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Bedside light tool could detect baby brain injury earlier http://www.bbc.co.uk/news/health-45522794

It’s astonishing this out of date propaganda has been allowed. It looks like Sharpe trying to maintain face with his Oxford peers to me. Reinforces my belief that PACE couldn’t be allowed to fail because of the egos and size of the investment. It is sad that hes influencing how fatigue in...

I’ve never been especially thrilled with how arthritis uk views fibromyalgia. I went onto their website and have copied the bits I found questionable rather than the whole sections so this isn’t the complete picture. Whilst they do recognize it I see their recognition and approach as quite BPS...

I don’t see anything wrong with involving celebs. Celebs aRe just people that lots of people know and are more likely to listen to who also have contacts, they’re “influencers” in the way we can’t be alone. A celeb with a brain, good oratory, understanding and genuine care could really help and...

“This weekend the Women’s Equality Party launched its health policy for women.... Among the raft of brilliant policies that were voted through by members were quotas for research commissioners, a health institute for women and a requirement that prescription drugs are clearly labelled “not...

It was more rhetorical ie we need #MEAction in the uk or there is no action IMO, which I find very frustrating

Good because nothing else is happening is it?

Interesting. Sandi would be a great ally, clever funny, with a social conscience. In the uk she was a joint founder of the women’s equality party. I dont know much about them but I know jen in the USA was trying to get the women’s movement to take an interest. Obviously the illness affects men...

Until it’s recognised that contrary to the bps narrative CFS is often not “reversible through our own efforts”, then QAL studies can’t make the impact. Pointing out many function lower than MS or heart disease is ineffective if the general belief is , so what you get better, they don’t. Ofcourse...

To be fair I will put the Facebook responses, nothing untoward going on it seems, both charities did the same thing in response to action of a Lib Dem member by the looks but the first was sought for advice: #MEAction Scotland Emma Walker who is a member of the Lib Dem’s was the driving force...

#MEAction say they advised on the motion. AFME attended with a stall

Well I think it was #MEaction Scotland who more were the drivers and the other charity the tag along unless they were both invited. Odd because they’re writing separately yet must have been aware of each other etc and with their seeming (unfortunate) connection via FME they didn’t talk previous...

A problem is the BPS lot have made CBT GET superficially seem the only evidence based medicine for CFS

Do you noticeably recover from exertion over night or do you have sleep that feels deep, awaking feeling nice but still haven’t recovered from the day if you’d exerted? My body literally stops on sleep and restarts where it left on on waking, often a bit worse as Peter said. During the day with...

Is it possible that the unrestorative sleep is part responsible for the inability to recover from exertion in a short time frame of 24 hours which causes reduction in function day 2 plus exacerbation of symptoms as the body is then pushed over its limits. Obviously people who manage to work are...

Merged thread For a bit of Friday positivity. The numbers for this fundraiser are rising, nearing £20,000 now. https://www.meaction.net/grow-our-uk-team/ I think it was said they’d start looking into hiring at the halfway mark?

It’s just a five person pilot study. I can’t get excited. The effort in the uk needs to be ramped up substantially to the levels of Norway and about £1m a year at least invested which could happen if the MRC put up ring fenced funds I hope after this months CMRC conference, if we are let down...

On the evidence quote, I assume he’s saying that they produced good, rock solid results but the community were resistant/fears not won over rather than his evidence ended up being weak Even subtle things like that are clever in the medical world where evidence based medicine is the mantra, and...

Excellent, I too hope Jen or whoever goes can cut through the inevitable self justifying film flam that will be expressed. I begin emails listing what is being done and showing how it isn’t enough, unfortunately in email situation its still the case they just reply with what they’re doing which...

That’s a third of ambulant patients who’d consent to a Kings referreal? I assume he never ventured out if the clinic. And the rest is explained by Oxford criteria I guess. He simply doesn’t seem to care about the rest, including the third they can’t do much for.