Some notes on this, but a lot was whited out and so difficult to really understand the full context of. I skipped over some bits at the end which were in colums, and the edges being missing made it a real chore to read.
7 of 34: Action for ME raising concern that NICE had removed reference to their CFS/ME guideline being relevant to the DWP's work. I feel like I must be missing some implication of all this, as I don't really understand what led to the letter being sent. Action for ME were writing on behalf of the "M.E. Alliance" and it made me deeply wary of having other charities join with AfME in any way that could allow AfME to present themselves as speaking for them.
8 of 34: Seems that the DWP don't really understand Action for ME's letter either.
11 of 34: Funny e-mail from Action for ME about them being confused by, on one hand, "the strong messages emanating from the DWP about CFS/ME as a hidden disability, and the illness appears well understood and is being handed sympathetically" on the other "the implications of the proposed changes to Incapacity Benefit are leaving us feeling very uncertain." So confusing - it's almost as if talk is cheap and the DWP is happy to bullshit gullible patient groups.
13 of 34: e-mail that's clearly to Mansel Aylward, mentioning his "great support for PACE over many years combined with his academic expertise and interest in this area". I've always wondered where his reputation for academic expertise in this area comes from, aside from his own self-written profiles.
17 of 34: e-mail from Action for ME about a meeting they had. The say that they "encourage our members to maintain a positive outlook, in the knowledge that over time most people's health improves" and "do not hold a dogmatic position with regard to either GET or CBT". The go on to say:
"We are though concerned that they should not be seen as a panacea, the evidence is patchy, and many people's experience of poorly conducted treatments has been harmful. It would be unhelpful to the therapeutic partnership necessary if people believe they are being coerced to have treatments.
"We are greatly concerned that those who are following "pacing" as their preferred route should not be thought to be incompliant with attempts to recover their health."
Sounds like they fell for DWP spin on incapacity benefit reforms: "Thank you for your reassurance that reports in the press were unrepresentative of the intent of DWP policy."
19 of 34 looks like Action for ME's comments on the DWP's draft guidelines for ME/CFS. It looks like the sides and tops have been cut off from these pages. More of Action for ME promoting the 'boom and bust cycle' understanding of ME/CFS. Why have they been doing this for decades when there's no good evidence for it? How can we get them to stop? Newly ill patients will sometimes struggle with finding out what level of activity is optimal for them, but a couple of studies show CFS patients have no more 'boom and bust' behaviour than healthy controls, and we have no good evidence the this pattern does play any significant role in maintaining CFS. p23 - another promotion of the boom and bust cycle as a "commonly accepted factor in the maintenance of the illness". p24: From AfME: "We emphasise the importance of a positive outcome and working [cut] a recovery over time". They do also criticise the DWP draft for presenting rehabilitation as universally applicable.
p26: In response to the DWP's 'Is CFS a physical illness' section:
"AfME's position is that M.E. is a physical illness.
When we have explained what this means we go on to add that there is no illness is the world that is exclusively physical or exclusively "all in the minde" and it is [...] commonly accepted that mind body splits are unehelpful to the understanding [...] illness, and M.E. could hardly claim to be unique in being exclusively physical.
Taking this approach may be a handy compromise, particularly when acknowledging [...] the complexity of the illness and hte research deficit.
I just don't see any other way of achieving an outcome that would would find acce[...]"
