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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.

Forgive this possibly very ignorant question but: Would it be accurate to say FND is basically a way to diagnose dysautonomia, whilst blaming it on the patient?

Is there anything we can learn from that? I looked into it a bit and chronic-lyme disease seems to be dismissed while post-treatment lyme disease is documented and acknowledged, what gives?

Oh my bad yes thats what I mean (sorry english isn’t first language).

Sorry I don’t know if this is off topic for this thread but we have the opposite problem going on in Switzerland. ME/CFS is not a recognised condition here and there are virtually no experts or anyone with experience except psychologists. What the Long Covid clinics do is whenever they see...

I’m glad you figured it out. That sounds like it would have been really stressful and tough. I permit myself to ask if you would still consider you have/had “IBS” since you found two intolerances/allergeries which were the driving force behind your symptoms? I feel like there is definitely...

(I couldn’t find a thread dedicated to IBS so making a new one). Based on my knowledge of ME I’ve always assumed IBS is some sort of disease or something where no pathology has been found yet. However when I go online the only thing I can find is “Functional Gastrointestinal Disorder” which, as...

How have I never been shown this before; amazing resource. Thanks!!

Hi, I usually can only use my phone for a couple minutes every week or so but sleep deprivation and an unknown allergic reaction gave me lots of adrenaline. I am using this to request help to compile a couple resources that will help my parents care for me. Obviously I am super thankful to...

Huh since I am very severe too, maybe it has something to do with severity?

No way so the most notorious of these evil invisible hands behind the media people has funding links to BPS research, who would have guessed.

Hi Nellie, It is oxygen saturation in the blood :)

I’ve never seen this mentioned anywhere else but here goes: I track my spo2 levels all the time (curiosity I guess) and ive noticed something interesting: When I feel like I’m overdoing it cognitively my spo2 jumps to 99% When I feel like I’m overdoing it physically my spo2 dips below 94% When...

yeah they liked the content but thought the “style” of the website was outdated… (tells a lot about their priorities)