Search results

Interesting: The Chairman announced she had attended a meeting the previous week [of the CMRC] and had found it very interesting. Dr Charles Shepherd said that the current focus was on encouraging some body to produce something along the lines of the IOM report. Prof Stephen Holgate had been...

I see Dr Muirhead was at the last Forward ME meeting: http://www.meresearch.org.uk/news/forward-me-group-minutes-17th-july-2018/ From the minutes: Nina went on to explain that she is a NICE stakeholder. She was thinking of suggesting that NICE include an “education” member on the committee...

I wonder if there's any help we can offer her?

OK, so Jarred Younger's talk on the video is at 5:27:45: Wondering what your thoughts are, if you've had a chance to watch this, @Jonathan Edwards? I thought this was very exciting but as a non-biologist, I know nothing...

BTW, the study that she mentioned as indicating a need to get better life-expectancy figures for ME/CFS because it indicates that we die, on average, 17.5 years earlier, is not a very good study (I feel calmer now!): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5218818/ Respondents (friends...

Wow, what an asset! Worth inviting her to the forum, @Trish? (Not sure who to tag!) :)

This was really cheering, and to me, a strong indication of how deep the change has gone at the CMRC.

Thanks for posting, @Sly Saint. I realise you've posted this in the Recruitment subforum, but I wonder if it would be good to edit the title to something like 'Stanford neuroinflammation study recruiting patients' so that those of us who navigate via the 'New posts' button realise what it's...

In an ideal world, a competent health economist would be found to undertake a review who is familiar with (or can be made familiar with) the issues. Doing a review properly means chucking out bad studies. If there are no good studies, all that may be possible might be to offer an arm-waving...

IIRC, OMF had the facility for people to submit questions online during the livestream, which was a great idea (although it stuffed up a bit on the day, I think). They did indeed set a great example for patient engagement. The CMRC should be aware that many of us who would like to attend the...

Same here. If these people don't act in the best interests of patients, there's less than no point in them.

Thank you, @dave30th.

I agree - as many of us should be giving who can, IMO. Sorry you had aggro over this. I still do wonder why the very rich don't spend more on this, though, in any disease.

I thought that RA tended to hit people later than ME/CFS, and that more PWRA would have had a chance to earn/inherit their billions by then. And RA must surely be like ME/CFS in that once you've had a few years of trying useless treatments, you'd want to put all your resources into research...

But now I feel so bad for the PWRA... Surely there must be a billionaire PWRA who'd want to get this done...

:arghh:

This is both fascinating and horrific. Aren't there RA charities who should be clamouring for this work? And raising funds to pay for it? Do you have a sense of why they don't take action?

Very interesting concept in the Mark Jones thing in looking at the genes of not only an individual with a particular disease but also their parents (who don't have the disease, presumably) and seeing what new mutation the individual has (i.e. which bit of their genome didn't come from either...

This thread has been split from the conference thread here Prof Alain Moreau presented on the 'Identification of post-exertional dysregulated circulating microRNAs in ME/CFS pathogenesis' See also the MEA Summary page 6. Somewhere around the 25 minute mark, Moreau starts talking about a...

Three other videos up now: