• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Dr David Tuller: The CFS/ME Collaborative 1st Oct 2018

Countrygirl

Senior Member
Messages
5,405
Location
UK
http://www.virology.ws/2018/10/01/trial-by-error-the-cfs-me-research-collaborative-conference/

Trial By Error: The CFS/ME Research Collaborative Conference
1 OCTOBER 2018
By David Tuller, DrPH

So I attended the CFS/ME Research Collaborative conference two weeks ago in Bristol. The two-day event was a refreshingly PACE-free zone–as far as I could tell, I was the only person who mentioned that piece of crap in public comments. (Although I wasn’t on the schedule, CMRC vice chair Chris Ponting, a professor of genetics at University of Edinburgh, suggested that I speak for a few minutes at the end of the first day.) Other than that, the event focused almost exclusively on biomedical rather than psychiatric issues. No one promoted treatments based on the theory that deconditioning and “unhelpful” illness beliefs were root causes of the illness. None of the presenters endorsed the biopsychosocial approach.

Before I went, people asked me if the CMRC’s former vice chair planned to attend. I had no idea. In fact, it seemed that no one from either Bristol University or the Bath clinical services run by the former vice chair decided to come. I did not hear anyone expressing disappointment or concern about that. In fact, the former vice chair’s absence was palpable–almost as palpable as her presence would have been. As with PACE, no one appeared to mention her during the public events. That is, except for me, when I noted in my five minutes that I could not attend the previous year’s event because the former vice chair had falsely accused me of libel.

Thankfully, my conflictual relationship with the CMRC ended earlier this year when Professor Ponting took over the vice chair slot. I knew things had changed when I read the positive comments that he provided to the Science Media Centre about the PACE reanalysis paper published in March. (I was one of the paper’s seven co-authors.) I immediately e-mailed Professor Ponting to express my appreciation for his honesty and integrity—both of which have been in extremely short supply among many of those involved in this field of research. I also expressed the hope that I would now be able to have a normal, collegial relationship with the organization.