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I agree, I think HIV is a good example. They had to deal with a very negative label of their disease. They managed to turn that around and have very good funding now. Maybe this could be used as as a example for us.

Like Miranda a lot less, but LOVE her publicist! Miranda is everywhere in the media. Maybe the charities can spare some of their stash for this publicist to promote the new NICE guidelines.

First priority imho should be lobbying government to; - increase funding - change the perception of ME - properly support patients As patients we all pay taxes, one of the responsibilities of governments is to fund research and provide care for diseases which for ME they have miserably failed...

I wish #thereforme could clone themselves to my country, @Karen Hargrave so impressed with what you are doing!

Cochrane and membership Since 2017 Cochrane is a membership organization. Who can become members? 1 Staff members in certain roles 2 Authors of published contributions 3 Patients/carers/family If we zoom in on groups 2 the authors, the authors become members after these activities...

So if tests did not show a cause for complaints then you have a functional disorder, according to the authors of this study. That does not seem the right way to diagnose a disease. The ethics statement is also worrying. No written informed consent necessary? Why is this waived? Reminds me of...

Maybe just a small change, so you can keep the recognition but explains your aim/standpoint better. For example me/cfs research sceptic or me/cfs bps critic

This is from 2021 about the relationship between NICE and Cochrane https://www.cochrane.org/news/interview-cochrane-and-nice-collaborate-improve-health-guidelines On the NICE website Cochrane is listed under ‘Evidence based resources’...

Andrew Gwynne also speaks of ME or CFS in his tweet. I worry about this. Are they thinking of separating ME from CFS?

‘Recommendations to make assisted dying available are required’ This is outrageous and unethical Edit: added ‘are available’

Apparently mr Riley decided to throw a grenade (figuratively). Could he not just have contacted Peter first? Also that money from ME patients is being used to involve lawyers against an ME patient asking sensible questions, is an interesting choice…

I am wondering if instead of canceling memberships people should do the reverse and apply en masse for membership. Then call a meeting and adopt the rules and regulations and have an election for new trustees and a new president.

If I were a patient organization; - I would be lobbying government for better care and research - I would be setting up a framework for research and fund research - I would be networking with all the ICB boards to work with NICE guidelines asap - I would do mass media campaigns to get the...

I would think the most fair board would consist of a representation of the patient community. So at least a few women and also a few patients/carers.

Thank you @wigglethemouse you describe it so eloquently. If these devices work well, maybe in future it could help orthostatic intolerance. After a lot more research.

Woman develops vertigo due to auto-immune disease. Treatment involves inner ear devices. https://www.nhnieuws.nl/nieuws/342746/laura-uit-haarlem-verloor-plots-haar-gehoor-en-evenwicht-maar-er-gloort-hoop I thought I posted the translated (to english) article but it has reverted to Dutch)

Apologies if this was raised already. I would like to see research into the metabolism. Areas as liver, stomach, gallbladder. Especially since the most severe seem to have a malfunctioning stomach. How is this in the less severe and moderate? Edit; also because a lot of pwme have issues with...

My alcohol intolerance is that I get a hangover effect from just a sip, directly and also a poisoned feeling. (I did not vote because it is immediate, not delayed). I have also developed a lactose and fructose intolerance since I got ill. Could this combo be related? Could this combo mean the...

Any speciality should be deprogrammed from the cult before sending patients there. Options after; immunology, internal medicine, maybe neurology. The speciality most likely to be empathic and listening.

It seems like a conversion therapy. Is that still legal in the UK? oh found this article https://www.bbc.com/news/explainers-56496423 Conversion therapy is going to be banned for gays. Now please ban conversion therapy for ME ptnts who have to pretend to be well.