Minutes of UK CFS/ME Research Collaborative Executive Board Meeting 21 March 2017

[user9876]

If this Situation was a floundering business there would be action committees, reviews and then an action plan to bring a turn around within a specific time frame.

I think a business would take much simpler action of changing the senior leadership team - that is sacking those execs who were seen as failing.

 

[Cinders66]

I think a business would take much simpler action of changing the senior leadership team - that is sacking those execs who were seen as failing.

I think it's the compromised bigger picture though. In the bigger NHS world CFS is acceptably conflated with ME a multitude of definitions used and also grouped with IBS and back pain as MUS. NHS clinics are based on CBT and GET, the PACE trial is still regarded as gold standard. In the real uk NHS world Esther crawley is top CFS pediatrician doing highly funded NIHR research with a definition devised by NICE itself and no one in uk thinks having a broad CF spectrum is a problem. Sacking Crawley would be tough, unless you mean scrapping Holgate too and an entirely new approach?

On its own, The CMRC could follow the USA lead of stricter criteria; actually fund research based on CCC which pwME find acceptable, they could allocate another couple of million up for grabs for an illness they reframe as SEID or ME/CFS to get a good foundation and change how the illness is viewed. But they seem reluctant to move away from initially retaining a CFS name, the broadest criteria ( however unappealing to serious researchers) and then eventually subgrouping that. MEGA therefore fits the bill as the one big effort, the horse they back and the plan that will meet the objectives in several years.

Holgate seems to have expected the field to just expand after 2012 but doesn't see the way the establishment has set up this illness, a way the CMRC pursue also, is the thing impeding progress.