Public health journalist investigated problems with $8 mil. PACE trial

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

I'm not sure if I can link to this, but it's on the worlds biggest virology blog, and is well worth googling for.

David Tuller is academic coordinator of the concurrent masters degree program in public health and journalism at the University of California, Berkeley, and has been investigating patient's concerns about the way results from the PACE trial have been used to justify claims that CBT and GET are effective treatments and lead to recovery. He's pointed out some important problems with the way the trial was conducted and reported.

Tuller's piece is quite long, and spread over three parts, but a short summary has been posted by ME Action, titled "Investigative Journalist Exposes PACE Trial".

http://www.meaction.net/2015/10/24/investigate-journalist-exposes-pace-trial/

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  • Posted

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  • Posted

    Thank you fidd.

    Over here in England, trials for cbt being the only therapy that was deemed to work for anxiety and depression. This is more likely from a cost perspective than anything else as cbt is usually carried out for 6 or 8 sessions. Infact, my own cbt/ me clinic is only allowed to give 8. Scary what statistics can bend.

    B

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  • Posted

    Thanks Fidd; yes I tend to agree with what the latest reports are saying, as over the years I have Tried to do the PACE/ing, but to no effect....in fact I have ended up with More muscle pain/burning sensations in my legs (which I know is more to do with the Fibro), but the sheer exhaustion of

    Trying to do the "little bit of walking each day" has only increased over the years......and I feel that if we "push" ourselves to do it, it only makes things worse......I am still trying to find ways of improving this (by trialling my Thyroxin and other supplements)....and Yes some days have more energy, but still don't feel that the "walking" is any easier........Bron

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  • Posted

    In case people weren't aware, the trial getting a lot of press today was another PACE trial one. It's results show that at two years, those who did CBT+SMC and GET+SMC did reported being no better than those who did SMC alone. This was promoted to the media as evidence of how amazing CBT and GET are.
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    • Posted

      Sorry, SMC was the control intervention used in the PACE trial that all patients recieved. Originally it was known as 'Standardised Medical Care', and then it started to be called 'Specialist Medical Care',

      Confusingly, SMC is also the acronym for the Science Media Centre, and UK organisation that has played an important role in spinning research to the UK press, but that's not what I was referring to above.

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    • Posted

      Hi Beverley; if you go into Wikapaidia and go to their article re "constructive comparisons" you will find ALL of your answers, as well as what the latest research (compared to previous) is telling everyone of what is felt towards CFS today.....SMC is "Specialist Medical Care"   (according to this site)....GET is "Graded Exercise Therapy".....there are many answers to this, but this one I liked.............Bron
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    • Posted

      Hi Bronwyn,

      Thankyou Re: SMC, its a term I hadn't come across before and my Google search came back only with company's with those initials. The GET I am aware of, although like many on here, question its efficacy.

      B

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    • Posted

      Hi again , have just been sent a link to the guardian article which mentioned SMC. Its heartwarming that so many people have commented but still disheartening that we with this condition well know that GET and CBT Is a one size fits all approach that fits only a few. It can kill people and that fact does not escape me. I Don't know if you 've seen a site on the internet that "cures" cfs/me? It shows a picture of a smiling woman pushing a lawn mower! That's as far as I got. I couldn't read how wonderful their centre is or how effective the treatments because, lets face it, I can't afford that smile or lawn mower!

      I hope your day has gone well and that we here at least get recognized as worth more than the pitence of support that the PACE trials state "work" .Again who was the trial group? And if there was a trial group, did they know they were taking part?

      B

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    • Posted

      Evening Bronwyn,

      I always find it strange that there are different time zones! I understand the theory just seems to surprise me : ) there seems quite a bit In the news about all this over here at the moment. causing quite a stir and there's a petition to the PACE trials asking for them to retract their misleading claims.

      B

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  • Posted

    I'm not sure if I should post this here, or in a new thread, but Prof James Coyne has just done a critical blog on the new PACE paper, titled 'Uninterpretable: Fatal flaws in PACE Chronic Fatigue Syndrome follow-up study'.

    It seems that concerns patients have had about this research for about a decade are starting to be seen as respectable, rather than ill-informed anti-psychiatry.

    James Coyne is on twitter as @CoyneoftheRealm

    There was also a recent piece in Science titled 'Criticism mounts of a long-controversial chronic fatigue study', that detailed the growing recognition of patient's concerns, without taking a position on them.

    On the back of this recent coverage, a petition has been started calling for the retraction of some misleading claims from the PACE trial, this is titled: 'Misleading PACE claims should be retracted'

    For those of us who have watched fellow patients sacrifice so much, and work so hard, to improve the quality of research in this area, and help prevent other patients being given misleading information, it is something of a relief to see independent researchers start to speak out about the problems with the PACE trial.

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    • Posted

      Hi fidd,

      Don't have twitter or fb but have signed and am forwarding to friends the petition as it was in newspaper link I was sent earlier.

      The ocean rises with each drop of rain

      B

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    • Posted

      Hi Beverley; do you think you could send the site, (even by Private Message), so that it can be accessed by us on this side of the ocean (NZ and Aussie Land)......I havn't seen anything similar in our newspapers/CFS/Fibro networks here............would be interesting to follow on through it over here???..................Ta Bron
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    • Posted

      Hi Bronwyn,

      Yes, thought I'd replied already rolleyes will send private message with details. Let me know it gets to you

      B

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