Association of Medical Research Charities in the UK fund nearly half of the publicly-funded medical research

I'm curious as to what benefit there is for charities in this? There is a member benefits page, https://www.amrc.org.uk/Pages/Category/member-benefits, but it seems a lot of blah-blah rather than much that looks tangible to me.

Membership of the AMRC can be viewed here, https://www.amrc.org.uk/Pages/Category/member-directory

Things I learned from the membership list, there is an Encephalitis Society, https://www.encephalitis.info/Default.aspx, and that World Encephalitis Day is on February 22, https://www.encephalitis.info/pages/category/wed2019. Perhaps if brain inflammation gets proven to be the case with us then they'll start research into ME?
 
No figures I can easily point to, but reading old CFIDS of America newsletters, it looked like much funding at that time, (20-30 years ago) came from the ME community.

Looking at recent OMF, and Solve ME/CFS Initiative funding, as just some of the examples, I would guess the ME community is still funding the lion's share.
 
DokaGirl said:
No figures I can easily point to, but reading old CFIDS of America newsletters, it looked like much funding at that time, (20-30 years ago) came from the ME community.

Looking at recent OMF, and Solve ME/CFS Initiative funding, as just some of the examples, I would guess the ME community is still funding the lion's share.
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I'm not convinced with regard to ME/CFS:

I checked the Charity Navigator website recently for the entry on Open Medicine Foundation:

https://www.charitynavigator.org/index.cfm?bay=search.profile&ein=264712664

In 2016, their income was: $1,627,743
Their expenditure was: $1,053,726

In 2017, their income was $2,657,107

As I recall, the Solve ME/CFS Initiative's was something like $1.6 million in a recent year.

A lot of charities' income would go on salaries and other expenses.

The CDC CFS budget is just over $5 million a year.

The NIH budget is
FY 2017 FY 2018
Grants/Intramural $6,742,437 $4,663,553
Research Centers $7,225,267 $6,959,487
Total $13,967,704 $11,623,040
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(https://occupyme.net/2018/10/21/nih-funding-for-me-goes-down-in-2018/ )

The US is a bit different overall anyway as their government-funded research budget dwarves the medical research budget of other countries. It may be even more than all other countries combined?

I don't know what the ratio between public and private is in the US in general, but a lot of money is also raised privately for research.

---
Aside (to nobody in particular)
I think a lot of people outside the US where there is universal healthcare think similarly it's governments job to fund all or nearly all the research, but I don't think that's the best way to bring about progress quickly.
 
Thank you @Tom Kindlon.

Again, no figures, however, historically, during very dry government funding times, the ME community in the US was funding biomedical research.

It would be interesting to be able to compare research funding from charities vs. governments for the past 3 decades.

Just a guess, but I think the ME community would win the bet if we looked at 3 decades of biomedical funding.


Some funding does go towards salaries in American ME charities.

I am not aware of any funds being spent on salaries for Canadian ME charities, except for a small bit of occasional contracted out work.

My understanding is the Canadian groups are all strictly volunteer.

The ME charities are making headway; more so than governments IMO.



I don't know if government reports break out the salaries and administrative costs they cover to supervise the ME research grants; this amount might be included in the figures, and could be substantial.

From reading Osler's Web, funds for government in house research may be swallowed up in administrative costs, leaving little for actual scientific work.

Given some goverments' record on shifting designated funds to other "more important diseases", and not breaking out the biomedical vs. psychosocial research, can government funding reports be taken at face value? Can we be assured all the funds are designated for biomedical research?


It is government's job to fund research, however, if we want some control over what research is done, the community needs to fund studies.

Turn around time is faster with private research, and the community does have some very experienced, knowledgeable, dedicated experts.

Leaving the job to governments would not work.
 
DokaGirl said:
I am not aware of any funds being spent on salaries for Canadian ME charities, except for a small bit of occasional contracted out work.

My understanding is the Canadian groups are all strictly volunteer.

The ME charities are making headway; more so than governments IMO.
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Well done and thanks to all involved.

How much are, and have been, Canadian charities raising for ME or CFS research? I don't hear much about this.
 
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DokaGirl said:
Given some goverments' record on shifting designated funds to other "more important diseases", and not breaking out the biomedical vs. psychosocial research, can government funding reports be taken at face value? Can we be assured all the funds are designated for biomedical research?


It is government's job to fund research, however, if we want some control over what research is done, the community needs to fund studies.

Turn around time is faster with private research, and the community does have some very experienced, knowledgeable, dedicated experts.

Leaving the job to governments would not work.
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The way I would say it is it's quite likely for the time being that some government research money will go to professionals who believe in a biopsychosocial/rehabilitation/similar approach, especially given how many people are employed offering such approaches in many countries. This has been a big problem in countries like the UK and the Netherlands.
 
Thank you @Tom Kindlon. I don't know what the Canadian ME charity situation is re raising funds for research. Hopefully someone else on the forum knows.

Thank you @Dolphin. Yes, I agree, some funds will continue to go towards BPS research. And, it has indeed been a big problem in the UK, and the Netherlands, as well as the US, in the past. Just an estimate from my ME memory, Canada has only spent about $2 or at most $3million on any ME research in the last 20 years.
 
Regarding salaries, I don't think that's a bad thing. People need to eat, and pay rent/mortgage. Some places are really spendy to live in (like D.C., and big cities in CA).

It might be nice if we could pay all the volunteers, too, but that's likely not possible for a variety of reasons.

Here's a good link on direct and indirect costs and what goes into research funding:
https://doresearch.stanford.edu/research-scholarship/costs-conducting-research

@Jenny regularly posts on where all the US federal funding goes, and whether it's being categorized correctly.
2018 post (less detailed about the various projects--perhaps none are new)
2017 post
2013 post
 
But other illnesss don’t have our PR issues. Cancer for eg I think funds loads of its own research because it can raise lots of money. The medical profession can’t have it both ways, label us poorly, muddle In tired people, trumpet the wonders of cbt and exercise in reversing the illness and then say you should be fundraising for yourself like MS. I don’t think WE ARE neglecting the private side of fundraising, I think the community that is diagnosed and aware are doing what they can. It’s arguable that stigmatized illness need more government intervention because we can’t compete. We are also having to split our money on both advocacy and research. If MS income is £30m annually and ours £1m, something drastic has to happen to bring parity of progress. There’s lots of talk regarding parity of esteem for MH with physical, I think ME lacks that.
 
Cinders66 said:
I don’t think WE ARE neglecting the private side of fundraising, I think the community that is diagnosed and aware are doing what they can.
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It is hard to be certain now because of international donations but in the past the numbers donating in my country were very small and the numbers fundraising smaller again. And from what I see the numbers of people leaving money in their wills are very small worldwide. And I don’t accept large percentages are too poor to give anything especially when one sees the amounts spent on speculative treatments. If people realised it governments don’t fund all the research the way they pay for all the healthcare (in countries with universal healthcare), more sacrifices might be made.

The amount raised by the MS Society (or whatever it is called) in the UK for research over the years is £283 (or something like that) million; for the ME Association, it’s £1 million. There are some other ME research funds in the UK but there is or was at least one other MS charity. And the UK ME charities do a lot better than most countries worldwide where there are much fewer people fundraising or donating.
 
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WillowJ said:
Regarding salaries, I don't think that's a bad thing. People need to eat, and pay rent/mortgage. Some places are really spendy to live in (like D.C., and big cities in CA).

It might be nice if we could pay all the volunteers, too, but that's likely not possible for a variety of reasons.
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My point above wasn't to complain about people getting salaries but simply to make a factual point that the total income for an ME/CFS charity isn't equivalent to how much it raises for research. The specific charities I mentioned have incomes of over $1,000,000 a year and it would be very hard to run such charities just by volunteers.
 
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Dolphin said:
It is hard to be certain now because of international donations but in the past the numbers donating in my country were very small and the numbers fundraising smaller again. And from what I see the numbers of people leaving money in their wills are very small worldwide. And I don’t accept large percentages are too poor to give anything especially when one sees the amounts spent on speculative treatments. If people realised it governments don’t fund all the research the way they pay for all the healthcare (in countries with universal healthcare), more sacrifices might be made.

The amount raised by the MS Society (or whatever it is called) in the UK for research over the years is £283 (or something like that) million; for the ME Association, it’s £1 million. There are some other ME research funds in the UK but there is or was at least one other MS charity. And the UK ME charities do a lot better than most countries worldwide where there are much fewer people fundraising or donating.
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But your implied point is the reason for this is that uniquely to ME, sufferers with it don’t donate but rely on government, unlike other illness ditto their families, therefore the key to getting more money is convincing the community to be proactive? ... is that true. Isn’t there a whole host of reasons we fundraise Less than, which can’t be reversed through telling those we can reach they need to actually donate instead of rely on government. Could just reach and connection be the issue, CFS diagnosis versus ME charity names etc rather than the issue being people think government are funding when they clearly aren’t.

The situation worldwide mystifies me because even if they’re not well organised you’d think there was the same sufferers in proportion in every European country yet the voice isn’t heard much, pressure doesn’t seem applied, organisations aren’t formed and money isn’t pouring through available channels. I realise that some may have no diagnosis but even if we just counted severe sufferers and families its thousands in each country. .
 
Tom Kindlon said:
Well done and thanks to all involved.

How much are, and have been, Canadian charities raising for ME or CFS research? I don't hear much about this.
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I don't know of a charity that raises funds specifically for research in Canada. Alain Moreau's research has been funded by a private charity according to the nurses who did the research trial, seemingly from wealthy donors who likely have a sick relative. Funds raised from advocates aren't enough to fund research, basic awareness is still very low.

Ironically, the rise of the psychosomatic model of ME has lead to some countries building up their network of organisations in response, as it happened in the UK and Australia. In Canada it's been pretty much completely ignored by the government so awareness is not as well-developed. It may have spared us some suffering, but advocacy networks seem to have evolved much faster in countries where the psych model was promoted by political will.
 
I don’t think thinking it’s the government’s job to fund all the research is the only reason not much is raised. But it is low-hanging fruit: an attitude that can be challenged with the facts.

I don’t think ME is unique: I imagine there are quite a number of conditions where more could be raised. The AMRC only has 140 members suggesting there are large numbers of conditions with no research funds in the UK. I know with fibromyalgia for example even though more people have it, less is raised privately for research and there is no research fund in my country.

I imagine a big reason not much is raised for ME is individuals with the illness and their families think they will eventually get better either with time or if they just need to try the right treatment.

I know in my own case that realising my government didn’t fund that much research and that I probably wouldn’t get better without research progress led me to make sacrifices I might not have made if I thought the government just needed to be prodded in the right way to fund all the necessary research.
 
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rvallee said:
I don't know of a charity that raises funds specifically for research in Canada. Alain Moreau's research has been funded by a private charity according to the nurses who did the research trial, seemingly from wealthy donors who likely have a sick relative. Funds raised from advocates aren't enough to fund research, basic awareness is still very low.

Ironically, the rise of the psychosomatic model of ME has lead to some countries building up their network of organisations in response, as it happened in the UK and Australia. In Canada it's been pretty much completely ignored by the government so awareness is not as well-developed. It may have spared us some suffering, but advocacy networks seem to have evolved much faster in countries where the psych model was promoted by political will.
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I read somewhere that the Open Medicine Foundation may be trying to apply for nonprofit status in Canada. I hope that happens. We need as much fundraising as possible for research in as many countries as possible, particularly countries with a population the size of Canada.
 
Salaries for staff in charitable organizations, are needed. The ME issue is a David and Goliath thing. Goliath has the money, and power to keep the ME community under its thumb indefinitely.

Volunteers have managed a great deal, and many of them are very disabled by this disease. However, volunteers with ME are of course hindered by this disease. We need healthy people to provide the ongoing consistency we cannot.

Reasons the community doesn't fund research:
- people are told "cfs" is short-lived; they will get better soon
- governments write insincere letters to pwME telling them "we are generously funding research for this disease"
- concerns money will be frittered away by large institutions used to getting millions to play with
- don't know which research groups would best use the funds
- feel their small donation is pointless (but every bit counts!)

There are probably lots of other reasons why the ME community, although large does not fund much research.

I agree with you @Dolphin, pwME spend tons on a whole range of "treatments", but
don't donate to research for ME.

As regards fund raising, public relations for ME is abysmal, as we know. This is changing, but people still call it the "lazy disease", and consider pwME scammers. Some funds do seem to come from outside the members and their families, but we have a ways to go before ME pulls at the public's heart strings like other diseases do.
 
Re your comment @Dolphin about the government just needing a prod in the right way to fund research. I came across this attitude from a couple young political assistants, who wondered why I didn't just write a couple letters to powerful politicians and set them right about the needs of this community. When I told them I had been writing to politicians for decades, they had no comeback.
 
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