UK research funding - UK's second largest public funding body (NIHR) is consulting the public

[Bob]

What I meant by that was: as an example; if I suggested microbiome research would be useful to ME are there are researchers in the UK who would be willing to make submissions? Or is this level of suggestion still too specific?

Ah, OK, I see what you mean. It's a good question, and I don't know if it's too specific because I haven't read their blurb in detail. But even it is too specific it may still get logged as a request for ME research in general.

There are quite a number of UK researchers now - I can't list them all and the type of research they are involved with - there's too much.

Invest in ME are working with the researchers in East Anglia who are researching the gut. Names escape me.

 

[Bob]

So does this mean that anyone can submit?

As far as I know, but I haven't read their blurb in detail.

 

[sarah darwins]

hat I meant by that was: as an example; if I suggested microbiome research would be useful to ME are there are researchers in the UK who would be willing to make submissions?

It seems to be pretty open. The wording of the first question is:

What needs researching (what treatment, test or other intervention)?[my emphasis]

I suggested testing for gut dysbiosis in a large group of long-term ME patients (didn't mention 'cfs' which may get me disqualified!), partly because I think it would be interesting, partly because it can lead to some fairly workable assistive treatments, but mainly because it might be a foot in the door for more biophysical testing/treatment. The thin end of a good wedge.

 

[Keela Too]

Okay this is on my to do list......

 

[Simon]

done:

What needs researching (what treatment, test or other intervention)?

Rituximab (monoclonal antibody targetting B cells) as a treatment for CFS/ME.



What outcome should we measure?

1. Physical activity (using motion sensor) 2. Post-exertional Malaise (core symptom, self-report) 3. Fatigue (self-report) 4. Cognitive functioning (test)



Why would this research be important for the public, patients or the NHS?

There are currently no good treatments available for CFS/ME The current 'best', CBT/GET showed only moderate gains in self-reported function and fatigue vs unblinded group with no placebo, & didn't work for me. Two studies in Norway have shown promising results; a large multicentre trial (N=150) is underway but I gather this won't be enough to convince NICE. I want a large robust UK trial to test this treatment so I won't have to wait forever for an approved treatment. Inital 2011 study http://bit.ly/1EIxsTt Second 2015 study (to help design large trial) http://bit.ly/1JYiKmU About 1/4 of patients showed really dramatic gains - way more than any other published study - and the gains were sustained in the second study, using maintenance doses