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It's one of those things that seems plausible but I'm not sure to what extent it's proven and it could be as unhelpful as the deconditioning/fear avoidance model in that it looseLy gives an explanation and then the idea would be desensitisation is an option or treatment, rather similar to...

Wow, that's interesting. I guess from a selfish POV it might be that we benefit from knock ons in hiv research. Are they reporting any CFS like symptoms as a consequence?

The Japanese are doing PET scan research. Health rising blogged on it, its to replicate theirs 2014 small study.120 people https://upload.umin.ac.jp/cgi-open-bin/ctr_e/ctr_view.cgi?recptno=R000033257 Alluded to here...

I personally would like to see the uk charities have respresentatives at the uk big city demos & show a united front as happened in the US, and get across that it's not just a handful of the more extreme activist types (as some will think) making a bit of noise. I would like the support...

https://www.actionforme.org.uk/news/millions-missing-protest-coming-to-geneva/ Millions Missing Protest coming to Geneva April 10, 2018 Action for M.E. is supporting the Millions Missing campaign with our Millions Missing event in Geneva on Saturday 12 May – and you can get involved at home...

Yes I've felt that on this science for ME forum it's been conspicuous that there's been very little of actual science papers to discuss. On the positive there seems less BPS stuff too. I think in the past we may have spent so much time trying to counter the bad stuff it masked how little good...

Are Esther's fitnet and magenta using objective measures?

She seems less positive than her articles soon after it was done. I read it as It doesn't seem that transformative for her although perhaps it's stopping her worsening with further attacks than actually about reversing the level of illness there. I was surprised at quite a lot of symptoms over...

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...