https://www.actionforme.org.uk/uploads/images/2018/05/Draft_Chair_approved_mins_24.4.18.pdf I don't know if this has already been published, it's the April CMRC minutes. I looked it up to see what was most recent. It seems Sonya chowdhurys time and salary is largely devoted to her role and work with the CMRC which might be why she's absent elsewhere. There is a few names listed I am not sure of. It says at the end they've decided they no longer require services of the SMC, so no more SMC representative/attendance. There's also this board paper that the CMRC have been using with MRC etc. https://www.actionforme.org.uk/uploads/images/2018/06/cmrc-rising-to-the-challenge-240418.pdf Interestingly the beginning of it is the same as the parliamentary briefing prepared by groups. It did sound to me AFME ish and I'm surprised to be honest that AFME were given the task of defining ME given their long history of not endorsing any criteria and insisting CFS = ME etc. "What is CFS/M.E.? CFS/M.E. is a long-term (chronic), fluctuating, neurological condition that causes symptoms affecting many body systems, more commonly the nervous and immune systems, which affects all age groups (including children and adolescents) and all ethnic and socioeconomic strata. People with M.E. experience severe, persistent fatigue associated with post- exertional malaise, the body’s inability to recover after expending even small amounts of energy, leading to a flare-up in symptoms. Few make good progress and may recover, while most others remain ill for a number of years and may never recover. People with CFS/M.E. score lower overall on health-related quality of life tests than most other chronic conditions. An estimated 250,000 people are affected by CFS/M.E. in the UK. NICE Guidelines: NICE acknowledges that the physical symptoms can be disabling. NICE identifies three levels of severity: Mild: Are mobile, can care for themselves and can do light domestic tasks with difficulty; Moderate: Have reduced mobility have usually stopped work, school and are restricted in all activities of daily living and Severe: Unable to do any activity themselves, are often unable to leave the house, depend on a wheelchair for mobility and experience severe cognitive difficulties. " There's three pages of stuff very worth reading. I've just quoted down to their section on NICE's three levels, as that completely erases my level , level 4 bedridden. The rest is arguing their case for the future they envision of a dementia platform and a modified version of MEGA forming a CFS centre, tying in with NIH stuff. There's also this presentation https://www.actionforme.org.uk/uplo...stems-medicine-board-presentation-240418.pptx Lots to read. The most interesting part is a letter from the chief medical officer to Stephen Holgate expressing interest in a research collaborative and wanting to meet, along with Jeremy hunt. This is I assume what iime were alluding to in a post discussed here: https://www.s4me.info/threads/13th-...nference-1st-june-2018.532/page-10#post-79813 I regularly check social media and haven't seen this put out there, driving forward a Mega study still seems priority. They also want to work with patients on priorities but that's not a meeting in two weeks, but a process it seems, to build on their 2007 work on prorities , I mean FGS are we living in slow motion or something? I don't know whether to be pleased at what's happening, skeptical or annoyed at the P-g about over years until this apparent "right time " for action.