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I really like that. How should we do this. Do you want to directly overhaul the article with your draft, or should we maybe make an “invite only” google docs where people can make edits and comment, improving it until there is consensus to replace the original me-pedia page. Maybe we could even...

It sounds like they are using “chronic fatigue syndrome” to mean chronic fatigue since they are referring to it as a symptom and not an illness.

I wonder if it is worth shortening it. If I was a journalist looking at that page, I might read the first paragraph, then quickly skim through the rest, be overwhelmed by the length and “chaos” and just go google the CDC page instead.

Hi, I’m creating this thread because the Me-pedia primer for journalists is outdated. However, it is likely still being seen by many journalists: * The page gets hundreds of views per day * It is the first google search result for various searches related to journalism and reporting on ME * The...

The Australian Broadcasting Corporation is looking for stories from people with disabilities. Are you an emerging content maker with disability? Do you have a story that needs to be told? The ABC is partnering with International Day of People with Disability (IDPwD) to recognise the 4.4...

hmmm. I made sure the thread is not ignored, I don’t know what else I can do. In this case, since you quoted my post, I did get a notification. But otherwise the thread is “invisible” for me.

Amazing! Thanks for making! Is it only me who doesn’t see new messages in this specific thread and has to manually input the URL? I never see it in “recent posts and threads”. I even set a notification every time there is a new message, but it doesn’t seem to work (while working on other threads...

Very fair, I was thinking in twitter time where after a couple of days any message gets drowned out which makes replies not that likely, but I will update if I get a response.

I tried 2 days ago to ask them via twitter but also recieved no response. It is hard to know if it is not being seen by the people who can issue such a decision or that the response is no.

Has there been an attempt to ask the Austrian ME/CFS association to share the petition and sign the open letter? I noticed they were not on the list of signees.

I will note that the current doctor treating me is a “quack” and claims to do all sorts of crazy things like be able to tell what kind of allergies I have by putting crystals on my stomach, but he is also the only doctor who takes ME seriously in my area. Without him I would be forced into...

Your best bet is probably to try and find an as local as possible ME group or association, and ask them for recommendations. And/or to ask a national group if there are any good virtual options reimbursed by your insurance.

Would you be open to virtual care?

For the US, I think the new mayo clinic proceedings would be good to have on you.

Roughly translated: “If you even want to apply for a subsidy in the 2nd round for biomedical research into #MEcvs in the Netherlands, one of the requirements is "collaboration with a professor of psychosomatics", which was already discredited in the 1st round. LekkerGewerkt @ZonMW manmanman...

Agreed. I will note that the economist often takes and publishes letters in responses to articles, in case anyone wants to write one.

“There is still time to contact your candidate MEP(s) for the #EUelections2024 from 6-9 June! Instructions can be found in the tweets below ✍️ you can email or tag politicians on social media. The more awareness we raise about #MECFS and #LongCOVID the better. ”

Don’t curse it…

Don’t know if anyone has experienced this, but after meticulously tracking weight, I realise that I gain weight when pacing well and loose weight in PEM episodes

Residents to get help with long Covid symptoms - BBC People who are struggling with symptoms of long Covid can get help from a council-funded exercise scheme. The 12-week long Covid recovery programme is open to resident from North Northamptonshire with sessions held at Lodge Park Sports...