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Journal of Medical Ethics - Blog: It’s Time to Pay Attention to “Chronic Fatigue Syndrome” (2019) O'Leary

Discussion in 'General ME/CFS News' started by Cheshire, Mar 5, 2019.

  1. Medfeb

    Medfeb Senior Member (Voting Rights)

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    Not disputing the reality of what you say. But what's remarkable to me is that the medical community requires proof of mechanism and a biomarker to reverse a psychosomatic theory that they accepted without any valid scientific evidence to begin with.

    Per Dalen, a Swedish psychiatrist, noted that in the case of diagnoses like somatoform illness, there is a different standard of scientific proof used. He said, “Many doctors would never let themselves be caught with woolly ideas about the possible causes of cancer, multiple sclerosis, or cardiovascular diseases. But just mention the word somatization, and they will feel free to engage in uncritical speculation.”
    http://www.art-bin.com/art/dalen_en.html

    In the case of ME, IMO, there is substantial evidence for biopathophysiology in a number of systems and that should be enough to call into question the unfounded BPS theory even if you dont have proof for the ultimate cause or validated biomarkers.
     
  2. Alvin

    Alvin Senior Member (Voting Rights)

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    Very well put
    Your totally on fire today with all your insightful posts.
     
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  3. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I agree it indicates a failure of consistent thinking. But I don't think it should be so surprising. I don't actually think that most of the medical community have bought in to a psychosomatic theory. As we have already discussed it is not clear that the BPS approach is actually psychosomatic. It is closer to 'malingering in the recovery phase' or something... and its vagueness is what has attracted doctors.

    When I criticised the BPS approach locally the main defence was that 'the patients like it'! That is to say doctors have taken to the BPS approach because they think it provides them with a nice double-speak that reassures the patient that the doctor understands their illness in depth while expressing, in medical circles, the popular prejudice that there isn't actually much wrong with these people any more. It is what O Mio Bambino Caro was for Pavarotti - a wonderful vehicle for demonstrating paternalistic 'laying on of hands' clinical skill. Except that nobody noticed that most patients saw straight through it (I suspect).

    In other words the BPS label allowed doctors to maintain the popular prejudice that ME/CFS is feeble-mindedness. They didn't stop to think whether there was a real theory or not.

    And, after all, in every other disease doctors expect to have some sort of evidence of a mechanism, or at least some objective pathology to commit themselves to recognising it.

    Per Dalen seems to make sense.

    Out of interest, what would you give as the three most convincing bits of evidence for pathophysiology? And do you think they hang together in a way that would make sense in terms of a mechanism?
     
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  4. Daisybell

    Daisybell Moderator Staff Member

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    I think the strongest evidence for pathophysiology currently is that patients all around the world describe their symptoms in similar terms... whether or not they belong to Internet forums or support groups. There are degrees of difficulty but the constellation of symptoms are remarkably similar. Many of us would have expressed some hesitancy about the reality of ME before becoming ill. Most of us would have tried to deny the illness for some time.

    I’m not sure that there is anything that really holds up to rigorous scrutiny for evidence. Perhaps the 2 day exercise testing will, but I’m not sure it does yet. It seems too variable at the moment, with different techniques and timeframes.
     
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  5. Alvin

    Alvin Senior Member (Voting Rights)

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    If we had a mechanism we would all be cheering, especially the researchers.
    That said we have boatloads of evidence but a lot of gaps and no unified theory.
    I believe @JaimeS put together a document of the seminal studies and i personally found the pyruvate dehydrogenase paper from Fluge/Mella to be very fascinating
    Also someone had posted this, an interesting summary of current at the time knowledge
    http://me-ireland.com/Review.pdf
     
  6. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    That's my take too.
     
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  7. rvallee

    rvallee Senior Member (Voting Rights)

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    Historically, where there are sick people there is disease. About 90% (very conservatively) of the time that's how it turned out, the other 10% or so is made up of undiagnosed patients from that 90% and under-researched diseases, where the "mystery" is a direct outcome of deliberate choices not to fund research, aka a self-fulfilling prophecy. Even in cases where people made confident models for psychological causes, a disease was eventually identified in the vast majority of cases.

    From that it's just common sense, it almost always happens this way. In some cases prior, it happened almost exactly the same way. The framing and handling of peptic ulcers, down to almost identical models and descriptions to loopy cycles of thoughts-and-symptoms, were almost identical to the model of ME. The differences are cosmetic and superficial, mostly symbolic.

    There is no corresponding trend the other way. At this point it's like holding to an alternative theory of gravity because some day, some thing or another, may possibly not fall down as expected. Sure, it's possible, but it literally never happened.

    Personally, I'm gonna go ahead and expect that the thing that happened 90%+ of the time is more likely. I know using objective things like maths is considered unfair to psychosocial researchers, but I'll accept the vexatious label gladly on this case.
     
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  8. Medfeb

    Medfeb Senior Member (Voting Rights)

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    Good question. I'm at a meeting all week so cant give a full response but for a start...
    the impaired energy metabolism evidence - the 2 day CPET, the metabolomic studies, etc - is quite convincing to me as it reflects and helps explain the patient experience of PEM and it also could help account in part for the range of systems affected. And the 2-day CPET demonstrates that the response is different than that seen in deconditioned patients and is accepted in US disability rulings as objective evidence of physical impairment.

    For evidence of dysfunction in other systems, see this report by US patient and PHD immunologist Rochelle Joslyn - and this is just 2018 research.
    ""

    This is certainly more than just common symptoms across patients.

    Regarding whether they hand together in terms of a mechanism - if by that you mean can we articulate a cohesive description of how all these systems are interacting and what's driving what, then I dont think we can do that yet. But IMO, it feels like an object starting to emerging from a dense fog - you can't quite say what it is but we know its there.

    And to Per Dalen's point, the amount of replicated and preliminary evidence that we have of biological impairment affecting multiple body systems is much more substantial than the evidence used to justify the BPS model for this disease. Sharpe's presentation at the 1992 Ciba conference was little more than "let's imagine it could work this way." And then he cooked his patient selection methods and study conduct methods to prove his imagination was reality.
     
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  9. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    There is another facet to this problem. Once a patient has a diagnosis suggesting they have a mental illness of some kind on their records it dramatically increases the level of proof doctors want for any future diagnosis to be of biological origin. And the inevitable result of this is detailed in this article :

    Many mental illnesses reduce life expectancy more than heavy smoking
     
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  10. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    That isn't quite what I mean. What I mean is 'can we articulate a cohesive candidate description of how all these systems might be interacting and what's driving what'. And for me you have to be able to do that to claim you are getting anywhere. It is the rule that I always used for theories of RA and it worked well. If you have a set of ideas about mechanistic steps and you cannot find any plausible candidate way to link them together you have not started to get a meaningful model. You don't need to know all the steps in the mechanism. You probably never will. But you need to be confident that there are plausible candidates for missing steps. At the moment I have not seen anyone fit everything together in this sort of way. Mostly people slip into handwaving comments about neuroinflammation or some such.

    One needs to be able to fit ideas about specific steps into the epidemiological framework, time course and other broad parameters and so far I struggle to see how we can incorporate the recent data findings into that.
     
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  11. Mithriel

    Mithriel Senior Member (Voting Rights)

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    This sums up what feels unethical and what makes us so suspicious of medicine. This sort of patronising attitude where the patients are left with one impression while doctors have quietly written us off is what we believe is happening but no one in authority will admit it. So we lose twice, by being talked down to and then by being dismissed as whingers.
     
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  12. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    MS seems to have an affinity with Galileo as he retweeted this:


    ever the humble scientist
     
  13. Mithriel

    Mithriel Senior Member (Voting Rights)

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    The thing about ME which is unique is that energy production is impaired on a cellular level. Respiration is a basic aspect of life and is very complicated with a large number of steps and interactions from inhaling oxygen to the blood circulation both of which go wrong frequently. It is not a stretch to think that the biochemical machinery of the cell can also go wrong so that ATP can't get where it is needed.

    If there is a general shortage of ATP there may be enough for everyday function but when any system needs revved up it will be able do its job efficiently so it will look as if it is diseased but when tested (especially at rest) it will function normally. In fact, if a defect in producing adequate energy is the problem we would expect every test to be normal unless by coincidence it is done at a specific time when the system is in need.

    It is as if the wiring of a house is dodgy, everything you plug in will work fine if you test it individually but they won't work properly if they are all plugged in.

    Before HIV no one considered that the system fighting disease could actually be the part that got infected. There are thousands, millions of us round the world who have a similar set of symptoms, we need imagination and research to find what is going wrong and we are not getting it. If it had not been for the hepatitis study and the money poured in would all the disparate illnesses have been put together to discover HIV?
     
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  14. Medfeb

    Medfeb Senior Member (Voting Rights)

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    I understand what you are saying and agree that that's what we need. But we are not alone in needing that. Other diseases are in the same boat but dont get treated as a psychological/deconditioning problem.

    In the meantime, we have significant evidence of biopathology impacting multiple systems. And the evidence is - or at least in my opinion, should be - enough to discredit wooly-headed BPS disease theories and treatment recommendations. It certainly seems to have been enough for Steve Olsen at Kaiser and the IOM panel.

    Just my opinion, but in the face of this evidence of biopathology across systems, continuing to use the BPS theory and treatment recommendations to frame clinical care for people with ME is of questionable medical ethicality and is one that the medical community needs to carefully examine.
     
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