Trial By Error: 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.”

Comments on this entry are closed.

  • Maralyn Hepworth 1 October 2018, 6:33 am

    At last. And all due to David’s persistance to change the attitudes and science. No mean feat. Well done.

  • Graham McPhee 1 October 2018, 8:56 am

    I really think that we are beginning to turn the corner here, and your contribution to that, David, has been invaluable. You have consistently shone a public light on what has gone wrong, and it is that publicity that has made the change. There has been a lot of first-class analysis going on by a wide variety of people, but by pressing the points home, I’m sure you have been a key catalyst.

  • Anil van der Zee 1 October 2018, 9:46 am

    Just lovely to hear and see this paradigm shift. Thanks to you indeed David!

  • Elle See 1 October 2018, 10:56 am

    Wow!

  • Peter Trewhitt 1 October 2018, 11:30 am

    Thank you David for persisting in this challenge and for keeping us all informed.

  • Paul Fox 1 October 2018, 1:30 pm

    Once more, not only are we all in David’s debt, but it is so clear where we would be without him: nowhere.

  • EzzieD 1 October 2018, 1:49 pm

    Wow, that all sounds great. Here’s hoping that real science will finally prevail at the CMRC.

  • Sandra 1 October 2018, 3:08 pm

    Excellent, David. THANK YOU! Let’s hope things keep moving in this direction so that patients can finally get the recognition, respect and help they need from the medical profession and others. Much has been accomplished thanks to your heroic efforts. There is, however, a long way still to go before the root cause or causes of ME is understood and patients receive treatments that truly affect their lives for the better. You have done much to turn the tide making this outcome a greater possibility. ME patients are eternally grateful. Here’s hoping the rest of the medical/research/academic/political world gets on board with the realization of the seriousness of this highly debilitating PHYSIOLOGICAL illness, and of the great need present in the world of those afflicted with ME.

  • Jaime S 1 October 2018, 4:41 pm

    Wonderful!

  • Rochelle Collins 2 October 2018, 12:11 am

    Thank you, so much, David, for your dedication to pursuing the truth and shining the light on all the damaging lies and deficiencies of the PACE paradigm. Finally, people are listening and taking note, and we are starting to see the ship righting it’s course, quiet as it may be, toward the biomedical research focus that we have needed for decades. You are one of my true heroes! Thank you!

  • Barbara Lees 2 October 2018, 4:42 am

    All I can say, David, is THANKYOU!!

  • Nancy Blake 2 October 2018, 7:40 am

    This sounds fantastice, reported with David’s usual careful accuracy. We need to judge by what follows: Holgate has cooperated with Wessely & Co in previous years. At their first conference, they pulled in Montoya, and kept PD White carefully under wraps. If they are still manipulating behind the scenes, then they are making careful use of Ponting, and of David, but will ensure that nothing of import comes out of this. If the papers are produced and genuine efforts at getting funding for biomedical research take place, that would be brilliant, and convincing that things have really changed. It is great that the Science Media Centre have published criticisms of PACE…up to now, that agency have been a major part of the reason that, for example, the Invest in ME Annual Conference in London is never reported in UK mainstream media. If that changes, too, we are making real progress.

    The thing to watch now is the progress of the NICE Guideline Review, which up to now has indicated that the BPS model adherents are still fully in control. There can be no other reason why GET has not been taken out of the Guidelines already. If that Guideline does not change, the BPS model still rules, in the UK and internationaly – NICE has enormous influence (see Australia, Japan, where excellent research has not deleted the BPS model from govt treatment recommendations.

    I know that David will be keeping track of this. Here is a link to my contribution:

    http://www.positivehealth.com/article/cfs-me/what-can-we-expect-from-the-current-review-of-nice-guideline-cg53

  • JL 5 October 2018, 4:50 am

    Thanks for going and keeping an eye on proceedings, David. It is good to hear about what you experienced and heard there.

  • Anne 8 October 2018, 5:14 pm

    Many thanks once again for going to bat for the ME population. It is very hard to hear about you squabbles with other Doctors. So hard to believe that GET/GBT therapy is still occurring in some places/countries. I mostly follow Dr. Ron Davis’s work -he is from Stanford as you know and the “Open Medicine Foundations” work . Also, fairly new to the seen is Dr. David M. Systorm, from the Women’s Hospital of Boston. He is a Pulmonary and Thorcic surgeon who is an adjunct professor at Harvard University. He is investigating Pyroidostignine, a treatment used for myasthenia gravis. A person with ME can take a skin biopsy to look into the condition. I do not know all of the in’s and out’s of his work on this. Something maybe you could look into and report back in Oct 2018-Dec 2019 or later if is work/research on this is taking longer. I will try to investigate what he is up to as well. Most ME people have not heard of him. He has no relatives, wife, sons, or daughters with ME (he is one of the few who does have ME nor does he have a family member with ME, who is doing research on it). He has never come at this illness with a psychiatric perspective, either.