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Julie Rehmeyer Slate blog Hope for ME/CFS, PACE should be reanalysed

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
Hope for Chronic Fatigue Syndrome: PACE trial is flawed, should be reanalyzed.
The debate over this mysterious disease is suddenly shifting.

Julie Rehmeyer
Last month, a team of researchers released their latest study on chronic fatigue syndrome. Psychotherapy and a gradual increase in exercise, the researchers claimed, were lasting, effective treatments that could lead to recovery. The study was an update of the largest treatment trial in CFS history, now with longer-term data.

That might sound like good news—but I knew these researchers’ past work very well, and it had only added to the misery of CFS patients like me. Back in 2011, I watched the headlines spread around the world when the team, funded by the British government, published the first results in the Lancet—while I was desperately ill in bed, reading the news on my phone, too weak to sit up to use my computer.

I—and a lot of other people with knowledge of CFS—couldn’t believe what we were reading. Psychotherapy had helped me keep my sanity while my body fell apart, but it had never made me less sick

Peter White, a psychiatrist at Queen Mary University of London and the lead PACE investigator, told me by email in late October that “some small overlap might be expected” between the criteria for entry into the trial and those for recovery, and he pointed out that there were two additional criteria. He didn’t, however, mention that those criteria were also weakened. When I inquired why such an overlap “might be expected,” he declined to answer further questions...

The PACE researchers have refused to release the data in the past, arguing that “activists seeking to discredit the PACE trial and its researchers” would somehow decrypt the anonymous details in the data and publish the names of participants. And White told me that the changes to the original protocol “improved the science and interpretation. We see no reason why we should do a further analysis based on an inferior method.” Horton, editor of the Lancet, didn’t respond to my request for comment.

“The Lancet needs to stop circling the wagons and be open,” says Bruce Levin, a biostatistician at Columbia University who signed the open letter. “One of the tenets of good science is transparency.”


(My tweet)
 
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Yogi

Senior Member
Messages
1,132
Fantastic article. Thank you Julie Rehmeyer.

These online articles are free but I understand if you click the adverts on the links (which are targeted) they publisher gets paid by the advertiser? Is that correct. It would be an easy way of showing support and encourage them to do more such articles.
 

SOC

Senior Member
Messages
7,849
The PACE researchers have refused to release the data in the past, arguing that “activists seeking to discredit the PACE trial and its researchers” would somehow decrypt the anonymous details in the data and publish the names of participants.
That is just freakin' paranoid. Do they have any reason other than their own wild imaginations to think that ME activists have any interest in publishing the names of participants? Or even the time and energy to do that kind of decryption, assuming it's even possible. What purpose would publishing the names of PACE patients serve that could possibly be worth all that effort?

What's worse than the fact that the BPS crew is putting out stories like this one and the one about SW feeling safer in a war zone than in a London with ME patients in it, is that apparently sensible people swallow such stories whole instead of laughing in derision at such blatantly propagandist nonsense.

Great article! We need more of this. Keep up the good work, Jule and others! :thumbsup:
 

Kyla

ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ
Messages
721
Location
Canada
comment section is going in a horrible direction.

Any takers on adding some constructive comments?
 

Cheshire

Senior Member
Messages
1,129
You have to click there:
upload_2015-11-13_17-10-34.png
 

Kyla

ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ
Messages
721
Location
Canada
I feel like we need a BINGO game of horrible trite comments from comment sections on ME&CFS articles.

comment about joining the army - check
If there isn't one irrefutable test it must be psychosomatic - check
"she probably has undiagnosed Lyme disease" - check
some variation of "buck up" - check
It must be at least "partly" or mainly psychiatric. because I said so - check.
"this article is dumb" - check
 

SOC

Senior Member
Messages
7,849
I feel like we need a BINGO game of horrible trite comments from comment sections on ME&CFS articles.

comment about joining the army - check
If there isn't one irrefutable test it must be psychosomatic - check
"she probably has undiagnosed Lyme disease" - check
some variation of "buck up" - check
It must be at least "partly" or mainly psychiatric. because I said so - check.
"this article is dumb" - check
"I'm tired from just reading this article (ho ho)"
"...middle class housewives..."
"...no scientific evidence..."
It's slightly humorous (in a dark sort of way) that they think they are being so clever and insightful when they are just repeating very old and tired (and debunked) cliches. It's getting quite yawn-making, actually.
 

Cheshire

Senior Member
Messages
1,129
#MEAction published foreign langage translations of Julie's paper:

Deutch: http://www.meaction.net/hoop-voor-chronisch-vermoeidheid-syndroom/ @Valentijn (sorry I know there are other people living in the Netherlands on PR, but I can't recall their name...)

French: http://www.meaction.net/de-lespoir-pour-le-syndrome-de-fatigue-chronique/ @funkyqueen
Edit: the French translation is also published here: http://www.sfc-em.com/de-lespoir-pour-le-syndrome-de-fatigue-chronique/

Norvegian: http://www.meaction.net/hap-for-myalgisk-encefalopati-me/ @mango @deleder2k

Spanish: http://www.meaction.net/esperanza-para-el-sindrome-de-fatiga-cronica/

@Tom Kindlon @Dolphin (I know you often release foreign langage links!) and others, do not hesitate to tweete!
 
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funkyqueen

Senior Member
Messages
123
Location
South of France
#MEAction published foreign langage translations of Julie's paper:

Deutch: http://www.meaction.net/hoop-voor-chronisch-vermoeidheid-syndroom/ @Valentijn (sorry I know there are other people living in the Netherlands on PR, but I can't recall their name...)

French: http://www.meaction.net/de-lespoir-pour-le-syndrome-de-fatigue-chronique/ @funkyqueen

Norvegian: http://www.meaction.net/hap-for-myalgisk-encefalopati-me/ @mango @deleder2k

Spanish: http://www.meaction.net/esperanza-para-el-sindrome-de-fatiga-cronica/

@Tom Kindlon @Dolphin (I know you often release foreign langage links!) and others, do not hesitate to tweete!


Thanks @Cheshire !
It's bad that i'll not share it, because, my disease is ME, and not "Syndrome de Fatigue Chronique"..
Even if sometimes i shared on social networks some links with " ME/CFS", ok, but only " CFS", this appellation
just drive me crazy...