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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Dr. Enlander tackles a poor paper "Fear of movement and avoidance behaviour..."

Discussion in 'Latest ME/CFS Research' started by snowathlete, May 31, 2013.

  1. taniaaust1

    taniaaust1

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    Many years ago I wrote to a journal in regards to a CFS study and had my letter published.. for several years after, to my surprise, II found medical people actually quoting me in their own medical stuff and including parts of my comment (in a further journal article in a different journal I found my name, I became one of the references, that happened more then once to that response of mine (so my words I know reached at least reached three different journal publications).

    I dont think no one realised I wasnt a doctor, I guess I must of done a good job with my reply, I was refered somewhere in a medical journal referencing me as a specialist in the field (It was kind of awesome for my response to be quoted in medical journal in other studies haha).

    So yeah.. I do think patients if they are able to formulate good replies can certainly help to present different or more balanced views in journals.... write the response as if you are another medical person speaking with authority (make references where needed) and you just never know where your reply will end up appearing.
     
  2. Firestormm

    Firestormm Guest

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    Just been alterted that Prohealth have published this 'fear of movement' paper. Someone might like to tell them about the Doctor's letter of reply. I'm not a member over there. Didn't even know it was a forum! :oops:
     
  3. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    The same applies to politics. A lot of the world's problems are caused by politicians doing a wrong thing (often a drastically-wrong thing) to appease those who demand that 'something' be done.

    They too keep embracing the wrong answer about ME in the absence of a really clear-cut right one.

    In my email to my MP asking him to call for a Select Committee enquiry into ME, I stated what I thought should be done for people with ME, but of course it is complicated compared with 'CBT and GET' which is short and snappy.
     
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  4. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    It's great that this happened, but the flipside is that mad, dangerous ideas might get published and referenced too if they don't check people's credentials. With the internet, such ideas could easily take off, especially if they are in an academic journal.
     
  5. snowathlete

    snowathlete

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    It's also easy to discredit an individual, particularly patients like us; easier than discrediting doctors and mulitiple people
     
  6. alex3619

    alex3619 Senior Member

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    I am not sure this is a valid concern. If a comment is correct, or useful, it doesn't matter who said it. Similarly if an expert says something bonkers its still bonkers - being an expert is irrelevant. What does matter is that a comment or the qualifications of the commentator are not misrepresented.
     
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  7. user9876

    user9876 Senior Member

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    Just because people are academics (and their credentials check out) doesn't stop them from having mad and dangerous ideas.
     
  8. Bob

    Bob

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    Who cares about credentials? It's the science that counts. Those who promote GET, as a restorative treatment for ME, are not lacking in credentials. They're lacking in good science.
     
  9. user9876

    user9876 Senior Member

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    It's prehaps their credentials that allow them to publish with very little challenge via peer review. If the papers came from a different people or weren't reviewed by others in the psychosomatic camp then I would expect them to have a much harder time.
     
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  10. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    WE know that, but the general public don't yet seem to have cottoned on to the fact that many 'experts' are idiots, and they are also likely to assume that anything in an academic journal is correct. Mind you, many people are also Crazy Mirandas and believe everything they read!
     
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  11. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    True, but a quick internet search will soon reveal that their specialism is psychiatry/psychology and not medical science.
     
  12. taniaaust1

    taniaaust1

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    Published replies cant be any more mad and dangerous then the current ones the psych profession put out making it sound like all we all need to do is get over our illness behaviours and do GET and CBT to get better.
     
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  13. Nancy Blake

    Nancy Blake

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    Hi, Bob, thanks for the reference to this thread. If we are discussing nonsense, then the article that Dr. Enlander criticised is a perfect example. Having stated clearly that exercise does 'exacerbate symptoms' - instead of drawing the obvious conclusion that patients should therefore avoid exercise, it goes on to discuss ways of treating the, apparently, pathological, condition of avoiding exercise. (Would this work with people who have peanut allergies? Help them get over their 'peanut avoidance behaviour'?) This thread expresses the hope that, as we are all known to be rational human beings, the weight of evidence will eventually persuade the Wessely lot, the general public, the medical community, that ME is actually a physiological, not a psychological illness. I think this optimism is unjustified... More examples of how things actually work: On page 6 of the PACE Report, dropping the physical measurement, by actometer, of subjects' activities, which was used in the pilot study but not in the main study, is justified by reference to an article by Wiborg et al - which, according the the PACE author, showed a 'discrepancy' between physical measurements and 'self-reports' of increases in activity. This was cited as supporting the PACE researchers' decision to drop the physical measurement and rely only on self-reports. But the Wiborg paper stated that self-reports exaggerated levels of physical activity - a feature not mentioned in the PACE article. Is it unreasonable to speculate that the self-reports would be more likely to support the idea that CBT and GET produced improvements in levels of physical, and that that is why the physical measurement by actometer was dropped? It was shortly after several cogent criticisms of the PACE results were published in Lancet that Professor Wessely started complaining about death threats. It saved him from having to reply to these well-founded criticisms. Wessely knows extremely well how to manage the media - he could give lessons to PR people! The Hanlon article simply recreates that smokescreen of feeling sorry for the poor man, attacked by these unscientific patient terrorists - Hanlon states that Wessely was been doing research into the causes of ME. He wasn't - the PACE Trial was a comparison of treatment modalities, not research into the causes of ME. He is also said to have been knighted for services to veterans. These 'services' consist of having supported psychiatric treatment, along similar lines to that for ME, for veterans suffering from Gulf War Syndrome - they need psychiatric services in much the same way that ME sufferers need psychiatric services....(like a fish needs a bicycle). The research he did which 'proved' ('scientifically', naturally) that Gulf War Syndrome wasn't a physical illness was, according to the article I read, conducted at Porton Down, giving marmosets all the same injections that the Gulf War soldiers were given, and apparently the marmosets didn't get Gulf War Syndrome. (It doesn't say how they found this out - how can you tell whether a marmoset has Gulf War Syndrome? Give them a questionnaire?) Just to go back a moment to the 'science' involved in the PACE Report - according to an article by Professor Wessely, 'How to tell the Zebras from the Horses', ME/CFS is a consequence of people who have had a viral illness then focussing on very slight symptoms, getting very worried about them, avoiding exercise, and persisting in the false belief that they have a physical illness. If ME/CFS is caused by suggestible people forming false beliefs about their illness, how can they conclude that the 'self reports' of these individuals will be more scientifically reliable than physical measurements of activity? And so on and so on....
     
  14. snowathlete

    snowathlete

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    I personally don't think there is any chance of convincing the Wesley lot. For some of them, I dont think the issue is about convinging, they already know, but they benefit from the status quo.
    I think it is possible to change perceptions in the general population and parts of the medical establishment though, and I think it is a combined effort by researchers, clinicians, charties, advocates and the patient population. This kind of effort is just one part of that, but I think its a valuable one.

    Wesley etc are of course going to respond in the way that is most effective for their aims, and that means anything which detracts from the facts. This tactic wont be going away...ever, probably. I think studies like PACE will get less attention and funding and eventaully will go away though...but not just yet.

    You're right, of course about all the flaws in the PACE trial, and some people do realise this now. More than if we would have not challenged it in journals etc.

    In the meantime the more frequently people who promote his views are faced with factual evidence appearing in publications, the more those facts will get through to people and the less impact their 'smoke screens' will have.
    It's not going to be an easy ride all of a sudden - not yet at least, but that just makes it more important to promote the actual facts to people in these ways.
     
  15. smurf

    smurf

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    This paper is offensive and harks back to a very dark period in the field of psychiatry. MS, Alzheimer's, ALS and a host of other neurological illnesses used to reside under the umbrella of psychiatry. There are horrid stories of MS patients being pushed off chairs to see if they could will themselves to walk. Perhaps, if Wesley had been around back then, he would have been one of those doing the pushing. As they say, if we forget history we are doomed to repeat it. That has certainly been the case with ME/CFS/Fibro and the obsession with GET/CBT and now this "fear of movement" nonsense. My hope and expectation is that the biopsychosocial school that currently dominates public opinion will soon go the way of the Dodo and that as with MS, we will end up under the umbrella of Neuro-immunology. With ever more sophisticated immune and whole systems studies under way, medical paradigms are starting to shift very much to our benefit. That is not to say that the biopsychosocial quacks won't go shouting and screaming and won't find some way of spinning the immunological findings as being of psychological origin, rather than the other way around. However, as ME/CFS finally enters the realm of biological data driven science, the quacks will inevitably end up in the dustbin of history. Of course, they will have left a twenty year long trail of devastation and suffering for those of us who have had this illness for several decades, but I am confident things will get much better, relatively soon, for the younger ME/CFS/Lyme/Fibro/GWS sufferers among us. Psychiatry does have a role to play in this illness but only in a supportive capacity, for those whole lives have been turned upside down and who feel they need the support of neuro-pharmacologic agents, and not as a means of getting to understand causality and pathology. Results from the Mella and Fluge trials have made researchers and drug companies, who drive most of the research nowadays, take notice. That is a very big deal for us. Now, our role as patients is to educate all those clinicians who are receptive but misinformed.
     
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  16. alex3619

    alex3619 Senior Member

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    smurf, not only do I agree with you, but you are using some of my pet phrases including "way of the dodo". I am making very much the same arguments as you do. The history of psychiatry is the history of unreason and patient abuse. For all the good they do, they have done more harm to the public in historical terms than most wars except the two world wars. Its incredible how much harm was done, and yet its all forgotten.

    Hmm, on second thought one thing I disagree with to a small extent, but what you wrote implies this might just be a matter of emphasis. The psychogenic babble will not go away. Once they get resoundingly discredited with respect to ME, they will just focus more on any other disease that is misunderstood. Thats the history. So we will get rid of them for ME, but they will still go on to abuse others.
     
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  17. Richie

    Richie

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    My first post on here, so hello to all.
    I have had a diagnosis of CFS/ME/FM since 1998 and consider myself to have been diagnosable since 1996. Variety of probs prior to that.
    I would like to say that whereas it is very important for physicians to recognise and treat 2e depression in CFS/ME/FM, and for physicians to recognise that these conditions are not a form of primary depression, the depression of CFS/ME/FM is not necessarily always secondary and to be equated with that of "any other chronic disease". This is an oversimplification imo.
    A variety of neuroimmune illnesses may present with depressive aspects as part of the organic complex, due e.g. to changes in tryptophan use in immune activated states.
    It is not simply a matter of people being depressed because they have lost their health, jobs, friends, families etc.,Though I know from experience that this is a major factor, it is not good biology to ignore the impact of immune activation on mental health.
    Given the variety of bizaare symptoms/reactions we suffer to a variety of stimuli whether external or in our own bio-terrain, is it not also possible that some depression may arise from our disordered neural networks as just one of many odd responses to inputs that would not be noxious to healthy networks?
    I do feel that the "all the depression is 2e" argument is questionable.
     
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  18. Shell

    Shell Senior Member

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    I think neurologists are keeping the dodo alive through their unbelievable bone idle approach. They are far too willing to shove neurological problems off onto psychs.
    On top of that Wessley has been handsomely rewarded for his politically and financially astute approach. Insurance companies and Govts are very happy not to fund research, treatment and care.
     
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  19. Firestormm

    Firestormm Guest

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    Seems to me that neurologists (generally - there are some 'good' ones let's not forget), require someone to give them not only a map but also bloody directions! I'm talking about clinicians here. If they happen to pick up on something - a 'sign' - then you might get some action; but if it don't 'fit' then they won't as a rule 'go there'.

    Put ME on the map - with directions - and these clinicians will be over the moon and jumping for joy. As would we of course. Just back from a hospital appointment with a Neurologist. Kinda felt like I was not only drawing him a map but providing the directions. I am feeling a little - how shall I put it? - pissed.

    I mean I got what I wanted but it's just trying to explain - to remember - and going through the hoops every damn time with every damn 'expert' - same thing every single time: despite specific referrals from other 'experts'....

    Ignore me. Back to normal tomorrow :)
     
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  20. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Hi, Richie.

    I'm not sure what you mean by '2e' but I do agree that psychological states can be influenced by biology, and am coming increasingly to the view that this may very often be the case. For example, I have suffered from anxiety and poor sleep all my life, but since adapting my diet last year along the lines of what leaky gut/ME research has shown, my anxiety is substantially reduced and my sleep better. I wish I had known about it long ago - life could have been a lot easier!
     
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