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

[Snow Leopard]

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.

The first rule of Illuminati club is:

 

[leela]

Consider every post in this thread "Liked" and also huge gratitude to David, Tom, Graham and all who have kept hammering away at this drek masquerading as a
study.

 

[Sean]

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.

Teh Evool Tom Cat.

 

[worldbackwards]

Anyone in Bristol? Apparently our man is discussing Tuller' s piece on the radio RIGHT NOW!

Edit - Actually it was a bit since, at nine. Might be worth looking for on the iplayer.

 

[lilpink]

An interesting discussion. I never looked after teens with ME and only a few adults but over the years I have come into contact with a small number of youngsters with ME. I agree that there are different subgroups of people who get this diagnosis but the people I am talking about had severe illnesses and were bedbound for months and not much better for a few years. They did not make appearances at clubs at weekends after being off school all week. I would not want a narrow diagnostic view that excluded them. At least some had PEM. And the two I know the outcome on after several years have recovered in the sense of having reasonably normal lives with full time work or education and good relationships. They did not suddenly become 'well', the road to recovery was slow and bumpy, and they are certainly not at the level of activity they were before getting ill. Their targets are very different, but not insignifcant. I think the idea that more than half of adolescents get reasonably better is probably true, although I would not be surprised if the usually quoted figures are misleading.

Fwiw I developed ME aged 10 in 1970. I 'cycled' in and out of remission until 1990 and then went downhill swiftly and have been housebound since 1994. I am getting iller by degrees. The trajectory is all downhill.

 

[Sasha]

Apologies for cross-posting but I'm aware that not everyone scours the Petitions subforum every morning.

Yesterday evening, a petition calling for The Lancet and Psychological Medicine to retract the misleading claims about recovery in the PACE trial was launched on #MEAction. The petition also calls for the per-protocol recovery analyses to be published and for the raw data for the analyses to be released.

#MEAction is Jen Brea's major, fantastically well-networked advocacy platform. There have already been over 2,700 signatures in just 18 hours.

Background pages that link from the petition explain the issues briefly and clearly for patients, supporters, journalists, scientists, anybody - and scientists in particular are going to be horrified at what they read. It's a fantastic advocacy tool.

This is it! PACE is falling. First Tuller, now the petition, and some other stuff coming hot on its heels.

Pile on, guys! Sign the petition, get it out there far and wide to your friends, relations, on Facebook, on Twitter - the internet is already on fire with it.

Let's get cracking!

http://my.meaction.net/petitions/pace-trial-needs-review-now

 

[worldbackwards]

Response!

http://www.virology.ws/2015/10/30/pace-trial-investigators-respond-to-david-tuller/

 

[Jonathan Edwards]

Response!

http://www.virology.ws/2015/10/30/pace-trial-investigators-respond-to-david-tuller/

Something struck me about the unprofessional way the new follow up study is interpreted by the authors and also the lack of understanding of the basic interpretation problems indicated by the response to Tuller. If this is the level of interpretation then it seems reasonable that PACE was conducted in the same way - i.e. any benefit of the doubt looks even more like bending over backwards.

 

[Sasha]

Something struck me about the unprofessional way the new follow up study is interpreted by the authors and also the lack of understanding of the basic interpretation problems indicated by the response to Tuller. If this is the level of interpretation then it seems reasonable that PACE was conducted in the same way - i.e. any benefit of the doubt looks even more like bending over backwards.

And comments on the blog are open, @Jonathan Edwards.

Don't think we've ever seen the PACE authors forced into a forum where people can criticise their science in quite such a high-profile and accessible way.

I hope the PACE authors will actually reply to comments, though I doubt it.

 

[Gijs]

This discussion about CBT and GET is getting very annoying. This therapy is helping a subgroup of patiënts who have fatigue. It is all about criteria. The problem is that White and Chalder claiming this therapy will help all CFS and ME patiënts. Why don't they acknowledge the fact that many patiënts getting worse or have no benefit instead of fighting about their claims. If i was a doctor i would investigate this group of patiënts. This is how science should be working. It is very pathetic to see the intellectual disabilities.

 

[Hutan]

From the response:

We chose (subjective) self-ratings as the primary outcomes, since we considered that the patients themselves were the best people to determine their own state of health.

Ha. These would be the same patients that they were trying to cure of false illness beliefs?

 

[Gijs]

From the response:



Ha. These would be the same patients that are being cured of false illness beliefs?

This is a very good and validated point you make! It is also a contradiction!

 

[TiredSam]

And comments on the blog are open

And what a wonderful comments section it's turning into - not one troll, every poster calmly taking them to pieces. A very well-informed and formidible "vocal minority", I must say.

 

[Valentijn]

Why don't they acknowledge the fact that many patiënts getting worse or have no benefit instead of fighting about their claims.

Because White's job as an employee of insurance agency is to give them reasons to deny the claims of ME/CFS patients. And Chalder's entire career has been built upon reducing ME/CFS into fatigue.

 

[Cheshire]

David Tuller's response to the PACE team's response...

http://www.virology.ws/2015/10/30/david-tuller-responds-to-the-pace-investigators/

 

[Sidereal]

According to the communications department of Queen Mary University, the PACE investigators have been receiving abuse on social media as a result of David Tuller’s posts. When I published Mr. Tuller’s articles, my intent was to provide a forum for discussion of the controversial PACE results. Abuse of any kind should not have been, and must not be, part of that discourse. -vrr

http://www.virology.ws/2015/10/30/david-tuller-responds-to-the-pace-investigators/

Has anyone seen any instances of actual abuse on Twitter or has it just been vigorous critique?

 

[adreno]

i.e. any benefit of the doubt looks even more like bending over backwards.

And the rest of us are bent over forwards.

 

[Sidereal]

The PACE authors included multiple objective measures in their protocol. All of them failed to demonstrate real treatment success or “recovery.” The extremely modest improvements in the exercise therapy arm in the walking test still left them more severely disabled people with people with pacemakers, cystic fibrosis patients, and relatively healthy women in their 70s.

 

[TiredSam]

According to the communications department of Queen Mary University, the PACE investigators have been receiving abuse on social media as a result of David Tuller’s posts.

They've pulled this stunt before, portraying their detractors as abusers, and because of that they don't deserve to have this claim taken at face value unless they provide evidence that it has taken place, and establish a causal link between the abuse and the article.

Arseholes.

 

[adreno]

Arseholes.

Abuse! Abuse!