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Yes, deteriorations can be missed in average figures. This has been recognised in the reporting of harms: good reporting of harms includes that. Note that good reporting of harms in trials covers all problems that arise, even though sometimes problems can arise by chance e.g. just because one...

An extract from my 2011 paper, Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, for what it is worth: https://www.iacfsme.org/assets/Reporting-of-Harms-Associated-with-GET-and-CBT-in-ME-CFS.pdf

She has just included me in this tweet: https://twitter.com/JTSglobalhealth/status/1291376658285580292 https://twitter.com/ISARIC1/status/1291283225030033408

In case it is of interest/use, I have posted a thread with some extracts here: https://twitter.com/TomKindlon/status/1291178102811484163 https://www.facebook.com/TomKindlonMECFS/posts/1717762998371818

http://charlestownbridge.com/2020/08/05/letters-to-the-editor-78/

https://www.usnews.com/news/healthiest-communities/articles/2020-08-05/coronavirus-survivors-show-signs-of-chronic-fatigue-syndrome

Frustrating to see this was published: https://www.bmj.com/content/370/bmj.m2923

https://www.odt.co.nz/star-news/star-national/covid-19-could-lead-explosion-tapanui-flu-cases

Merged thread Severe ME day: August 8, 2020

Thanks for highlighting it to me. I think I will be cautious about criticising the researchers publicly at this stage given my work with the Irish ME/CFS Association and that we may wish to work with them at some stage (there has been very little biomedical ME/CFS research ever in the Republic...

Perhaps of interest: Some people do seem to claim to have been part of the PACE Trial for some reason when they weren't e.g. they mixed up trials or even just the clinics.

https://www.emerge.org.au/anchor-study

https://www.indiaspend.com/covid-19-is-weirder-lasts-longer-than-any-disease-i-have-come-across/

No ME, CFS or PVFS criteria that I’m aware ask people to separate out symptoms they had at the start from the others. And I don’t recall anyone saying not to mention the symptoms one had at the start.

"Covid And Chronic Fatigue: We Must Learn From ME Patients’ Suffering" (July 24) https://eachother.org.uk/covid-and-chronic-fatigue-we-must-learn-from-me-patients-suffering

Good to see though simultaneously sad to ponder they wouldn’t have the money to fund most of them. More money needs to be raised privately to ensure a wide mix of researchers in the field