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Correspondence from the DWP for 2003

Discussion in 'General ME/CFS News' started by JohnTheJack, Feb 28, 2018.

  1. JohnTheJack

    JohnTheJack Moderator Staff Member

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    I have previously shared the correspondence for 2004. Here it is for 2003.

    I am getting these as and when I can. There is a limit to how much they will release and how often. Even if someone else asks it won't help as it will be seen as the same request. I'll post more when I get them.

    I have glimpsed at them. A couple of things stand out: First the close involvement of AfME. Second, the spelling out of how much these trials were seen as part of the move to get patients working.

    21 files in all.

    (Edited '19' to '21'.)
     

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    Last edited: Feb 28, 2018
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  2. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Part 2.
     

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  3. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Part 3.
     

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  4. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Oops. Can't count. 21 files in all.

    Part 4.
     

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  5. JohnTheJack

    JohnTheJack Moderator Staff Member

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  6. Esther12

    Esther12 Senior Member (Voting Rights)

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    Thank you - once again!

    There's so much info coming out that I'm struggling to read even half of it.

    I so badly want to read these. I need more time in my life... or someone else to deal with all of life's chores.
     
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  7. MEMarge

    MEMarge Senior Member (Voting Rights)

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    When will they realise that these people WANT to work, be in education or training and want to have normal lives.
     
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  8. Alvin

    Alvin Senior Member (Voting Rights)

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    They can't, their reality denying worldview does not include this option and they can't concede reality otherwise they have to admit they are harming patients instead of heroically treating them.
    In plain English they would have to admit to themselves that they are bad people which they can't do at any cost, even human lives.
     
  9. Esther12

    Esther12 Senior Member (Voting Rights)

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    I thought I'd post my notes on these. It might help others find things that they're interested in. They seem in a bit of an odd order.

    1) 507_01_23 01 2003_PW to MA.pdf - Letter from White to Aylward. PS includes assurance PACE questionnaire will ask about when social security and insurance benefits they are receiving.

    2) 507_02_17 02 2003 LD.pdf -
    Letter from CFS patient saying that they are being turned down for ill-health retirement, due to claim CMO was advised nobody should be regarded as as permanently disabled until all reasonable attempts at rehabilitation have been tried - despite CBT/GET having already been tried and having led to no improvements for him. This sounds very like this quote from a Wessely paper:

    "When asked to comment on benefits or insurance claims we support the patient as much as is possible, but do not support claims for permanent disability or medical retirement until all reasonable efforts at rehabilitation have been tried."
    https://www.s4me.info/threads/in-pa...-syndrome-1996-wessely-et-al.1329/#post-22748

    3) 507_03_21 05 2003_AW to MA.pdf
    Letter from Wearden to Aylward re FINE (she say White suggested he'd be interested). It includes the FINE trial identifier, which I'm not sure if I've seen previously. Aylward's written reply says very interested in it and that "the objectives of FINE share much in common with the DWP's "Pathways to Work" programme.

    4) 507_10_05 03 2003_MA.PDF Moira Henderson writing to unknown - sounds like someone from an ME group other than AfME, that has written something critical of positive claims about CBT/GET. Moira Henderson sat as an observer on the PACE trial steering committee. Her letter reads as quite creepy to me, and like she's trying to manipulate someone she thinks is an idiot. It looks like there was a real push to manage patient groups by the DWP. She says "and for the past year have been a member of Fibromyalia UK's Medical Advisory Board." "As you know, in addition to the DWP's annual fora, Mansel's team has periodic meetings with Action for ME." They try to avoid meetings for meeting sake "So we tend to arrange a meeting when there is something of mutual interest to discuss, and preferably when there is some sort of positive action that can be taken."

    OT: Here are a patients notes on a meeting with Henderson in 2006 about problems with the DWP's guidance on CFS: http://www.25megroup.org/Campaignging/ME TOPICS/DWP/NOTES ON DWP MEETING doc.doc

    5) 507_05_12 08 2003_MA.PDF
    Aylward letter, 8 days before the above one from Henderson, saying he'd get Henderson to write as she was the DWP's lead for "Chronic Fatigue Syndromes". Says that "we in DWP have an abiding interest in Chronic Fatigue Syndromes".


    6) 507_06_11 04 2003_MH.PDF Moira Henderson response saying that she cannot say why they were turned down for DLA.

    II

    7) 507_07_07 03 2003_MA.pdf Letter from the person for ME/CFS raising concern about the way their appeal for DLAA was treated.


    8) 507_08_28 03 2003_CW to MA.PDF Chris Watkins of the MRC writing to Aylward about PACE. Some extracts from the minutes of the MRC Board's discussion were included: "The inclusion of a consumer organisation, Action for ME, as a co-applicant was especially welcomed. It was agreed that the proposal was a very well-designed and carefully considered clinical trial, in an area where the evidence base was lacking." "The involvement of a patient charity as a co-applicat was welcomed." "The Board ..... gave the application their strongest support, recognising the very high strategic importance of the proposed research."

    9) 507_09_06 03 2003_CW to MA.PDF
    Chris Watkins from the MRC asking Aylward if her could let him know about any DWP funding for PACE.

    10) 507_10_05 03 2003_MA.PDF Someone wanting a contribution from Aylward/DWP to CMO's report. Aylward said he could not make a contribution as it was a Department of Health report.

    11) 507_11_15 05 2003_CW to MA.PDF Chris Watkins to Aylward with MRC press release about the funding of PACE and FINE. White is quoted as saying "I'm particularly pleased that the study has been designed in collaboration with the leading patients' charity Action for ME." Aylward's note: "Peter White will keep us closely in touch with PACE and the MRC Summer [?] Workshop."

    12) 507_12_14 04 2003_MH.PDF Moira Henderson replying to someone raising concerns about how they were assessed.

    III

    13) 507_13_06 04 2003_MA.PDF Letter to Aylward raising concerns about how they were assessed/treated.

    14) 507_14_22 05 2003_AW to MA.PDF Wearden's reply to Aylward e-mail in 3), saying that they could meet when she's in London.

    15) 507_15_31 07 2003_MA to TT.pdf Response to invite to Lord Bragg's reception at the Lords from Action for ME's Chair of Trustees Trish Taylor. He cannot attend but asks if Dr Nick Niven-Jenkins could go in his place. Says: "We have developed a close working relationship with action for ME, and we would very much like to learn about your plans for the future."

    16) 507_16_31 07 2003_TT to MA.pdf
    Invite from Trish Taylor to Aylward:
    "As you know, this is a tremendously exciting time for Action for ME and the people with ME that we represent. We have been working hard to ensure that people with ME receive the help and support that they need and deserve.

    This event will give us the perfect opportunity to thank you for your support and interest in our work, and for use to explain some of our plans for the future."

    Wow. To Mansel Aylward. Here's a recent, and imo unduly generous, summary of his impact on disabled people in the UK: http://journals.sagepub.com/doi/abs/10.1177/0261018316649120

    17) 507_17_25 06 2003_MA.PDF Aylward to ? It looks like some e-mail correspondence has been cut off here, and perhaps was not scanned when it should have been. "I thoroughly support your approach when you say people with CFS need to get back into, and stay in, work. This very positive approach is one which the Department of Work and Pensions thoroughly endorses." "I hope this will assure you that you are not alone in wanting to improve work prospects for people with CFS, and that it is very much part of the ongoing Government programme as well."

    18) 507_18_11 06 2003_MA.PDF
    Response to a query from the Fibroymalgia Association about whether the money being used to set up ME/CFS clinics will also benefit those with fibromyalgia. Includes a press release about this funding which says "Action for ME have been awarded a Department of Health grant, of £177,300 over the next three years, to support the development of clinical networks."

    IV

    19) 507_20_05 09 2003_CC to MA.PDF Chris Clark writing to Aylward to request DWP funding to support AfME prep work before applying to DofH for funding to produce educational packages.

    20) 1 e-mail in what looks like a chain on interpretation of policy on early retirement with CFS/ME. Looks like only page 2 was included in FOI release. Maybe others are missing?
     
    Last edited: Mar 4, 2018
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  10. Esther12

    Esther12 Senior Member (Voting Rights)

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    Thanks for all your work on this John. Did you post those correspondence here? I'm not sure that I've seen them.
     
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  11. JohnTheJack

    JohnTheJack Moderator Staff Member

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  12. Dolphin

    Dolphin Senior Member (Voting Rights)

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    From the Royal Colleges report (1996) written by Peter White, Simon Wessely and others:

     

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  13. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    ""2) 507_02_17 02 2003 LD.pdf - Letter from CFS patient saying that they are being turned down for ill-health retirement, due to claim CMO was advised nobody should be regarded as as permanently disabled until all reasonable attempts at rehabilitation have been tried - despite CBT/GET having already been tried and having led to no improvements for him. This sounds very like this quote from a Wessely paper:

    "When asked to comment on benefits or insurance claims we support the patient as much as is possible, but do not support claims for permanent disability or medical retirement until all reasonable efforts at rehabilitation have been tried."
    https://www.s4me.info/threads/in-pa...-syndrome-1996-wessely-et-al.1329/#post-22748""

    It is interesting to think how such arguments might be applied to someone with multiple sclerosis or rheumatoid arthritis. There is some sort of mental block that does not allow ME to be thought of in the same terms as these conditions by the psychiatrists.

    One can see the perceived need for a positive result from PACE. 'All reasonable efforts' has to imply all efforts known to be useful. Methotrexate might be a reasonable effort for RA. So there needs to be a controlled trial for CBT and GET. What I really cannot understand is why people at MRC thought PACE was a competent design.
     
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  14. Keela Too

    Keela Too Senior Member (Voting Rights)

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    Wow! So a trial - that is supposed to be scientific and about finding the truth - has "objectives" that are in line with a DWP programme to get people back to work? That's a big admission right there!
     
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  15. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    I was thinking about this when listening to one of the recent Gary Burgess interviews. It's not only the psychiatrists; the general public perception has been skewed to this way of thinking also.

    How many interviewers, when talking to someone with any other illness, repeatedly brings up
    'you don't look sick, or you don't sound/act ill' ??
     
  16. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Indeed, but I think the following from Watkins of the MRC is even more revealing:
    "The Board ..... gave the application their strongest support, recognising the very high strategic importance of the proposed research."

    So this is not just objectives, there is a whole strategy, and one that the MRC buys in to. What strategy? Getting people off benefits? So why was there no money for research into rheumatoid to get people off benefits?
     
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  17. JohnM

    JohnM Established Member (Voting Rights)

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    DWP policy-based evidence making, enabled by BPS cult who also view themselves as moral guardians of social values; values defined by themselves as to what is good and what is bad, what is useful and what is not, etc?

    I'm still at a loss, as to how subjective reports of feeling better or much better equates to benefit, yet those same subjective reports of feeling worse or much worse, do not equate to harm? Back comes the reply that when we are talking about harm, we are are talking about physical harm (which we didn't look for anyway), and physical benefit of which there is none (which we thought best to hide), well, because it wouldn't do to take away any hope of recovery from our use of CBT/GET; would be of no benefit at all to patients and health professionals in our joint crusade to get everyone back to work, regardless of disability.

    Poorly worded I know, for which my apologies and end of rant.

    Wishing everyone improved health and every happiness. :)

    ETA .. clarify use of CBT/GET
     
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  18. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    An excellent portrayal of incoherence I would say!
     
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  19. Trish

    Trish Moderator Staff Member

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    Because they knew they wouldn't be able to get away with proclaiming RA sufferers to be malingering scroungers.
     
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  20. Keela Too

    Keela Too Senior Member (Voting Rights)

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    I assume you are talking about the BSP incoherence there, which is by it's very nature is a smoke and mirrors endeavour. LOL
     
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