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Open letter to the Trustees and Staff of Action for ME about the 'Toolkit for professionals'

Discussion in 'Open Letters and Replies' started by Trish, Jan 12, 2019.

  1. Trish

    Trish Moderator Staff Member

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    Following discussion on this thread, I contacted Action for ME to express concern about the document and ask for the research evidence on which the advice in the document was based. The staff member who replied asked me for more details of my concerns and seemed bemused by the idea that there needed to be research evidence.

    I therefore decided to write a personal open letter to Action for M.E. detailing my concerns and asking that the document be withdrawn.

    Here is the letter. It has been sent, so please don't waste time and energy proofreading it or making suggestions for changes - it's too late.

     
    Woolie, rainy, Forestvon and 78 others like this.
  2. Cheshire

    Cheshire Moderator Staff Member

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    I am always bemused by how low AfME's standards are.
    Unbelievable.

    Great letter, @Trish
     
    rainy, Forestvon, Maggie and 25 others like this.
  3. Barry

    Barry Senior Member (Voting Rights)

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    Brilliant @Trish.

    Why is it that so many of AfME's endeavours seem rooted in soliciting influence and promoting their name, and so very little to do with advocacy rooted in real science. Politics rather than substance.
     
    Maggie, Suffolkres, CarolB and 20 others like this.
  4. strategist

    strategist Senior Member (Voting Rights)

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    A lot of waffle that will not make sustained work possible, even if the authors very much wished it did. There is significant potential for harm in any intervention, which this is, that tries to manipulate patient's activity levels.
     
    Maggie, CarolB, janice and 19 others like this.
  5. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Thank you @Trish for writing and sharing this clear and important letter.
     
    Forestvon, Maggie, Daisy and 27 others like this.
  6. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Well done @Trish! Great letter!

    Thank you so much for the time and energy you out into it. I hope it hasn't wiped you out completely.

    @Action for M.E. , if you read this thread - for the record I agree with every word she said.
     
    Forestvon, Maggie, Daisy and 22 others like this.
  7. Nellie

    Nellie Senior Member (Voting Rights)

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    Brilliant. Thank you @Trish
     
    Forestvon, Daisy, CarolB and 18 others like this.
  8. strategist

    strategist Senior Member (Voting Rights)

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    I wanted to highlight this. In the current paradigm, patients are persuaded to adopt a "positive" frame of mind. The belief is that this positive frame of mind will help them, but I doubt there is any high quality evidence showing this to be true. That something is done with good intentions does not mean that the results will be good. Such a positive frame of mind can be unrealistic and damaging. It can be another way to be in denial about the fact that there is no way to predict or influence the course of the illness.

    My impression is that this document is filled with this kind of positive attitude. The reality is that we don't know if that helps patients, or is just a waste of everyone's time and energy, or is even harmful. I find the recurrent references to dealing with relapses and fluctuations in symptoms suspicious because these are signs of overexertion which suggests that contrary to the message in this document, the observed patient were not successfully managing their condition.
     
    Last edited: Jan 12, 2019
    Forestvon, Maggie, Daisy and 26 others like this.
  9. Sean

    Sean Senior Member (Voting Rights)

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    Excellent letter, Trish. :thumbup:

    The take-away message, IMO.

    Good point.
     
    rainy, Forestvon, Maggie and 22 others like this.
  10. Willow

    Willow Established Member

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    I also think that many of us have tried this on our own. I know I have -- over and over again. In the past, when I got to a place where I was feeling a little better, I would take on more with all the hope and positive attitude in the world. Only to find out it could not be sustained. To find myself in a downward spiral was always so demoralizing and painful both physically and emotionally. Had to work through it and come to acceptance of this disease and its devastation to my life once again. No matter how many times I tried, it was and still is never sustainable! It blows my mind that these powers that be never listen to and learn from patient experiences. Instead they are caught up in their hypothetical theories which are not based in reality. These so-called therapists only serve to add greatly to the suffering of ME/CFS patients. When will they ever wake up?
     
  11. Ravn

    Ravn Senior Member (Voting Rights)

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    But there are members on this forum who endorse every word. I for one am putting my hand up.:emoji_hand_splayed:
    Thanks @Trish. Superbly formulated letter. :emoji_clap::emoji_clap::emoji_clap:
     
  12. Hutan

    Hutan Moderator Staff Member

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    Me too.
    Great work Trish.
     
    Forestvon, Maggie, CarolB and 18 others like this.
  13. Barry

    Barry Senior Member (Voting Rights)

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    Ditto.
     
    Forestvon, Maggie, CarolB and 16 others like this.
  14. TiredSam

    TiredSam Moderator Staff Member

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    Aye :emoji_hand_splayed:.

    Fabulous letter.

    With regards to evidence, from their statement here:

    https://www.actionforme.org.uk/news/pace-trial-and-behavioural-treatments-for-me/

    So they claim that the therapies they recommend are evidence-based, but their only evidence seems to be "BACME said so", which they have taken on faith, just like they took the BPS bullshit on faith.
    Well really, we told you, BACME said so, what are you bothering us for now?

    Their statement continues:
    Their statement is from August 2018, which we discussed here at the time and thought was a rather bungled apology for past wrongs. In fact it wasn't, it was just informing us of their current position, as it said at the top:

    Their position is their position, and that's that. No discussion, no response to feedback from sufferers (although we gave them plenty at the time). They are now forging ahead as recommended by BACME without reference to the views of sufferers. It's how they've always done things.
     
    Forestvon, Maggie, janice and 24 others like this.
  15. Sarah

    Sarah Senior Member (Voting Rights)

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    It's a very good, clear letter.

    Action for ME previously fed SEE M.E project findings back to the joint Work and Health Unit as part of the WHU Expert Advisory Group. I'm not sure when the toolkit was published or whether this was provided to the WHU or WHU EAG.

    The WHU is jointly sponsored by the DWP and DHSC and is responsible for taking forward the employment advisors in IAPT programme, which has sought to embed employment advisors in IAPT services and increase the number of employment advisors working with IAPT services with the object of helping referrals remain at work or return to work if on sick leave.

    'Employment advisers' (a term which is not specific to the employment advisors in IAPT programme) are included in the SEE M.E. toolkit's intended audience. ME/CFS patients may be referred for IAPT under IAPT-LTC as patients with MUS.

    Whilst I understand the reasoning given for recommending increased liaison, I think it's a highly questionable idea to feed back findings to the DWP or a spin-off government unit to the effect greater liaison or integration of employment and healthcare services is highly recommended.
     
    Last edited: Jan 13, 2019
    MEMarge, Inara, MSEsperanza and 14 others like this.
  16. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Basically, while we are wondering how we can slow down if not put an end to IAPT, and we're still trying to explain to AfME that their advice can and will harm, they're busily ignoring us and colluding to help bring IAPT about.

    So, no matter what they say, they obviously support ME as being suitable for treatment under IAPT. Given the work they do and the contacts they have it simply isn't possible they don't know what IAPT will mean for patients.
     
    Maggie, Simone, Inara and 16 others like this.
  17. Trish

    Trish Moderator Staff Member

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    Thanks for that Sarah. It gets worse. I didn't know AfME were colluding with us being included in IAPT as well. :arghh:
     
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  18. Sarah

    Sarah Senior Member (Voting Rights)

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    To be clear, 'Employment adviser' is a broad term which isn't specific to the employment advisors in IAPT programme - I'll flag that in my post.

    I don't imply that AfME are colluding on IAPT. But I don't think they should be feeding back SEE M.E. to the WHU when PwME are being referred under IAPT as MUS and may be further referred for employment advice under a programme taken forward by the WHU in result.
     
    Last edited: Jan 13, 2019
  19. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I think it's fair to say that AfME are fully aware of IAPT. If not that would be another massive failing to keep informed of events and I don't buy that.

    Given the model they use so closely resembles the IAPT plan and O'Dowd's involvement and opinions, the probability that this feeds in, or supports IAPT can't have passed them by.

    It's not like they're such a big charity that there'll be different sections operating in isolation to the rest.
     
    Maggie, MEMarge, MSEsperanza and 15 others like this.
  20. Medfeb

    Medfeb Senior Member (Voting Rights)

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    Fantastic letter! Thank you, @Trish
     

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