ME Association announces three new research grants, Oct 2019

[Cinders66]

Australia and Canada have just got one round of ring-fenced funding. The UK previously did back in 2011, so that other countries are not necessarily ahead of the UK.

Also this doesn't mean that there will be further ring-fenced funding in these countries.

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

 

[Dolphin]

Posted tonight on the ME Association Facebook page:

Charles Shepherd And there is another big UK research announcement in the pipeline. Watch this space! Dr Charles Shepherd - now in Liverpool for the Annual Conference of the Royal College of (1500) General Practitioners

 

[Andy]

I am confused. What is the $1.5 million that you are referring to here? Annually for ME/CFS, the total NIH extramural funding is about $13 million, the NIH intramural study is about a million, and CDC is around $6 million. Are you just comparing with a particular grant?

It's the figure introduced by @Cinders66

To me ground breaking sums are the $$1.5m.? nih gave to pretty quickly address the t- cell question

 

[MSEsperanza]

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.)

 

[Londinium]

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.

 

[wigglethemouse]

Grant One: The UK ME/CFS Biobank (£99,766)
Grant Two: Dr Karl Morten and the University of Oxford (£69,150)
Grant three: Dr Keith Geraghty and the University of Manchester (£25,000)

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.

 

[Cinders66]

It's the figure introduced by @Cinders66

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.

 

[Trish]

My reaction to this announcement is entirely positive. I thank all the people who have donated to the MEA research fund, the people who chose three very valuable projects to support, and the researchers who will do their level best to make good use of the money.

The MEA research fund, and the Cure ME team directly, are my preferred options for research donation in the UK, because I think they use the money wisely. That is not to denigrate other research funds, I just don't know as much about them.

Of course it's not enough, and of course the UK government funding bodies should do more, but that doesn't detract from the excellent work the MEA fund is doing.

 

[Andy]

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...

 

[Cinders66]

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.

 

[Andy]

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.

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.

 

[Saz94]

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.

 

[Sly Saint]

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

Q. What level of funding has been provided for this study?
A. The HTA as agreed to fund this study at a cost of £994,430.

 

[Guest 102]

I think this is a bit unfair. Considering the total amount of money sloshing around the two countries £200,000 is pretty equivalent to 1.5M$. I personally think the choices of who to fund are also very sensible. I am particularly pleased to see Keith getting support as he has worked very hard to raise the profile of the imbalance in past research and has a lot of good ideas.

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

 

[Sly Saint]