Fundraising for ME/CFS research - opportunities, problems

1. Not to any great degree, there is: The epidemiology of chronic fatigue in San Francisco from which: "CFS- and ICF-like illnesses were most prevalent among women and persons with annual household incomes below $40,000, and least prevalent among Asians. The prevalence of CFS-like illness was elevated among African Americans, Native Americans, and persons engaged in clerical occupations. Although CFS-like cases were more severely ill than those with ICF-like illness, a similar symptom pattern was observed in both groups. In conclusion, conditions associated with unexplained CF occur in all sociodemographic groups but appear to be most prevalent among women, persons with lower income, and some racial minorities." Scihub

2. There is data. However caution is needed when extrapolating across countries/cultures. There's quite a lot of social psychology work e.g A Large Scale Test of the Effect of Social Class on Prosocial Behavior but all the usual caveats on 'psych' research apply. The Charities Aid Foundation carries out an annual review of giving but doesn't use socio economic status but these reports are important to understand the broader picture. The UK Department of Culture, Media and Sport produced a report - data via Statistia which showed a distinct socio-economic disaparity for those areas under the DCMS purview - excludes health !

My argument was not so much about levels of giving - but literally levels of engagement, so that understanding of the problem is not a measure of how much cash is donated but about who is and who is not is becoming a member of a group or seeking support from a patient organisation and what kind of sustained relationship different people are having with patient led structures.

 

Capacity of the clinics only allows hundreds per annum - well below any Incident level required to sustain a 125k plus patient population. I do agree about GPs though, but again with each GP only having an average of <10 ME/CFS patients on their list we probably shouldn't look to GPs as being promoters of patient orgs given it might be relevant for a tiny percentage of a GPs annual clinic hours.

 

Thank you for your extensive reply @CRG.

 

Umm interesting.

I think most people who are fit and well and kind hearted and like to help out others, still kind of secretly, and not so secretly, see ME as a particular offshoot of clinical depression, anxiety or mental disorders general, while they might well run/swim/dance for these causes, the fact that we deny these as part of our M.E. -whether or not we separately identify with these-makes us suspect. Why put oneself out there for people who maybe can’t be helped until they (we) really an truly admit what’s wrong with them(us).

Or otherwise they do think we are suffering from a physical disease. But the only people they meet/work with, with M.E. are- at least at this point-the ‘mildest’ ly affected. So it seems unfortunate to have this illness but not devastating or life threatening as it can be. The worst outcomes not yet common knowledge. It’s not established knowledge either that this disease is or can be progressive. So naturally this means the urgency will lag behind other more aggressive rapidly advancing conditions. Deprioritised.

I am sure you’re right. You would have had a much easier time raising money for any other disease that had
not been disappeared by the maligning of the patient population. Also your efforts would have been rewarded with a higher total for an already more well established cause. I am sure you’d have got greater media exposure in either of these cases. Also people would have felt more confident that they were donating their money to a worthy cause, rather than a controversial one.

I think you suffered because, while almost everyone thinks running marathons and pushing yourself for a good cause is wonderful, they were confused about quite why you’d want to help us out as opposed to say all the others they might consider priority.

Yet because you did lend your blood sweat and tears to us and our pain and struggle, your credibility rubbed off on us and people did give you the funds to help us. I am so glad that despite the obstacles you were will to go through all this, and that amazingly you raised such a huge amount. For me though it was about the public statement, your profile, more than the sponsorship.

Here is someone fit and well who loves to exercise and yet they still think people who can’t are worth caring about. Worth fighting for.


It’s never easy to be a trailblazer.

I hope you hang out with us
all forever mate, love to you and the fam Xx

 

Where I live, nobody has discouraged anyone from engaging with patient orgs and yet our advocacy is still 20 times worse than what you have in the UK. Not saying you are wrong, just wanted to provide this fact.

 

Next year is a big birthday for me so I’m thinking of an online birthday fundraiser.

If I see another pwME do this I like to contribute because I know that these occasions can be very difficult and lonely. It’s a way of standing in solidarity at the loss of these normal life events.

I know the charity I would raise for. I have also written up a ‘what to do in case I die file’ to ensure donations go to said charity.

Im not sure what would be the best platform to use for a birthday fundraiser and how to share it widely.

Im also quite private so I’m a bit nervous about doing this. I have checked out a couple of longer term fundraisers through the ME community to see how they have approached this and read up the donations page on the charity.

 

That would be my husband and me. We don't have kids but we do live on a reasonably valuable property which doesn't generate much income though we're able to make some limited donations each year.

Far from everyone is in a position to make a significant bequest but for those of us who can, that may be the biggest difference we can make - albeit too late for our own benefit.

In countries that already have established charity research programmes larger bequests help ensure year-on-year certainty in the ability to fund grants, with all the advantages that predictability brings.

In countries without such programmes a significant bequest can kickstart one. This is what happened in NZ. A pwME without kids left their house to ANZMES with the wish that the proceeds be used for research and as a result ANZMES is now in a position to fund some scholarships and grants. Unthinkable before.

One note of caution, make sure you dot your i's and cross your t's. In the case above some members of the wider family challenged the will and the whole thing dragged through the courts for ages.

One issue my husband and I faced when writing our wills was deciding who to give to. That was before the ANZMES scheme and we didn't have confidence in some future iteration of ANZMES handling matters in line with our wishes - still don't because for now we have no info on how the scheme is set up and what rules they have for making funding decisions and how much depends on the whim of whoever is on some committee or other. Plus, for obvious reasons, there's no track record yet. So this is a call to ANZMES and similar charities elsewhere to be very transparent about what they do and how, and to have clear long-term guidelines, to give people confidence to include them in their will.

For the time being our bequest would go to my alma mater - which happens to be Prof Tate's university - with directions to be used for biomedical ME research. But this isn't entirely satisfactory either. While we were a bit more specific than 'biomedical', who knows how that will be interpreted in the future and what with academic freedom and all that universities may not always be the best choice. In the short term the presence of Prof Tate is reassuring but neither my husband nor I intend to drop dead anytime soon. Where they exist, ME-specific research charities with a good track record are probably the best bet. I don't know how much they push for bequests? Delicate topic obviously

 

Haven't had much luck in convincing other people to donate. The vibes I'm getting is that even generally sympathetic people just don't think ME is as high a priority as cancer or suchlike.

So have been looking at fundraising efforts by other smaller patient organisations ('smaller' as opposed to say breast cancer or Alzheimer's) to see what they're doing. Some factors keep popping up in the more successful-looking ones.

• An exceptionally energetic and committed firebrand type person with at least some relevant skills driving the whole thing until more people come on board and the organisation becomes more professional and independent of the original person.
• An organisation with the resources to capitalise on unexpected opportunities at short notice, e.g. when some celebrity briefly causes some media attention for a particular illness
• Faces and more faces. Pictures of suffering people. Personal appeals. Target the emotions of potential donors. Facts and figures can have a supporting role but aren't the primary driver
• Initial fundraising is often for something more concrete than research, something potential donors can easily visualise the effect of, or see results fairly quickly. Build a charity bowel cancer hospital, finance support services for pwMS or pwALS, that sort of thing. Research may then get tacked onto this later.
• A viral social media fad or something else memorable and attention-grabbing, possibly driven by that firebrand person again.
• A sense of either 1) this could affect me or my loved ones (nobody I know seriously believes they could get ME themselves) or 2) the recipient is obviously pityable, worthy and deserving (most of us look too well when seen in public and not in immediate danger of death)

Translating the above into the ME arena looks difficult thanks to our history of stigma and conscious or subconscious prejudice and general disbelief, at least in the short term (I like to convince myself things are slowly changing). Kind of a chicken and egg thing. More quality research would lift our credibility and hence donate-toability but we need donations to get more quality research

Quite irrespective of the prestige or otherwise of the illness in question, basic and pre-clinical research seems to be a tough sell. People don't understand it and can't see clear results. Karl Morten seems to have taken on the strategy of fundraising for specific pieces of kit, I wonder if that works better than for vague, abstract 'research'?

 

This a fantastic summary.
Thanks @Ravn.

From my outsider lay point of view this all fits.

 

I have not read all the posts in this thread but thanks to everyone who is sharing their thoughts.

It inspired me to go looking for current fundraising efforts and I found a relatively new fundraiser for OMF, new post here:

https://www.s4me.info/threads/open-medicine-foundation-omf-fundraising.11837/page-8#post-491099

This thread also reminded me of an OMF fundraiser back in 2019. The teenager who did that fundraiser asked me to speak at the event. In the end she raised $4500! And it was held in a very small town, with a population of only about 425 people.

See https://www.s4me.info/threads/open-medicine-foundation-omf-fundraising.11837/page-3#post-207010

 

I'm not on Facebook, but for the last few years (I think I started this in 2019?), when my sister asks what I want for my birthday I always ask for a donation to an ME/CFS charity. And then I send her 2-3 links so she can choose where to donate.

She has always been happy to do this. It's small, but it's something!

 

I’m aware of some ME charities getting substantial (6 figure in ST£ or $) bequests in the last number of years e.g.
- The 25% ME Group
- ANZMES
- Action for ME
- The Nightingale Research Foundation in Canada
and
I think also the (UK) ME Association

The Irish ME Trust also got one just under €100,000.

 

I forgot Dr Gordon Parish who had a trust fund which supported ME Research UK.


THE JUDITH JANE MASON & HAROLD STANNETT WILLIAMS MEMORIAL FOUNDATION
https://www.eqt.com.au/philanthropy...medical-grants/mason-national-medical-program
has funded a lot of the research in Australia over the years though it started when Ms Mason was alive.

 

I'm not sure how many people are interested in this but I found this information about bequests to charities in different countries.

From:
https://campaignsolutions.ie/wp-con...reland-Overview-2015-2021-Report-Public-1.pdf

Totals refer to the amount of assets bequested rather than the total amount of fundraising income (which is higher again).

I suspect that bequest income likely does or can make a higher percentage of fundraising income for ME charities than other charities on average because:

- many people with people with ME are relatively cash poor and a significant percentage really struggle financially

- people with ME can have practical difficulties in regards to many types of fundraising

 

Very interesting thanks!

 

Thanks for doing it. I’m friendly with a woman who has spent around three decades bedbound with ME. I got to know her from working together on some ME projects.

Unfortunately due to some medical procedures, her health deteriorated around 15 years ago and she is now worse and we rarely get to communicate. I used to send her small presents (often along with a mutual friend) for Christmas and her birthday but she has more recently asked for me to donate to ME research if I feel inclined to giving her a present.

I once had a birthday party which was not restricted to my family and said no gifts but if people wanted to donate to my chosen ME/CFS charity, they could and opened up a fundraising page.

 

Small question, it’s not too important so please don’t take the time to do a too long answer, but if you had the opportunity to put a little money in one of these 3 charities, which would you choose:
* ME association
* ME Research UK
* Invest in ME Research

 

Probably ME Research UK.
The ME Association solely or almost solely seems to fund projects in the UK.
Invest in ME Research focuses on research in Norwich.
ME Research UK though it may have a slight preference to UK research has funded lots of research around the world.
The former two approaches may mean the best research doesn’t get supported. But all do good work.

 

cheers