CMRC - "Report of the fourth Annual Science Conference, 13/14th Sept 2017"

52 page long PDF report at http://www.meassociation.org.uk/wp-...icial-Research-Conference-Report-Jan-2018.pdf

 

Advancing Crawley's career?

 

Holgate has CMRC on track so merger with BACME will be all part of the big picture no doubt a shame as there were hopes of honest neutrality rather than providing apologies for funding the biopsychosocial model by the MRC.

 

How's a person with ME to read that lot I wonder? A page a day for a year? Thanks for posting though

I don't think there will ever be an end to funding for bps model research this side of the end of the world/civilisation as we know it. What I'm hoping for is a complete reversal of of the balance of funding. The lions share to biomedical, and a small fraction for bps.

 

I just skimmed through to the end:

Right... what have we been saying about PACE Stephen? The most important voice... what was it saying? Did you listen?

It's ridiculous for him to come out with that line at this point (unless it was part of an apology).

 

It might be a good thing that psychosomatic researcher organizations have been merging. AYME didn't only merge with AfME, but the quack advising AYME was kicked off the bus, despite being the pediatrician for the child of AfME's chief executive.

BACME and CMRC are almost purely composed of quacks, so that isn't going to change, but at least it would then be one organization acting and speaking out against patients instead of two organizations. And it certainly looks worse for them if they're one tiny extremist group in the background, versus the numerous patient charities and other organizations committed to real science.

Their numbers and their influence are dwindling.

 

The small picture. ME/CFS is now an interesting or even a hot topic to the science world. A CMRC/BACME consortium belongs to another era.

 

That's how I'm interpreting this aswell. AYME and AFME merger was out of necessity and I'm sure this one is aswell. They're steadily losing backing, which is great for us.

 

I read a chunk of this on the train home yesterday (first day back commuting in seven months following a relapse!). There's some good, some bad in there. As somebody who is in the minority that supports MEA engagement with CMRC, I hesitate to focus on the bad but the FITNET report did jump out, specifically:

I seem to recall this stat had been debunked - that it was an artificial timepoint and long-term follow up showed similar recover rates? Can anybody provide a link for/against that assertion?

 

I just skimmed though this and pulled out a few bits that might be of interest to others. I've avoided pulling out bits mentioned by others, or referred to by Tuller in his blogs (about MEGA not being funded, etc).

Something about Joint Hypermobility Syndrome at Gabrille Murphy's CFS service:

But while most people I know with JHS value the diagnosis as a way of avoiding the CBT/GET that comes with CFS, they say:

I've not quoted from the NHS-FITNET stuff, as someone else already did.

Some stuff from Crawley about her ALSPAC work - isn't that just diagnosing 'CFS' with fatigue questionnaires? And then being excited by the fact that a tendency to answer those questionnaires negatively is correlated with a tendency to answer other questionnaires negatively?

While the following all sounds good, it's from someone at Bristol Uni who has previously said "We have close links to the School of Social and Community at the University, working with Dr Esther Crawley who is the clinical lead.”

 

"One delegate commented: "ME is more than just fatigue. Is the CMRC a fatigue collaborative, or an ME collaborative?""

We don't have a name for this delegate then?

 

We don't have the answer either!

 

Very true although tbh I was expecting to have to wait for hell to freeze over for that