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

[Kati]

Thanks. We will definitely include the Cochrane review as well. We are trying to decide if there should be three petitions-- one focused solely on a retraction by the Lancet, one focused on the UK guidelines, and one on the US ones, although all could be signed by people worldwide since US and UK guidelines impact everyone.

Someone (I will edit this once I confirm I can use her name) very helpfully researched how PACE has affected US guidelines. Here is some of what she found:

1) Many U.S. clinical guidelines incorporate treatment recommendations for CBT and GET and claims that poorer prognosis is associated with a belief in having an organic illness. This includes CDC's 2012 CME for diagnosis and management which references PACE. Others use PACE or other Oxford studies
Another example - In its article announcing the 2015 IOM report, the American Academy of Family Physicians provides a link for more information to an article by Yancey that recommends CBT and GET states that poorer prognosis is associated with “poor social adjustment, a strong belief in an organic cause for fatigue, or some sort of sickness benefit.” Yancey references PACE.

2) The 2014 AHRQ Evidence Review recommended CBT and GET as treatments based on large part on Oxford studies including PACE. The AHRQ Evidence Review ranked the PACE trial as a "good" study.
AHRQ acknowledged that Oxford included patients who do not have the disease but recommended including Oxford studies anyway because not including them would "limit the evidence" available for review but continued to support treatment recommendations based on Oxford definitions because they “may give us some clue as to where to go with things.”

3) UpToDate (updated since the IOM) refers to the disease as “CFS/SEID,” recommends the IOM criteria for diagnosis but then characterizes immune changes as minor or not different from controls, recommends CBT and GET based on PACE an the 2014 AHRQ Evidence Review, and states that a poorer prognosis may be related to a belief that the disease has an organic cause. This report is behind a paywall.

4) A 2015 Medscape article, entitled “Management of SEID,” referenced the PACE trial and recommended CBT and graded exercise.

Great job, thank you.

I tweeted to AHRQ the following (@Katiissick)

. @AHRQNews Pls review the writing of Dr @davidtuller1 on the #PACEtrial.Your evidence for #mecfs is based on fraud virology.ws/2015/10/21/tri…

Feel free to retweet, to copy and paste, or make your own tweet. Twitter is a great tool to get a message across.

 

[Kyla]

Thanks. We will definitely include the Cochrane review as well. We are trying to decide if there should be three petitions-- one focused solely on a retraction by the Lancet, one focused on the UK guidelines, and one on the US ones, although all could be signed by people worldwide since US and UK guidelines impact everyone.
.

This sounds great.
Can I suggest keeping a separate list of signatories (or separate petition) for doctors/ researchers / reps from organizations etc.

When it comes down to it peer pressure from well-respected colleagues (even if not ones they personally respect) may hold more sway with The lancet etc than the opinion of patients - even a lot of patients - who have already been discredited in their eyes (by the shoddy research and researchers in question) as "deluded".


Also maybe this project could get a separate, "members only" thread?

 

[searcher]

Can I suggest keeping a separate list of signatories (or separate petition) for doctors/ researchers / reps from organizations etc.

Great point @Kyla. I think it makes sense to do a separate letter for docs/researchers/reps to sign. More to come on this.

Also maybe this project could get a separate, "members only" thread?

Also a good idea. I need to sign off for the day due to cognitive overload, but would someone mind starting one and tagging me? I promise to put up more updates tomorrow.

 

[Tom Kindlon]

I just did a Google search for:
"david tuller" "pace trial" "trial by error"
Very few results at the moment. Perhaps other search terms would give better results but at the moment there doesn't seem to be much besides ME/CFS Facebook groups/pages and a few of the free online newspapers that aggregate Twitter tweets.
"David Tuller" doesn't give any news results.

I did David Tuller journalist MEcfs PACE trial and got a top hit

My point wasn't the position of it as a hit but that the article wasn't being mentioned in many places.
Also, now responding to your post, "David Tuller journalist MEcfs PACE trial" is a very specific search that not many people would do.

 

[Snowdrop]

That's true. Looking for info is an art and it helps to have some pieces in the search.

I'm a bit slow on this other point; do you mean no news services are picking up the article? I haven't looked but my twitter fingers are practically on fire. I think I hit 300 tweets/RT's today. I have sent the virology article to some news services. I'm still new to twitter and learning. Maybe next week we'll see something.

I hope the article gets a wider audience.

 

[Tom Kindlon]

That's true. Looking for info is an art and it helps to have some pieces in the search.

I'm a bit slow on this other point; do you mean no news services are picking up the article? I haven't looked but my twitter fingers are practically on fire. I think I hit 300 tweets/RT's today. I have sent the virology article to some news services. I'm still new to twitter and learning. Maybe next week we'll see something.

I hope the article gets a wider audience.

Yes, it has been highlighted a lot on Twitter which is great.
It just doesn't seem to be appearing on websites including blogs, based on a very quick search (but I didn't do lots of different searches to see if different keywords might pick it up).

Great you sent it to news services.

 

[Esther12]

I'd be surprised if anyone was able to blog about it (other than just mentioning it) very quickly. To read, digest and fact check would take someone time.

 

[Sean]

QUESTION: If the raw data is not unflattering, why are they so desperate for the public not to see the raw data, in a publically funded trial?

ANSWER: Is in the raw data.

Exactly. If that data, and the objective measures, had supported the PACE authors' claims, they would be shouting it from the rooftops and opening the books to anybody who wanted to see.

But they are doing the opposite, trying to bury the shitty objective non-results, and withholding data.

Hardly the actions of people who are confident their work will survive scrutiny.

 

[Valentijn]

"Elegant"? "Beautiful"? Seriously?? And people take this guy seriously when he makes statements like that?

It's like bad psychobabble porn ... now with extra sexy grunting!

 

[aimossy]

It's like bad psychobabble porn ... now with extra sexy grunting!

I just half choked on a drink. LAUGH!

 

[Gijs]

As a former statistician student you can send me the data and i will proof it is fraudulent.

 

[Research 1st]

We can only pray as victims of the abusers, that justice will be served and full data released, even the atheists are praying.

 

[eafw]

I posted this in another thread, meaning to put it here but will repeat anyway as it is relevant to the lack of reaction to Tuller's article from the mainstream press so far in the UK, though I'm sure the SMC and pals are working away behind the scenes on their next salvo.

"The role of the SMC needs dragging into the daylight along with everything else surrounding the promotion of PACE.

I wonder if the journalist George Monbiot might be at least interested in what is going on here, bearing in mind the very interesting article he did a few years back related to this particular cabal

http://www.monbiot.com/2003/12/09/invasion-of-the-entryists/

ETA: another link, well worth a read

http://www.lobbywatch.org/lm_george_monbiot.html "

 

[BurnA]

Yes, it has been highlighted a lot on Twitter which is great.
It just doesn't seem to be appearing on websites including blogs, based on a very quick search (but I didn't do lots of different searches to see if different keywords might pick it up).

Great you sent it to news services.

Tom, just want to express my sincere thanks for all the work you did on this. I know there are others involved but I also know this wouldn't have happened without your tireless efforts.
I am sure there were plenty of times you asked yourself if it would be worth all the effort but you can be assured that your work on this will be appreciated by thousands and thousands around the world. You have made a permanent mark on the world of ME /CFS and I hope this is only the beginning of a global change in attitude towards this disease.

Keep up the good work!

 

[Snowdrop]

George Monbiot's twitter handle is conveniently @GeorgeMonbiot.
Here are some more useful TH's @pam_das who is @TheLancet
and you can ask fellow PWME in the UK to tweet along with advocates and any news source you think would be good. eg @huffpostUK
I think it possible that twitter could be powerful but it needs lots of user support on an issue.
When using twitter use hashtages #PWME #MEcfs #PACEtrial

A suggestion for tweeting along the lines of: Mod/severe ill suffering with #CBT #GET tx Need real biomed tx 2 restore lives. Retract #PACEtrial
(along with some directed twitter handles to news or other)
You can thank David Tuller @davidtuller1 and anyone else who comes to mind.

 

[Esther12]

Thanks to everyone promoting this.

 

[Snowdrop]

BTW while promoting this it's come to my attention that there are an unfortunate large group of PWME mostly young and mild ill who take the UK spin at face value. They don't seem to be aware that so long as PACE stands there will be no medical treatments available to them (without private money). They will be stuck spending money on this and that tx experimenting researching with what energy they have.

Maybe I'm misunderstanding the situation but it seems that the media have done a fine job of ensuring that they will get well thinking happy thoughts (happy positive thoughts are big in this group).

And no that doesn't make me a pessimist. I'm a realist (most days).

 

[Esther12]

BTW while promoting this it's come to my attention that there are an unfortunate large group of PWME mostly young and mild ill who take the UK spin at face value.

That's interesting. If teens, could be that they do have better prognosis anyway, have seeen lots of people recover, etc?

 

[Kati]

BTW while promoting this it's come to my attention that there are an unfortunate large group of PWME mostly young and mild ill who take the UK spin at face value. They don't seem to be aware that so long as PACE stands there will be no medical treatments available to them (without private money). They will be stuck spending money on this and that tx experimenting researching with what energy they have.

Maybe I'm misunderstanding the situation but it seems that the media have done a fine job of ensuring that they will get well thinking happy thoughts (happy positive thoughts are big in this group).

And no that doesn't make me a pessimist. I'm a realist (most days).

Can you give details and is it happening on twitter?

 

[Denise]

That's interesting. If teens, could be that they do have better prognosis anyway, have seeen lots of people recover, etc?

I wish I really believed that teens have a better prognosis and that some actually recover....
In those who seem to have recovered, I would very much like to know how they were originally diagnosed, how recovery is defined (what level of activity do they actually have....)....