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 helped 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.

 

Perhaps in time we'll be able to have a S4ME research fund. I'd have to give up a lot of other jobs to make that happen though, and it would probably be best to wait until we are a charity anyway. I'm just thinking out loud here, I'm not making any promises at all.

 

IMHO, I don't think that is really necessary, as there are already large and effective organizations in the UK an the US that fund ME/CFS research such as Invest in ME, MERUK, Open Medicine foundation etc. I think there's more a case to organize research funds in countries such as Germany, France, Italy, Spain which have different languages and where the fund could be adjusted to local obstacles and opportunities.

Just to give one example, in Belgium in December there's an event called the 'warmste week' (the warmest week) where fundraisers all over the country are organized for just about any good cause. It's very popular and well known, so if you ask people at that time to give money for ME/CFS research more people are likely to give or help out with an event. Some people plan to organize a fundraiser to do something good but haven't thought about a good cause they might give it too. Last year a friend of my sister decided to donate the money of their event to a ME/CFS patient organization which raised around 2000 euro. But the thing is, you have to be a Belgian organization to be part of the 'warmste week'. So that's why a local ME/CFS research fund might be helpful.

I've been trying to work on this with others in Belgium, though we are just starting things. I've made the following comment on Tom's blog post on Phoenix Rising, which I would like to share here:

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 etc.

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.​

 

I accept your general point, but I think there could be some benefits in having a new research fund in Canada as I discuss. Probably also Australia too.

 

Thanks for posting this Tom. Very important issue. I wonder if some of the larger research charities (eg OMF) could set up specific affiliate programmes to make it easier for overseas ME organisations to raise funds for them in their own currency (which enables charities in some countries to receive extra money as a rebate on the income tax paid on donations – eg Gift Aid in the UK).

Absolutely. A good example is Jarred Younger who has just received a $2.9 million NIH grant following on from pilot studies funded by ME Research UK and Solve ME/CFS. Also, the UK ME Biobank was funded by the MEA, MERUK and AfME before it received a $2.1 million NIH grant.

 

To facilitate sharing online:
https://twitter.com/user/status/1158460586566569986

https://twitter.com/user/status/1158700786018332673

 

Well, although we are an English language forum, and we have a strong UK connection in our staff, we are still an international forum, so it could still play a part in my opinion, should it ever happen. But certainly additional European research funds being created in those countries that don't have them would be very useful, not least as a way to potentially tap into EU funding.

 

Or if people prefered they could share the URL to this thread,

Code:

www.s4me.info/threads/itd-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.10691

 

The following comment has now been posted under the blog:

 

A follow-up comment I posted elsewhere that I think works as a stand-alone comment:
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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 a row 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.