67. ME and my life: past, present and future - Frank Twisk

In this webninar Frank Twisk, Dutch ME-patient and activist and publicist of many articles on ME, introduces himself, talks about ME and the rest of the world, about the battle for ME, the future of ME and the possible role of the patients and patients' organizations.

[@tamaraparsons5047]

This is the best I've seen; so many truths in a short talk
C.F.S. must stop being equated with M.E.
"M.E.? Oh, just another name for C.F.S." That's what I've heard from every doctor I've seen here in the U.S. I've stopped mentioning it due to their ignorance. I used to take solid research for them to save them time. I don't do that anymore. Doctors are not going to help me.
Thank you, for expending your energy and for this good work you're doing.

[@medfreerecovery3022]

Thanks Frank, for sharing this.
Though you have lost so much, I see a great mind at work here, and a spirit still going strong. You are very inspiring and a great example to me, people like you keep me going, the best medicine there is! Thanks again!

[@scottsimpson862]

Thank you Frank.
Shame is a powerful change agent. Framing our experiences as also being harmed by some/too many medical 'professionals' may shame them into validating our physical symptoms.

[@SharonMurgatroyd-Gail]

Thank you,Frank. A very informative video; yes the distinction between ME and CFS needs to be clearer..they are not the same. Hopefully, the future of ME [for treatment] is near. One can only hope.

[@tapanuiflu1983]

I've been following all of Frank's papers with keen interest, and I totally agree that we need to stop confusing ME and CFS. Inspiring stuff - thankyou Frank for all you do - I think you are amazing!

[@ryanneilcarr]

Hes one of the heros

[@H4NDCRAFTED]

Couldn't agree more.

[@MEadvocacyorg]

We also agree on the need to separate ME from CFS (and SEID). Please visit www.meadvocacy.org/ for more information. Also why is this video unlisted? It should be public so it can be shared widely.