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Has it really gone quiet or has it merely gone less public/more underground which has always been the case anyway. SW has had a travelling show for decades now where he carries a suitcase of patient smearing cuttings, screen shots, alleged death threats & presents them in closed meetings to...

If you know that the forum has such a low opinion of Afme then what’s the point of them being members here? As you say they were silent on PR so what makes you think they’re going to suddenly become usefu/pro active here? For me it’s the principle rhar matters. When a patient organisation has...

I’m afraid you’re being very naive. Any advantage gained would be on their side. It’s their MO to ‘mingle’ within patient groups in case they can use it to gain more patient support/members/legitimacy. Or it might be one of their insider patients who is a S4ME member who’s given them the heads...

Thank you, yes I agree on your analogy re CBTese and French as second language. Really sorry to hear that your teenage daughter has ME. Sending you my best wishes and a virtual hug to your daughter too xx

You can’t educate someone who has no intention of being educated. Any attempts made by patients to ask them pertinent questions is met by one response only: censureship, they block you on their social media. My guess is that they will never comment or read any of those threads anyway. Unless it...

Just wanted to pass on my own experience with Afme. They blocked me from commenting on their FB Page as soon as I joined FB in 2010 even before I had made any comments on any of their posts!!! When I rang them in 2016 (for the first time in my life) to discuss MEGA and PAG formation, I had a...

Both Mark Vink and myself (Simin Ghatineh) are severe ME sufferers and part of the group of scientists trying to debunk CBT/GET, PACE, FITNET, SMILE, and all their offshoots. Mark is too ill to join this forum atm and i’ve only just joined this week Hi everyone