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Thanks for posting, @MeSci. Glad to see transcripts!

I've been thinking about this a lot lately. I think that one of the problems is that none of the charities have a track record of large projects. IiMER managed to raise a lot of money (albeit slowly, in comparison to other disease fields) for a rituximab trial but the trial (rightly) isn't going...

Isn't it the scientific information that the potential new scientists get that recruits them, though, regardless of whether it comes from scientists or patients? I'm not familiar with the work of Anne Örtegren, but it sounds as though she managed to recruit scientists despite being a patient...

Not sure if this is within the remit, but isn't there now good evidence that many PWME also have OI? Should NICE therefore be recommending that all patients who get diagnosed with ME get tested for OI (since it is somewhat treatable and a very disabling symptom in its own right)? Should this be...

Keith Laws also co-authored (with James Coyne) a letter entitled 'Results of the PACE follow-up study are uninterpretable' that appeared in Lancet Psychiatry, about the PACE long-term follow-up paper: https://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00551-9/abstract

Thanks, Peter, and welcome to the forum. :) I wasn't familiar with VIRAS, but it's 'Vector-borne Infection - Research, Analysis, Strategy' and on its home page it says: VIRAS is a non-profit group comprised of patients and professionals with knowledge and experience in Lyme borreliosis and...

Do you think he should make his question a bit more specific so as not to be fobbed off by being told what you've just learned? That is, he could be told that patients should report it to the NHS trust in question - job done? Maybe something like: "How exactly should harms from the therapies...

Interesting that they recommend complaining to the NHS trust where the therapist is based - and that there would, as you say, be no national collation of results. It would just look as though the individual therapist was at fault, rather than anything inherently wrong with the therapy. I wonder...

And my irony-meter explodes again...

https://twitter.com/jenbrea/status/1020024278270406656

Seriously, I think it's worth writing into the journal to say that.

What do you think, @Jonathan Edwards? Should S4ME or #MEAction UK (once it's up and running) or a group of our charities be doing this?

Just about to start.

Bump! This is on today.

I've been meaning to bump this all day - it's on in less than an hour (6pm, UK time).

Interesting: The big news in POTS has been the discovery of autoantibodies that are whacking a receptor (adrenergic-1 receptor) in the legs that causes the veins in our legs to narrow or vasconstrict as we stand. The knock on the past autoantibody POTS studies has been their size, but Grubb...

Haven't read it yet but here's Cort's report on Health Rising (he attended it and was tweeting from it, IIRC): https://www.healthrising.org/blog/2018/07/18/2018-dysautonomia-international-pots-sfn-mcas-vagus-nerve/

Reading the rest, just too angry with the non-responses to continue to comment.

Point #2 - another non-response, and this time a weird one. #MEA are asking for development of a consensus case-definition; the NIH reply by saying they've developed common data elements (something else entirely) through a consensus process. What? :banghead:

Just reading the first response to the request for RFAs for various things and it's "We've already funded X, Y, Z." This is the same kind of non-response that I get if I send a request for change to my MP here in the UK and they forward it to a minister. They provide a list of what they're...