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?
