ME Association announces three new research grants, Oct 2019

Ok but the Australian sum is larger, if you Allow for their smaller population, Norway same. They are showing that RFF at this time possible and successful. We could have asked for ongoing RFF, as our charity heads of mea & AFME actually insisted we needed in 2013, it’s not just me saying this, but MRC refused saying what they’d given would be enough to get the field going, it wasn’t. The difference is I think that we Should have then lobbied.
Mrc only stoped it’s HIV RFF once field was established when there was stigma and they needed to get it off the ground, that’s how they operate. There was another area , not single illness , they were trying to stimulate recently. They did five years I think and then decided that the area was now solid enough for it to flourish alone. That could not be said of us after just one round RFF

 

Posted tonight on the ME Association Facebook page:

 

It's the figure introduced by @Cinders66

 

I agree with most comments that this is good news.

(Edited to add: ) Thank you everyone involved.

My only criticism goes to the Birmingham Mail's picture editors:

https://www.birminghammail.co.uk/news/health/cause-worlds-cruelest-illness-could-17130013




I think that MEA include a range of their press photos when they send out press releases. Perhaps they also could add links to their photos to the press releases placed on the website? https://www.meassociation.org.uk/20...ion-real-m-e-photo-campaign-05-february-2018/

(I realize that most picture editors are more trained about what catches the eye best than what might illustrate the content in the best way. So this is a general problem that doesn't apply solely to ME coverage.)

 

My OH develops a lot of materials for charities and I would say the press release is perfectly normal practice. Use of terms like ‘groundbreaking’ and ‘cruel illness’ are designed to catch the eye of editors who receive hundreds of these from all over the place.

‘Modest funding provided that, statistically, probably won’t find a cure’ ain’t going to do the job.

 

I'm really excited that Dr Karl Morten has been awarded 69K to build up a collaborative team at Oxford and specifically look at Mitochondria. I'm doing a happy dance in my head.

One more comparison on the funding amount. Dr Paul Fisher is funded by the Mason foundation to investigate Mitochondria in people with ME and his first results using a variety of different techniques were eye opening. He is currently being funded by the Mason foundation at AUS $120,000 per year which at today's exchange rate equates to GBP 63,611.37 very similar to Dr Mortens funding for one year.

With this funding he can build a collaborative foundation, gather more interesting results, which will allow more robust applications to be submitted to the MRC and elsewhere next time around.

 

That was for one grant for the mark Davis T cell research, not the whole nih contribution.

It is sizeable in general research terms, ie in comparison with the research going on outside our bubble, which allowed it seems for this once quite promising area to be quickly well explored, unfortunately found not to be so relevant from what I gather and moved on from.This contrasts in size and potential effect to the £60-90 000 UK AFME /Scotland small grant to the same research area. I think I remember people on here saying that more could have been given and more achieved. Even if that was fitting in proportion according to country size gdp as you might argue, afaic it can’t be argued that the UK study could be truly as “field moving” and useful as the NIH size one was, which I remain grateful for.

 

I think negative views of this announcement are totally unwarranted and deeply unhelpful.

That money keeps the lights on at the UK ME/CFS Biobank, keeps Karl Morten's team at Oxford together and investigating the "something in the blood", and keeps Keith Geraghty in the field and able to look at an important, un-investigated, part of the diagnostic process for patients.

But sure, let's run down the amounts invested and complain about the words used in the press release, that will certainly help change how ME research is viewed outside of our little bubble...

 

Well seeings that was mainly aimed at me I will refrain from further comment. I haven’t changed my views but see that on here they are not shared. I only intended to make one still held comment around hype /wording, not go again into great detail about my known views on U.K. charities and their success, efforts, advocacy /representation etc.
Everyone just wants, I would think, Much more greater speed in progress towards some treatments found, preferably in our life times, preferably for me in five years, as I’ve already lost 25+, although clearly have different ideas around what is or not working, what can or could have been done, should or should have been done etc. This is always the case, there will be splits on views in any “cause’. I can take my own comfort in the funding news from Australia this week,whilst others this.

 

Sure, but how does trashing the efforts on the MEA help this? And welcome to the long-term club, I'm approaching 40 years with ME.

 

I agree with @Cinders66 about the wording. It results in PWME (those who aren't keeping up with the science) thinking we're going to get a cure soon. Of course that is possible but not likely and it's not good for us emotionally to be making those assumptions and then getting disappointed.

 

Just think what they could have done with the funding that went to FITNET-NHS

 

Agree with all you say. Also, Keith - ill himself - is doing brilliant work and we should all encourage and applaud him.

 

https://twitter.com/user/status/1187271880396492800