By David Tuller, DrPH
This month is the start of the second half of my one-year crowdfunding commitment to keep reporting on ME/CFS, so I figured I should review what Iâ€™ve done so far, what I still hope to do, and what changes have taken place during the last six months. So, here goes.
From July 1st through December 31st, I posted here 25 timesâ€”an average of about once a week. The two most frequently covered themes were NICEâ€™s decision-making process and the work and behavior of Professor Esther Crawley. In addition to those two topics, I also posted blogs about Professor Peter White, PACE, the U.S. Centers for Disease Control, and the U.K. ME/CFS biobank, among other issues.
Eight posts were about NICE and the current debate over updating the seriously deficient 2007 CFS/ME guidance. One of those posts involved documents obtained through a Freedom of Information requestâ€”the reports of the so-called â€œtopic expertsâ€ consulted by NICE. The documents revealed that the agency sought a remarkably narrow range of opinions from â€œexpertsâ€ who expressed solid support for the deeply flawed work of the CBT/GET ideological brigades. Hopefully NICE was appropriately embarrassed by the public disclosure of this anemic effort to seek outside advice on its decision-making.
In the case of Professor Crawley, the posts included extensive critiques of her ethically challenged 2011 school absence study and her recent absurd investigation of the Lightning Process, plus several entries about my encounter with her at a lecture and my subsequent dispute with the University of Bristol. I really prefer to focus on bad science rather than personal disputes, but I do think it is important to call out researchers who attack critics as libelous harassers rather than answering very legitimate questions. It is also important to call out universities and other institutions that enable this sort of unacceptable and anti-scientific behavior.
As part of my project, I spent mid-November to mid-December in Europeâ€”four days in the Netherlands, four days on the Isle of Man, and the rest of the time in England. In the Netherlands, I spoke on a panel at a screening of Unrest in Leiden. I also did some reporting on the Dutch effort to review its own guidelines for the illness, which is an ongoing process. I hope to be able to write about that situation soon.
I was invited to the Isle of Man by Celia Marshall, the head of the local ME group, mainly to help with lobbying the government. The Isle of Man, tucked between Wales and Ireland, is an independent nation with about 80,000 residents, although it recognizes Queen Elizabeth as its head of state. As I learned while there, the islandâ€™s parliament, the High Court of Tynwald, was established by the Vikings more than 1000 years ago.
Celia arranged meetings for us with three government ministers. We discussed the issues with them and pressed for more support for patients; the island is estimated to have a few hundred people with the illness. The ministers seemed receptive; I am hopeful that some progress was made. My visit also provided an impetus for news coverage. I was interviewed by two local journalists, who produced excellent radio and newspaper reports on a topic that many people on the island know very little about.
In England, I spent time in both London and in the west of the country. I conducted a batch of interviews that I havenâ€™t yet had time to write up; transcribing interviews and then producing posts takes time. But Iâ€™ll describe them briefly below.
I was interested in doing a bit of research into the 1950s outbreak at the Royal Free Hospital. As it turned out, the hospitalâ€™s doctorsâ€™ association was hosting its annual meeting the week I arrived in London. I stopped by the gathering and spoke with some doctors who were in training during the outbreak, although they were not directly involved and heard only rumors about what was going on in the quarantined buildings. Later on, I visited the lovely old market town of Leominster to interview a Royal Free patient who still suffers from the illness. She was actually the second one Iâ€™ve met. I interviewed another last June as well, during my previous trip to Englandâ€”I still need to write that up as well! Yikes!
I was also interested in further exploring the links between the PACE authors and the insurance industry. During this trip, I interviewed a woman who had struggled to obtain the benefits she was due. When she finally obtained the documentation from her case, she found that Professor Peter White had personally been consulted. The reinsurer involved was Swiss Re, where Professor White has served as chief medical officer. (A reinsurer is an insurance company that provides back-up coverage to other insurance companies.)
In other words, not only was Professor White involved in producing bad research and offering general guidance to the insurance industry based on that bad research, he also actively participated in the decision-making process in specific disability cases. At least based on the documentation in this situation, his role involved asserting that people who had not been through a round of CBT or GET that met his standards should not be awarded benefits. I wish it were possible to document how often he provided this very poor medical advice for claimants legitimately seeking insurance benefits.
Iâ€™ve also been interested in interviewing patients from the PACE trial itself. On my recent trip, I interviewed one participant at length. He made a particularly salient point: Although during the trial he appeared to increase how much he walked, he did so at the expense of engaging in other activities. In other words, even those who increased their walking distance in the PACE trial might have done so by compensating for that extra exertion elsewhere their lives. So as this participant explained, he didnâ€™t in the end engage in more activity overallâ€”just more walking. Iâ€™ll be working to get that piece out as well.
I didnâ€™t get to do everything I intended in these first six months. Specifically, I have not yet written at length about the problems with the Cochrane reviews of treatments for ME/CFS. Because the authorship of the reviews has been dominated by members of the CBT/GET ideological brigades and their comrades, these papers are as deeply flawed as the deeply flawed studies they are based on. That is also something I need to write about soon.
So what has happened in the last six months?
The period started off with a bang, with the U.S. Centers for Disease Control removing CBT and GET from its main recommendations for ME/CFSâ€”a big victory and the impetus for my first post of this six-month period. I have slammed the CDC for not making a proactive effort to disseminate the information; the agencyâ€™s dereliction of this critical public health responsibility is certainly one reason the outdated guidelines remain in place at major medical centers and organizations in the U.S. That needs to change. Julie Rehmeyer and I wrote an opinion piece for STAT, the well-respect medical and science news site affiliated with the Boston Globe, about the change in the CDCâ€™s recommendations and the need for the agency to take more aggressive action to spread the message. (Read my Q-and-A with Julie about her excellent book.)
In the U.K., it was also big news when NICE announced its decision to fully update its CFS/ME guidanceâ€”a surprise, given its preliminary decision to leave the guidance as is. The subsequent uproar must have convinced someone in the top ranks at NICE that the situation has truly changed and that a pro forma decision to ratify the 2007 guidance would not go over well. I will continue to track developments on that front.
The media coverage in the U.K. also seemed to improve during this period. Tom Whipple at The Times wrote an excellent piece about the NICE situation. BuzzFeed U.K. science reporter Tom Chivers investigated the Lightning Process and Professor Crawleyâ€™s absurd SMILE trial; he included a section on Bristolâ€™s decision to complain to Berkeley about my reporting. I met with Chivers while in London; his story appeared on December 30th.* [Correction 1/17/18: This post originally stated that the BuzzFeed story appeared in early January.] The Independent also recently published a decent and respectful piece on the illness. Some of the recent coverage has focused on Jen Breaâ€™s documentary, Unrest, which has helped to generate a significant amount of publicity about the illness. In fact, Berkeley is hosting a screening of the movie, followed by a panel discussion that I will moderate.
Much remains to be done, of course. In addition to covering the above issues, I am hoping to travel to Australia this spring to write about some of whatâ€™s happening there. I also plan to visit Incline Village in Nevada and talk to some of those from the seminal U.S. outbreak there in the 1980s. And I hope to have time to review some of the actual scientific research going on in the U.S. and elsewhere. Iâ€™ve been so focused on debunking the CBT/GET paradigm that I havenâ€™t really touched on some of the critical ongoing efforts to pinpoint the pathophysiology of the diseaseâ€”an important and under-reported area.
Of course, things just happen, so it is impossible to predict exactly what will come up in the next six months. I donâ€™t know that Iâ€™ll get to do everything I would like to. Given the amount of reporting still left to be done, I will be deciding in the next couple of months whether to conduct another crowdfunding campaign to support another year of work after June 30th.