Recent Activity
Activity stream for all registered members at Science for ME.
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alex3619 replied to the thread What are the necessary conditions and criteria for a theoretical model of ME/CFS?.
I just want to clarify two points. First, a large study of healthy people to be followed, at least initially healthy. Second, the point...
May 21, 2024 at 11:24 AM -
Milo liked alktipping's post in the thread Preprint Epidemiology of Myalgic Encephalomyelitis among individuals with self-reported CFS in BC, Canada, and their health-related quality of life, 2024,Nacul.
Also we do not want to be labelled as catastrophising . the patient blaming in that choice of wording should be shamed
May 21, 2024 at 11:13 AM -
Kitty liked Caroline Struthers's post in the thread Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review.
Cochrane got a consultant (Scott Wayne, an expert in mediation) to help re-vamp their complaints procedure. With feedback from the...
May 21, 2024 at 11:08 AM -
Kitty liked Trish's post in the thread Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review.
In out latest letter to Cochrane about harms we also formally presented the petition, including the list of organisations supporting the...
May 21, 2024 at 11:08 AM -
Kitty liked Hutan's post in the thread Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review.
The committee sent a letter to Cochrane which you can find here. S4ME: 2023 Open Letter to Cochrane - request for action on the ME/CFS...
May 21, 2024 at 11:08 AM -
Kitty liked Sean's post in the thread Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review.
So when does this get sent to Cochrane? Or has that already happened, and we will just send an update at some point?
May 21, 2024 at 11:08 AM -
Caroline Struthers replied to the thread Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review.
Cochrane got a consultant (Scott Wayne, an expert in mediation) to help re-vamp their complaints procedure. With feedback from the...
May 21, 2024 at 11:04 AM -
Fainbrog liked Lou B Lou's post in the thread BBC Lightning Process exploits people.
2020 Interview about Lightning Process, with ME patient and advocate Joan McParland (Founder and former Chair of Hope 4 ME & Fibro...
May 21, 2024 at 11:02 AM -
Fainbrog liked Deanne NZ's post in the thread BBC Lightning Process exploits people.
@Hutan I can understand you being disappointed because we know it could have gone so much further and been more damning. But I think it...
May 21, 2024 at 11:02 AM -
Fainbrog liked Hutan's post in the thread BBC Lightning Process exploits people.
I found that disappointing. There's a lot of nonsense and misinformation and not all of it is coming from Phil Parker. Una the rower...
May 21, 2024 at 11:02 AM -
bobbler liked alex3619's post in the thread What are the necessary conditions and criteria for a theoretical model of ME/CFS?.
This might be the case but my concern is that its looking like its mass dysregulation, and everyone might be slightly different, leaving...
May 21, 2024 at 11:02 AM -
bobbler liked Joan Crawford's post in the thread What are the necessary conditions and criteria for a theoretical model of ME/CFS?.
This is the overwhelming presentation in clinic. Patients repeatedly try and do x or y. Endlessly. Doom loop of try, fail. Rest up...
May 21, 2024 at 11:00 AM -
Fainbrog liked yME's post in the thread BBC Lightning Process exploits people.
https://www.bbc.co.uk/news/health-69040592 A little late to the party at least for this forum members
May 21, 2024 at 10:59 AM
