in self-report questionnaires for fatigue and physical function, the PACE results are still poor indicating that the Fear/Inactivity/Deconditioning model PACE is built on is fundamentally flawed. MIchael Sharpe and his co-authors should be addressing this failure, not waffling on about the perceived stigma of mental illnes and the limitation of mind-body dualism.
  12. Enid

    Enid Senior Member

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    Quite agree oceanblue with all your points. Michael Sharpe and "friends" are just hot air whichever way you look at it. Sounds like desperate efforts to keep this in the "behavioural" fold. They just tire one with any thoughts of them as science/research advances/reveals the pathologies/viruses and multi system nature of ME. Hope they continue to have their problem with mind/body dualism - I don't. (Tis one - all those very "bodily" neurons/chemicals/systems). I tried to keep more and more mobile once and headed straight into a severe relapse.
  13. richvank

    richvank Senior Member

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    ***Thanks for posting these abstracts. I think that these papers are some of the more interesting studies that have been done in ME/CFS, and I think that they do provide some clues as to what is going on, but they are all looking at downstream effects in the pathophysiology. Until people start asking about earlier events in the cause and effect tree, they will continue to be describing effects rather than causes, and the treatments that result will not be getting at the root of this disorder.

    ***Sorry for the rant, but I presented this hypothesis to the research community at the IACFS/ME conference over four years ago, and unfortunately, they continue to quibble over whether it is psychological or neurological or immunological or endocrinological, or rheumatological, or infectious, or toxicological, or mitochondrial, or genomic or gastroenterological, or allergic, or ?, and the fact (in my opinion) is that it affects all these specialties, but its origin is not in any of them.

    ***If you've read this far, thank you for your indulgence! :)-)

    ***Best regards,

    ***Rich
  14. floydguy

    floydguy Senior Member

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    Hi Rich,

    After my experiences with doctors, I've often wondered if they would all benefit from a seminar in root cause analysis. Nearly 100%seem unable to distinguish between effects and root cause issues. Obviously, it's not always that easy but they don't even seem to make the attempt to investigate the root cause in many cases.

    Outside of medicine it's used quite effectively in manufacturing and other engineering areas.
  15. richvank

    richvank Senior Member

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    Hi, floydguy.

    Physicians are not trained to that. Their training involves memorization of a great deal of information involving how to diagnose the various known disorders, and how to treat them once diagnosed, using what is considered the established "standard of care," which is dominated by the use of patented drugs. They are basically very highly skilled technicians. They are not trained to do analytical thinking.

    Medical researchers are supposed to be educated to do analytical thinking, but unfortunately they seem to be trained in a compartmentalized system. They become specialists, and tend to stay inside their boxes.

    For more insight on why physicians do what they do, I recommend looking up the interview with Burt Berkson on the web. It is very enlightening.

    Best regards,

    Rich
  16. Esther12

    Esther12 Senior Member

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    This. Whenever they start rambling about dualism you know they're in trouble. I still worry that some people might be taken in by it though.
  17. Enid

    Enid Senior Member

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    Touched a very fundamental point there Rich - compartmentalisation- which dominates medicine at present (if allowed). ME breaks all their (and common sense - not just a collection of organs) everything it seems they are not taught.
  18. slayadragon

    slayadragon Senior Member

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    A few thoughts.

    1. I think there's way too much discussion in this illness about "the cause."

    The problem is that this causes people to get stuck on this topic, as if fixing the cause directly is the only way to treat the illness.

    A lot of times in life, figuring out what "the cause" is will not solve our problems. For instance, to my understanding, part of "the cause" of the economy becoming more problematic is the aging of the large number of people in the Baby Boomer cohort. Short of taking millions of people out and executing them, that's not a problem we can "fix. It's something that we now have to accept as a given and to work around.

    Maybe that's the case in this illness. Maybe things have changed now in ways that can't be fixed. Certainly the world is more toxic than it used to be. Maybe there's a new virus in the population. (Actually, the latter is certainly true -- there are _constantly_ new viruses in the population.)

    These are things that we should know about, and that should be studied in the hope of figuring out some sort of solution. But to think that the solution will involve addressing those things directly may be a bit too simplistic.

    2. If you want to figure out root causes, look to what's changed.

    Figuring out root causes won't necessarily mean the root causes are the answer. But at least it's a good start in terms of understanding what's going on.

    ME/CFS is a new disease. Yes, some people say it used to be present. But it's hard to make a case that it was present to this extent.

    I see two theories here for what has changed: 1) The world has become more toxic. 2) XMRV has emerged and has spread through the population (through contagion or vaccine or ticks or whatever).

    It very well be that the collapse of the glutathione system is at the root of the disease, and that it acts as an intermediary for many or most or all of the symptoms. Perhaps if we could fix that system, everything would be fine.

    But there is a reason that the glutathione system collapsed. And it can't possibly be because of previous stressors (like "stress"), or this disease would have emerged in the past.

    I've argued (citing literature) that biotoxins put stress on the methylation system. Other people have argued that viruses of various types put stress on it. Maybe there are other things that do it.

    It would be good to know "what changed," in the hope of altering it to the extent that we can. We can't eliminate all our toxic exposures, but perhaps we can reduce them. Maybe there are ways that we can address viruses as well.

    But perhaps, as Rich suggests, we can address the methylation system directly. I don't think that the methylation system can be the cause for why we're sick, if we're looking at what changed. But it very well may be the mechanism (or a large part of the mechanism) for why we are sick.

    And perhaps fixing it would make us not sick. Perhaps fixing it would allow us to be able to compensate for the toxic exposures that we receive, or to get all the new viruses we encounter under control.

    I like the word "mechanism" here though. Once you start using the word "cause" or "origin," people start to get annoyed. And I think that's not unreasonable, with a new disease, if there's been no change in what's being posited.

    The question is, can you identify the mechanisms that actually are doing something. Based on what I know, I do believe that the methylation problems have lots and lots of downstream effects. Depression or lack of exercise....not so much.

    In all of the literature in the history of exercise or mental health, there's nothing to suggest that those problems result in a) ME/CFS or b) the underlying problems in ME/CFS (such as methylation shutdown, heart disease, viral proliferation, etc. etc.). There have been lots and lots of people who have been stressed, depressed or out of shape in the history of the world, and there is nothing to make us think that being those things results in this disease. Thus, the idea that fixing those things will fix the disease makes no sense either.

    Are there lots of people in the world whose glutathone systems have collapsed, in the past? Does this always result in ME/CFS? It does seem like people who take that Vitamin Diagnostics (or Health Diagnostics or whatever that lab is called now) do really poorly on that test, if they have ME/CFS. Are there people who do poorly on it who don't have the disease? I cant believe I've never asked this question before, because it's kind of fundamental.

    Whoops, I'd better go. I have a lot more thoughts though. Maybe I'll come back to this.

    Best, Lisa
  19. SOC

    SOC Moderator and Senior Member

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    I'm beginning to think medical school needs to include a few basic engineering classes, lol! They certainly need to do a lot more analytical thinking.
  20. SOC

    SOC Moderator and Senior Member

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    Thank you for that, Rich. I've been saying for several years now that physicians look to me a lot more like highly skilled technicians than true professionals.

    I've been particularly frustrated over the past 3-4 years that I pay my PCP so much when I have to do all the analytical thinking for him. :rolleyes:

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