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Now, I am wondering if this was part of a 'Camilla' style PR thing, to make AfME more 'acceptable to the masses'(?) eta: see this thread https://www.s4me.info/threads/iame-international-alliance-for-me-anyone-know-about-them.4108/

Found a statement from WAMES: International Alliance for ME writes letter to the WHO WAMES has co-signed a letter from the International Alliance for ME to the Director General of the World Health Organisation, Dr Tedros Adhanom Ghebreyesus The aim is to persuade the WHO and its Member...

good name for #MillionsMissing:D

well that's a new name! Liverpool Echo article "A young hairdresser who “loved life” said he lost everything after ME robbed him of his ability to do his job and left him housebound. Brendan Boyd developed the condition, characterised by relentless exhaustion, in 2011 after he caught a virus...

May 13 2018 "Christchurch resident Melissa Bailey shares how she copes with the debilitating disease M.E." "I've learned a lot about the human heart and how terribly judgmental people are. Many years ago I was one of those judgmental people who on a school camp, came across a parent lying on...

Star and Crescent, Portsmouth: "Star and Crescent are proud to be working with Portsmouth fundraising campaign M.E. Foggy Dog and its founder Sally Callow on a week of articles devoted to raising awareness of Myalgic Encephalomyelitis (M.E.). In the final part of this week’s 6-part series on...

another ITV report from Manchester: "Hundreds of empty shoes laid out in Manchester to remember sufferers of ME Hundreds of 'empty shoes' have been laid out in Manchester to remember people who suffer from ME. The shoes symbolise the footwear of people diagnosed with the condition who are so...

ITV report (about #MM in Wales): "Campaigners call for more treatment for those living with ME Campaigners are calling for more treatment and research for those living with ME. Many sufferers are under the age of 40, bed bound, weak, suffer with extreme tiredness, constant pain and are over...

Bustle: "You may have noticed the hashtag #MillionsMissing trending on social media, or may have seen some landmarks lighting up blue over the past few days. That's because May 12 is International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Awareness Day, and the folks posting in...

In light of recent revelations about the new alliance being formed, I was just thinking where would we be if everyone had just gone along with what we were being told (or not told). There would have been no questioning about the PACE trial, Esther Crawley would be heading up the MEGA project...

not sure if this has been posted; this outlines the IAME project (May 2018) https://www.actionforme.org.uk/uploads/images/2018/05/detailed-briefing-international-advocacy-040518.pdf eta: would have been nice to get this info beforehand. eta2: one of the goals: "Put in place transparency and a...

yes they have the same statement as AfME on their website: http://www.meresearch.org.uk/news/international-me-awareness-day-2018-who/

Just heard back from ME CFS Foundation South Africa they also confirm they are a member of the IAME.

I also see ACAF is top of the list; their website http://www.fibromialgia.cat/eng/frames.htm "You are visiting the ACAF - Association of People Affected by Fibromyalgia and other Central Sensitization Syndromes of Catalonia website." @Aroa what can you tell us about this association? eta: and...

I see that Forward ME, United Kingdom is on the list. Are all the participants (don't know if you can call them members) aware of membership of this new alliance? @Russell Fleming

did anyone spot a blond haired lady stuffing Fitnet leaflets into the shoes?

#MillionsMissing Trending On Twitter - The Most Popular Tweets https://www.tweet247.net/united%20kingdom/millionsmissing (note not just UK featured)

I would add another to that..........I also trusted that the ME charity that I joined when I was diagnosed in 2001 would be giving me the best advice and was acting in my and other pwME s best interest........ It took me nearly 15 years before I found out that this was not the case.