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The ME Association's continued support of the Sussex ME Society

Discussion in 'General ME/CFS News' started by Andy, Sep 22, 2018.

  1. Andy

    Andy Committee Member & Outreach

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    I'm sure the MEA would claim that they are being a neutral broker of information that PwME might find interesting but personally I'm disappointed that they continue to aid a group that, to my knowledge, still supports PACE and has close ties to BACME.

     
    Sarah94, Woolie, dangermouse and 27 others like this.
  2. NelliePledge

    NelliePledge Moderator Staff Member

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    Agreed this should at least have been posted with a comment on MEAs own position on LP. It is possible that it wasn’t picked up as it is in one of the quotes but literally everything from this group needs scrutinising for BPS BS
     
    Sarah94, Woolie, dangermouse and 16 others like this.
  3. Kalliope

    Kalliope Senior Member (Voting Rights)

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    This is not acceptable. This is not just harmless stuff for patients!

    ETA:
     
    Woolie, dangermouse, fossil and 17 others like this.
  4. Andy

    Andy Committee Member & Outreach

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    Just read the article, absolutely awful with two counts of support for the Lightning Process. God only knows what the MEA are thinking about nowadays, they seem to be trying to ruin their good reputation.
     
    Sarah94, dangermouse, Inara and 17 others like this.
  5. chrisb

    chrisb Senior Member (Voting Rights)

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    Should we be surprised?
     
  6. Trish

    Trish Moderator Staff Member

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    @Russell Fleming, whatever was the MEA thinking of promoting this nonsense?
     
    Sarah94, dangermouse, ukxmrv and 14 others like this.
  7. NelliePledge

    NelliePledge Moderator Staff Member

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    Not heard from Russell here recently. I know he had some time off work in July. Hoping he’s ok
     
  8. EzzieD

    EzzieD Senior Member (Voting Rights)

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    I'm truly shocked that the MEA would promote this article - could it have been in error? It's so bad on so many counts and potentially dangerous in its 'advice'.
    Yikes. Dietary improvement can help, but the rest of it - just no.
    Wow, if only yoga really could accomplish all that. I used to do yoga regularly before I got ME and have occasionally done it in a much gentler form and very short bursts since then when possible, but unfortunately for me, it hasn't resulted in running 35 miles a week and winning medals and so on.
    Again, news article making the condition sound trivial and no big deal, where many healthy but a bit overworked people will identify with that set of symptoms. I wish the misrepresentation would stop.
     
    Woolie, dangermouse, fossil and 16 others like this.
  9. Andy

    Andy Committee Member & Outreach

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    What is even worse is that during this time of NICE reviewing the guidelines, we want to minimise any promotion of woo therapies, and here we have one of the biggest UK charities doing the opposite.
     
    Sarah94, dangermouse, Maggie and 22 others like this.
  10. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    dangermouse, Inara, ukxmrv and 10 others like this.
  11. Andy

    Andy Committee Member & Outreach

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    Personally I think that Colin Barton is doing a very good job at playing them in some way, I expect by arguing that the MEA should allow any patient body a say on the MEA's social media and member's magazine.
     
  12. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Surely someone at MEA should at least read articles before posting them on Facebook.
     
  13. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    The MEA’s position is incomprehensible to me.
    How they can ‘advertise’ the Sussex group which promotes Pace style treatments, yet work with all the groups pushing for abolition of CBT and GET, both at the same time, is inconsistent.

    They cannot write to the Times about Fiona Watt’s statement and advertise this group at the same time without losing coherence.

    I agree with @Andy that Colin Barton seems a skilled political mover.

    EDIT: one word substituted.
     
    Last edited: Sep 22, 2018
    Sarah94, Maggie, Inara and 14 others like this.
  14. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    This is just ludicrous....the MEA credibility will be compromised nationally if they don’t distance themselves from this group and their nonsense ...and as others have said they can withdraw advertising support for groups that “go rogue” and deviate away from their core advice just like that...no more leaflet support, no more Facebook postings, a statement on their website distancing themselves from the group etc?

    That can be done tomorrow if they were so inclined. You don’t need to rewrite your policies or anything.

    By sitting idly watching this happen they might as well open the door for all sorts of crackpot groups to set themselves up in their name.
     
    Sarah94, sea, Keela Too and 12 others like this.
  15. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Promoting this article without any comment is directly undermining the good work that Dr Charles Shepherd and the MEA have done in challenging the harm and damage caused by the LP and by GET/CBT.

    Obviously there are people with an ME or CFS diagnosis that believe such as Neurolinguistic Programming and exercise has helped them, and this anecdotal evidence needs to be accorded some respect, just as we wish the anecdotal evidence of the harm caused by these approaches to be treated with respect. However it needs to also be put in the context of a lack any reliable supporting scientific evidence, the weight of contrary anecdotal and survey evidence, the problems of potential misdiagnosis in the first place and the variable nature of the condition meaning any improvement associated with a course of action could be purely coincidental, especially as the people reporting such cures have often tried a myriad of things, so if any spontaneous improvement occurs it inevitably happens whilst a 'cure' or a 'treatment' is being tried.

    Is this issue of people who have recovered following a diagnosis of ME or CFS believing they found a cure and aggressively promoting it more frequent with ME/CFS than with other conditions? Or is it that they are accorded more credibility because they often the chime with an establishment belief in the psychological nature of the condition and because there are no demonstrably effective treatments?
     
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  16. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    My guess is that the social media person shares things without always reading them. I can't logically make sense of it otherwise.
     
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  17. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    My guess is something like this also happened. Colin Barton sent me the article directly. But after I read it, I decided there was no way I was going to share it. I suspect he sent it to Marc Alexander Fluks as the latter has shared it today.
     
    Last edited: Sep 22, 2018
  18. MEMarge

    MEMarge Senior Member (Voting Rights)

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    @Tom Kindlon Is it possible to message the person running the ME FB page to add a warning to the post?

    I'm not being lazy, just reckon it would have more clout coming from you.
     
  19. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    They need to seriously rethink this.

    I'm still a member, but this will make me reconsider when renewal time comes round.
     
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  20. Andy

    Andy Committee Member & Outreach

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    There seems to be evidence that the MEA have 'hidden' my comment on Facebook
    Which means only me and my Facebook friends can see it, nobody else.
     

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