• 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.

The Conversation US: How a study about Chronic Fatigue Syndrome was doctored

Yogi

Senior Member
Messages
1,132
I've been sending them and a number of other tv news people all relevant info and links as they've cropped up(for months); apart from initial responses to say thanks, have had no definite replies.
Unless my emails are now going directly into their deleted/spam folders they all know what's been going on.

thanks for doing that and letting us know. interesting there is still not much from UK press.

who have you contacted?

Wessely and SMC trying to hold back the tide!

here's another one

http://www.intellectualtakeout.org/...-syndrome-was-doctored-adding-pain-and-stigma
 

Yogi

Senior Member
Messages
1,132
ITN,CH4(ch4 news is by ITN anyway but contacted both also specific journalists), BBC, skynews, couple of other local BBC news depts, daily mail,telegraph, times, (plus various MPs, Peter Tatchell).

really I am so surprised. the problem is they are all in the London bubble and Wessely is a real establishment figure. I heard coyne say that Wessely told some media orgs to back off the pace trial.
 
Messages
2,391
Location
UK
really I am so surprised. the problem is they are all in the London bubble and Wessely is a real establishment figure. I heard coyne say that Wessely told some media orgs to back off the pace trial.
It is going to be rather interesting really. How big will this have to blow up around the rest of the world, and the UK media still manage to pretend it is not happening? I mean, just the explosion of these reports into other media around the world is itself becoming big news, quite apart from the content itself. And the longer they ignore it, the more "interesting" their responses are likely to be. I suspect they are all hunkering down waiting for the storm to blow over, as per usual, except this time it is not going to.
 

Solstice

Senior Member
Messages
641
Posted this on a dutch newsforum. Wanted to relate this to some quotes about the dutch Fitnet-trial. But I can't quite figure out how yet. Anyone here that can help? I think it should include the results announced by the dutch team and one or more quotes about it having a null result at long term follow up. But dunno where to look and search-engines aren't of much help right now. Bit foggy too.

Am needing some more help on this. I'm looking for surveys/research done into the harms of CBT and GET. I've already found this one:

http://www.prohealth.com/library/showarticle.cfm?libid=19041

But it would be helpful to find some more.
 
Messages
13,774
Messages
2,125
By gosh, is there actually a ministry of funny handshakes? (UK comedy reference)
attachment.php

one of many
 
Messages
85
The problem with NICE and PACE is that the population studied was not necessarily comprised of ME CFS patients. The criteria used were the OXFORD criteria, a loose fatigue description at best. It must be emphasized that this is a physical disease and not a psychological condition.
If we allow the OXFORD criteria to define the PACE study then we cannot complain that the study describes their outcome, in fact it possibly does describe an outcome in non ME CFS patients.
 

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
I'm looking for surveys/research done into the harms of CBT and GET.

Are you also collecting data on people living with ME who have been psychologically harmed by experiences with the health care system?

I'm thinking of the quote from Dr Nancy Klimas about how patients came to the doctor with ME and left with PTSD.
 

user9876

Senior Member
Messages
4,556
The problem with NICE and PACE is that the population studied was not necessarily comprised of ME CFS patients. The criteria used were the OXFORD criteria, a loose fatigue description at best. It must be emphasized that this is a physical disease and not a psychological condition.
If we allow the OXFORD criteria to define the PACE study then we cannot complain that the study describes their outcome, in fact it possibly does describe an outcome in non ME CFS patients.

There outcomes are not sound whatever the criteria. They are subjective in a unblinded trial where interventions aimed to change views on symptoms. They have also fiddled with the defined outcomes and particularly the recovery criteria.

Given their methodology and what we have seen of the data it says that their interventions don't work (whoever they are trying them on).
 
Messages
2,158
Given their methodology and what we have seen of the data it says that their interventions don't work (whoever they are trying them on).

I think that's the key point - they used a really loose definition, I think in order to skew the results, assuming their treatments would work for 'fatigued' patients.

When they found they weren't even working on people who didn't have ME/CFS, they fiddled the outcome criteria to make it look as thought they worked.

That has now been shown to be a sham, fraud, whatever you like to call it.

So they are left with having proved, inadvertently perhaps, that not only are their treatments useless for ME/CFS, they are also useless for 'fatigue'.

If I wasn't so angry at the harm this fiasco has done, I'd think it was hilarious.
 

Solstice

Senior Member
Messages
641
Are you also collecting data on people living with ME who have been psychologically harmed by experiences with the health care system?

I'm thinking of the quote from Dr Nancy Klimas about how patients came to the doctor with ME and left with PTSD.

Just to clarify, I myself am not doing any research. I was just posting on a dutch message-board and was seeking for some help laying out some facts here. Which I got and i'm grateful for. There were some comments on there I was able to counter with some facts about f.e. the Fitnet and Pace study thanks to pieces people here gave me. I added some data from patient surveys to get the point across that it's not just that CBT and GET aren't helping, it's that they're harmful.

Someone talked about made-up diseases and I was able to relay that with info about the metabolomics research done by Hansen, Fluge/Mella and Naviaux. Just wish more people would've read my little topic ;) . But it's a start, it's great how we have more and more credible tools at our disposal to educate people.