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Hi all I've always struggled relating our fatigue and slowness or inability to recover to healthy people because our issues isn't their tiredness nor do we recover as they do with rest. However watching (as us bedridden people do in boredom with mush brains) those "stranded on island survival"...

Action for ME are also doing this ME awareness week https://www.actionforme.org.uk/news/invite-your-msp-to-scottish-parliament-event/ "Gail Ross MSP is hosting an event in the Scottish Parliament during M.E. Awareness Week, celebrating the patients and professionals working to improve the...

Sure, I'd forgotten those two ongoing studies too. I just meant the issue is as much what isn't being done as what is.

I suspect the Bristol shopping study is low cost and funded by the uni psychological department along with many other useless studies across different things, something their academics do in their research capacity. That to me isn't our problem in the way MRC NIHR pumping huge funds into...

The radio interview was Good but I personally don't see the point of awareness raising (again ) if the people who make a difference in our lives, the NHS, the royal college and medical schools and the funding bodies are unaffected and not put upon to change. John actually said at the end it's...

Where is that funding figure from. ? What is the #MM campaign Bristol, or anywhere in uk asking for this year? In America there were clear demands everyone was making across the board. In uk it seems to have been more awareness raising but I don't think it's actually achieved anything to day...

It is just bullshit. The model is wrong, it's dangerous to assume anything, how does it haveany place in the science world why is this not seem as the baloney it is. I hadn't read this paper but have read many others on illness CBT claims to treat where medicine can't, ugh. At least they...

I personally can't understand why anyone would think that CBT should help with fatigue caused by cancer or aggressive treatment. Is this The assumption the fatigue can be behavioured away or is caused by psychological factors? If it is I think it's wrong. It seems a rotten platform for...

So true. Thanks for the "scientific" CSS stuff. Here's the peter white etc article where they talk about retraining the brain to accept activity, I think css is part of the idea https://www.theguardian.com/society/2016/feb/15/it-was-like-being-buried-alive-victim-of-chronic-fatigue-syndrome...

Yes I think Dr Chaudhuri gave a talk saying that Also the dorsal root ganglionitis found- outside the SC - could be causing an amplification of sensation and signals causing the brain to respond with feeling of fatigue. That all sounds plausible but we have not had enough research. The CSS...

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