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Still just two. Looks like intelligent discussion not wanted. Mine were critical of the awful way the mail ended it by saying patient activists and some Drs believe it's physical etc. Still undermining us. I'm not surprised they didn't print it but can't believe no one else wrote in.

http://www.dailymail.co.uk/news/article-5569091/Woman-dies-aged-21-weighing-just-six-stone-wasting-away-ME.html?login#newcomment They haVent published my two comments and so far just have two which seems unlikely

I don't see why they can't use both. I find that frustrating about meruk because Fukuda with optional PEM is CFS and they're funding quite aloe of that whilst being MERUK. Combo criteria is what the biobank and others have done. If we are talking uk funding weak criteria the Mitochondria...

So $5-6000 in 5 months of $30 000 target. Not great progress if they're still looking to do it. Are there reasons why, I saw in the linked to thread above from Andy, Simon saying about the Japanese study covering some of it anyway. I will watch the rest when brain has recovered, to see what he...

Watched 2/3. Excellent. Is he still crowdfunding for vagus nerve research? Can this forum get behind his effort?

Surely from this, setting up the ME APPG might be viable again , with fresh faces and a real purpose ?

I don't think unrest was supposed to educate so much via science, which is still sketchy and emerging, although she showed the 2 day testing abnormalities and discussed energy production. It was to educate through showing the impact and suffering especially of severe ME usually hidden and not...

It's good to be Using more forthright language given the terrible impact the neglect is having. This forthrightness and powerful advocacy has to extend to where it really punches eg when you have meetings with NICE, MRC , DoH etc. Eg at the CMRC conference, when there was an hour discussing...

I found it more a regurgitation of the paper than a condemnatory personal comment in the way the Jon stones and comments usually are.

Jon stones use of CBT in MS to justify it is silly, they have different response to activity and exertion, the MS society Facebook is full of threads on the benefits of exercise. And often when CBT is used for fatigue in other illness it is unfortunately based on the bps model and being used...

Firstly very well done to the authors for the paper and for getting media attention. The articles might help to soften the strong hold of the idea of behavioural intervention and rehabilitation as remedy for CFS However if the news went to the smc who've already released a fixed contrary...

They're doing pretty well because they control/influence all the media in a way we can only usually play catch up to. When you have a narrative of unruly patients causing trouble vs the respected medical establishment then any counter argument is dismissed as here we go, see as we said they're...

http://forums.phoenixrising.me/index.php?threads/horrifying-article-in-sunday-times.23050/ There's a quote in this newspaper article copied in full , near the bottom. I can't copy it but he says he made recommendations to the MRC on CFS funding that it was best for the bulk of the money to be...

This is the MRC page where they highlight that understanding mechanisms not essential or high priority https://www.mrc.ac.uk/funding/science-areas/population-systems- medicine/cfsme/ 2003 research strategy In 2003 we set up an advisory group, made up of independent scientists and patient...

The MRC around 2004 had a meeting where they decided we didn't need to understand CFSME to be able to treat it, AFAICs there was utter faith in the behavioural model. There's minutes of those meetings I think. That explains why so much money was thrown at pace & FINE, to prove finally what they...

Thank you. I thought it looked wrong!

https://www.bbc.co.uk/programmes/p05y3tpw 2:11 in. Very good interview from knowledgeable, sympathetic interviewer and great interview by SC who I usually think is weak, not today. Covers numbers, why not better recognised /funded and cared for, how Sonya became AFME CEO and her son getting...

We all have the goal of getting much more high quality bio research. It just hasn't happened. Obviously in uk there's many obstacles which imo is why funders should have put in some continuous funding , I'm sure Newton, Bansal, even the biobank resesrchers could have done some good with it and...

However whilst old age is associated with a big slowing Down , becoming weak, frail, aches painy, it's still not really ME-like is it? My Nan hobbled around but could tolerate stimulation and mental activity for hours. ME it often all goes. And muscular wise, a bit of over activity wouldn't...

Its astonishing as unrest airs around the world that the highly controversial, incarcerator of Karina was chosen to speak. One can only assume that none of the bacme folks had watched unrest in an attempt to see what's really going down with patients. It's also bizarre that patient groups have...