Sonic Death Monkey
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parkesy1701.bsky.social
Sonic Death Monkey
@parkesy1701.bsky.social
96 followers 290 following 3 posts
Myalgic Encephalomyelitis (ME) sufferer. Ill since Nov-19. On long term sick trying to keep it together for my family. Just about managing. #ME #POTS #MCAS #LC
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Reposted by Sonic Death Monkey
karenlhargrave.bsky.social
We are sad to announce that #ThereForME has suspended our collaboration with the ME Association.

We feel that concerns from the community must be heard. The door remains open to continue our collaboration once action is taken and concerns addressed.

More here 👇
We are very sad to announce that the #ThereForME campaign has suspended our collaboration with the ME Association. Like others in the ME community, we have deep concerns about a recent editorial published by the ME Association and authored by the ME Association’s Chairman (‘Animals need to move’). We wrote to the ME Association today expressing concerns about the editorial and asking for an update on the actions that the ME Association would be taking to address them. We did not feel that the response we received was adequate and so we have taken the decision to suspend our collaboration with immediate effect. We are very proud of how we have managed to bring the ME and Long Covid communities together under a shared advocacy message since launching the campaign four months ago. We believe our community is strongest when we can work together and so this is not a decision that we have taken lightly. However, we are also very grateful for the trust we have built with the ME community. We therefore feel that we cannot in good conscience continue our collaboration with the ME Association until the very valid concerns from the community have been sufficiently addressed. We have made clear to the ME Association the actions we believe are necessary from their side in order to resume our collaboration. The door remains open to continue working together once we feel sufficient action has been taken. We very much hope that this will be the case. In the meantime, we will be focusing our time and energy on what we feel our campaign does best: speaking up for people with ME and Long Covid, who will always be at the heart of our campaign. Karen, Emma and Oonagh
November 18, 2024 at 8:43 PM
parkesy1701.bsky.social
First post here (I think) and I’m really torn where I go. I see a lot of the #ChronicIllness #ME #pwME community here but I follow a lot more other interests on the other place that’s not here (yet) and my brain can only really do one of them 😬
November 13, 2024 at 12:14 PM
Reposted by Sonic Death Monkey
georgemonbiot.bsky.social
This story is one of the most disturbing I've ever covered. It's about how the views of a deeply weird ideological sect affected science, medicine and the media, with devastating impacts on patients. Please read and pass on. This horror has to stop. www.theguardian.com/commentisfre...
Maeve Boothby O’Neill died because of a discredited view of ME. How was this allowed to happen? | George Monbiot
Chronic fatigue syndrome is as physiological as a broken leg. ​We must learn all we can from this tragic case, says Guardian columnist George Monbiot
www.theguardian.com
October 18, 2024 at 6:39 AM