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Also the ME/CFS community tends to be lot more open to non-dominant identities. This is just personal experience but I know 2 people who described themselves as cisgender before ME/CFS and since then have changed pronouns. I think the fact ME/CFS community tends to be more welcoming (not...

Great on Elke to have the courage to look back and publicly criticise past statements she made. Lots of people could learn from that.

@ME/CFS Science Blog made a bluesky summary of this study

Please correct me if I’m wrong. But if I understand correctly both Decode and Sequence ME use only nuclear DNA, hence missing out mtDNA. Is a large scale analysis of mtDNA something that would be important to have as well? Could it lead to higher heritability estimates?

And acting like the provocation came from Post-COVID researchers. Not FND researchers basically denying post-covid or saying “it’s just fnd”.

I don’t understand how they expect us to go along with FND eating up ME / Post-COVID. When many of us have experienced Medical Professionals using FND as a way to delegitimise our diagnoses, prescribe harmful treatment that wouldn’t be prescribed under ME/LC (theoretically), and postulate a...

I’m not sure I agree with everything you’ve said but I definitely agree in my experience we can sometimes be a bit cold or strong on that particular point which perhaps is hard on new people. But also this is the one haven from the “you have to try things to get better”/unsollicited drug advice...

Welcome KNBaldwin Unfortunately there isn’t much thats useful with relation to ME since we don’t have a biomarker/replicated blood abnormalities yet. Bloodwork will mostly be useful to rule out other conditions.

Couldn’t that be explainable through genetics and shared trigger? For example both my mum and I got sick after the same COVID infection. I assume we both shared genetic susceptibility and we also both got an infection that for one reason or another was particularly prone to causing post-viral...

We have an LDN and Mestinon double blind RCT in the works. And another just LDN one. Scheibenbogen also mentioned trialing apiprazole (abilify) in future plans IIRC. I don’t think people in the forum say these drugs should absolutely not be prescribed. At least in the case of OI ones and low...

Par for the course for a study coming from University of Zürich unfortunately. The interpretation is hilariously off mark.

Didn’t David write about some inflated FND prevalence claims coming from Carson or Stone.

For what its worth with the simple fact the ME community seems to really be the most “out” in the UK. Like that seems the country with the most awareness. I have had lots of influence from the UK over the past couple years. I mean I spend time here where a large chunk of people are from the UK...

Often its pressure from family members you rely on. For them to accept your illness or care for you they require medical legitimacy. And so they pressure you to see doctors more as you deteriorate. When you’re too severe to care for yourself and rely on them there’s not much you can do. Then...

I wonder if the problem is with the MEA’s structure per say or mostly the people who happen to be on top of that structure.

For what its worth I wanted to try a tamagochi (virtual pet), mostly to distract myself and for fun but i quickly found the expectation of doing tasks regularly (or the pet would “die”) was way too much for me at my severity.

Absolute gold coming from Japan. Are there awards for most ridiculous study?

Fabian Fritz a German ME advocate (translated) Original Post: (Only visible logged in) https://bsky.app/profile/ffhambu.bsky.social/post/3m7n5n3dj222w Seems relevant to this thread.

The dude who wanted to give me an FND diagnosis did the same to me. When I was bedridden!

Post on reddit by Harry (visible cofounder). https://redlib.r4fo.com/r/cfs/comments/1piahqr/im_the_founder_of_visible_and_i_made_a_mistake/ (snippets) Edit; Oops I see I double posted with Daisy. I’ll keep my post since I added quotes.