Monday, 18 March 2019

My response to the "ME Trolls" Headlines

Hello my lovely loves,

This month I've delved back into the slightly intimidating world of YouTube and created a video as a response to the many articles (and, latterly, radio segments) accusing ME patients of forcing researchers out of the field by being in some way dangerous, or unintelligent, or anti-science. 

We all know, of course, that this is complete bollocks, and the only science we dislike is poorly done, unethical science. That does no one any good.

I wanted to create something as a direct counter to these pernicious articles, so people who have only heard about ME and the PACE trial from it's authors and supporters might gain a little more understanding as to why we're so against it. And show myself as a normal ol' sickie, not a "militant activist".

So for your delight and delectation, here is 15 minutes of my face at a truly atrocious angle trying to explain to people why we're not dangerous, or stupid, or anti-science.

Please excuse the choppiness of the edit, but I spaced out too often or repeated myself (yay brain fog!) that I would've gone far beyond the 15 minute content limit for unverified youtube accounts. I may create an outtakes video of me getting confused - I think that could be quite funny.



Links listed in the video description are as follows.

The Parliamentary Debate on ME/CFS 

(You can also watch and download from the ME Association's website

Dr Tuller's many blogs on the PACE trial

My blog on the PACE trial

Research links (via ME Association, but with links to the original published work in the articles)

Dr Cara Thomas - Energy production and mitochondria in ME patients

Dr Jarred Younger - Suggested brain inflammation in ME patients

Kings College - Overactive immune response in ME patients

Open Medicine Foundation - Red blood cell abnormalities in ME patients

Linda van Campen and Frans Visser - Cardiac anomalies in ME patients

Prof Ian Lipkin on why ME is not psychosomatic and info on his research