Following your last Blog post on Fitnet NHS, I submitted the following complaint to the National Institute for Health Research:
"I would like to bring to your attention, the concerns and criticisms of the Fitnet NHS trial (being conducted by Prof Esther Crawley & colleagues at the University of Bristol), contained in the following article by Dr David Tuller: http://www.virology.ws/2016... I would also draw your attention to the "Fitnet" area of the University of Bristol website, which, in my opinion, propagates misinformation - particularly in the "flyers" promoting the trial - with the specific intention of biasing the outcome of the study: http://www.bristol.ac.uk/cc... I would therefore welcome your comments following a thorough investigation of the detailed content of this complaint."

Yesterday, I got the following reply:
"Dear Mr Watton,
Thank you for your email regarding the FITNET-NHS study. The content within your email was thoroughly reviewed. All applications to the HTA Programme undergo a comprehensive assessment as described in the ‘general assessment criteria’ document available on our website at http://www.nets.nihr.ac.uk/.... This includes review by both professionals and members of the public. We are content that the FITNET-NHS trial has met the criteria listed. We are also content the study is accurately following NICE guidelines.

We are unable to enter into further correspondence on these issues, but we thank you again for voicing your concerns.

Best wishes,
Maggie Shergill
Research Manager (Monitoring) | NIHR Evaluation, Trials and Studies Coordinating Centre (NETSCC)"

What hope is there when a national institution, charged with overseeing research, is incapable of understanding what is required in order to ensure that research is done well.

David, thank you for another great post. The amount of effort, energy and talent that has been used to show what is going on is incredible.

In my opinion, the upshot is:

1) They can always quote the PACE trial because it has not been retracted from The Lancet
and
2) The PACE was a fraud and, until they're brought up on fraud charges, it would appear that nothing will change.

“Be sceptical, ask questions, demand proof. Demand evidence. Don't take anything for granted. But here's the thing: When you get proof, you need to accept the proof. And we're not that good at doing that.”
Michael Specter

Great post, David. When reading about the machinations of the BPS school, this quote from PJ O'Rourke often comes to mind:

"Politics is the business of getting power and privilege without possessing merit."

Crawley, Wessely, Sharpe et al aren't interested in helping patients or undertaking serious, meaningful research. Rather, their sole interest is in gaming the system to gain power, funding and prestige. And, as we've seen, they are exceptionally good at it. They even peer-review each other's work and approve new funding applications for yet more of their clique's terrible research.

In this way, mediocre researchers and incompetent physicians have been able to obtain sinecures, knighthoods and build taxpayer-funded empires far beyond what they would have merited on their talents and abilities alone.

The only way to challenge them is tear down the whole stinking edifice by continually embarrassing them and those that control their purse-strings. In this, you are doing an exceptional job.

The more I read your 'Trial by Error' serie, David, the more I wonder about how medicine, in particular psychiatry built up this empire where patients are less human than them, where patients have less rights and less knowledge than them. This empire needs to be defeated. Sadly, 25 years or so this empire reigned on ME, and made us the patients its victims.

It is truly unbelievable that here we are in 2016, still waiting for biomarkers, still waiting for a first FDA approved treatment, and still hoping that the other side of medicine, and science and politics stand up and say something, and especially stop the bad science from happening, from publishing, and from reaching med schools and doctors offices from all around the world.

i truly hope David that we have reached the tipping point and tht things will get much easier from here. Thank you as always for telling the truth.

When I first heard of FITNET, I misread it as FITBIT, the line of wrist pedometers, and thought "oh good, they're actually going to use objective data." Wrong! Of course they won't because they wouldn't be able to cram the results through statistic filter and force them to fit their narrative.

Thanks again to David Tuller. Keep the pressure up, keep pushing back, keep them honest.

A concise and logical article exposing the illogical mindset of the GET/CBT crowd and their attempt to fake science to fit their own ignorance and pad their pockets. Thank you, Mr. Tuller!

Many thanks for another informative blog, uncovering yet more irregularities with the FITNET studies. They just keep on giving, don't they? One thing I don't think you've mentioned yet is a couple of surprising statistics concerning the patients in the 2012 Dutch study. Classic M.E. usually has a sudden onset triggered by a virus or other infection, but if you look at the patients on this study (see table 1), about 60% of them had gradual onset and only about 18% started with an infection. This suggests (surprise, surprise) that we may be talking about a high proportion of patients with generic fatigue rather than M.E. It is also interesting that over 40% of the patients were attending school full time in the fortnight before the study began, which gives the impression that a lot of them were not very ill to start with.

It's amazing to see how easily you can shut the mouths of this kind of pretentious "doctors" that won't hesitate to earn fame and $$$$ at expense of innocent people's health (and what is worse, at expense of children's health).

I'm a member of the spanish #millionsmissing team (#millonesausentes) and we would love to translate all your awesome articles about the PACE case and now FITNET (I heard some are calling it SHITNET??) so please, if there is a way we could translate the great tools you've created to defend pwme from harmful ideologies and practices in the medical community, let me know!

Hi, you are more than welcome to translate everything you want, as long as there's a link included to the original. Is there a big CBT/GET movement in Spain as well?

Thank you again, David. We desperately need your articles to appear in the national media.

David, thank you so much for your hard work.

I suspect that the entire CBT approach is built on creating and documenting placebo responses and conflating them with genuine improvement of the underlying illness. So they need a case definition that includes many cases that will improve even without effective treatment. I am wondering if there is any data on the natural history of different case definitions. I vaguely recall that there was a paper on early intervention with CBT/GET in CFS. I think it suggested there was high regression to the mean. Unfortunately I can't find this paper.

Hi A.B. Here's a link to the IACFSME-2016 conference program. On page 77 (Poster 8), there's a summary of a presentation by James N Baraniuk MD: "Population-Based CFS Prevalences Using Different Criteria and the Styles Questionnaire: The Oxford criteria grossly over-estimate CFS/ME prevalence".

http://iacfsme.org/ME-CFS-P...

His conclusion: "The Oxford criteria grossly overestimate CFS/ME prevalence and include unacceptable numbers of CFSLWIFS (CFS Like With Insufficient Fatigue Syndrome), CIF (Chronic Idiopathic Fatigue) and control subjects. Study outcomes and treatment recommendations based on Oxford criteria cannot be generalized to CFS or ME. FM (2011) and CFS criteria overlap significantly."

It is worth noting that Esther Crawley frequently dilutes the selection criteria even further for her studies and 'research' papers, which makes them even less applicable to those with ME/CFS who ipso facto have an organically-based energy production problem and exertion intolerance.

Thank you again David for this sensible blogpost.

I always wonder why, if researchers must use subjective outcomes, they don't simply ask patients, "Do you now consider yourself to be recovered?" Perhaps the answers would not be to their liking? Yet I'm sure that is the question that other patients considering any treatment option would like to hear answered! I would.

Surely the clouds of obfuscation surrounding these therapies are now getting well blown away?

Some of them do ask that. But if patients are told constantly they will recover from treatment, then they are more likely to report that they "recovered," whether or not they can actually do any more.

They make their own definition of 'recovery'. This is one of the biggest problems, and ethical questions hanging over this body or research.

Not pulling any punches! I like it :)

Thanks again for another clearly explained article.

Wow, wow, wow. Too many things you've written down that are so amazing.
It's amazing how linked they all are. And of course if you use the same type of Oxford variation criteria meta-analyses also turn out amazing.
It's so horrible. We need help. We need a cure. And for that we need research funding. No biomedical research funding since 2005 in the Netherlands because of the 2005 health council. And Crawley is absorbing the ones in the UK as well.
What a mess, what a mess. Thank you David. Grateful for not letting them get away with this. It needs to stop.

both this and the earlier observations are being brought to the attention of the ad hoc ME/CFS committee of the Health Council of the Netherlands, as well as possible future articles on flaws of studies of the Dutch NKCV and the British BPS-exponents, both past and current. So please keep on exposing false claims

Great stuff. Great to hear

Thank you for airing this horrific disease and how people with Myalgic Encephalomyelitis are either forgotten or misdiagnosed. I have no idea how Crawley and friends are able to overcome resistance from the ME Community and organize more research funding without any accountability for the well being of those trying to live with this disease. This Collaborative of Psycho Babble feed on newly diagnosed families who haven't had enough time to understand the complexities of ME. The Collaborative operate with more "smokes & mirrors" than China. They sit on and/or draft biased protocol for the Cochrane Review which shows the benefit of GET & CBT, cover each other's reviews and publish in the Lancet who offers protection for their "scientific data".

Insight into how the smoke & mirrors work http://quillette.com/2016/0...

Thanks again Dr Tuller!!
An argument that I don't think has got enough attention: The 'Other Care' group in the FITNET study were also receiving CBT. I find this astonishing, because the researchers have clearly used the impressive ( although misleading) results from FITNET to suggest that CBT is the effective intervention here. This further propagates the myth that ME is largely psychological. Further, around a third of the 'Other Care' patients were receiving GET, and another third physio. Since we know these treatments can be harmful, it is the lack of 'other care' that could be significant here. I wonder if this is something you could highlight if you write about this again - the fact that we need to look more closely at the control group in this study.

Hi Paul--I wrote about that in the earlier post--that half the comparison group had CBT and a third GET, so they were comparing online CBT to the "evidence-based" treatments they had been recommending for years. very bizarre "control" group.

Thanks Dr Tuller. I must have missed that. Yeah, not enough being made of this I think - the control group could easily suffer due to GET and Physio, accounting for a difference between groups.

Thanks very much for this article.