The CFS/ME Research Collaborative Conference

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.

When I first arrived at the conference, I saw Professor Ponting at one of the front tables and walked over to introduce myself. I again thanked him for his role in turning the CMRC around. “We’re the ones who should be thanking you,” he said (more or less). Well, maybe I’m a sucker for praise, but that sure won me over! It was not something I ever thought I’d hear from the leadership team at the CMRC.

People were mum on whether the former vice chair left the group voluntarily or was eased aside because of the mounting controversies over her problematic research, her unacceptable behavior in professional settings, or other reasons. Besides the unsupported charge of libel she levied against me at her inaugural lecture in 2017 as well as at a nephrology conference, she also claimed during a talk I attended at Exeter University last November* [Correction: I originally wrote December] that Bristol had sent me a cease-and-desist letter. (Cease-and-desist from doing what, exactly? I was not quite sure what offenses, besides libel, I was being accused of.) I don’t know whether she believed this to be true when she said it; it certainly seemed like she did. In any event, it was false. As Bristol’s legal department confirmed a week later in response to my inquiry, no such letter was ever sent.

Surprisingly–or perhaps not–neither the former vice chair nor anyone from Bristol has ever explained or apologized for these public statements. Instead, the Bristol vice chancellor’s office has made at least three formal complaints about my work to the chancellor of my own academic institution. Such complaints of course are groundless; if they were legitimate, I would no longer be working on this project under Berkeley’s aegis. Frankly, I have been shocked that a major UK academic institution has responded in such a disgraceful manner to my accurate critical assessments of research rife with methodological and ethical missteps.

Meanwhile, at the conference itself, Professor Stephen Holgate, who established the organization five years ago and remains the chair, launched the event with many of the right biomedical words. (Unfortunately, I have misplaced my notes from his introductory remarks.) Professor Holgate is an immunologist and asthma expert at the University of Southampton and has strong links to the UK’s Medical Research Council. Although he and the rest of the CMRC executive committee received scathing e-mails from me last year in the course of our dispute, Professor Holgate could not have been more gracious or welcoming to me. He waved off as unnecessary my efforts to explain that I had sent the e-mails in the course of defending my professional reputation. All in the past, he indicated.

I’m not going to review all of the science presented. The talks were complex and I had hoped to be able to watch the videos before opining to make sure I wasn’t misquoting anyone or making really stupid mistakes. As of this writing, the presentations have not yet been posted—or if they have been, I haven’t been able to find them. I assume they will be in the near future. In any event, my role in this saga has been more about getting rid of bad biopsychosocial research than assessing the merits of this or that biomedical approach, so for now I have mostly left that domain to others engaged in this field. Many in the patient community, in fact, are much smarter at assessing the scientific details than me.

Having said that, the two-day schedule was packed. The first presenter, Dr Nina Muirhead, gave a particularly compelling account of her personal journey–from Oxford-trained dermatological surgeon and mother of two to bed-bound ME/CFS patient living with her parents. In 2015, a bout of pneumonia led to two hospitalizations. The following year, she contracted glandular fever, which triggered a downward spiral that left her completely incapacitated. She consulted with more than a dozen doctors before finally receiving a diagnosis.

In an online article related to a screening of Unrest at Oxford last January, she described her condition: “I was bedbound for three months, unable to read or even watch television. I was housebound for six months and still require a wheelchair to leave the house. Sometimes I am exhausted by just brushing my teeth. I am unable to work, I lie in bed and have to pay someone else to look after my children.”

Although she remains seriously impacted, Dr Muirhead told the CMRC audience that she has now been able to return to the surgical work she loves on an extremely limited schedule. Speaking from her wheelchair, she recalled that her medical training included no information about the illness. She expressed some hope that attitudes toward and awareness of ME/CFS were finally changing and described her current efforts to reform and update medical education curricula.

“I was not taught about ME/CFS in medical school,” she said. “Prior to two years ago, ME/CFS wasn’t on peoples’ radar. They weren’t even thinking of it, and now we’re going from that unknown unknown to this known unknown. We know that there’s lot of questions being asked and we’re starting to get the idea that this is an important biomedical illness.”

Dr Muirhead’s talk was followed by in-depth presentations on such topics as microRNAs, chronic pain, the UK ME/CFS Biobank, brain imaging, the role of Big Data, inflammation, cellular metabolism, inflammatory processes, and so on. For now, I will leave it to others to discuss and debate the significance and relevance of the biomedical material presented.

On the second afternoon, the group split into three separate workshop sessions. I attended the one on research priorities, which was led by Professor Ponting. The group coalesced around the idea of seeking up to ten million pounds in funding from the MRC and perhaps other funders for a consortium of parallel initiatives. The four key areas selected as funding targets included: immunology, mitochondrial function, -omics and Big Data, and education.

This sounds like a fair amount of money, but let’s remember one thing: The MRC decided to waste millions of pounds on PACE and has continued to throw money at bogus research into behavioral and psychological treatments. After the conference, I asked Professor Ponting if he thought there was a serious chance that this level of funding would become available. “Is this realistic? I do not have a clue,” he said. “Funders remain completely unconvinced that they need to fund something until the point at which they change their mind.”

And what was Professor Ponting’s assessment of the presentations? “The science covered a lot of ground, spanning from preliminary findings to what looked to me to be robust findings,” he noted. “In the future it would be good to tilt the balance more towards definitive findings.”