TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study

[Sean]

Maybe this isn't fair, but I keep thinking that Mr Tuller has nearly missed the real story here, which is the burial of our illness by the insurers, and their use of the Wessely School, the media, and various government agencies to do that.

Perhaps this article is merely the first chapter in that story, and Mr Tuller is still raking the muck. I sure hope so.

One step at a time. The whole story is way too detailed and complicated (and nasty) to be able to tell or take in via a single article.

 

[Kati]

A couple of days ago I tweeted this:

@Katiissick
2015-10-23, 8:12 PM
. @cochranecollab ur review of tx 4 #mecfs caused this.Yet, #PACEtrial was given green light virology.ws/2015/10/21/tri… pic.twitter.com/fozQNzqFV3

And then tonight I receive a response from Cochrane collab.


Cochrane (@cochranecollab)
2015-10-25, 7:17 PM
.@Katiissick To submit comments on conduct/findings of #CochraneReviews, please use link under Article Tools: ow.ly/TPbxN


Does anybody know if this has been attempted? Would it be worthwile to give it a try at this time? Do we stand a chance?

 

[alex3619]

@jimells wrote:
"Maybe this isn't fair, but I keep thinking that Mr Tuller has nearly missed the real story here, which is the burial of our illness by the insurers, and their use of the Wessely School, the media, and various government agencies to do that."

Agreed.

It took Hillary Johnson many years of her life to really investigate the early history. Its not easy. Many of the people who can give testimony are too old or passed on now. Tuller took one specfic issue, and researched it thoroughly. That is what is needed. Aside from unfair sectioning, and taking children away from parents, I am unaware of another failure in ME history that compares with the PACE trial.

The original Beard and McEvedy paper and thesis are probably as bad, if not worse, but it was far less well documented that this was the case, though apparently Byron Hyde can still give testimony related to this. There was also not nearly as much published about it.

For an investigative journalist to really get stuck in they need a clear and verifiable evidence trail. That is often lacking. Sadly.

I think if we want more articles we need to find very very specific issues that there is plenty of independently verifiable evidence about. What makes the Tuller article so damning is that the evidence is out there for anyone who bothers looking. Sadly almost the entire medical profession did not bother, nor the media.

So let me ask a question. What specific event, localized as to time and probably not more than a decade ago, was anywhere nearly as well documented, and with such a huge potential to cause harm as the PACE trial? To me it was the Rosetta Stone that showed me just how much was wrong inside some branches of the medical establishment.

I think the bizarre goings on in the UK with respect to forcing the disabled into work even if they are dying, and resulting in probably on the order of 100,000 extra deaths, has to take the cake. Many of these people would have had ME. I think we need more investigative journalism there as well. I think with the UN investigation for violations of the rights of the disabled this might happen. Personally I hope some of the people pushing this get investigated to see if there is a case to answer for crimes against humanity.

If someone has an idea as to other specific events worth investigating, maybe they could name something? Most broader issues are hard to pin down, and without damning evidence or a whistleblower, or someone else like Hillary Johnson, its hard to get traction.

 

[ukxmrv]

If someone has an idea as to other specific events worth investigating, maybe they could name something? Most broader issues are hard to pin down, and without damning evidence or a whistleblower, or someone else like Hillary Johnson, its hard to get traction.

Consider maybe the Judicial Review into the NICE guidelines for ME/CFS?

http://www.meassociation.org.uk/200...rt-rules-that-a-judicial-review-can-go-ahead/

The people who brought the review are still alive and there is a large amount of evidence that I think never made it into the public domain.

Given that this was said recently

"“So we are stuck with a NICE guideline on ME/CFS that patients do not want, the ME Association regards as completely unfit for purpose, and a guideline which NICE (at long last) now accepts is no longer doing the job it should.”

Dr Charles Shepherd, medical adviser, The ME Association."

 

[alex3619]

Consider maybe the Judicial Review into the NICE guidelines for ME/CFS?

That is very specific. Maybe someone could start a thread on discussing how to clarify what to look at in detail? I know there is copious documentation on this topic, at least.

 

[Tom Kindlon]

A couple of days ago I tweeted this:

@Katiissick
2015-10-23, 8:12 PM
. @cochranecollab ur review of tx 4 #mecfs caused this.Yet, #PACEtrial was given green light virology.ws/2015/10/21/tri… pic.twitter.com/fozQNzqFV3

And then tonight I receive a response from Cochrane collab.


Cochrane (@cochranecollab)
2015-10-25, 7:17 PM
.@Katiissick To submit comments on conduct/findings of #CochraneReviews, please use link under Article Tools: ow.ly/TPbxN


Does anybody know if this has been attempted? Would it be worthwile to give it a try at this time? Do we stand a chance?

I submitted these two detailed comments on September 9:
http://forums.phoenixrising.me/inde...e-exercise-therapy-for-cfs-review-2015.39801/

I haven't heard anything back. The review pdf did include a few earlier comments by people who weren't the authors (from before the review's results were published, if I recall correctly).

 

[Denise]

I would like to see a retraction of all things PACE and a prohibition on any current or future use of PACE data.


ETA - I am a dreamer....

 

[Kati]

I submitted these two detailed comments on September 9:
http://forums.phoenixrising.me/inde...e-exercise-therapy-for-cfs-review-2015.39801/

I haven't heard anything back. The review pdf did include a few earlier comments by people who weren't the authors (from before the review's results were published, if I recall correctly).

Hi Tom, could you please confirm with me the public comments are not visible? Thx

 

[Tom Kindlon]

Hi Tom, could you please confirm with me the public comments are not visible? Thx

Immediately after they are submitted, they are not visible.
They may be used in the full report. The full report had one full name and one first name for the two comments I saw.

 

[Kati]

Immediately after they are submitted, they are not visible.
They may be used in the full report. The full report had one full name and one first name for the two comments I saw.

What I meant is comments regarding the publication of the cochrane review. Like yours in September.

 

[Tom Kindlon]

What I meant is comments regarding the publication of the cochrane review. Like yours in September.

I can't remember the wording of what they say. It's something along the lines that the reviewers should reply. My comments were quite long so it could take them a while. If they don't reply to mine in a few months, I will probably follow it up. I have posted the comments on PubMed Commons so quite a few people will see them.

 

[Tom Kindlon]

Some people interested in CBT and GET and the negative effects they can sometimes cause may be interested in this thread:

UK: MEA calls for GET & 'false illness beliefs' CBT to be ditched as primary treatments for ME
http://forums.phoenixrising.me/inde...ry-treatments-for-me.37782/page-9#post-655964

From message #59 on I've been posting a lot of extracts from the report. Initially quite a lot of them were about statistics, but then it moves on to being quotes from people who tried CBT and GET describing their experiences.

 

[Tom Kindlon]

New post on David Tuller's pieces on the PACE Trial by by Steve Lubet, law professor at Northwestern Uni

October 27, 2015
No, It Isn't All in Your Head
http://www.thefacultylounge.org/2015/10/no-it-isnt-all-in-your-head.html

I've given it its own thread: http://forums.phoenixrising.me/inde...ubet-law-professor-at-northwestern-uni.40805/

Extract:

Meanwhile, there is still no cure for ME/CFS, and patients would be facing a grim outlook if their future were solely in the hands of benighted British psychiatrists. Fortunately, promising biomedical research is proceeding at an unprecedented pace in the U.S., so there is finally cause for hope.

The era of enlightenment has not yet dawned in the United Kingdom, however, where medical research has been sidelined while psychiatrists continue to insist that ME/CFS is best addressed by Cognitive Behavior Therapy and an increase in activity known as Graded Exercise Therapy. The founder of the group is Dr. Simon Wessely, whose theory is that ME/CFS is “perpetuated predominantly by dysfunctional illness beliefs and coping behaviours [that] interact with the patient's emotional and physiological state and interpersonal situation to form self-perpetuating vicious circles of fatigue and disability.”

 

[Yogi]

Dr Seema Yasmin (UK Cambridge medical graduate who happens to be a Professor at University of Texas and CNN Medical Analyst) has tweeted about PACE trial fraud.

Thank you and Congratulations Dr Yasmin for being the first UK doctor to publicly shame the PACE Trial!!!!

https://twitter.com/DoctorYasmin/status/657660921041448960

"What a sham. How long for @TheLancet to retract this deeply flawed study? #PACEtrial "

Wow she has an amazing CV and the guts to publicly come out and speak her mind. And did I say that she happens to have been an undergraduate at............. Queen Mary Univ of London.

http://www.seemayasmin.com/

When are the other UK doctors going to follow this brave young doctor's example and stand up for patients and science?

Has anyone engaged with DrSeema Yasmin in any form of communication given she is a doctor and journalist? ?

She also seems very broad minded based on her web profile and not gullible like most average docs and journalists. I am not on twitter but anyone in our community who is articulate and knowledgable who has the energy to reach out should do now. I may do myself later on but v. ill and not on twitter (thinking of getting an account after this week). I am not even sure if she has read all the 3 parts of D Tullers article.

I think the psychobabbler pace pi's will fight back big time now and become increasingly desperate. This is a war.
She may be our white knight so to speak.

 

[WillowJ]

and a prohibition on any current or future use of PACE data.

Except as an example in college: how things go wrong and what not to do

 

[WillowJ]

Northwestern Uni

that's influential.

 

[Yogi]

Yes !!!!!!! Made it into Science!!!!!!

http://forums.phoenixrising.me/inde...ng-controversial-chronic-fatigue-study.40819/

 

[Tom Kindlon]

New post on David Tuller's pieces on the PACE Trial by by Steve Lubet, law professor at Northwestern Uni

October 27, 2015
No, It Isn't All in Your Head
http://www.thefacultylounge.org/2015/10/no-it-isnt-all-in-your-head.html

I've given it its own thread: http://forums.phoenixrising.me/inde...ubet-law-professor-at-northwestern-uni.40805/

Extract:

Another legal blogger has highlighted this, with their own intro:
http://www.lawyersgunsmoneyblog.com/2015/10/chronic-fatigue-syndrome-and-medical-research

 

[WillowJ]

I wanted to comment on the comments, and explain the difference between "a psychological condition" (any mainline psych diagnosis) and "a behavioural condition" (which is how CFS is treated in the PACE trial), but I completely gave up making a WordPress account.

 

[Tom Kindlon]

I'm mentioned by name in the piece but am only one of many who have spent time/energy analysing and critiquing the PACE Trial and spent time/energy on some related issues over the years. So I want to acknowledge these people and thank them for their work.

I thought I'd give the real reason: I used all the terrorism skills I've learned as an ME militant to threaten David Tuller not to let others take the spotlight from me.