Forum thread -
Jama - Prevalence and Characteristics with Post-COVID-19 Condition Among Non-hospitalized Adolescents... - Selvakumar, Wyller et al, 2023
That paper, written by a large number of BPS proponents, had lots of problems.
One was that they assumed negative tests equalled no SARS-CoV-2...
This thread is for a list of sub-national Canadian ME/CFS and Long Covid organisations.
National organisations are listed in ME/CFS and Long Covid charities/ organisations - International and National.
MECFS Canterbury - info@mecfscanterbury.nz (Canterbury)
Complex Chronic Illness Support -...
This thread is for a list of sub-national Swedish ME/CFS and Long Covid organisations.
National organisations are listed in ME/CFS and Long Covid charities/ organisations - International and National.
RME Dalarna Vastmanland
RME Halland
RME Jönköping
RME Kalmar
RME Kronoberg Blekinge
RME...
This thread is for a list of sub-national Canadian ME/CFS and Long Covid organisations.
National organisations are listed in ME/CFS and Long Covid charities/ organisations - International and National.
AQEM – Association québécoise de l’encéphalomyélite myalgique - https://aqem.org/ -...
This thread is for a list of sub-national Australian ME/CFS and Long Covid organisations.
National organisations are listed in ME/CFS and Long Covid charities/ organisations - International and National.
ME/CFS/FM Support Association Queensland - http://www.mecfsfmq.org.au - mefmtba@bigpond.com...
Canadians, we are trying to work out what ME/CFS and Long covid organisations we should contact regarding the Cochrane Exercise Therapy Review campaign.
Millions Missing Canada has signed. Thank you.
Canada AQEM – Association québécoise de l’encéphalomyélite myalgique - we haven't had a...
I watched the Diane O'Leary presentation on the ethics around medical care for people with ME and LC.
There was no mention of CFS, and not a whiff of retaining a CFS label for psychosomatic people. Perhaps some of the things said on this forum did make a difference.
It seemed reasonable stuff...
I watched the Amy Proal presentation on viral persistence - just over 30 mins. It was well presented and easy to follow. Nothing new for people here I think, but there are some nice links to papers e.g. a list of all the Covid-19 papers finding viral persistence. One key idea is pathogens...
It's possible that some of this has already happened, with the UK NIHR seeming to have stepped back a bit.
I think I read somewhere, either directly or between the lines, in Cochrane's online material that their big announcement of 'patient-centred' stuff back in 2021 was in response to...
@RedFox
Check out this thread:
Post mortem tissue donation and autopsies (Members only)
There's a post there about the US NIH NeuroBioBank. People can sign up to make a directive for tissue donation. It was mentioned on a NIH ME/CFS call.
This is important, good on the MEA. It's a difficult thing to think about, especially given the relatively young upper age limit.
Relevant threads:
Post mortem tissue donation and autopsies
ME Association: The UK ME/CFS Post Mortem Tissue Bank and Tissue Donation
Here's the cumulative graph of petition numbers over time. You can see that numbers are still climbing steadily. 10,000 is the top line on the y axis scale.
Given the substantial number of Canadian signatures (778), I think we should be able to get more organisations from there listed as...
We have posted this update on the petition:
PETITION UPDATE
22 Oct: The office of the Editor-in-Chief replies
OCT 21, 2023 —
In our letter of 8th October addressed to the Chief Executive of Cochrane, we asked for "clear answers to the following questions:
1. Will the 2019 Larun review that...
And more great news from Sweden, another organisation signing:
RME Stockholm
Thank you very much. With each organisation that signs I think of the people who care about this issue and want change. I find it very motivating.
That brings us to 54 organisations. I wonder how many ME/CFS...
Some more excellent news from Sweden - two more organisations signing:
RME Väst
#MillionsMissing Sweden
Thank you to the advocates (Mango :thumbup:) involved in making that happen.
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