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I hope I’m not duplicating a thread - I’ve searched but can’t find anything on this subject. “On April 9, 2019, ME advocates Eileen Holderman and Gabby Klein sent an open letter to the Secretary of the U.S. Department of Health and Human Services (HHS), Alex M. Azar II. “The letter urges...

Hmmm... “certain expectations”... “self-appointed representatives”... that doesn’t sound like an interest in understanding the wider concept but more a condemnatory statement. As far as expectations that an organisation with ME in its name should, well, represent PwME - surely that’s a no...

Thanks for your response, Jaime. I didn’t actually ask you/MEActionNet to denounce all other criteria (though it does follow that, if you support CCC/ICC you would prefer/think it’s advantageous to PwME *not* to support other criteria). I asked: “In light of MEAction’s stance on promoting...

Interesting. In reply to my open letter to MEAction and Jen Brea, Adriane Tillman said: “For diagnostic criteria, #MEAction promotes the use of the CCC/ICC diagnostic criteria as you can see by its listing on our patients page, on our researchers and clinicians page, on our Reports & Facts...

But your website says you campaign on the basis of ICC (I’m paraphrasing). So wouldn’t an attempt to legitimise SEID warrant a response?

Eileen Holderman has asked some very pertinent questions of Solve, IACFS/ME and MEAction. It’ll be interesting to see their answers. IF they answer... Also:

Yes, I imagine it’ll take the system a while. Thanks.

When did you get this? I’ve not received one.

I’m really quite astonished that there isn’t more concerned discussion about a high profile (or any) organisation changing a petition after thousands have signed it. If it was on a subject we didn’t agree with, I’m sure we’d all be up in arms. It’s highly unethical to gain thousands of...

Hi Adam - I don’t wish to rehash the arguments about criteria but I do want to pull you up on your inference from my personal comments below the note (blog). I did get too personal, I admit that, mea culpa. However, the comments were made *before* I knew Jen was in hospital (which I only read...

:laugh::rofl::laugh::rofl::laugh::rofl::laugh::rofl: Thank you for the laugh! I hadn’t heard of this and followed your link. Teehee!

I don’t think Eileen Holderman, Gaby Klein or Jeanette Burmeister, all experienced US advocates, would agree with you. Check their tweets. They don’t call it Solve Nothing for no reason.

Indeed they don’t. Many PwME have been banned from their Facebook page. I was blocked on Twitter for one tweet, the content of which I can no longer remember.