• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Dr David Tuller: Trial By Error: The CDC Drops CBT/GET

Countrygirl

Senior Member
Messages
5,429
Location
UK
http://www.virology.ws/2017/07/10/trial-by-error-the-cdc-drops-cbtget/

Here is an extract from the article.

Trial By Error: The CDC Drops CBT/GET
10 JULY 2017
By David Tuller, DrPH

This is the beginning of a new phase for “Trial by Error.” I initially assumed that my work on PACE and ME/CFS (or ME, or CFS/ME, or CFS) would be a one-off investigation, and then I’d move on to other projects. But after my 15,000-word series was posted on Virology Blog in October of 2015, the story kept going and going. I couldn’t stop myself—there was always more to write about. But it was all very complicated and I didn’t know where it would lead.

And then the issue gained traction and momentum, especially after the release last year of the trial data, which revealed how much the investigators had inflated their findings by relaxing their outcome measures. The data release itself occurred thanks to the heroic efforts of Australian patient Alem Matthees, who doggedly pursued his freedom-of-information request and defeated Queen Mary University of London’s high-powered legal team. Despite this success, there’s still more work to do, and I’m glad to have the opportunity to pursue the issue further. I owe that opportunity to all the amazing contributors to the crowdfunding campaign, and to the support of Professor Vincent Racaniello, the host of Virology Blog, and my colleagues at the School of Public Health at the University of California, Berkeley.

Going forward, I will drop the word “Continued” from the headline of this series and just use “Trial by Error.” I decided to keep “Trial by Error” because, well, I really like the name. And I think it accurately describes both the PACE trial specifically and the larger effort to impose the CBT/GET paradigm on this patient population. I have relied on my friends Valerie Eliot Smith and Robin Callender Smith for their legal insight throughout this effort, but I also need to thank them again for suggesting this perfect title two years ago.

Other than that, I expect things will more or less continue as before–some investigating/blogging on Virology Blog, some writing for other publications, some orchestration of open letters from academics, some use of social media, etc. Overall, the project should cover about half my work time. I have previously mentioned some things I want or plan to examine. Unforeseen topics will also emerge, of course—before Esther Crawley libeled me, who knew I’d write multiple blogs about her unscholarly behavior?

I won’t manage to do everything, but I hope to get enough done to help further blunt the authority and credibility of the CBT/GET ideological crusaders. Their position has been considerably weakened, given the willingness of many in the international scientific community to criticize the PACE study’s conduct and methodology. Yet the PACE investigators still present themselves as victims of an organized campaign of anti-science zealots, as Professor Michael Sharpe implied recently in his abstract for an “ethics” talk at Oxford. (Professor Sharpe’s position was artfully deconstructed last week on Virology Blog by Northwestern University law professor Steven Lubet.)

I can understand why the PACE investigators might have trouble acknowledging that the theory to which they have devoted decades of their lives has been undermined by the evidence of their own highly promoted trial. But the dereliction of editorial responsibility by The Lancet and other prestige journals, which have enabled the PACE/CBT/GET charade by publishing poor-quality work, is perhaps even more disturbing. It is not surprising that The Lancet has just published another flawed study from this school of research, a trial of self-help graded exercise for what the researchers still call “chronic fatigue syndrome.” In effect, The Lancet was doubling-down on its defense of PACE.
 

Mary

Moderator Resource
Messages
17,335
Location
Southern California
This is great - so glad to see it! One would hope that as the CDC goes, so goes the rest of the country (eventually) -- at least it will be a bit more ammunition for patients when dealing with medical ignorance and harmful treatments -- I know many doctors hate the idea of the patients educating themselves and using the internet to boot, but I don't see how they could object to being informed about the CDC (well, of course they could and I'm sure some will ... :bang-head:)

Anyways, it's good news! :thumbsup:

And maybe it might eventually have some impact across the pond? (Though I have no idea how CDC policy influences other nations, if at all.)
 

deleder2k

Senior Member
Messages
1,129
That is sad. Why is it like that in the U.K? Even though many doctors believe in some sort of the BPS model in Norway, things are changing. There is no agreement that CFS is merely a disorder that is maintained by stress, even though one of the kings of the stress theory is from Norway (dr. Wyller). Things are and have changed.

One of the things that annoys me the most is that the most common medical "dictionary" for doctors in Norway is mostly BPS BS. I have tried contacting those who administer it, but they didn't want to change and revise a lot. I couldn't understand why. They I found out that they dr. i was arguing with had published a couple of CBT/stress theory papers with Wyller. Too bad.

The Norwegian Directorate of Health says that the evidence for CBT/GET is not very good, but it says that patients can try it. I think they are revising it now. I hope that they will remove it, or at least say that GET is harmful, and that CBT for sure doesn't lead to objective improvements.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
Hi @deleder2k

You might want to be more public with things in their dictionary that are potentially embarrassing to them because they are so non-science non-evidence based.

I wrote some notes on a video by Peter Tatchell that AndyPR uploaded in a thread and it really gives some good advice regarding advocacy.

Here's the link if you're interested: http://forums.phoenixrising.me/inde...ge-happen-for-human-rights.52693/#post-872566

I think as time goes on we are in fact getting better at figuring out how to best use our efforts. And that is starting to pay off. But as you know there is so much more to be done.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
This is great - so glad to see it! One would hope that as the CDC goes, so goes the rest of the country (eventually) -- at least it will be a bit more ammunition for patients when dealing with medical ignorance and harmful treatments -- I know many doctors hate the idea of the patients educating themselves and using the internet to boot, but I don't see how they could object to being informed about the CDC (well, of course they could and I'm sure some will ... :bang-head:)

Anyways, it's good news! :thumbsup:

And maybe it might eventually have some impact across the pond? (Though I have no idea how CDC policy influences other nations, if at all.)

CDC majorly influences other places. Im in Sth Australia, when I went to a GP who didnt know much about ME/CFS, he went to CDC website to look it up :( (ignoring reading the educational stuff I took in to him including the canadian consensus overview book)
.........

As far as Im concerned, the CDC should issue a public appology seeing they've harmed many of us throu their info on our illness.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I havent looked the CDC stuff for ages, wow this page was good https://www.cdc.gov/features/cfsawarenessday/

https://www.cdc.gov/me-cfs/ oh wow, this is so good that I may be able to use the CDC info for my court case of discrimination and neglect against my Aussie gov disability services. " People with ME/CFS have severe fatigue and sleep problems. ME/CFS may get worse after people with the illness try to do as much as they want or need to do."

https://www.cdc.gov/me-cfs/treatment/index.html Check out their treatments.. WOW no CBT or GET mentioned at all! Plus they even get warnings re giving us anti depressants or and anti anxiety drugs. wow.. finally good info. I'd never thought I would see the day when the CDC got their info right to the point in which I felt comfortable to recommend their website to anyone

the only bad advice in their treatment section I can see is in their sleep treatment... where it says to limit daytime sleep to 30mins in total. A severe ME/CFS person or one who is very crashed, that just isnt enough and wont allow any recovery.

Is anyone able to work with the CDC to alter that? I'll start up a new thread. New thread to discuss the CDC changes http://forums.phoenixrising.me/index.php?threads/cdc-website-changes.52749/


A big thank you to David Tuller!! You should get a award for the what you've done for us
 
Last edited:

Jonathan Edwards

"Gibberish"
Messages
5,256
As a general statement this is true. There is no other mainstream academic or medical establishment view other than the BPS.

I disagree. The comments I have been making of late in various journals and reviewer's reports are the mainstream academic view in the UK. It is just that 95% of UK medical academics have never thought twice about ME/CFS and have never heard of the BPS mumbo jumbo. For academics still in post it is too much hassle making their views known - even if they are interested. Psychological medicine certainly seems to be in deep trouble - but then that seems to be an international problem.
 

Stewart

Senior Member
Messages
291
This a major shift by the CDC. They can't do this in secrecy. We demand a statement. Has anyone tried sending them a letter? E-mail? Called them?

I think getting a statement from the CDC explaining the reasons for this change is the single most useful thing that could be done before the NICE consultation closes in 10 days time. Do we know of anyone that has an existing line of communication with them?
 

Daisymay

Senior Member
Messages
754
For academics still in post it is too much hassle making their views known - even if they are interested.

First thanks so much Professor Edwards for standing up for PWME.

I'm sure most doctors and academics are very busy people but there is surely a professional and moral obligation for them to speak out over this.

So surely doctors should follow "First do no harm" and second don't sit back and let harm be done to patients by members of your profession. Defend patients, don't be an enabler of the abuse.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Psychological medicine certainly seems to be in deep trouble - but then that seems to be an international problem.
Its also a long standing problem. When hasn't psychological medicine been in trouble? Its just better or worse in places due to specifics. All countries are affected. The UK is just more prominent because poor medical standards are supported by NICE along with the good standards, and because the UK is where the main researcher base is for this kind of thing, along with some small effort in parts of northern Europe.

I have long held the view that the main problem in medicine stems from the bureaucratic-medical culture (medical systems alongside bureaucratic watchdogs) combined with lack of information. Doctors operate in uncertainty, and the bureaucratic watchdogs often create "guidelines" to give the impression of certainty, and frequently to contain costs.

I am in favour of more medical training, especially in science and evidence based practice (largely just scientific principles, statistics, and logic, with less emphasis on central authorities) , and more medical autonomy.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
First thanks so much Professor Edwards for standing up for PWME.

I'm sure most doctors and academics are very busy people but there is surely a professional and moral obligation for them to speak out over this.

So surely doctors should follow "First do no harm" and second don't sit back and let harm be done to patients by members of your profession. Defend patients, don't be an enabler of the abuse.

The problem is that we are now in a situation where a doctor who expresses an opinion that is considered 'troublesome' may be told that their services are no longer required by their employer. Exactly that has recently happened to the chief of the Department of Medicine at UCL.

When I resigned from the NHS I did so because I did not feel I was able to continue to provide a safe or effective service. I had to consider very hard which would do more harm: to carry on providing poor care or to resign and leave the patients without continuity of care and my unique expertise. I decided to leave because my second in command knew all the patients well and had acquired the same special expertise. But it was not easy.

Doctors cannot be blamed for not speaking out. If they do they get weeded out and the situation is worse. The reason I can write about PACE is that, unlike some others, nobody can ring up my employer and suggest a change of contract might be in order - which as we know has happened more than once over PACE.
 

Daisymay

Senior Member
Messages
754
The problem is that we are now in a situation where a doctor who expresses an opinion that is considered 'troublesome' may be told that their services are no longer required by their employer. Exactly that has recently happened to the chief of the Department of Medicine at UCL.

When I resigned from the NHS I did so because I did not feel I was able to continue to provide a safe or effective service. I had to consider very hard which would do more harm: to carry on providing poor care or to resign and leave the patients without continuity of care and my unique expertise. I decided to leave because my second in command knew all the patients well and had acquired the same special expertise. But it was not easy.

Doctors cannot be blamed for not speaking out. If they do they get weeded out and the situation is worse. The reason I can write about PACE is that, unlike some others, nobody can ring up my employer and suggest a change of contract might be in order - which as we know has happened more than once over PACE.

Point taken but what an utterly shocking indictment of the state of the NHS/medical professions.

Who are the ones ruling things in this manner, the hospital management? The government? The medical establishment "elites" with vested interests to promote their specific agendas eg BPS? Or all of the above?
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Or all of the above?
All of the above, though in differing degrees. And more. Its vastly complicated, and there are no simple answers. What is required however is the medical profession to engage the public and other stakeholders into supporting a move for the better. Alternatively the public can organize and bring medical professionals in. Or both of these, which is more likely.
 

Large Donner

Senior Member
Messages
866
Doctors cannot be blamed for not speaking out. If they do they get weeded out and the situation is worse. The reason I can write about PACE is that, unlike some others, nobody can ring up my employer and suggest a change of contract might be in order - which as we know has happened more than once over PACE.

Oh you are such a conspiracy theorist.!! :p