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Hi @Action for ME Can I ask you, how many Charity members do you currently have (2018). And how many of your current members moved across from AYME, when Ayme joined with AFME ? Thank you, Nancy

Hi @Action for ME ..... Thank you for responding on this thread. It was me who PMed you to draw your attention to the existence of this thread. I do wonder if you could respond to my original request, PM to you , that you respond to the specific points made in my post 140 (quoted...

Can A4ME member @Action for ME please respond to my Post xx

Holgate has wasted 10 years of our time. 10 years of our lives. We Are So Much Older Now. And many of us no longer expect to be still alive to see any 'fruits' of the CMRC research. I heard Holgate speak at the RSM conference in 2008. A whole decade ago. Astute ME analysts, including...

The severely/very severely sick ME Sufferers who were abandoned by AFME, and were fortunate to survive, if they actually survived, are the people who have the right to criticise AFME. I am one of them. I do not wish to discuss the events of the first 5 years of Severe/Very severe ME...

Well said Alvin! Very well written. And so very astute !!!! We, ME Sufferers, are actually persecuted citizens! But we mostly dont choose to identify as victims (although we are). We seek to educate, and advocate. Unless we are so damn sick all we can say is "Help". The fact is...

From experience as a former AFME charity member, and former facebook member, long banned, I got the strong impression that afme operate a kind of 'Tyranny of Niceness'. It was intensly frustrating, and isolating to be infantilised and patronised with nicey sympathy as a severely sick member...

Also, pacing isnt treatment. It doesnt help anyone recover, pacing can help prevent us getting worse. Other factors are involved in deterioration too, so pacing isnt a guarantee to avoid deterioration. The Pace trial was cynically named 'PACE' to fool people, especially patients, that...

AFME have had decades to catch up, understand and change/improve so they no longer support and collude with the damaging BPS policies and practices that have and continue to damage sick patients, Decades. I dont comprehend the mindset here of "We could educate AFME". I do think that...

The content of this thread, O'Dowd and Crawley study, and AFME sponsored Webinars by Hazel O'Dowd for GPs. Maybe AFME could engage with the concerns about those. Whether on this present thread or the original one, linked here, I dont know...

AFME have not participated on this forum, or responded to alerts. So there is no discussion with AFME going on.

The UK Biobank did not collude with PACE, facilitate funding Esther Crawley and Peter White's research, support the damaging NICE Guidelines etc etc.

Well reasoned and reasonable attempts to reason with, and educate afme, carried out by countless well informed patients/advocates, over decades, have made no impact on afme attitudes, policies and practice. Only resulted in more sophisticated rhetoric from afme to circumvent all the concerns...

From the FiND ME Twitter page, January 2017, it says the site owners are Andy Bristow and Lewis Henshall. They say they will launch a campaign on FND. That was January 2017. There is a FB Page too. The site name FiND ME sounds like its about finding ME, but stands for FND/ME.

This person, a patient, was apparently diagnosed with FND and ME, and now calls it FND/ME. Worrying. He has a site https://fndme.org.uk/info/history

I have been doing politically astute, really well reasoned stated, advocacy for over a decade. I have advocated to MPs, to Members of the House of Lords, My advocacy has been quoted to Members of the House of Lord My Critique of Lighting Process was the first to warn ME suffers in 2005...

I was incommunicado for the first 10 years of ME, Very severely ill, but when I could be online, I made sure I was damn well informed before presuming to go public...... I did huge amounts of research to inform others (which is still being quoted today)...... I did NOT presume to write...

I am sorry.... There is no 'Black and white'.... It is actually Life and Death. There are too many ME deaths to continue to be 'nicey nicey'...... to continue to try to collaborate with the charities who themselves collaborate with the PACE trial resesrchers..... who collaborate with DR...

Sorry, but I so nearly died from ME and medical neglect, and social care neglect, so many times in the early years, to be 'nice' to well meaning peeps, who do NOT RECOGNISE the Political force behind the persecution of physically sickally disabled disabled peeps with MYALGIC ENCEPHYOMYELITIS...

Hi Gary..... I am glad that you tried to get publicity for us. That radio broadcast was so good. Well done. I do advise that you take advice from the long term sick pwme, the long term uk ME advocates before doing a podcast. So many of us do NOT have the time for 'Baby steps'. We have...