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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.

Do they realise the GET study they are citing (PACE trial) had double the amount of adverse effects in GET compared to control and that was with a sample that didn’t require PEM

(Citing the PACE trial and other GET studies) ?? How can they ask for people who fit the CCC but exclude PEM (PESE). Or does “preexisting” here mean PESE before the covid infection? As far as I can tell, no mention of people being possibly too severe to participate, which isn’t a good sign.

Yes. Don’t know where but it will be available.

hahhahahah brilliant

Thank you for the answer. Maybe i am getting a knee-jerk reaction against CFS and CFS/ME because I associate these terms with research and people who have continually downplayed and psychologised the illness. Personally fatigue (not including brain fog and muscles not responding to input which...

As the title suggests I’m looking for resources on why the Name “CFS” is problematic and “ME” or “ME/CFS” is recommended. Specifically I’m in contact with multiple people and communities that use the terminology “CFS” or “CFS/ME” and I would like to share with them a convincing document or...

Swiss govt long covid advisory group not showing up with no explanation to meetings with swiss long covid organisations.

So refreshing too see they have authors from many patient organisations.

I don’t know unfortunately. Looking at the author list it seems majoritarily Austrian with a couple of Swiss and Germans in too. In the case of Switzerland, we do not have national guidelines for ME/CFS (nor is it even a recognised condition) so I don’t know if this could lead to change in that...