It'd be great if research funds could be set up in more countries, either as part of existing groups, stand-alone or affiliates of other charities

It'd be great if ME/CFS research funds could be set up in more countries, either as part of existing groups, stand-alone or affiliates of other charities

As I have argued before, research progress is most likely if all of the following are contributing significant funds to research:

(i) Government-/taxpayer-funded entities;
(ii) Pharmaceutical & biotech companies and the like;
(iii) Charities/nonprofits

Currently, I believe it's fair to say, ME/CFS is not getting as much money from any of the three categories as is justified given the scale of the condition and the morbidity associated with it (even excluding some mortality associated with it).

Of these, what is most easy for us to influence directly would seem to be:

Charity/non-profit money (which I will call privately-raised funds);
then
Government-/taxpayer-funded money;
then
Pharmaceutical, biotech, etc money.

Also charity/non-profit money can indirectly help increase the money spent by the other two categories. For example, privately-raised money can allow researchers collect pilot data which will increase the chances they would get funding from the government-type funds. Also, in some cases, with bigger projects that get turned down for government-type funds, privately raised money could pay for these projects also. Without other sources of income, researchers can leave a field. Similarly, without funding, researchers may never join the field. Also with more progress in the field, pharmaceutical/biotech companies will have more targets to invest in.

A few years ago, the following list of research funds was collected:
https://phoenixrising.me/resources-2/research-charities

There are too many countries in my view that don't have research funds.

Also, the one representative of Canada is mainly (as far as I know) just to support one physician/researcher who is now in his 80s who has rarely published in peer-reviewed journals in the last 25 years. There would seem to be a lot of potential there given over 500,000 people based on national official surveys claim to have been diagnosed with the condition.

In many if not most countries in the developed world having a charity/non-profit registered means donations from taxpayers are supported by governments i.e. it's a way to get extra money for research from governments.

Also, without a research fund being registered in a country, many types of public fundraising may not be possible.

There seems to me to be three main options for setting up ME/CFS research funds in a country:
(i) an existing patient organisation/similar sets up a specific research fund;
(ii) an affiliate for research charity in another country could be set up e.g. the Open Medicine Foundation;
(iii) a new research fund is started from scratch.

In the case of setting up an affiliate, it could probably be useful if people in a particular country volunteered with the suggestion to the larger charity or it might never happen.

Of course, there can be some problems raising money for ME/CFS. But I don't think they need to be insurmountable. For example, awareness may be lower than with some conditions but I have seen very rare conditions which would have very low levels awareness still raising significant funds. Often fundraising can involve an individual or family telling their story so doesn't require awareness levels to be that high. Also, not everyone may be convinced of how severe and debilitating an illness ME/CFS can be. But one doesn't need everyone to donate or fund-raise for money to be raised. Most charities of all types will have some people in the population, sometimes the majority, who are not that interested in supporting them.

Also to point out explicitly that fundraising can also raise awareness and understanding. When announcing any initiatives, the illness will often be described. Then on the day of any event, again, the illness will likely get described. Or in the case of blue ribbons which we have used in Ireland, when people wear them, other people will ask what they are for. Then also sometimes media articles result from fundraising.

I don't think that having no researchers in a country should necessarily be a problem. For example, in the charity I'm involved with, no researchers have come forward here but people have been happy for us to give money to research funds in other countries (we have run polls asking them to divide up a certain amount of money by percentage and offering them different options, including holding on to the money and holding onto the money has received a low percentage of the vote). An alternative option when there are no researchers in a country is for a charity to part-fund specific studies in other countries.

There are estimated to be 15-30 million of people with the condition (though many are undiagnosed and many will be in developing countries) so I believe the potential is there to raise a lot more than is currently raised. While some people with the illness would not be in a position to donate and some people (not necessarily the same people who can't donate) with the illness can have difficulties fundraising (though some types of online fundraising isn't necessarily that energy-demanding), there are plenty who could donate and/or do something. Similarly, many people with the illness will have family members e.g. spouse/partner; parents; children (esp. adult children); siblings; aunts/uncles; grandparents; etc. as well as friends who could donate and/or fund-raise. Also while many people with the condition may not have much disposable income when they are alive, some might be in a position to leave a substantial bequest in there will e.g. if they left a privately-owned property behind and some or all of the proceeds of it went to charity.

Of course there can be plenty of practical difficulties and millions won't be raised quickly or in some cases ever. But I think this is an area that needs more focus and could help speed up research progress.

Hopefully a lot of the comments that follow will involve positive suggestions rather than people coming up with a million and one reasons why this is not possible in their or other countries.

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Appendix:
Australia is probably in a better position than many, but it is still not perfect. For nearly 2 decades, there was the Alison Hunter Memorial Foundation. This along with the Mason Foundation probably helps mean there was more research being done in Australia than in many countries. However, with the Alison Hunter Memorial Foundation effectively closing down, by merging into the National Centre for Neuroimmunology and Emerging Diseases in 2014 and ceasing to be an independent charity, it gives researchers fewer options to obtain funding. The Mason Foundation, which has supported a lot of research, is a bequest that supports other conditions, apart from ME/CFS, so people with ME/CFS and their families and friends are unlikely to wish to donate to it and/or fund-raise for it meaning not as much money as possible will be raised privately. So probably not as much as is possible will be raised in Australia for the time being.
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Comments

Michiel Tack
In Belgium, we're currently working on something like that, a fund for ME/CFS research that will organize events and actions to raise money.

In the past, I have helped out with patient organizations to make the case to politicians that we need more biomedical research, that the GET/CBT approach isn't effective, that ME/CFS is a much more complex and debilitating illness than what the so-called biopsychosocial model of ME/CFS says. We have tried to point out the mistakes professors and journalists make and correct false presumptions spread in news articles.

Unfortunately, this approach hasn't always been effective. Professors are rarely reprimanded when they say something incorrect about ME/CFS. Journalists often don't do their own research but just ask professors for information and so tend to reinforce prejudices. And politicians say they want to help out but don't want to decide what researchers or doctors should do.

So with the new organization, we have in mind to try to focus more on doing our own thing instead of trying to correct the many faults in ME/CFS care in Belgium right now. We'll try to organize fundraisers and raise awareness to get more people involved who can organize events for ME/CFS research. The only problem is that this is rather difficult for severe ME/CFS patients who are homebound. So we'll probably need healthy allies, friends or relatives of patients who are willing to organize events and do something for ME/CFS. Wo hope to work with local organizations such as youth movements or cultural organizations to work on projects together.

We're just setting up the new organization (called 12ME: http://www.12me.be/index.html ), but hope it will be a more effective means to further research into ME/CFS.
 
May12th
In Canada charity Action CIND (www.actioncind.org) has a ME research fund. We have a fund raiser planned for Sept 14/19. See website actioncind.crowdchange.co for details.

We haven’t set one up yet for FM or MCS/ES but we could if donations were to come our way.

You can donate to it via either of the 2 websites mentioned above. Or to avoid any service charges, you can send an etransfer to info@actioncind.org and email us at the same address to say what the funds are for and to give us your mailing address so we can send the tax receipt.

If anyone wants more info, please contact our ceo Alison Rae at info@actioncind.org.
 
May12th
Forgot to mention the comment in the original post “the one representative of Canada is mainly (as far as I know) just to support one physician/researcher who is now in his 80s who has rarely published in peer-reviewed journals” is out of date.
While we don’t have a lot of researchers, if the money would flow there could be several. Dr Alain Moreau is trying very hard to build a research network and attract new researchers. He is doing research. Dr McGowan has done some on Epigenetics and there are others. We do need more donations and hope the government organization CIHR (Canadian Institutes of Health Research) will start funding some. There is pressure building for them to do do so so we’re hopeful things will improve.
 
T
May12th said:
Forgot to mention the comment in the original post “the one representative of Canada is mainly (as far as I know) just to support one physician/researcher who is now in his 80s who has rarely published in peer-reviewed journals” is out of date.
While we don’t have a lot of researchers, if the money would flow there could be several. Dr Alain Moreau is trying very hard to build a research network and attract new researchers. He is doing research. Dr McGowan has done some on Epigenetics and there are others. We do need more donations and hope the government organization CIHR (Canadian Institutes of Health Research) will start funding some. There is pressure building for them to do do so so we’re hopeful things will improve.
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The comment wasn't that there was one researcher in Canada. The comment was how money would be used if it was given to the Nightingale Research Foundation (the only research fund listed on the list I linked to).
 
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Cinders66
Hi tom. Thanks for these ideas and proposals. As you know I do have views on the many special problems ME has compared to other illness.. We all know though with so many affected and with the burden so high and need for stimulus great the patient generated income, even allowing for some issues like people out of work etc, is too low but reaching and inspiring those who are not engaging on forums - and there are few of us really - seems to be beyond us , even with social media. .


Thanks for trying to see solutions.
You mention countries with low activity within their borders Possibly affiliating with other major charities as a thing to bring about more funds .
I think that omf have tried to bring in untapped funds from around the world by touring and giving places like for example Denmark a place to channel perhaps currently unchanelled money. That’s great they’re trying to mop up untapped funds and stimulate a more positive movement in countries where patients have been denied but exist. Idk how that has translated financially for OMF though, they still seem to be saying they could do much more with more money. I do notice they post regularly re. Donations from Sweden so it seems they are providing a channel from that previously quiet community. Even with the HQ and visible researchers with potential breakthroughs my impression for OMF that generating funds is a problem but I’m not so up to date, perhaps OMF representatives can comment. I agree donating overseas misses potential of “gift aid “ from government however I personally now generally donate abroad for various reasons even though there are places in uk to donate. I think that american charities in particular are now being funded globally and in the past I also donated heavily to the Norwegian rituximab funds. The USA groups open themselves up to the world and afaic are leading the world but that world contribution is sub par. Where are the pwME in Japan and SA & Holland & Italy putting their money I wonder?


Regards to Canada, did t dr nacul go there so another researcher? If there is an issue raising money there , @May12th what do you think is the reason Canadians with the illness and their family are not giving much to research or do you think they are primarily giving to American funding orgs?

Part of issue re. other countries I think is I I myself don’t understand why things don’t seem to be happening in quieter countries which must have prevalence similar to the much more vocal countries. Pre internet/ SM it’s understandable people with debilitating illness can’t connect , educate etc but even in our large neighbour France, today where is the public activity, fundraising, research etc. There is as much opportunity as in Britain for charities and fundraising and individuals to set up things. Do these countries donate much internally, outside their own countries France, Italy, Germany etc or not at all ? Is there an estimation at how much globally pwME raised last year?

Other than what you have suggested I personally don’t know what can be done in more established CFS communities like USA uk Australia to make the diagnosed & families contribute more Even in uk amount raised versus amount affected is very small. Given in U.K. we have a system revolving around charities and existing research funds and biobank, so significant basic infrastructure, how would you suggest they significantly increase income with their on salary fundraising staff leading it, ie it’s got potential for proper leadership? for example so that Karl Morten could be funded despite MRC turn down?. Speaking with Dr Charles Shepherd on Facebook it was very clear that we don’t have a tissue bank planned like other illness enjoy because we don’t have the money. Uk is currently I think. raising average £4-10 per year from each person supposedly affected in a country where there is recognition, probably quite high levels of nhs diagnosis and charities in place. In reality in UK I suspect only around 10 000 actually financially contribute which makes it average £100/year per person. I think that charites Like mea have realised that featuring the severe might actually draw in money from their members , rather than scare them off, So maybe they can raise more now. AFME have slipped into doing nothing which is a waste of their membership & I think that them closing would help advance uk ME field. I don’t know if nhs are distorting the general message how, we can now get more people contributing in a major way.

I think reaching and inspiring more people with diagnosis to get involved in making the situation better is key and Sharing more about severity because sometimes the mildly ill just seem to think they just need to push on with their own lives, seemingly oblivious to rest of community. However I had expected with missing millions trying to set up a patient movement, the world would rise up more than it has. We have had more visibility than ever recently globally and outside the main countries, plus research is taking off, these things should be going massively in our favour in terms of donations. Has it had much impact ?

We aren’t currently attracting celebrity patronage and promotion so that’s maybe one area the community could try to achieve progress on, that would be trying to get money from outside rich people though, rather than the community upping its own contribution but still worthwhile. eg the pineapple quick injection of $5m philanthropic donation really helped OMF step it up to another level. Finally The differences of an immediate cash boost still makes me feel asking for cash injections from Issue ducking government and state funding bodies is important too.
 
T
Cinders66 said:
Idk how that has translated financially for OMF though, they still seem to be saying they could do much more with more money. I do notice they post regularly re. Donations from Sweden so it seems they are providing a channel from that previously quiet community.
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This is how things work in Sweden:
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RME Sweden Donation to Support Research in Sweden

Thank you to our friends at RME Sweden (Riksförbundet för ME-patienter) for your latest donation to support research at Uppsala University. Since joining forces, RME Sweden has donated over $140,000 USD (1,326,444 SEK) to OMF. An ardent supporter of OMF, RME Sweden shared that all restricted for research donations that they receive are donated to OMF “to secure scientific quality and to guarantee the independence of the researchers.”

Kerstin Heiling, RME Sweden Chair and International Coordinator said, “We are very grateful to OMF, not only for helping us with scientific supervision, but also for support far beyond the contributions that we can make.” Thank you to our partners in Sweden for your continuing support to advance this urgent research.
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If something similar could be replicated in other countries, that would be great.
 
T
Cinders66 said:
We aren’t currently attracting celebrity patronage and promotion so that’s maybe one area the community could try to achieve progress on, that would be trying to get money from outside rich people though, rather than the community upping its own contribution but still worthwhile. eg the pineapple quick injection of $5m philanthropic donation really helped OMF step it up to another level.
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Philanthropy would be great.

I imagine it is more likely to happen with more fundraising events, appeals for donations and also if there are research funds in the country compared to if there are none. I suspect quite a lot of philanthropy for our illness will be from relatives of people with the illness along with to a lesser extent people who know others with the illness.

Also in some countries like the US, there are bigger differences between the haves and the have nots. In my group in Ireland, the largest donations I recall were a few different ones of E1000 including two from a woman on basic State payments (maybe around E11,000 or E12,000 per year for someone living on her own like her) who said she saved the money by giving up smoking.
 
T
@Cinders66

Regarding the situation in the UK and in other countries.
If we could get to the situation in the UK in lots of other countries, I would be delighted. Not only are there appeals for donations from individuals with the illness, but there are a lot of fundraising initiatives to raise money from the public.

There is also more than one research fund, which probably has advantages as people with ME can be picky and start disliking groups, for one reason or another. The ME community in the UK has a great mix of other ME charities it is also supporting.

I would be surprised if there are 10,000 families with ME donating to research in the UK. I imagine the figure is less, possibly/probably a lot less. A lot of the money in Ireland comes from a few dozen families with standing orders. That soon adds up to a lot with monthly standing orders of €5/10/20 per month. A lot of the same families are those that are involved in fundraising.

I'm no expert in fundraising.
Some generals things to me that are useful source of funds, where there is probably scope to get more of:

(i) Bequests. I don't get the impression that many people with ME are leaving money in their wills;

(ii) Standing orders particularly monthly standing orders. These seem to me to lead to much bigger sums per individual than spontaneous giving;

(iii) money obtained from companies e.g. if an employee donates or is fundraising;

(iv) in general fundraising events that don't just depend on people with ME to donate. A family can raise hundreds, sometimes thousands, if it puts its mind to it.

I happened to notice a few years ago that Solve ME/CFS Initiative had raised $1.6 million in a year or coming up to year-end from around 1600 donations. So the number of donors was quite low, but they ended up with a significant total due to big donations. But the US is different from other countries with quite a lot of wealthy people and then a lot of people not far from ruin.

I remember trying to promote online donation matching fundraising appeals in around 2004 and 2005 and only a few thousand pounds and dollars was raised respectively in separate appeals. The numbers donating has increased dramatically, which is great. But my impression from people in Ireland is still that a very low percentage of people diagnosed and their families are likely donating to research anywhere. So in most countries, I imagine there is plenty of scope to raise more, though in the UK it may be better than anywhere else in the world in terms of the percentages donating/fundraising.
 
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T
Appendix:
Australia is probably in a better position than many, but it is still not perfect. For nearly 2 decades, there was the Alison Hunter Memorial Foundation. This along with the Mason Foundation probably helps mean there was more research being done in Australia than in many countries. However, with the Alison Hunter Memorial Foundation effectively closing down, by merging into the National Centre for Neuroimmunology and Emerging Diseases in 2014 and ceasing to be an independent charity, it gives researchers fewer options to obtain funding.

The Mason Foundation, which has supported a lot of research, is a bequest that supports other conditions, apart from ME/CFS, so people with ME/CFS and their families and friends are unlikely to wish to donate to it and/or fund-raise for it meaning not as much money as possible will be raised privately. So probably not as much as is possible will be raised in Australia for the time being.
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The Mason Foundation as far as I'm aware only supports ME/CFS research and Alzheimers research (I think they tend to focus on the ME/CFS more from what Ive seen over the years). They are responsible for so much of the Australian ME/CFS research. They are currently trying to set up a ME/CFS biobank and patient registry.

https://research.flinders.edu.au/rp...oundation-me-cfs-targeted-project-grant-round

"
The goal of The Mason Foundation is to achieve enduring, positive impact in the areas of ME/CFS through funding medical research principally into the causes, prevention and/or management of this disease. To deliver on its goal into the future, The Mason Foundation has identified the need to enhance its current ME/CFS grants program.

To deliver on this goal into the future, the Mason Foundation believes it is necessary to build the capacity and scale of the ME/CFS research sector in Australia. Supporting the establishment and operation of an ME/CFS biobank and/or patient registry has been identified, through a process of significant stakeholder engagement, as a key means of achieving this aim.

"
 
May12th
@Cinders66

Sorry having trouble getting the quote to work. Here’s my response to your questions about Dr Nacul and Canadian Giving.

Dr Nacul is heading up the Chronic Complex Disease Program in British Columbia. I think it’s mostly clinical work but he might assist with some research.
I think they aren’t giving for a few reasons;
1. We still have a lot of work to do to raise awareness about the illnesses and about the charities that exist that people can donate to . We have to find all the patients. Most think they are alone and don’t know about it
2. We keep asking the same people for money. (Patients that have very little to give) We have to find alternative sources. This goes with point #1. For example, Action CIND (www.actioncind.org) is doing it 1st 5K/1k Run/walk this year. It’s good in that it’s attracting a whole new group of people - healthy people. We need to do much more of this.
3. Some are giving to OMF. They have the funds to do things to get known. Canada’s charities don’t have that luxury - yet.
4. It’s hard to get media coverage or celebrity/high profile people involved.
5. All the groups need to work together so we have strength in numbers. Groups could be local, national or international. Eg imagine a May12th ad that played around the world if every charity paid a portion and helped negotiate cheap rates in their towns and countries. It would be hard to get agreement on the ad but it could be powerful I think.

I agree with Tom that not enough are leaving money in their wills.

It would be great if we could learn from others different ideas for awareness and fundraising. We all seem to start from scratch and we constantly reinvent the wheel (my opinion). It would be great if we all shared examples of what worked and what didn’t so we built a database of ideas. A pro bono group to help charities fundraise or at least provide consultations and guidance.

It would also help if government required radio, tv and newspapers to give time/space to charity advertising. Problem is there are so many charities it’s hard to help them all.

Action CIND would be happy to offer our ZOOM account and coordinate some brainstorming sessions if other charities are interested in participating. Doesn’t have to be ME charities only.
 
T
taniaaust1 said:
The Mason Foundation as far as I'm aware only supports ME/CFS research and Alzheimers research (I think they tend to focus on the ME/CFS more from what Ive seen over the years). They are responsible for so much of the Australian ME/CFS research. They are currently trying to set up a ME/CFS biobank and patient registry.

https://research.flinders.edu.au/rp...oundation-me-cfs-targeted-project-grant-round

"
The goal of The Mason Foundation is to achieve enduring, positive impact in the areas of ME/CFS through funding medical research principally into the causes, prevention and/or management of this disease. To deliver on its goal into the future, The Mason Foundation has identified the need to enhance its current ME/CFS grants program.

To deliver on this goal into the future, the Mason Foundation believes it is necessary to build the capacity and scale of the ME/CFS research sector in Australia. Supporting the establishment and operation of an ME/CFS biobank and/or patient registry has been identified, through a process of significant stakeholder engagement, as a key means of achieving this aim.

"
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The Mason Foundation has supported useful research. That wasn't my point. My point was that I don't see many people with ME/CFS donating and fundraising for it. There might be 50,000-100,000 people with the condition Australia with hundreds of thousands of first-degree relatives. They could raise a lot of money privately for research if they put their minds to it. But one needs research funds ideally registered in the country to donate to and fund-raise for and I don't see many people doing it for the Mason Foundation given it is not exclusively for ME/CFS. It is a legacy fund; I don't think it was really designed to get other people to donate to it.
 
M
As always, Tom raises some interesting and thought-provoking points. As a charity, based in the UK, but who funds research around the world, we thought it may be useful to give some background to our work over the years.

Tom’s comments about the importance of charities/non-profits and the contribution they can make to providing funding for researchers to undertake pilot studies prior to seeking larger research awards from governments is precisely the model we have used for almost 20 years.

In 2000, our founders recognised the dearth of research into ME/CFS worldwide and were determined to establish a scientifically-centred, independent research funder into the causes and consequences of ME/CFS. Since then, we have funded 50 projects world-wide, investing over £1.6 million globally including for studies in Australia, the USA, Belgium and of course the UK. Funding has come largely from individuals and working in conjunction with other charities.

However, securing central funding from governmental sources – such as the MRC here in the UK, is vital if large scale, replicated studies are to be funded. It is likely that only with these projects will the evidence of the biomedical basis of the illness be established and health-care systems, pharmaceutical companies, governments and medical research bodies provide the investment into ME/CFS which the illness’s prevalence and severity dictate.

Unravelling the scientific basis of ME/CFS is no simple matter. Funding one-off investigations are very important, but real breakthroughs in modern science come at the end of programmes of painstaking work by specialist groups of researchers. That is why ME Research UK has given continuing support to key groups early in their investigations when it can be particularly tough to get funding – with fruitful results. A case in point is that of Prof Newton and colleagues at Newcastle University when awarded MRC funding of almost £1m in 2012. As Prof Newton said when the award was announced “I’d like to particularly thank the charity ME Research UK. The charity provided the pilot/seedcorn funding for four distinct projects from 2006 to 2011, which have allowed us to accumulate the data on which these successful applications to the MRC were based. In addition, ME Research UK has supported our research programme in a variety of ways, not least by providing formal support letters for our grant applications to the MRC. The success of these applications shows what can be achieved by biomedical researchers working closely with medical research charities in a supportive and collaborative way.”

Other groups supported include Prof Khan’s projects at the University of Dundee “and Prof Jo Nijs in Belgium. In providing these grants we are able to aid researchers to establish themselves in the field, add to the scientific literature and build the basis upon which larger funders can be challenged to support sound research into ME/CFS.

As a charity, we would echo Tom’s points about the importance of funding pilot studies and we remain committed and thanks to our supporters, able to fund biomedical research into ME/CFS. As such we welcome outline research proposals for review by our science committee and other external experts. We also are looking at how we can provide ways of ensuring that there is a pipeline of new researchers choosing ME/CFS as their area of study.

Thanks again for writing about this topic Tom. Best wishes from the UK!
 
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