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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...

idk if this helps you but I have this when in pem. the only thing that helps (and ive tried a lot) is pacing. Doctors never took it seriously and my spo2 levels are low but not concerningly low.

I didn’t see anyone calling her out. Just some long covid people agreeing with her because they believe that ME and LC are completely different (the viral persistance ideologes).

Yes Janet did exaggerate a lot. I think there is still some fair criticism though which is that not all cases of ME are post infectious and this classification definitely neglects those that aren’t. And more generally, for an association called “solve ME” they spend an awful lot of resources and...

Not sure if this fits into the thread but Janet Dafoe sent some harsh tweets about solve ME a couple days ago.

“How might we design and implement innovative solutions to improve the lives of those with Long COVID today?” Removing Wallitt and similar from having leading roles into LC research at the NIH would be a good start.