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I agree with sunshind3. The parameters of the ME spectrum are the minority who almost recover to the extent they can live symptom free to the minority who live terrible lives at the very severe end, with death even being possible and the whole range in between. The deaths aren't out of context ...

The ME association had a page for people who wanted to do unrest screenings with tips and advice etc. One part was suggesting people contact the MEA fundraising officer for MEA fundraising material so they were profiting from the showings...

The problem with this for patients is that to us this isn't a matter to be debated, researched and only then proven, once the evidence supports it. That's been part of the issue with this the total discounting of the patient experience until the tests show something. To us, just as if you were...

I'm unsure about that statement, people like Nigel Speight have used that terminology primarily biological or physical , probably in context of refuting the psychological assertions and allowing for recognition that ME can be impacted aggrevated by stress or so on. Equally it is true that...

I think AFME were just given the peter white pain study, if that's what is being referred to, to continue once the group "CFS something or other" folded when their CEO " Anne someone" died a few years ago. They had been funding it and as a group who favoured the CFS name I'm sure AFME were...

I think iimes tone is sometimes unhelpful and they have chosen often (many would say rightly) to stand aside so therefore expecting inclusion is perhaps unmerited. I think they feel pushed out of forward ME in the past or was it the appg. There was very strong fighting over rituximab with MEa &...

Lots to look good about the 2 PhD projects AFME are part funding. Regarding FND my concern is regarding the mark Edwards research ad the idea is for testing before and after treatment, for FND the treatment is essentially behavioural and would involve I assume CBT, rehabilitation, physio get...

IBS fatigue vs ME , not comparable in my view. Trivialises to say we share some of theirs, they some of ours

If the feature is already recognised in cancer and MS has it lead to any treatments especially in MS?

Dr Nina muirhead can be seen on a video on AFMEs page where she attended their Geneva thing and gave a talk. I'm all for medics getting on board as long as they're aware of the history /politics of the illness, The fact many have poorer treatment and outcomes than their own etc. This lady does...

The colloquium looks really good. And a strong mix of both uk and international, mainly USA & Norway, researchers.

I think it's because there is actually quite a close relationship with the CMRC and the MRC NIHR, their representatives attend at least some meetings and the conference eg here http://www.meassociation.org.uk/wp-content/uploads/CMRC-Draft-Minutes-06.06.17.pdf So they're all sitting on numerous...

Research funding is my biggest bug bear. I'm glad it's got some attention I'm going to comment separately on figures but just have something to say regarding charities which from this you'd think have been lobbying relentlessly for funds, they haven't. The worldwide funding comparison printed...

It is a good article. I'm not sure about GET CBT being regarded as psychological therapy rather than rehabilitative therapy. The clever quote regarding drowning actually came from someone on MEA Facebook in response to a call to how would we distinguish ME from TATT. It's good to see sensitive...

I hope VanElzakker is involved I think it suggests OMF really want to get things moving, I'd wondered if theyd eek out the pineapple funds over five years but I think they're hoping the community can still keep putting in significant money too, to get the momentum going, or nih will start...

Great, i don't know if this is funding a centre that didn't get nih funds or something new but it's great that Harvard as a prestigious centre is getting this fund. Obviously it shows how transformational funding can be, if people actually want to see lots of good science breakIng this cursed...

It's funny I never think of a cure, I'd be insanely grateful for just 10% lessening of severity

I don't give a flying fig what usual practice is. I've come to see that even that language is slippery because they do ofcourse ring fence , or put money up along with calls for applications, for some things - I posted here a few weeks back on £5m up for MH treatments I think, they did for hiv...

To be honest, as a bitter old cynic I'd rather uk me action worked more independently as the other charities imo can have a dampening effect and simply aren't as outspoken, radical in vision, on some issues, as many of us want. Example last year when AFME attended the MM event and told the press...

They can stick ideas of wait and see Thanks to these advocates, we simply can't accept this. This is not the way to make up for decades of neglect, you don't turn up to a starving town and offer the occupants seed, Walter asks us to stay the course - does he have any grasp of what surviving...