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In the patient community, it seems somewhat common to refer to instances where PEM (or a crash) led to worsening of the condition which was permanent. I have however yet to find a reference to this in the literature, if someone knows of one, I would be grateful as it is of interest to me, thanks!

It’s like how they celebrate and glorify the winner of the hunger games, while ignoring and not doing any funeral or anything for the 23 others who died.

Is there a recommended browser to use when editing mepedia on mobile? I’ve managed a couple edits, but atleast on my safari browser on my phone it’s very clonky and the ui has some obvious bugs. Am unable to use tablet or laptop due to severity.

Wondering how they found a sample of people who fit the CCC and/or IOM, of which >40% rated their health as “good”? Also here is link to pdf if anyone wants: https://www.medrxiv.org/content/10.1101/2024.05.16.24307437v1.full.pdf

Am I allowed to post this in the r/covidlonghaulers subreddit?

I’m so baffled by the fact the BBC will prefer to run stories like this, instead of running stories about people who’ve been bedridden for four years. https://www.bbc.com/news/articles/crgygy8zmzmo 'Stairs left me breathless but I scaled mountain'

@forestglip I think Rob Würst studies both people in bedrest and pem and has stated on multiple occasions the abnormalities are different. maybe his unite to fight talk and his research might be relevant to the mepedia page you are making.

Still paywalled unfortunately

Is there a transcript available somewhere?

cheers :)

Small question, it’s not too important so please don’t take the time to do a too long answer, but if you had the opportunity to put a little money in one of these 3 charities, which would you choose: * ME association * ME Research UK * Invest in ME Research

shows up for me. maybe give it some time.

Agreed, but since most major diagnostic criteria have a 6 month clause (except the ICC, but the ICC is quite strict in other ways) doesn’t that become redundant? It’s also highly likely that ME/CFS recovery rates are actually higher than most studies point to, simply due to the fact that it is...

Just added this sentence Incase someone unfamiliar with ME falls onto the page.

That’s definitely a good idea! Mepedia is in dire need of some active people on it these days :)

Hi, As far as the terminology used in many studies and guidelines, I’ve noticed that subsets of Long Covid patients are often described as “fitting the diagnostic criteria of ME/CFS” or “having symptoms identical to ME/CFS” but it is rare that they are described as “having ME/CFS”. Why is...

@dave30th :)

I didn’t read the study but this sounds like they just tested it one-off on mild and moderate people who might have been experiencing adrenaline which helps cognitive function. No accounting for PEM or for home/bedbound severe patients would be a likely explainer to why cognitive impairment is...

Yeah, I somehow feel these authors might be more open to constructive criticism than some of the UK BPS crowd. I hope someone will have the energy to send them something.

Open Letter to BACME: https://organise.network/actions/petition-an-open-letter-to-anna-gregorow-Nks6ZAJG Sorry if this has already been shared, am brainfoggy but tried to look through this thread and couldn’t find any mention.