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LCAP has started a campaign to try and push Sander’s long covid moonshot bill, to only allow research funding to go into viral persistence. Senator Sanders' suggested legislation for Long Covid lacks direct focus on viral persistence of SARS-CoV-2, allowing for it to be combined with various...

Hi I wanted to create a thread on the organisation long covid action project to keep up with what they are doing. (A lot of which worries me.) This organisation says and claims as fact that long covid is a single disease caused by viral persistance. From their front page: Long Covid is a...

That honestly sounds like a good way to give cognitive pem

I always assumed that Wessley and co. genuinely believe in their theories and that they are correct. But seeing this number of inconsistencies in their own theories almost makes me think they might have malicious intent. (I’m sure they don’t but it is not hard to imagine).

Thank you for the very detailed and helpful answer. Much appreciated:)

Wow scrolling through that made me so angry. And the number of contradictions are crazy!

Hahhahah that is brilliant. My bad I updated the original post to clarify “Medically unexplained physical symptoms”.

Hi. Since the MUPS (medically unexplained physical symptoms) crowd often like to classify ME as MUPS. I’m wondeting if there is a review or any type of research explicitly arguing against the classification of ME as MUPS?

If anyone has been wondering why ME/CFS is getting so much more attention in Austria in the past few years, a lot of it is due to the fact that two members of one of the richest families in Austria became sick with ME/CFS. This family has been using its influence and money to fight for ME...

Wow I read your amazon review of the book and it is really well done. Thanks for writing that.

You might benefit from reading the NICE guidelines. Specifically section 1.17 to give you an idea on severe ME. :) https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#care-for-people-with-severe-or-very-severe-mecfs

Yes, just so you know: many of the most severe sufferers, of ME, are unable to hold a conversation at all.

Thanks Dave for the explanation. And I’m not sure I can say it here, but thanks so much for everything you do for the ME/CFS community, you are an amazing person. :)

I think it would be important to mention in this study that you are already self selecting a cohort of less severe ME/CFS patients. For many people with severe ME, or even moderate, participating in a long conversation on potentially emotional topics is not possible due to Post-exertional...

It is so frustrating to continually see studies like this taken out of context and extrapolated by the media to feed the narrative that Long Covid is begign and short term.

Thanks Jonathan for the clarification :)

Hi, I’m working on pages related to ME/CFS in wikipedia, and I’m wondering if someone has a good source(s) to support the fact that the science media center often portrays ME as psychological. I’m using the Monbiot opinion piece and also the link to Wessley being a founding member, I would need...

I hope he writes up something on it, I had edited the “Controversies related to ME/CFS” wikipedia page to add a sentence or two about the science media center-wessley psychosomatic connection in the “researcher harrasment” section, but some people thought there needed to be more sources before...

I’m not an expert but I think they should do autopsy studies. Given the lack of findings in ME/CFS, if there is long term persistance, its probably somewhere you can only access by autopsy. And if they find nothing, they should move on.

This was posted and got really big on the r/covidlonghaulers subreddit, I personally tried to post some comments telling people she was exaggerating/not very factual, and got heavily criticised for it. Unfortunately many people in the long covid community seem to have jumped on the viral...