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UK: let MEA know if you want your GP to have their clinical guidance booklet

Discussion in 'General ME/CFS News' started by Sasha, Feb 2, 2013.

  1. Sasha

    Sasha Fine, thank you

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    This on the MEA website today

    by Tony Britton on February 2, 2013
    It’s time to add your GP surgery details to our ‘Telling GPs the Truth about ME’ campaign, which will be ready to roll out during ME Awareness Week in May.

    If you want your GP to receive a copy of our clinical guidance booklet “ME/CFS/PVFS: an Exploration of the Key Clinical Issues” – and 900 people so far have told us that they do – please send details of your surgery to our Publicity Manager, email: tony_mea@btinternet.com or text: 07516 656 537

    A well-supported Christmas fundraising Appeal bought in over £9,000 which will let us to tackle this GP education project with gusto. At a rough guess, this will buy up to 4,000 copies of the booklet.

    A fully revised edition of the booklet is being prepared for the campaign. The authors are MEA medical adviser, Dr Charles Shepherd, and consultant neurologist Dr Abhijit Chaudhuri, who works at the Queens Hospital, Romford, Essex.

    So, please, if you think your GP needs educating about ME/CFS or Post Viral Fatigue Syndrome, let us know. Emailtony_mea@btinternet.com or text 07516 656 537.
    Valentijn likes this.
  2. golden

    golden Senior Member

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    that sounds really good.

    cant help but want to read the booklet myself first though before its sent off to a g.p.

    i have seen a lot of c.b.t. propaganda from the mea.

    is there a way to view the booklet?

    i have sent my surgery the canadian guidelines but i think it was a bit much for them.





    thanks.
    Ritto likes this.
  3. Sasha

    Sasha Fine, thank you

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    As far as I know the only way to see it is to buy a copy, which is unfortunate because I think a lot of patients will want to know what's going out. I don't think the MEA is pro-CBT except to help people with the fall-out of having a serious medical condition but I understand your caution.

    I used to have a copy of the booklet but didn't keep it - I don't remember my hair standing on end about anything, though.

    Why not email them with your concerns? It would be helpful to them to know about your qualms.
  4. golden

    golden Senior Member

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    thanks.

    sending free copies of a booklet which i myself cant view first to g.ps and charging patients to view it doesnt sit well with me.

    i would definately not get it sent until i viewed the contents.

    if it was the mea who recently did a survey - i definately did email them and tell them my concerns - i was unable to fill out the survey due to the likelihood of the survey results being misrepresented in favour of c.b.t. being of use - due to the fluctuating nature of m.e.

    whilst i feel c.b.t. may be of some use to a section of society - with any illness - or even if they are healthy - i believe the mea still targets m.e. patients specifically for c.b.t. of being value.


    :)
  5. Sasha

    Sasha Fine, thank you

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    Hi golden - I assume it's a cost issue for the MEA. It's quite a substantial booklet with production costs and presumably they can't afford to give it away.

    I did the MEA survey. They've done a lot of work to push for biomedical treatment and have pushed very hard their survey results showing that most PWME get worse with GET. They ask about CBT, pacing and GET to get info to fight its inappropriate use in our disease, as far as I can see but I respect that you might have different view.

    They have a news section on their site where you can see the actions they take to try to promote the biomedical angle and fight the psych lobby.
  6. Min

    Min Senior Member

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    Has anybody read it please?

    I left the MEA because they only seemed to represent people with mild fatigue.
    Wildcat likes this.
  7. Research 1st

    Research 1st

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    Min, certainly the membership base of the MEA would have changed over the years because of the mass adoption of chronic fatigue into the medical profession as representing CFS and ME.

    For this reason any document of 'advice' for GP's produced by the MEA in more present times cannot expect to represent people with ME exclusively, but people with varying fatiguing syndromes.

    You can bet your bottom dollar that CBT will be mentioned as 'helpful to some', when in fact there are no studies performed on people with neurological ME that show CBT to helpful at all!

    This is most disappointing if you have ME and you join an association called the ME Association, because you expect that name to represent ME exclusively, and not including vague fatigue state of unknown cause.

    Socially, no one can avoid this. The MEA cannot hope to avoid this either even if it wanted to. Globally we have had mass immigration of CDC CFS research cohorts into a past membership base of people with neurological ME who existed before the new kids with CFS/ME were even born. What it means to have ME, has been diluted.

    All charities of CFS/ME nature will be afflicted by this confounding variable, unless they make it a policy to represent the most severely affected and don't cater for 'CBT', such as the UK's 25% ME Group who have no funding and no governmental influence.

    The problem with that recent online MEA survey and subsequent claims of medical benefits of CBT is non members could fill in the data online. No evidence thus exists from the data set, that the responses are from people with a clinical diagnosis of CFS/ME. Naturally the data is then open to exploitation from those who want to skew the results in favour of an outcome they wish for. Any online survey is open to this phenomena, especially the advertising industry.

    Even if all members were validated by the members status and postal address, the biomarker measured of defectiveness for therapy is beliefs, so not a scientific measurement that can be correctly assessed if a therapy is useful or not. E.g. reduction in pre and post levels of hypertension, average pulse rate, and levels of attendance to GP practices over adverse symptoms. (Potentially useful data when trying to find basic ways to manage a chronic disease with no available treatment).

    The results from the MEA survey are therefore not able to be used as research other than if you conclude it useful to find the responses of anonymous people who can click with a mouse that they have CFS/ME and can hit multiple radio buttons to select yes/no/maybe.

    For a researcher, that doesn't mean anything. For a potential spin machine that might want to use the results as 'proof' psychological therapies are cheap, effective, and useful it might mean a lot. It might be very NICE for these people to find that CBT 'works' for people with CFS/ME.

    ;)
    MeSci, Valentijn and Min like this.
  8. golden

    golden Senior Member

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    it feels like a booklet i wouldnt want to give to my g.p.

    i think the money would be better spent sending the canadian guidelines or this newer one.


    educating g.p.s about m.e. being a physical illness is useful.

    highlighting the c.b.t. myth to them would be useful.

    teaching them how to speak supportive, empathetic statements to patients would be kind.

    also providing a check list of all tests that need to be done to rule out other physical illness would be medical.

    advising g.p.s of what not to say would be equally useful i.e.

    there is nothing wrong with you
    look, your test results have come back normal
    you are depressed. here is some anti depressants.
    and so on. these non scientific statements should be banned.

    finally, a booklet explaining that there are tests which show up physical abnormalities but which the nhs is witholding from patients would also help g.p.s stop saying 'there are no tests' .

    there are no tests for depression done either but it doesnt stop them unscientifically dishing this diagnoses with pills.

    :)
    PhoenixDown likes this.
  9. golden

    golden Senior Member

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    can i ask then - what is c.f.s.?

    if one fits into the canadian guidelines - presumably one has m.e. even if it has been labelled c.f.s. (as it will have been in the nhs)

    but what is the criteria for c.f.s. - is it fatigue? even mental illness?

    presumably a c.f.s. wouldnt meet all the canadian guidelines criteria?

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