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UK: 'Managing my ME', 2010, ME Association

Discussion in 'General ME/CFS News' started by Hutan, Nov 16, 2020.

  1. Hutan

    Hutan Moderator Staff Member

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    'Results of probably the largest-ever survey of opinion among people with ME/CFS and their carers about what treatments and therapies work for them and what don’t are available for downloading. The link to the PDF is at the bottom of this story.

    The survey also shows what people with the illness want from their health and social care providers. They are contained in a 32-page report called ‘Managing my ME’, which was published by The ME Association on 27 May 2010.

    The survey – carried out online and through a paper questionnaire by the ME Association in the summer of 2008 – attracted huge interest when the questionnaire was held open online for over four months. A total of 3,494 people answered the questions online. Another 723 completed the paper questionnaire after it was circulated with our quarterly ME Essential magazine.'

    Available here:
    https://meassociation.org.uk/managing-my-me-me-association-publish-results-of-huge-survey-report/

    and a copy of the pdf is attached
     

    Attached Files:

    leokitten, Michelle, Yessica and 7 others like this.
  2. Hutan

    Hutan Moderator Staff Member

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    Screen Shot 2020-11-16 at 10.13.09 PM.png

    People in this survey were actually quite keen for dietary advice - which surprises me a bit.

    They were a lot keener for counselling than CBT. (I'm just sliding on past the enthusiasm for alternative therapies - but it is interesting to compare that with the desire for CBT and GET.)
     
    Michelle, Yessica, MEMarge and 4 others like this.
  3. Hutan

    Hutan Moderator Staff Member

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  4. Hutan

    Hutan Moderator Staff Member

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    "Question 29

    Who would you like to co-ordinate the management of your illness?

    The GP, followed by a combination of GP and consultant physician, was the most preferred for co-ordination. A psychologist or psychiatrist was the least preferred.

    The answers given to Questions 29-32 are fully consistent with ME Association policy, which is to recommend that multidisciplinary hospital-based referral services should be easily accessible throughout the whole of the UK and that a physician should be in overall charge of the service. The reality is that there are still significant parts of the UK where there are no services at all – especially in Northern Ireland, Scotland and Wales. Elsewhere there is a disturbing trend towards setting up services that are not physician-led. Similar points were made in the recent report from the All Party Parliamentary Group on ME Inquiry into NHS service provision. The lack of services for people with ME/CFS is currently the subject of political and medical initiatives in both Wales and Scotland, where The ME Association is playing an active role in the consultation and development process.

    Extra suggestions regarding people who should be involved in the co-ordination of management included the patients themselves, a domicilary nurse with good knowledge of ME and anyone who is local, sympathetic and has extensive and current knowledge of the illness. Overall, the strongly expressed view was that whoever co-ordinated management, it was essential that they were empathetic to the effects of ME/CFS on the patient and that their knowledge of ME was both extensive and current."


    Screen Shot 2020-11-16 at 10.20.01 PM.png
     
  5. Hutan

    Hutan Moderator Staff Member

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  6. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    I'm not objecting to this having been posted because it's interesting. But what prompted it to be posted 10 years after it was first published?
     
    alktipping and Invisible Woman like this.
  7. Trish

    Trish Moderator Staff Member

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    I think it has relevance to the NICE guideline section on managing ME
     
  8. Shinygleamy

    Shinygleamy Senior Member (Voting Rights)

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    Certainly in Scotland there are no hospital based physician's for M.E. as far as I know. Wasn't it the nice guidelines that said a gp should handle it, leaving us vulnerable to the bps lot? I personally don't like the gp thing. I've never had a gp that wanted to do anything with my m.e. my current gp would be happy enough to send me to a consultant for m.e. but there's no way he's going to do anything himself, he doesn't know anything about it except fatigue, and even if he did he only has 8 mins to discuss it. In some parts of the country, a gp is only allowed to discuss one issue per appointment, with m.e. you can't keep going backwards and forwards!
     
    Michelle, MEMarge, alktipping and 4 others like this.
  9. Hutan

    Hutan Moderator Staff Member

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  10. DigitalDrifter

    DigitalDrifter Senior Member (Voting Rights)

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    It says 59.6% of members thought alternative medicine was helpful. I'm worried that if people read that they will conclude that ME is psychosomatic.
     
  11. alktipping

    alktipping Senior Member (Voting Rights)

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    until they actually teach M E from the present state of biological knowledge i would not be happy with any member of the british health system inferring they know how to treat M E . removing biased assumptions from people who have already been witless enough to take them on board would be an extremely difficult task unless their is a suitable system for reporting the delusional attitudes of many health care non providers .there will be no change until we have a proper inquiry and suitable admonishment for the catastrophe that has been inflicted and is still being inflicted on medical education the political will to make illnesses disappear to cut cost of health care also has to be acknowledged to be false since there are no savings ever in allowing large segments of sick people to be abused and neglected .
     
  12. Trish

    Trish Moderator Staff Member

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    Just having someone with time to listen and a minor temporary feeling of improvement with a gentle massage, or a bit of placebo effect from a homeopathic remedy, or a relaxation therapy can be 'helpful'. It doesn't mean alt. med. has made a long term positive effect on their ME, let alone cured it.
     
  13. rvallee

    rvallee Senior Member (Voting Rights)

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    That's really a problem with the tyranny of low expectations that defines "helpful". A free meal is helpful. Lots of small things are helpful. Helpful is extremely vague and wide-ranging and is rarely significant. Helpful is just about the lowest tier of having a positive effect that exists. Most alternative medicine is helpful. It doesn't do much, but it's helpful. Helpful doesn't mean much, so almost anything counts. Hell, a smile can count as helpful in many situations. A free cane is helpful to someone who is paraplegic, it can be used to whack people behind the head or something if they say too much tripe about the only disability being a bad attitude. Just not nearly as much as a wheelchair and an accessible home and regulations to upkeep that access.

    Helpful is simply not a clinically valid... anything. It's this race to the bottom that has completely paralyzed clinical psychology, everyone tries to reach the minimal effect and stays there, unwilling to budge because someone "helpful" is turned into "that's just as good as life-changing". Which it isn't, because then people would say it's life-changing, not that it's merely helpful, which someone holding the door once qualifies as if someone is carrying to much stuff to grab the handle.

    I really don't understand how that became not only an acceptable standard, but seemingly the only thing people ever do here. As long as it's helpful it must be good and must be kept forever and don't you dare say it's not helping.

    Which, again, is just alternative medicine. I have no issues with alternative medicine, but it has different, lower, standards, ones that make little to no difference in real life.
     

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