Trial By Error: My Six-Month Review

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 I’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 times—an average of about once a week. The two most frequently covered themes were NICE’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 request—the reports of the so-called “topic experts” consulted by NICE. The documents revealed that the agency sought a remarkably narrow range of opinions from “experts” 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 Europe—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 island’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 haven’t yet had time to write up; transcribing interviews and then producing posts takes time. But I’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 hospital’s doctors’ 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 I’ve met. I interviewed another last June as well, during my previous trip to England—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.

I’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 didn’t in the end engage in more activity overall—just more walking. I’ll be working to get that piece out as well.

I didn’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/CFS—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 agency’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 CDC’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 guidance—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 Crawley’s absurd SMILE trial; he included a section on Bristol’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 Brea’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 what’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. I’ve been so focused on debunking the CBT/GET paradigm that I haven’t really touched on some of the critical ongoing efforts to pinpoint the pathophysiology of the disease—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 don’t know that I’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.

Stay tuned!

Comments on this entry are closed.

  • Wendy Boutilier 15 January 2018, 1:38 pm

    Don’t worry. None of us plan to fire you. You have done so much for us and given us hope that we can work together to help ourselves.

  • Valentijn 15 January 2018, 1:43 pm

    I don’t know if you’re aware, but Simon Wessely founded the Cochrane mental health group which laid claim to ME/CFS. Might help in understanding and explaining that particular boondoogle 😛

  • Paul Fox 15 January 2018, 1:57 pm

    David, I have enjoyed every word of your work. Its quality and clarity are probably unsurpassed, anywhere, and in any field.

  • Sleepyblondie 15 January 2018, 1:59 pm

    Thank you for everything you have done and everything you plan to do. I hope you will stay with us and that you will decide to conduct another crowdfunding campaign for the following year, we need help and you have been a great help so far. Thank you again

  • Olivia Rowe 15 January 2018, 2:10 pm

    David, I’m confident I can speak for many, many PwME in saying thank you for all you have done so far and everything you’ll go on to do for us.
    You are worth every crowdfunded penny and if you decide to crowdfund again (and I really hope you do) I’ll be delighted to contribute.

  • disqus_joh5XNAv6w 15 January 2018, 2:19 pm

    David, FYI- DR Sarah Myhill is making a move against PACE authors -to the GMC – she has extensive knowledge of both mindset and internal workings of the GMC ……

    ** DR MYHILL HAS COMPLAINED TO THE GMC ABOUT THE PACE AUTHORS **
    *** SHE WANTS YOUR HELP ***
    **PLEASE DO COPY YOUR LETTER OF SUPPORT TO
    cr648@hotmail.co.uk – if you feel comfortable with doing so**

    PLEASE SHARE THIS POST AS WIDELY AS POSSIBLE. THIS COMPLAINT IS IN THE PUBLIC DOMAIN.

    The GMC is the UK doctor’s regulatory authority – the General Medical Council. Patient support is sought from all patients who feel they have been harmed by PACE. You do not have to be a UK citizen.

    PACE is the study ‘Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. (2011)’, published in The Lancet.

    SEVEN other medical doctors are supporting this complaint but wish to remain anonymous – they are concerned about the impact of such “whistle-blowing” on their future careers within and without the NHS.

    The letter of complaint is attached in a Word document – there are 2 parts of this document – Dr Myhill’s actual complaint letter and then at the end, a PACE patient support letter template.

    The complaint is one of Fraud, namely:

    –fraud by false representation
    –fraud by failing to disclose information
    –fraud by abuse of position

    There are also numerous breaches of:
    –GMC Guidance on Good Medical Practice
    –GMC Guidance on Good Practice in Research
    –GMC Guidance on Consent to Research

    Dr Myhill is asking for your help.
    Please read the letter of complaint and also the ‘PACE patient support letter’ – they are in the same file as attached.

  • leelaplay 15 January 2018, 2:26 pm

    You’ve done so much David, and as you say, so much more to do. I look forward with relish to your exposure of the Cochrane Review. It is responsible for much of the damage worldwide as many medical orgs subscribe to it.

  • jimells 15 January 2018, 2:30 pm

    “I wish it were possible to document how often he provided this very poor medical advice”

    It is. It’s called “discovery” and is a standard part of civil litigation.

    After decades of ignoring us, real researchers and journalists have stepped up to the plate. Now it’s time for lawyers to do their part. Litigation finally brought the tobacco industry to heel. It can cut insurers and psychobabblers down to size as well.

    As for me, I am setting aside money for Dr Tuller’s next fund-raising campaign.

  • ShannonTye 15 January 2018, 3:11 pm

    You have been tireless, and tirelessly brilliant, on our behalf. Beyond the call of duty, David. Thank you so much.

  • Paul_Watton 15 January 2018, 3:12 pm

    Thank you David.
    Your blog has become a real highlight in my week and a great source of encouragement.
    Well done.

  • Peter Trewhitt 15 January 2018, 3:32 pm

    I will comment properly later, but just wanted to react to the PACE participant’s comment “So as this participant explained, he didn’t in the end engage in more activity overall—just more walking”.

    When monitoring my own total activity during any intervention or attempting to change my own behaviour, I have at periods recorded everything I did in 15 minute blocks over periods of several months at a time. That in itself is very demanding, but it also clearly indicated that I might increase a particular activity being focused on but this was only achieved by reductions in other areas. Interestingly those reductions were not necessarily obvious to myself before analysing the data.

    (Note, this level of recording was only possible when I had mild/moderate ME and the intellectual capacity to develop coding of different activities and establish/use a data base. Now with severe ME it would be too demanding.)

  • Samuel Eglington 15 January 2018, 4:24 pm

    Did you learn anything about Ean Proctor when on the Isle of Man? it is a historic abuse case that should be exposed further given Simon Wessley’s roll in it as a senior registrar at the time and his new role reviewing the mental health act now.

  • Sandra 15 January 2018, 4:30 pm

    So grateful for all you have done and will continue to do to change the erroneous narrative about this disease that has persisted for so long and has harmed so many. A new day is dawning for ME patients, and you indeed have had a great deal to do with that. Know that you’ll have my support and my dollars if you decide to do another crowdfunding. Kudos to you, David, for your excellent work.

  • pinklil 15 January 2018, 4:31 pm

    Well what a 6 months! I hope you feel you’d like to tag along with us all longer than the 1 year anniversary in June. Huge thanks for the immense amount of work you have completed thus far.

  • Peter Trewhitt 15 January 2018, 4:40 pm

    David, I wanted to add to the words of appreciation for your input into analysing ME research and reporting on it.

    Your blogs and talks are a valuable contribution and fortunately particularly timely. It feels like the last year has seen a lot of steps forward. Although the PACE apologists are still wedded to their false cognitions and bad science, there are other doors sufficiently ajar to be pushed a bit more open, Including the US Centres for Disease Control and NICE here in the UK. It is important to have more people willing to robustly comment on such as the work of Prof Crawley. It will be good to have your comments on the Cochrane reviews, especially before the NICE reappraisal of their ME guidelines. I also look forward any reviews of the biomedical studies, especially as my own cognitive limitations make it hard to assimilate unfamiliar terms.

    You are undoubtedly giving value for money to those who crowded funded in support of your work, and I hope you are giving serious consideration to further crowd funding for further involvement after the next six months are completed.

  • Barry 15 January 2018, 4:47 pm

    “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 have no idea if that is actually illegal, but it surely feels to me like it should be.

  • anniekim 15 January 2018, 6:17 pm

    Thank you for all the great work you have done and I would be delighted to contribute to another crowdfunding campaign if you decide to go ahead with another one. Money well spent!

  • Phil Murray 15 January 2018, 7:02 pm

    Thanks David, another excellent read! Always tuned, as you know! Very interesting stuff.

  • Sarah Rake 15 January 2018, 7:18 pm

    And today Dr Sarah Myhill submitted a blistering formal complaint to the GMC outlining the harms done to patients by the PACE trial and the many kinds of fraud perpetrated by its authors. Thankyou so much for all you do, I’m already saving up to contribute to your next year.

  • Erik Johnson 15 January 2018, 9:43 pm

    https://uploads.disquscdn.com/images/13f245bf4ab1896e76bf0f21b153e8a87c8dd0052cf38f99c9b6b0123a15d733.jpg

    When CFS was coined, the CDC announced that the purpose of the new syndrome was to determine if the Tahoe outbreak was the same as the Royal Free Hospital outbreak.

    It’s amazing that not only was this never done, but CFS got pushed so far backwards that people don’t even remember there was once a time when CFS was an entity acknowledged by the CDC to have everything Ramsay ME did, plus all of Cheney and Peterson’s new evidence.

  • Rob Wijbenga 15 January 2018, 11:11 pm

    close to you at Stanford maybe the most important ME-research is taking place. Did you speak with Ron Davis already?

    You’ve been continuously busy as a bee. Me thinks It would be great if the community would continue to ‘have’ its ‘own’ reporter for a longer period of time, especially when it’s such a proficient one.

  • ScooterCat86 16 January 2018, 12:13 am

    I am looking forward to the Royal Free Hospital interviewees. : )

  • Bill Clayton 16 January 2018, 3:24 am

    Thanks for the update David. As always, added to my ME site at http://www.York-ME-Community.org.

  • Olivia Beatty 16 January 2018, 3:54 am

    Love your intelligent, rational , logical articles.

  • Ee 16 January 2018, 5:05 am

    Whilst I agree with your goals, and I agree a lot with many of the points you make, your blog posts often make it look like your goals are to attack and bring particular researchers into disrepute. That undermines your credibility, and I don’t think science will move forward that way.

  • Fionn F 16 January 2018, 5:59 am

    Just to follow up the comment that disqus_joh5XNAv6w made below. If you still have a contact for the person who had problems with her health insurance from Swiss Re, it would be wonderful if you could pass on the details of Dr Sarah Myhill’s fraud complaint to the General Medical Council about the PACE trial.

    The GMC will find it easier to bat away these allegations if they are not supported by concrete evidence that people have suffered as a direct consequence of PACE, and one way in which people may have suffered is being denied insurance.

    Dr Myhill has included a pro forma for patients’ use at the end of her letter, to make it easier for sick people to complain. It can be found on a Facebook page called Support Dr. Sarah Myhill, as well as being posted on the pages of several UK-based ME groups and charities.

  • Peter Trewhitt 16 January 2018, 6:58 am

    I understand you may feel uncomfortable with what seems like personal attacks,

    However when researchers manipulate their data after the fact to achieve their preffered outcomes, when researchers decline to enter into rational scientific debate, when they seek to misrepresent valid scientific criticism as malicious harrasment, when they present faked evidence for harrasment claims, when they seek to conceal their own financial conflicts of interest, when they seek by underhand means to undermine the careers of their academic critics, when they libel and slander critics on public platforms and in the media, when they ignore scientific evidence to inflict real harm on patients, when they fail to obtain appropriate ethical approval for research on children, when they abuse the child protection system to impose their unproved treatments, when adults are sectioned to impose their unproved treatments, when they participate in the denial of benefits to ill and disabled people based on their unproved theories, … … …, there comes a point when politeness and tact are no longer appropriate.

    The problems with the majority of the PACE authors are now largely historical, but it is important to reverse the ongoing harm done by their theories and treatments still widely regarded as appropriate by policy makers and medical practitioners. However there are still researchers, primarily in Holland and the UK extending this bad scientific research, and individuals such as Prof Crawley at Bristol using some if not all the underhand and unethical practices raised above.

  • Dominique 16 January 2018, 8:21 am

    Wow, that sure seems like a hellava 6 months! Thank you for your continuing commitment and work.

  • soph 16 January 2018, 9:17 am

    over a year (or maybe even two, my brain fog gets easily confused about time) I spoke to a woman on FB whose father was a doctor at the Royal Free during the outbreak, he contracted it himself, and she had other interesting stuff to tell but I can’t find that conversation now ;(

  • Guido den Broeder 16 January 2018, 1:29 pm

    About the walking distance: yes, this is well known, I wrote about this when PACE came out and long before as well. It is indeed possible to train one specific activity, up to a (low) point, but at the expense of other activities. This goes for ME as well as other diseases, so you’ll find it among CFS patients, too.

  • Guido den Broeder 16 January 2018, 1:34 pm

    The researchers you should visit are those from before CFS. First of all Byron Hyde in Canada.

  • Lois Addy 17 January 2018, 2:04 am

    it’s not so much that particular researchers are being brought into disrepute, more that particular researchers are apparently not anywhere near best practice, and move the goalposts so that their results are unreliable and unsustainable. So yes, it’s critical. But then so would any analysis be that says ‘ok let’s see if this bucket holds water’ and when the result is ‘oh it has no bottom, it doesn’t hold water at all’ the disrepute comes when the owner of the bucket says it does actually hold water. Either it does or it doesn’t. That’s what is happening here. Changes are being made mid trial that completely wreck them so that the results aren’t worth the paper they’re written on. Just look at the original Pace outcomes (per the results obtained via tribunal) vs. the results released based on the changes they made. If you switch horses midrace, you risk falling off… they fell off.

  • Lois Addy 17 January 2018, 2:07 am

    I’ve spoken with David personally about my experience of the Trial. He is not trying to wreck careers, he is analysing the research – he can’t be blamed for it being such poor quality! that’s shooting the messenger! He is very keen that as a patient community we get answers and treatments that dont’ harm us. Personally I feel that need of the patient community is paramount and that researchers who torture their data and that as a result, the patient community is (and has) been subject to highly questionable treatments that have harmed many temporarily or permanently should be saying ok yes, this fell short, let’s do it differently next time.

    And that’s what’s missing. All I see is researchers saying time and time again, we are right and do not question us. Which I find bizarre!

  • Lois Addy 17 January 2018, 2:09 am

    and that’s what matters. researchers in ALL fields should be saying ok, let’s do it differently. Let’s go for best practice, and let’s accept (like the Rituximab guys did) when the results aren’t what they hope for, that they are what they are. and not twist the rules and data to fit the presumptions rather than the reality.

  • Ee 17 January 2018, 2:36 am

    If researchers are indeed engaging in all those tactics though, by attacking particular researchers instead of criticising science more generally, you’re only playing into their tactics and their efforts to portray you as not engaging in legitimate scientific criticism.

    This is also a systemic problem. Attacking people when you’ve got a systemic problem doesn’t work.

  • Jan Wade 17 January 2018, 10:42 am

    Absolutely right. WHERE ARE THE LITIGATORS??

  • Janneke 18 January 2018, 10:00 am

    well, I think every MEpatient would be satisfied with a name like Ramsay’s disease,
    and it would spare us the next series of letters which would not get the totality of this disease.

    and it would be a tribute to this doctor, who was a real doctor, I’m gonna read that book as soon as I have money and energy to do so

  • Jen 19 January 2018, 8:31 am

    Firstly, Thanks David for all your hard work.

    To hear about the Royal free would be very interesting and the two psychologists who later reported it as mass hysteria and their links.

    I had the same experience of GET as the person in the PACE trial. At the time I could walk 10 minutes a day, temp part time and I had a social life. To keep up with the GET I slowly had to drop everything else I was doing. And I mean everything. About a month in I was literally sleeping inbetween sessions. I had to give up everything just to perform the GET. Then I started missing sessions as I couldn’t even get out of bed. They revised the increments so I just had to do what a did the week, before, not any extra, but I couldn’t cope with that and they were quite stroppy that I wasn’t increasing the activity. Then I had the worst crash I ever had with the ME and I went from mild with moderate patches to severe. I was completely bedridden for at least a year and my mum kept saying she wanted to take me to the hospital as I was so ill, but I said it was the hospital did this to me! If it hadn’t have been for my parents I would have starved to death. It’s been over five years now and I have never recovered my pre GET abilities. I am doing well with the Myhill protocols and I’m now mostly housebound, but at least I am no longer completely bedbound, but the damage these people are doing to patients is criminal. I wish I had never done the GET. The irony is I had to fight to get the GET. I trusted the science of PACE and I just feel cheated now. I no longer trust science because of PACE and the only way science can redeem itself is to purge bad science from the profession.

    I do believe if I had had the correct advice from the beginning I could have had a chance of recovery within a couple of years, or at least to have stabilised the illness in the mild phase and managed it and keep working part time. It’s taken my livelihood, my career and basically my personal life. Patients need to be protected from harm and given the correct advice. I think it’s vital that patients are stabilised before the illness gets so severe there is not much that can help. The amount of unnecessary suffering this BPS bullshit has caused is utterly despicable.

    The Peter White stuff was very interesting. I think the private eye did some short articles on the insurance links of the same people advising the DWP. These are very powerful people with powerful friends so do I do worry they will try to silence you on this, but I am so very grateful that you haven’t given up and continue to fight the bad science and corruption.

  • Nina 2 February 2018, 1:44 pm

    Thank you so much for your hard work, David. It’s appreciated beyond words. I certainly hope you will decide to do another crowdfunding campaign. We need you in our corner!

    I’m not sure if you are aware of this, but patients in Germany just got an update of their own equivalent of the NICE guidelines. They are absolutely horrific and heavily rely on White et al to promote their deconditioning model. The authors dismissed every biomedical study as “irrelevant” and have displayed a downright contemptuous attitude towards patients and their advocates. One of the groundbreaking additions is the advice for patients to quit smoking. If the tide is changing, it hasn’t reached German shores yet.

  • GQ 5 February 2018, 11:33 am

    Thank you Dr Tuller for “vexatiously” advocating for thousands of disabled ME sufferers who have have been harmed for years by the Biopsychosocial psychiatrists and exposing this major medical abuse and financial fraud.