Updated - The PACE trial: Harm Video

https://www.youtube.com/watch?v=arsj2hPo93w

The PACE trial evaluated Graded Exercise (GET) Therapy and Cognitive Behavioural Therapy (CBT) as treatments for ME. Exercise as treatment seems counterintuitive when even minimal mental or physical exertion leads to a worsening of symptoms and reduced function [1]. The defining symptom of ME is that even minimal exertion can cause a crash (flare in symptoms) for days/months/weeks. In severe cases it can cause relapses and patients become significantly more disabled for months/years; some never recover. Multiple surveys have consistently shown that Graded Exercise makes over 50% of patients worse [2]. Over 85% of patients advised to maintain or increase their activity whilst feeling ill deteriorated [3].

The definition of harm in the PACE trial may not have been sensitive enough to record serious adverse events [4]. There is no evidence that UK clinics inform patients about the risk of permanent deterioration, screen for harm, or record harm effectively [5]. The yellow card system for adverse incidents and drug interactions in the UK does not allow harm to be reported from behavioural treatments [6]. A parliamentary debate voted unanimously to withdraw Graded Exercise and CBT in January 2019 [7]. The UK Government failed to take any action.

"The whole idea that you can take a disease like this and exercise your way to health is foolishness. It is insane." [8]

REFERENCES:
[1] http://www.workwellfoundation.org/w...T-Letter-to-Health-Care-Providers-v4-30-2.pdf
[2] https://journals.sagepub.com/eprint/hWSxVIBTzDtqisvafkhE/full
[3] https://cutt.ly/5twIHSO
[4] https://journals.sagepub.com/doi/full/10.1177/1359105317697323
[5] https://journals.sagepub.com/doi/abs/10.1177/1359105319854532?journalCode=hpqa
[6] https://www.meresearch.org.uk/cbt-get-parliamentary-question/
[7] https://me-pedia.org/wiki/UK_Parlia...anuary_2019#Appropriate_M.E._Treatment_Motion
[8] https://me-pedia.org/wiki/Paul_Cheney

 

Thank you @Trish @Hutan

 

Absolutely brilliant! I'm so impressed with your work @Adam pwme, thank you so much!

 

Thanks Anna appreciated

 

thank you so much for making this! really well made

 

Thanks Rainy!

 

Liked and shared on face book it would be great if this would get far more coverage . thank you for the great work you do .

 

Brilliant again @Adam pwme .
Perhaps a concerted coordinated tweeting for #ME awareness Wednesday next week?

 

Original version here, https://www.s4me.info/threads/new-video-the-pace-trial-part-2-harm.10616/

 

Thanks @alktipping and @Amw66.

It would be good to get more coverage and it’s a good idea to share during ME awareness.

 

Another amazing summary and presentation, Adam!

 

Just was searching for patients' accounts of harms and retreived this excellent video.

Apologies if off-topic but can't find a better thread now: When writing about potential harms, I think it would be good, in addition to the sources provided in Adam's video, to have a good collection of persons' with ME accounts on deterioration with and after GET/ CBT that could be used for quotes.

I realize individual accounts are neither representative nor are they adequate to proof causality. Still I think they give wight to patients' suffering and strongly cast doubt on the claims that GET/ CBT are safe.

If such a collection of accounts exists, could anyone direct me to it?

Not able to search now but I remember Emma Shorter's talk at the Scottish parliament was excellent.

Do we have a transcript of that anywhere?

(Now struggling with dealing with videos)

 

Wow, I've never seen Ron Davis speak about CBT/GET before. He doesn't talk about advocacy much, as if the idea the ME is mental illness is too absurd for him to even engage with.

 

That's the impression I get from most biomedical ME researchers, they'd rather not engage in what seems to them as absurd politics. The research demonstrates there are things physically wrong with pwME.

 

could be on this thread
https://www.s4me.info/threads/petition-review-treatment-of-people-with-me-in-scotland.3795/

or this one
https://www.s4me.info/threads/scott...t-on-meaction-scotland-petition-2019-20.9760/