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I wonder how much money has been spent in total on the NorCapital study and these publications and what really has come out of it.. Now Wyller is doing a trial on music therapy as treatment for ME. He wants to do an LP-study as well, but it hasn't been funded yet.

BMJ Paediatrics open: Systemic exertion intolerance disease diagnostic criteria applied on an adolescent chronic fatigue syndrome cohort: evaluation of subgroup differences and prognostic utility Objective Existing case definitions for chronic fatigue syndrome (CFS) all have disputed validity...

Dear @Kafka I am so sorry to hear about your daughter. Perhaps Emily Collingridge's book "Severe ME/CFS - a guide to living" might be of interest/use? Some of the info is most for UK patients, but a lot can also be applied to patients in other countries. As far as I know the only place to get...

New Science Wednesday Post from OMF. Do infections lead to lasting changes in immune or metabolic function that lead to symptoms, or is the pathogen still present? This #OMFScienceWednesday, OMF discusses recently funded research into addressing this central question in ME/CFS. Post on OMF's...

Added to the list. #RealScience4pwME #ExploreMEScience #RealSCIENCEforME #donate4MEScience #biosci4ME #ActualScience #MEScience #4MEScience #GoFundMEScience #MEScienceWorks #MyalgicEncephaloAccuracy #IDonatedToMEScience #Justice4ME #JusticeForME #JustScience #JustScience4ME

#JusticeforME is a great slogan, I agree. But does donation to research and the pro science bit come across?

I hear you and have added it to the list :) #RealScience4pwME #ExploreMEScience #RealSCIENCEforME #donate4MEScience #biosci4ME #ActualScience #MEScience #4MEScience #GoFundMEScience #MEScienceWorks #MyalgicEncephaloAccuracy #IDonatedToMEScience #Justice4ME #JustScience #JustScience4ME

I was trying to narrow down the suggestions. It was pointed out that "PWME" in a hashtag would be a second thing for people to "get". But if you want, we can bring back the suggestions with PWME. I hope within a few days we can narrow the suggestions down to around five and then vote.

Wow. Thank you again for all suggestions. It is so great to have someone to throw around ideas with! I've narrowed it down and removed the suggestions with Tuller's name and those including PWME. We are then left with these suggestions. (that doesn't mean you can't come up with new suggestions...

Swedish doctor Per Julin from the ME-ward at Stora Sköndal interviewed by Vetenskapsradion (The Science Radio) about the re-analysis of the PACE-trial. Says that it shows CBT and GET are not good treatments for ME, and that ME-patients rather need to pace themselves. Language: Swedish Duration...

Thank you everyone for your inputs and ideas! Ideally one short hashtag should sum up a donation to science as response to rubbish, that ME-patients are the ones who are pro science and those most supportive of research into ME, and something outsiders can understand and hopefully support...

Yes, I'll try to remember that. Usually I think it is posted first on Facebook, and after a while on their website. But I agree both links should be added :-)

She also initiated a Facebookgroup for ME-patients and alternative therapies. This while she was still an employee at the ME/CFS-centre in Oslo. She does not work there anymore. She seems very angry with the patient organisation and patients that are sceptical of undocumented treatments and...

This is written by a psychologist called Nina Andresen. She had ME herself and has now recovered (I think with diets and alternative remedies). Once in a while she writes articles claiming that the ME Association and ME-patients aren't willing to be open enough for undocumented treatments thus...

I see your point. Regarding Troll.. I don't know how constructive it is to characterise people/meanings with that label in the ME-debate. I'd like the message to be pro science for ME and a way to calm waters rather than heating things further.

True - we can use whatever words we want and make is super simple. The Refugee Council needed a campaign (and to spend a lot of money) to get across what #Trollmelding indicates. We don't have such resources, so a hashtag which is easy to understand, like and support is important. There are so...

Yes. I see your point. Using PWME will result in two things to get across instead of one. #Donating2ME ...perhaps..

Yes, I agree that right now the focus is on Tuller's fundraising. But I am thinking that a more general hashtag might be better instead of creating a new one when Tuller's campaign is over. The campaign is donating to research (and Tuller) as a response to tweets/articles etc from the...

Exchange between Julie Rehmeyer and Michael Sharpe concerning Tuller's crowdfunding

I like it as well. I hope more suggestions will come though. Perhaps we can give this a couple of days and see how the thread and suggestions develop, have a poll among our favourite hashtags and then launch?