-
New Forum Software Installed (Still a few issues but reopening the forum) More details.
ME Association announces three new research grants, Oct 2019
Suffolkres
Senior Member (Voting Rights)
Good news. Wish it was more. But 3 worthwhile investments.
Sly Saint
Senior Member (Voting Rights)
article about this
Cause of 'world's cruelest illness' could be laid bare by new research
Cause of 'world's cruelest illness' could be laid bare by new research
https://www.birminghammail.co.uk/news/health/cause-worlds-cruelest-illness-could-17130013
I don’t really understand the hype around this to justify the use of language I don’t understand how this could be a press release or £200 k seen as transformative when we know most other major illnesses are progressing slow with millions and millions invested.
It’s good mea seem to be raising a little more money so that on top of maintenance and expansion of the biobank project they can give a moderate sum to Karl Morten as well, especially given him being turned down by MRC for large amounts.
I don’t understand why on top of survey Info more stats from research is needed on diagnosis but I accept those working with nice might feel it useful so that money is ____
Ultimately it’s nice to see mea being able to invest a bit more which suggests increasing private uk research revenue. However I don’t think it justifies the type of language
“Vital research funding that could lay bare the cause”
“All three projects constitute major steps forward”
“An Oxford centre of excellence” built on £69 000?
To me ground breaking sums are the $$1.5m.? nih gave to pretty quickly address the t- cell question and centres of excellence in the USA are built on $millions.
and whilst it can be seen as encouraging people in hope , belief or to donate I worry it also falsely lulls people into security, judging by comments on their page that they have hope now, even we might soon have a cure now etc. £200 000 doesnt bring that progress and in the UK we are still lacking the higher p investment seen now in several other countries. If mea does think ME is “one of world’s cruellest illnesses” I would have liked to see that language used to the establishment and efforts and support for harder lobbying for more significant funds past 2 decades.
It’s good mea seem to be raising a little more money so that on top of maintenance and expansion of the biobank project they can give a moderate sum to Karl Morten as well, especially given him being turned down by MRC for large amounts.
I don’t understand why on top of survey Info more stats from research is needed on diagnosis but I accept those working with nice might feel it useful so that money is ____
Ultimately it’s nice to see mea being able to invest a bit more which suggests increasing private uk research revenue. However I don’t think it justifies the type of language
“Vital research funding that could lay bare the cause”
“All three projects constitute major steps forward”
“An Oxford centre of excellence” built on £69 000?
To me ground breaking sums are the $$1.5m.? nih gave to pretty quickly address the t- cell question and centres of excellence in the USA are built on $millions.
and whilst it can be seen as encouraging people in hope , belief or to donate I worry it also falsely lulls people into security, judging by comments on their page that they have hope now, even we might soon have a cure now etc. £200 000 doesnt bring that progress and in the UK we are still lacking the higher p investment seen now in several other countries. If mea does think ME is “one of world’s cruellest illnesses” I would have liked to see that language used to the establishment and efforts and support for harder lobbying for more significant funds past 2 decades.
Last edited:
Jonathan Edwards
Senior Member (Voting Rights)
I think this is a bit unfair. Considering the total amount of money sloshing around the two countries £200,000 is pretty equivalent to 1.5M$. 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.
Andy
Retired committee member
Looking at one measure of the Gross Domestic Product for each country, https://en.wikipedia.org/wiki/List_of_countries_by_GDP_(nominal), the US GDP is approx 7.5 times the GDP of the UK, so, in my opinion, it could easily be argued that this £200k is broadly equivalent to $1.5 million - the MEA should be congratulated on matching the US govt!
Surveys are a lower level of evidence than peer reviewed research published in a journal. Keith does very good work and I'm sure will do a thorough job looking in more depth than a survey can do. I don't think it will be a case of collecting stats.
I agree.
B
i’m not sure which 2 countries you mean there is money sloshing about in versus ours , do you mean in USA equivalent terms or Australia equivalent terms ?
but there’s the $aus 3m ( £1.6m or according to population adjustment £4.1m) announced just yesterday. Norway likewise a high figure of millions Put in 2 years ago, rich but tiny country... Canada £850 000 still small but half our size...
I don’t understand how £200 000 can be seen as major or transformative to research in any way of looking at it, especially in context of investment in other illness , what is UK MS society fundraising for to make progress a £100m over 10 years? Dementia uk , a larger concern , want £300m/year from government and feel held back from not getting it and from what I understand of previous MEA funds, which was Biobank plus some small studies eg assessing the mitochondrial myhill test, it’s not that much of a departure from the normal.
It’s a notable size from a small charity with only patient donations fine, as I acknowledge, it’s the fanfare and language .., we could get a much larger “step forwar” with £1,5m/ year from the MRC which I think that we Are due.
edit I see Andy posted regarding America. Interesting observation to take into account and (if there is comparison there it’s more the US government is failing) but I wasnt really referring to just America as other countries fortunately are coming alive in this area and am happy to see more discussions on who really is tops according to population, wealth etc because that’s interesting and helpful when we compare & contrast Also there’s contrast with state investment versus charity.
However I can still only see this as important but small funds from small charity when we need just as much money invested somehow as any other major illness to make the slow progress they are.
i’m not sure which 2 countries you mean there is money sloshing about in versus ours , do you mean in USA equivalent terms or Australia equivalent terms ?
but there’s the $aus 3m ( £1.6m or according to population adjustment £4.1m) announced just yesterday. Norway likewise a high figure of millions Put in 2 years ago, rich but tiny country... Canada £850 000 still small but half our size...
I don’t understand how £200 000 can be seen as major or transformative to research in any way of looking at it, especially in context of investment in other illness , what is UK MS society fundraising for to make progress a £100m over 10 years? Dementia uk , a larger concern , want £300m/year from government and feel held back from not getting it and from what I understand of previous MEA funds, which was Biobank plus some small studies eg assessing the mitochondrial myhill test, it’s not that much of a departure from the normal.
It’s a notable size from a small charity with only patient donations fine, as I acknowledge, it’s the fanfare and language .., we could get a much larger “step forwar” with £1,5m/ year from the MRC which I think that we Are due.
edit I see Andy posted regarding America. Interesting observation to take into account and (if there is comparison there it’s more the US government is failing) but I wasnt really referring to just America as other countries fortunately are coming alive in this area and am happy to see more discussions on who really is tops according to population, wealth etc because that’s interesting and helpful when we compare & contrast Also there’s contrast with state investment versus charity.
However I can still only see this as important but small funds from small charity when we need just as much money invested somehow as any other major illness to make the slow progress they are.
Last edited:
Jonathan Edwards
Senior Member (Voting Rights)
The same people are working hard to get the MRC project turned in to a reality. I agree this is only a slice but in my view likely to get better value for money than a lot of other hand outs.
Dolphin
Senior Member (Voting Rights)
I’m very grateful to the people who helped raise this and other research money privately either through they or their families donating, fundraising and/or supporting the infrastructure of charities.
My impression is a lot more could be raised privately in the UK and around the world if more people focused on the issue of raising money privately.
My impression is a lot more could be raised privately in the UK and around the world if more people focused on the issue of raising money privately.
If we eventually get money In 2020-21 I would say We as patients couldn’t afford 8 years of CMRC methods to get this 1 picked and only project set up and there could have been other ways than just trying to get one major project funded, when from what I’ve seen it’s accepted it can be a difficult to get funding approved for these type very large projects.
I believe RFF was always an option MEan time and we could have lobbied for that for years afaic. Plus other things , such as why only set up other CMRC groups now and even then it’s lame eg Carmine pariante doesn’t have the immunology group off the ground.
That’s partly why I criticise MEA & AFME because I think that they Big up too much really what they achieve as if it’s enough, which in scale to other illness groups it is too small but obviously we have impeding factors which I recognise, but they also don’t apply enough pressure in diverse ways on the establishment who have not done enough either. The result is current uk Research investment combined of around £500 -800 000 / year biomedical research and nothing on the horizon for treatments.
I personally have not endured the past frankly nightmare 8 years at all well and it’s supposed to be one of the worst illnesses as they say....
my main point was the unusual language and press release for this type research investment, made more “impressive” because it was announced collectively. Not what it was investing in or saying they should easily have raised more etc. If the charities can find some way to encourage or perhaps inspire more people to donate and more, that is to be desired
Last edited:
Jonathan Edwards
Senior Member (Voting Rights)
I am really not quite sure what the beef is @Cinders66. If the MRC project gets funded there is no need to wait 8 years. What people often do not realise is that funding tends to be obtained after the key work has been done to make progress. Until funding is announced nothing will happen but I am pretty sure that once it is results will start to fall out almost before the ink is dry. Getting full cohorts set up will take time but not 8 years.
Until the current collaboration was sorted out about a year ago I don't think there was a group of people capable of getting a decent project going in a position to apply. We were told that applications were not good enough and that certainly looked to be the case until the present grouping got their act together.
I agree that things are slow but if there aren't the groups of scientists there to do the research then you cannot blame funders for not funding.
I don't know what RFF is?
I am not sure what Pariente has to do with it?
I doubt MEA would suggest what they can do is enough. And if they do not have enough cash surely that is the fault of the public not contributing, not of MEA not collecting. There is absolutely nothing that MEA can do to put pressure on the establishment that they have not tried, I am pretty sure. If nobody was putting forward decent projects the establishment was right not to hand out money.
If MEA should easily have raised more why were they not told how to do that by those who know how? I am with Tom K on this. I think the real problem is that people do not realise that most research is funded by public donations to charity and if that is not happening in ME it is not the fault of the funders that exist.
Until the current collaboration was sorted out about a year ago I don't think there was a group of people capable of getting a decent project going in a position to apply. We were told that applications were not good enough and that certainly looked to be the case until the present grouping got their act together.
I agree that things are slow but if there aren't the groups of scientists there to do the research then you cannot blame funders for not funding.
I don't know what RFF is?
I am not sure what Pariente has to do with it?
I doubt MEA would suggest what they can do is enough. And if they do not have enough cash surely that is the fault of the public not contributing, not of MEA not collecting. There is absolutely nothing that MEA can do to put pressure on the establishment that they have not tried, I am pretty sure. If nobody was putting forward decent projects the establishment was right not to hand out money.
If MEA should easily have raised more why were they not told how to do that by those who know how? I am with Tom K on this. I think the real problem is that people do not realise that most research is funded by public donations to charity and if that is not happening in ME it is not the fault of the funders that exist.
I will be brief as I’ve expended too much energy on this
1) the 8 years is the wait 2013- 2021. 7 years maybe if starts 2020. It is the time waiting since CMRC set up, 13-14 years if you include the ME expert group collaboration with MRC nihr representatives eith just one year funds to show for it
2) RFF is ring fended funds to incentivise funds, recognising the research interest isn’t there with the current name, criteria, education and climate. That is the tool other countries are using.
3) pariante not getting the immune working group set up and the other speciality groups only set up within recently in the CMRC illustrate an amateurish approach and SHow that not all was being done by the charities as asserted , rather all eggs were put in to the MEGA basket. If it was not good enough at the start, even more bad to those in the CMRC for focusing solely on it rather than alongside lobbying them into issuing RFF.
4( other charities lobby, they lobby for a government strategy if their illness is neglected , they petition for things that need change, they lead their volunteers to campaign. Our charities don’t, nor have they publicised much the #millionsmissing when they tried to set up a patient movement. Obviously that type of more radical patient involved activism isn’t to everyone’s taste and for me just negotiating with a difficult unhelpful mrc , on their terms, behind closed doors isn’t my taste.
MEA hasn’t tried to function as normal national charity or build themselves up with the skills of volunteers. If they’d grown, been more dynamic, more democratic, more campaigning, more out on the streets etc they might have grown a larger base and had more money. There is much more that course said around this than I’ve said, and it’s not as simple as the “public’s fault” for MEAs lack of supporters or income afaic.
howevr as I said before my initial comment was the language used in the press release to describe 3 small research grants. Which in itself might signal to people hey we are doing great on funding and research in the uk, when we really aren’t.
Last edited:
Jonathan Edwards
Senior Member (Voting Rights)
Ring fenced funds are no good if they just go to rubbish projects. I haven't seen projects really worth funding until very recently, with the exception of the ME Biobank projects. I agree that CMRC has been inefficient but I do not see that as the fault of MEA. The policy of hanging in with CMRC may finally have taken things in the right direction (with some help from noises off).
As far as I can see nobody anywhere else in the world has actually achieved anything yet with the money they have been allocated - beyond confirming a few negative findings.
I would have thought the hype in the press release was purely intended to make people feel good - especially those who have actually coughed up their own money. As I say, if we aren't doing great I cannot see it is the fault of MEA.
As far as I can see nobody anywhere else in the world has actually achieved anything yet with the money they have been allocated - beyond confirming a few negative findings.
I would have thought the hype in the press release was purely intended to make people feel good - especially those who have actually coughed up their own money. As I say, if we aren't doing great I cannot see it is the fault of MEA.
Jonathan Edwards
Senior Member (Voting Rights)
Having read the press release I really cannot see what can be objected to. It points out very clearly that not enough money is available for ME research. It is very positive about what has been achieved and I think that is just normal courteous behaviour when lots of other people haver contributed to the process.
Dolphin
Senior Member (Voting Rights)
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.
Also this doesn't mean that there will be further ring-fenced funding in these countries.
Last edited:
Wilhelmina Jenkins
Senior Member (Voting Rights)
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?