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Are ME/CFS Patient Organizations “Militant”?, 2018, Blease and Geraghty

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by Andy, Jul 4, 2018.

  1. Woolie

    Woolie Senior Member

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    2,918
    I'm sure Prof Crawley really believes you're a villain, @dave30th. You must be - for her, the alternative is just, well, unthinkable.

    Its fascinating the lengths these people have to go to to preserve their beliefs, eh? They cannot allow for the possibility that critics may have a point, because that would lead to the terrifying reality that... they may need to confront their own beliefs. So its necessary to see critics as mad or nefarious or both.
     
    ScottTriGuy, Melanie, Barry and 13 others like this.
  2. Hutan

    Hutan Moderator Staff Member

    Messages:
    26,534
    Location:
    Aotearoa New Zealand
    The BPS crowd probably think the same about us.

    But they would be wrong. I do often confront my beliefs. I think, 'am I just making this illness up, do I have something to gain from being ill?'. Because I desperately want to get better, I do consider a whole range of possibilities.

    And then I think, 'I didn't have a traumatic childhood, my children didn't have traumatic childhoods. We have different personalities but we came down with this illness at the same time. Before the illness, I had an interesting job that I regarded as my profession, my children liked being at school; for all of us, the illness caused a lot of loss.

    When we got sick we didn't lie around in bed becoming deconditioned. My children liked sport and tried really hard to keep doing it. I tried to keep working and I tried to do pilates to rehabilitate myself. The CPET I did shows that I'm reasonably fit even now after 5 years of illness.

    I don't qualify for a benefit and I can't work, so being sick is not giving me a better lifestyle. I'm not depressed and I don't have a history of depression or any other psychiatric illness. I still find things to be happy about and look forward to. My children were not and are not depressed and have never had any psychiatric or behavioural conditions.

    I don't have this illness to get attention from doctors, or anyone. After a number of awful encounters with doctors, I now avoid them as much as possible. Up until very recently, my son would rather have people think that he is lazy and unreliable than tell them he is sick. I got a lot more attention and respect when I worked than as an unemployed sick woman who doesn't get out much.

    So, the theories just aren't holding up for me. And that's without getting in to the drivel that passes for science supporting their beliefs. I have been totally amazed at the BPS stuff that gets published, it's just so bad.

    To be clear, I'm not saying that if you are deconditioned, or you did have a traumatic childhood or whatever then the BPS theory applies to you. Just that, even knowing the BPS model doesn't fit me and reading nearly every day more rubbish spouted by the BPS crowd, I still routinely think, 'is there any way I could have thought my way into this illness, and any way I could think my way out?' And if the BPS theories and papers and treatments made any sort of sense, I would be accepting them.

    So, to get back to the topic of the thread, I think patient organisations reflect this openness of patients to anything that might help. If anything, rather than being militant, I think a lot of patient organisations are way too accepting of pseudoscience rubbish and do not speak out clearly enough to look after the interests of people with ME.

    My local patient support organisation takes the 'think positively and you will get well' approach and suggests not using the microwave or aluminium pots. Their support worker has no idea about the problems of the PACE trial (she hadn't even heard of the PACE trial) and suggests that different things help different people so we should be open to everything. When I contacted my national support organisation about the terrible website of this local organisation which is affiliated to them, they agreed it was bad but did nothing. I don't see the national organisation proactively working to get better care for people with ME.

    In New Zealand, a country of 4.8 million people, the ME-specific medical care we have is one elderly GP who admits biochemistry is not her strong suit and who works only two half days a week covering women's health and hypnosis, as well as CFS. She has been dedicated and well-meaning for a long time, but she is nowhere near enough.

    The patient organisations are a long long way off militant in this neck of the woods.
     
    Last edited: Jul 8, 2018
  3. Trish

    Trish Moderator Staff Member

    Messages:
    51,877
    Location:
    UK
    Very well put, @Hutan. I could tell a similar story, but won't because I've told my story too often already.

    I'll just add that, so insidious is the ''exercise yourself better'' message that, even after repeated failed attempts making me worse, learning about the scientific research, the failure of PACE and FINE, the awful stories of so many of us getting much worse with exercise, I still find myself trying to do just a bit more, and suffering the result.
     
  4. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    2,199
  5. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    2,199
  6. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    2,199
  7. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    2,199
  8. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    2,199
  9. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    2,199
  10. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    2,199
  11. Sean

    Sean Moderator Staff Member

    Messages:
    7,044
    Location:
    Australia
    "we find that there is no evidence that advocacy groups have promoted or adopted any violent or confrontational methods as political or social strategy"

    Yeah, funny that. So did the Appeal Tribunal in the Matthees FOI case, which, as I understand it, is the highest level of legal ruling on this matter so far in the UK.
     
    ukxmrv, Inara, Trish and 1 other person like this.
  12. Esther12

    Esther12 Senior Member (Voting Rights)

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    4,393
    I didn't see any mention of the Science Media Centre on my late night read (I might have missed it), and I'd have liked that. A lot of good stuff in there - thanks to Blease and Geraghty
     
    Sean, Inara, Dolphin and 2 others like this.
  13. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  14. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  15. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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