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The MEpedia page on Myalgic Encephalomyelitis

Discussion in 'MEpedia' started by JenB, Aug 11, 2018.

  1. JenB

    JenB Senior Member (Voting Rights)

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    Note, I moved all the additional information re: Ampligen to the treatments section. In the intro, I just wanted to convey that there no approved treatments, not to get into a discussion re: Ampligen (which is better left to the treatments section of this page or the Ampligen page itself). Unfortunately, I can't say "there are no approved treatments anywhere in the world" because that's technically not true.
     
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  2. Alvin

    Alvin Senior Member (Voting Rights)

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    True enough but its efficacy is not universal, for some people it apparently works but we would not all be functioning normally if it were approved everywhere.
    Its worth being careful not to give the impression that it will help most or all patients. Essentially we need to communicate that approval doesn't mean highly effective. We don't even know if its more effective then other drugs given off label.
     
    Last edited: Aug 12, 2018
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  3. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    That sounds like medical prose, @JenB, but it doesn't make much medical sense of what we know.

    We have no reason to call ME inflammatory. Some cytokine changes have been found but the most consistent one is probably TGFbeta, which is usually considered anti-inflammatory. And inflammatory should mean there is actual inflammation, not just some cytokines. In the great majority of people with ME there is no evidence of inflammation. Research into ME should start from the puzzle that there is no inflammation, yet people have symptoms of the sort associated with inflammation.

    I am not sure what physically and neurologically add to disabling. Physically suggests that we have a physical mechanism and we do not. Neurologically disabling suggests that there are local deficits in motor or sensory systems like in MS and these are not found in ME.

    I would personally not call ME a disease. Most people get the wrong idea from that. High blood pressure is not a disease. Diabetes is not a disease. These are patterns of abnormal physiology, and ME is of that sort.

    We do not know that ME affects the immune system. The data are conflicting and mostly negative. The same applies to a large extent to the other systems. A doctor or researcher reading this would be puzzled by these claims without any specific pathology. A patient is likely just to be frightened I guess. The WHO classification is of no interest to anyone.

    So that leaves us with viral triggers and epidemic and sporadic forms being pretty well documented. The caveat I would add since the account of the 1930s epidemic has been flagged up recently is that I am not at all sure we should assume these epidemics have much to do with what we call ME today. They may have been due to unusual viruses that died out.

    I realise I am not being very helpful, but this is exactly how the BPS people would like to see it written - it is obviously trying to justify something, to refute some hidden scepticism. As I said to Adrian above, an estate agent like me advises against this. I would offer to write something myself for just one page but am not sure that would be welcome!
     
  4. Alvin

    Alvin Senior Member (Voting Rights)

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    This is one i totally agree with you on

    This i also agree with, though i expect better refinement to get past this problem (but its still something to keep in mind).
     
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  5. Sasha

    Sasha Senior Member (Voting Rights)

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    I can't see why they would! :)

    According to what's in the PACE paper, the BPS bunch are claiming that the false beliefs are based on faulty logic (or perhaps faulty assumptions). In their model, patients are taking their experience (stiffness and discomfort when trying to increase their activity) and concluding that that experience must be due to ongoing disease. The patients are failing to realise that these are symptoms to be expected when you are deconditioned.

    Let's put aside that stiffness and discomfort aren't the symptoms that PWME get when we increase our activity, and that it's ridiculous to suppose that we don't know that if we become active after much inactivity we can expect a bit of stiffness, etc. The BPS crew are claiming that our error is in failing to recognise stiffness and discomfort as what happens when we increase activity after inactivity, and it's that mistake that constitutes our 'illness'.

    I can't see how much further from 'biological' this could be. This would not be our biology driving our thoughts in the way that you appear to mean.
     
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  6. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    So what is driving thoughts if not biology? Magic dust?

    I realise that you are expressing a common perception of a distinction but scientists are supposed to treat all causation as physical and, for life, biological.

    You are probably also aware that since retiring from medicine I have spent much of my time reading and writing on philosophy of mind and metaphysics, not to mention logic. What the BPS people describe looks like inductive reasoning, not deduction by logic. And the fact that they think they have to use 'cognitive strategies' (Wessely and Chalder 1989) to dispel these ideas indicates that the beliefs are not just mistaken but clung to in an irrational way. (Their whole output is muddled bullshit so there is probably no fact of the matter what they think.)

    I absolutely agree that there is an obvious distinction to be made but that does not alter the fact that using 'biological' is walking into a well laid trap.
     
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  7. Trish

    Trish Moderator Staff Member

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    In the case of Michael Sharpe, I think that might be the case. Our problem in ME is that we have perfectly rational thoughts about our symptoms and the need to stay within our energy envelope. It is the psychiatrists that have the irrational thoughts that need changing.
     
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  8. Sasha

    Sasha Senior Member (Voting Rights)

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    As I've said, I agree that thoughts are coming out of a biological brain and are therefore based on biology, not magic dust.

    I don't have the impression that this is what a lot of medics are doing. Certainly there seem to be thousands upon thousands going for 'all in the mind' as an explanation of symptoms that they can't find a clear biological cause for.

    I realise also that I'm expressing a common perception of a distinction and I'm sorry I haven't been able to make any sense of your counterarguments! :)

    Yep, all the more embarrassing for me... :)

    In conventional CBT, I thought the idea was to encourage people to experiment and observe that their ideas aren't based in fact as they thought - so CBT isn't a weird strategy in a pejorative sense but a structured way of getting people to test their assumptions. (The irony being that the BPS crew fail to turn this strategy upon themselves.)

    TBH I think we're damned if we do and damned if we don't, and probably more damned if we don't.
     
  9. Adrian

    Adrian Administrator Staff Member

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    Why not just admit we haven't a clue and say so and then describe the symptoms that are typically used to define ME in the various definitions. You may be able to wrap a sentence that includes various possibilities but I feel that would just be misleading in terms of the knowledge (or lack of) we have.

    I think cause and effect can be confused to me there may be a trigger event but the cause is the thing that keeps the disease going (i.e. a cycle or a process that slips into an alternative equilibrium or whatever)
     
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  10. mango

    mango Senior Member (Voting Rights)

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    Please do, I'd love to read it! I find your "devil's advocate comments" very interesting and helpful -- and hugely frustrating, too :) Even if maybe it doesn't end up on MEpedia, it could still be very helpful in so many other contexts. I love stuff that forces me to think about things in completely new ways, find new angles and help me understand the different ways people interpret things, clarify the different meanings words and expressions have to different people and in different context etc.
     
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  11. Alvin

    Alvin Senior Member (Voting Rights)

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  12. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Certainly not for the BPS people.

    I guess this is still just what I am trying to say - that to insist ME is biological is only relevant if you want to counter a spurious lazy way of thinking and encyclopaedias do not normally kick off doing that - they stick to what makes sense. It is a bit like saying that, contrary to what you might hear thunder is not due to the angels moving the furniture around.

    I don't see any danger in being damned if you leave it out and just say what is known about ME. But it might also be useful to say that although causation is not understood it cannot be put down to people have unhelpful beliefs about having ME because lots of people with very typical ME never come to hear of a name for their illness until several years on. It makes sense to me to point things like that out because it is a widespread public perception that ME is just thinking you have ME (a fag end Wessely picked up). There is no need to promote the BPS brigade by bringing in their jargon. I think part of the problem is that certain high profile ME advocates have been doing that for so long that people think it is the way to tackle it. But it hasn't worked so well.
     
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  13. Sasha

    Sasha Senior Member (Voting Rights)

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    I think it's much wider than that. There are huge numbers of reports of patients with ME being dismissed as not really being ill by doctors and consultants who have no connection with psychiatry.

    The mainstream view isn't that thunder is due to angels, but the mainstream view does seem to be that ME is in the patients' heads. The two situations are opposites.

    I don't think that's the public perception - I've seen no indication that Wessely's idea caught on (I think it was something that he said but I have no sense that he picked it up from anywhere - I'd always assumed it originated with him). My impression is that people think that patients are just tired all the time due to 'stress' and imagine that they have a disease - the notion being all in their minds - and that they glom onto the ME label, which of course is just being 'tired all the time'.

    I don't think that 'biological' is BPS jargon. I'm honestly surprised that doctors and scientists would think that opinions (which is what we're talking about, when PWME are claimed to have these 'false illness beliefs') are 'biological'. Maybe I'm just not looking at the right literature. Is this part of clinical training? Because if it's not, I would have thought that most clinicians would think like I'm thinking (that is, as a person without philosophical training).

    We don't have a control condition, though! :)
     
    Last edited: Aug 13, 2018
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  14. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    But that isn't what we were discussing, @Sasha. We are discussing whether or not doctors think thoughts are biological. I entirely agree that most physicians consider patients' symptoms to be caused by false beliefs. But if you ask them whether those beliefs are biological causes they would say yes, because all causes in brains are biological. Even the originators of the term biopsychosocial would probably admit that the psycho and the social are part of biology. It is only the ME-BPS crowd who come up with this mind-brain interaction nonsense trying to score clever points about Cartesian dualism not realising that it is they that are propounding so-called Cartesian dualism.

    At the 2014 CMRC conference after White had stood up and insisted that ME was biopsychosocial, Maria Fitzgerald, who is a neuroscientist, pointedly said that it is 'all biological'. Throughout the twentieth century all doctors have been taught at medical school that the only form of causation in the brain is physical/biological. Anyone who wanted to argue for something else would be told not to be so medieval. My wife and I both experienced this at medical school. My wife is a doctor with no particular interest in ME or psychiatry or neurology and for her it is obvious that thoughts are biological. She was taught that by Sir Andrew Huxley, who worked out the way electrical currents pass down nerves.

    One might argue that if Maria Fitzgerald stands up and says its all biological then that is fair to put in an encyclopaedia article. But she was not meaning that ME specifically was biological. She was responding to the implication by White that you could claim that there was no longer any biology going on, just psychology, on the basis that whatever the illness brain events are just biology. She was not denying that thoughts might be involved in causing symptoms.

    So one concern is that if a text insists ME is biological that suggests that it is written by someone who does not appreciate what that term means to trained doctors and scientists. It is redundant.

    The second concern is that if we are wanting to stick to facts and evidence then the question arises as to what is the basis for the claim that ME is 'biological' if by that it is meant that symptoms are not caused by unhelpful beliefs. Readers are likely to assume that there must be some evidence from scientific data. But so far nothing is established. The evidence that ME is not due to unhelpful beliefs comes from taking a careful history from the patient and seeing that their story makes this totally implausible.

    Isn't that pretty much what Wessely was saying?

    I think maybe we do. From 2010 to 2015 in the UK the high profile organised advocacy consisted largely of insisting that ME was a biological disease affecting multiple organ systems with inflammation etc. Margaret Mar's Lords debate fell flat. Malcom Hooper's extended documents were dismissed. Nothing happened. Then around 2015 the emphasis shifted to quality of evidence, with Tom, Alem, Keith, Carolyn Wilshire etc. Since then there has at least been some sign of things changing. The sequence of events in the US may have been rather different.
     
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  15. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  16. Sasha

    Sasha Senior Member (Voting Rights)

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    Originally, we were discussing this:

    I have always agreed with you in this discussion that thoughts arise through a biological process and so I agree with you in that sense that 'thoughts are biological'.

    That's not the issue. The issue is whether ME is a biological illness, and that's where we don't seem to agreeing.

    Given that all thoughts and human actions arise through biology, you could argue that not just all disease but all human activity is biological but I don't think that makes sense in any useful way. Suppose I step on a nail because I was distracted by a loud noise (my biology priming me to attend to it). I go to the hospital because a nail has caused a hole in my foot, not because my being distracted has caused a nail in my foot.

    Interesting - I didn't know that.

    And this is our problem - PWME don't believe that our thoughts are involved in causing our symptoms and its the perception that they are that is so damaging to us. Can you suggest some language that would be understood by doctors, researchers, patients and the public alike that would tackle this issue? I may be medieval but I think I'm in the overwhelming majority of non-clinical people.

    This is a separate issue and a more important one.

    What is it about our stories that makes this seem totally implausible? Because clearly, the BPS crew have seen thousands of patients between them and have come to a different conclusion. Does this process of taking a history need systematising, or do things about it need to be brought to wider attention?

    I don't think I expressed myself well there but I've run out of steam, sorry! o_O

    But the increased rejection of PACE has been accompanied by assertions, with the IOM report being used to back them up, that ME is biological. So I don't think this is a control condition - I think it's a sequence of events influenced by what has gone before.
     
  17. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I think we have probably got as far as we can in trying to agree @Sasha. My devil's advocate position may be overstated but my gut feeling is that most medical people will react to these words much in the same way that I do.

    This is a more interesting issue. I have come to see that the BPS analysis is totally implausible because i have listened to PWME talking about their illnesses amongst themselves.

    I think part of the reason psychiatrists have come to the analysis they have is because they are psychiatrists and after having been taught biology for five years they then learn mumbo-jumbo for the rest of their lives. They join a group whose traditional ethos and domain is exerting power over people through persuading them they are not thinking right.

    But I think the analysis is also fed by the way the doctor-patient interview unfolds. The doctor asks the questions and provides the explanations. Out of the clinic room things are different. I often learnt a lot when I chanced to meet my arthritis patients in the street - maybe noticing them struggling along the pavement in front of me, ... obviously someone with arthritis - oh, it is Mrs Bissett, she really does need getting her hip done now rather than later... I had not realised just how exhausted she is getting.

    It is very easy for doctors to pass off what patients say as part of a patient-playing game in clinic. (There are a few people who do play such games, although not that many.) But it makes no sense on patient forums for people to be playing games. I also get to meet lots of PWME at charities and committees and outside the clinic environment it becomes apparent that they are motivated to do as much as they possibly can within their limits.

    I think it would be hard to prove that there are no people with unhelpful beliefs about their ME. There are people who contribute to the forums who have some pretty implausible beliefs, even if they may not be in any significant sense unhelpful. But what seems to be undeniable is that there are lots and lots of PWME who have no particular beliefs about their illness, who are happy to accept that nobody has any idea what ME is or what causes the symptoms, but are still severely restricted in what they can cope with in terms of activity.

    In fact, strangely, Wessely acknowledged the existence of such people when he said ME was just think you have ME. He compared this with people with chronic fatigue syndrome and said that the two hardly overlapped at all. But then once the CBT trials started up the two seemed to get merged into the same category of unhelpful belief.
     
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  18. chrisb

    chrisb Senior Member (Voting Rights)

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    From the early papers it is not even clear that they thought the symptoms were caused by the patients beliefs. I saw something on the lines that get and cbt might not improve symptoms, but they were supposed to improve the degree of function. (What a difficult word "function" is.) Somewhere over the years this was forgotten.
     
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  19. Sasha

    Sasha Senior Member (Voting Rights)

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    This is very interesting but it seems to rest on observing patients when they don't feel observed by a doctor and noticing that they're doing the most that they're able to do. But I don't think the BPS crew are saying that we aren't doing the most that we're able to do - just that we're mistaken about the limit.

    I have the feeling I'm missing something - I think it's key to understand what convinces a doctor that there's a biological/non-belief-driven illness rather than a belief-driven one.

    Whatever it is, we need to identify and export it.
     
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  20. Trish

    Trish Moderator Staff Member

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    Fascinating discussion. Getting back to the wording:

    Could a re-wording of the first sentence go something like:

    ''Myalgic Encephalomyelitis is a chronic physically and cognitively disabling disease with symptoms in multiple bodily systems. ''

    Even that is a problem. Is it a disease, a condition, a syndrome, an illness, ...
    And is it a single disease or a group of diseases,

    And should we include 'physical and cognitive' when some pwME are disabled largely physically and hardly at all cognitively, and some the reverse....

    And should we use the word 'cognitive' or 'neurogical' which includes a wider spectrum of symptoms, not just cognitive...

    Maybe it's better to simply say ''...is a chronic disabling condition...''
    Even adding at that stage ''... with many definitions...'' and referring to a page where the definitions are listed in detail.
     
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