A general thread on the PACE trial!

Sly Saint said:
Coronavirus in Scotland: Charity warns Covid will cause a spike in ME cases - as it calls for 'harmful' exercise treatment to be banned

article here
https://www.heraldscotland.com/news...d-charity-warns-covid-will-cause-spike-cases/
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The PACE study, a randomised control trial with 641 participants from Scotland and England, concluded in 2011 that psychotherapy and exercise could significantly improve and sometimes cure ME.

Patients who claimed GET was actually making them worse were dismissed and accused of hijacking the debate with a "very damaging" agenda.

Unpublished data from the trial was eventually released in 2018 following a lengthy legal battle brought by an Australian patient, resulting in other scientists criticising PACE as fundamentally flawed with "grossly inflated" recovery rates.

A 2019 review of the PACE trial by the UK's Health Research Authority did not find fault with the investigators, however.
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I used a doctored email from MEAction to contact my MP and MSPs - I have had an interesting response from one of the MSPs parliamentary assistants where I think they are confusing pacing with PACE - copied below without names
I have replied requesting a reference for the PACE info and raising the issue of informed consent and recording of harms - we shall see what comes back ...


Dear ,

Thank you for contacting the office of

I note that Scotland does not have a SIGN Guideline for M.E, therefore it is assumed the NICE guidance for Chronic Fatigue Syndrome is used.

NICE do advocate GET and CBT as therapies for M.E, but due to the controversy over whether this is the right approach the NICE guideline is to be reviewed in October 2020.

Some advocate the use of PACE rather than CBT and GET (which tends to push the patient a bit further beyond their limit and so creates more harm than good) whilst PACE 's strategy is to do what you can manage at the time.

As with any therapy, it is the patient's right to be able to make an informed consent and therefore treatments can be refused by patients if felt to be unhelpful or harmful.

Hopefully the revised NICE guidance will offer more choices and not be as rigid as currently.

NICE guidelines are evidence based recommendations for health care in England - National Institute for Health and Care Excellence.
SIGN guidelines are evidence based guidelines that identify and promote good clinical care in Scotland - Scottish Intercollegiate Guidelines Network.

Please do not hesitate to contact me if you have further questions.

Yours sincerely,
 
It was unpublished but from the quoted part it looks like a poorly researched and one-sided article.
 
Snow Leopard said:
I noticed that too, I can't help but be a little suspicious as to the reasons why...

Cached:
https://webcache.googleusercontent....-cause-spike-cases/+&cd=1&hl=en&ct=clnk&gl=au
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OK yeah that was a bad article.
Onset typically follows a bout of viral or bacterial infections such as glandular fever or pneumonia, with evidence also suggesting that ME is more likely to arise if the patient felt fearful or anxious during their illness - something which is more likely in a pandemic scenario.
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Wrong. There are claims of this, not evidence.
In 2017, the American Centres for Disease Control removed GET from its recommended therapies for ME following an outcry over a controversial clinical trial.
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Not what happened. At all.
The PACE study, a randomised control trial with 641 participants from Scotland and England, concluded in 2011 that psychotherapy and exercise could significantly improve and sometimes cure ME.
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Also wrong. The researchers did claim that during their PR tour. Neither the evidence nor the papers claim that. In fact the papers explicitly state it is not curative.
Patients who claimed GET was actually making them worse were dismissed and accused of hijacking the debate with a "very damaging" agenda.
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Odd framing without attribution that makes legitimate complaints sound unhinged or insincere. This is poor journalism.
She said: “Graded Exercise Therapy (GET) will not be suitable for everyone with ME/Chronic Fatigue Syndrome (CFS). While some studies report people feel worse after GET, these studies also reflect some people with moderate to mild symptoms of ME/CFS have found GET to be beneficial in treating their condition.
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"Being beneficial" is not a valid anything. It is also false considering the numerous surveys and studies showing otherwise.

It had a few good parts but overall very poor journalism. Better that it's not out there. Weak.
 
Man with a very prominent platform who calls a population of millions of sick people begging for help a "small vocal minority of very damaging individuals" has favorable opinions on being angry about bad research and health policies.



Not really PACE-related but given his insulting lies labeled at us for daring to question bad science, it is in very poor taste.
 
how is it that Horton is so unaware that he has been in a powerful position of aiding and abetting poor quality 'science'? So this is what happens. This is a direct result of elevating incompetent science / political people with only a superficial comprehension of science.
 
Horton is rushing out a book on COVID19 this month.

I'm trying to remember what he was saying about travel restrictions and other COVID related issues back in Jan/Feb... It's easy to throw stones at people in glass houses...

edit - seems he was somewhat concerned from Feb 1st, but didn't make any specific recommendations.







 
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