Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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Fear of Exercise - actually its rational...er - didnt mean it...

Discussion in 'General ME/CFS News' started by cfsStevew, Feb 5, 2015.

  1. cfsStevew

    cfsStevew

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    Not sure if this has been posted yet but Trudie Chalder has come out, no doubt because of the reaction to the PACE mediation publications, and said actually the fear of exercise 'is understandable...' and admitted that exercise increases symptoms...

    http://niceguidelines.blogspot.co.uk/2015/02/pace-trial-authors-admit-in-bmj.html

    So the question is - why submit the publication to the Science and Media Centre for distribution into the National Press - and further stigmatise ME patients? If its understandable surely its just the same as any other serious physical illness where people are worried about doing exercise...

    It just doesnt make sense...I think we all know by now anyway that the main model of the Wessely school has been that ME is a false illness belief somatization disorder...
     
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  2. Scarecrow

    Scarecrow Revolting Peasant

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    They're a slippery lot, aren't they?

    It's just another facet of their mind games. Pathetic, really.

    An attempt to lure us in and then spring the same sham treatments on us.
     
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  3. cfsStevew

    cfsStevew

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    I mean - they genuinely are slippery and its quite serious considering their ideas have been put into government policy...it reminds me of the Trudie Chalder video telling doctors how to nod nicely whilst directing patients to a psychiatrist...
     
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  4. Antares in NYC

    Antares in NYC Senior Member

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    I think these people may lack a heart, but they are not stupid and they can see the writing on the wall.

    In recent years there's been a steady trickle of genuine, unquestionable scientific studies (Stanford, Montoya, Lipkin, Chia, etc) that are showing this is a pretty serious physical illness, despite any funding for research. Every day more studies come out pointing at serious messed up biological processes going on in us, and I think the Chalders of the world are starting to talk from both sides of their mouths now. It's what we here in the States call a good ol' C.Y.A. (Cover You A**) strategy.

    In time, their fraudulent quackery will be exposed. I think the recent avalanche of nasty articles fed to the UK press defending PACE and slandering us as just lazy slobs afraid of exercise is just a symptom of desperation on the part of some of these quacks. Don't forget, as many have documented ad nauseam in these forums, they are quite masterful at public relations, and excel at feeding a steady stream of bullcrap to the press.

    Notice how this sudden slew of articles in the uk press comes a few weeks after the crucial MRI studies from Dr. Montoya, which I think may have been the starting point to turn the tide in public opinion. I know, baby steps, but that study was covered by all major media outlets in the USA, and the essence of the article was: "CFS is real, MRI's show major degenerative processes in the brains of patients." It's actually pretty powerful and indisputable stuff.

    They are nervous their house of cards is crumbling. Wait and see.
     
    Last edited: Feb 5, 2015
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  5. cfsStevew

    cfsStevew

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    Its not helping their case because the condemnations to their publications are getting louder and more comprehensive every time...

    What is even worse IMO is the shame bought upon the medical system which facilitates their publication, doesnt respond to legitimate and valid criticisms to the trials, and maintains the status quo demonstrating that power and status wins over science and listening to patients.
     
  6. IreneF

    IreneF Senior Member

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    The response of the NHS is going to be that these studies haven't been replicated, and none of them sufficiently demonstrate anything that can effectively treat patients. The only large study is the PACE trial, so it's either CBT & GET or nothing.

    Plus the NHS doesn't want to pay for expensive treatments. And apparently psychiatric disability is cheaper than medical disability, so there is pressure from that direction.

    Progress is coming from outside the UK. Norway, Australia, and the US is where the work is being done, so there's the "not invented here" factor.
     
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  7. Gingergrrl

    Gingergrrl Senior Member

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    @Antares in NYC Just curious, were Dr. Montoya's brain MRI studies not released by the media in the UK? They were publicized by all the major media outlets over here (even though it was brief and didn't lead to any government funding... YET :))
     
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  8. cfsStevew

    cfsStevew

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    thats a good point - all the brain MRI reports appeared to be US media - was there any coverage in the UK?
     
  9. Antares in NYC

    Antares in NYC Senior Member

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    I don't live in the UK, so I can't speak with full certainty on the coverage of Dr. Montoya's study in the British media. All I know is that I did a Google News search for that study, and it was mostly covered by the US media, major outlets too (ABC, CBS, NBC, CNN, scientific journals, etc). Also some Asian and European publications picked it up.
    I found zero articles from a UK publication covering that study. The only stuff on CFS in UK media on the last two months is fluff about "miracle cures", or the dreadful "fear of exercise" article, which is repeated almost verbatim by all major UK publications. Again, this was just a Google search, so I may be wrong.

    Sad.
     
    Last edited: Feb 5, 2015
  10. Sean

    Sean Senior Member

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    You are too polite. ;)
     
  11. Gingergrrl

    Gingergrrl Senior Member

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    @Antares in NYC That's what I feared but maybe someone in the UK can say for sure as I don't want to speculate. But we had several people tell us that they saw the story break on CNN or NBC and it really helped gain credibility for the biological basis of the illness IMO.
     
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  12. Valentijn

    Valentijn Senior Member

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    The Dutch mainstream media never picked up the story, even though ME is quite well known here, and generally taken seriously (except by doctors).
     
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  13. Revel

    Revel Senior Member

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    I did not see any media coverage of Dr Montoya's study in the UK.

    On the other hand, last week my neighbour did bring over a very "helpful" article from The Times which suggested that a vegan diet and exercise is the way to go if I'm serious about finding a cure. Er .... thanks o_O.
     
  14. Cheshire

    Cheshire Senior Member

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    The UK and Dutch media not covering the Montoya study is just astonishing...

    The Standford study was pretty well covered in France, whereas the Lancet one was just spoken about in one article, and its tone was much more cautious than everything that I read in the UK press.

    But MECFS is still underdiagnosed, and the majority of doctors think it's psychosomatic, or malingering (one comment on a GP journal said "oh, now they have an excuse for lazyness").

    Things are slowly moving for fibromyalgia, and more voices are echoing psychotherapy is just not the solution.
     
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  15. rosamary

    rosamary Senior Member

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  16. ukxmrv

    ukxmrv Senior Member

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    I gather that this was an attempt by the UK ME Association to get the Standford work publicised but the Daily Mail put it right at the end of the article (and with a controversial heading and the belly dancing photos)

    http://www.dailymail.co.uk/health/a...ople-unfairly-labelled-attention-seekers.html

    "However research published in October last year revealed the brains of those diagnosed with chronic fatigue syndrome are distinctly different to those of healthy people.
    The abnormalities identified in this study, published in the journal Radiology, will, it is hoped, go some way to helping resolve those ambiguities.
    The team of researchers at Stanford University School of Medicine believe their findings could lead to more definitive diagnoses of the syndrome and better treatments.
    The combination of symptoms can devastate a patient's life for decades.
    Ms Andrews said: 'Over the years I have met people who tell me I am not ill.
    'I also know people who are not as lucky as me, whose family say they are lazy and therefore lost contact with them.
    'But it is medical people who have let me down the most. "

    ................
     
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  17. Blue

    Blue

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    They continue with their propaganda not only in the UK. There will be a congress of psychosomatic medicine in Germany in late March - with - guess who? - Peter White. Holding a keynote speach about "the treamtent of chronic fatigue syndrome". http://www.deutscher-psychosomatik-...-medizin-und-psychotherapie/key-note-speaker/

    Will this never end?

    Can't wait for the articles in German newspapers how CFS patients only have to overcome their fear of exercise :bang-head:
     
    Last edited: Feb 6, 2015
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  18. Antares in NYC

    Antares in NYC Senior Member

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    Wow, the tone of that article in the Daily Mail is awful condescending. Some coverage!

    The headline alone is disgusting, in my opinion:
    It just plays with the established narrative that the syndrome may just be made up. A truly awful way to cover this study, while never giving a shadow of a doubt to articles on PACE or other snake oil, miracle cure stories.
     
    Last edited: Feb 6, 2015
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  19. rosamary

    rosamary Senior Member

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  20. chipmunk1

    chipmunk1 Senior Member

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    i think it is just part of the "treatment" as usual. gain the trust of the sufferer, partially agree with to make them feel understood and continue with what you think you have to do.

    http://www.patient.co.uk/doctor/somatic-symptom-disorder

     
    Last edited: Feb 6, 2015
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