Video: Who Funds Research? | Why The Charity Sector is Vital For Long Covid & ME/CFS

From the video description,
"In this conversation, we discuss the importance of funding for research in the charity sector, specifically for ME, CFS, and long COVID. The majority of research funding comes from charities, with only a small percentage coming from the government for other diseases, hence the need to emphasise the power of an established and reputable organisation in the charity sector. The example of the Cystic Fibrosis Trust is an inspiring case of how focused efforts and resources can lead to significant improvements in a niche illness. We compare the fundraising efforts for ME/CFS with other diseases like MND and Parkinson's, noting the disparity in funding despite the lower number of people affected by ME/CFS.

Hopefully this provides an overview of why the charity sector is so important, and inspiring that even diseases with low numbers of people were able to drive such huge change!"

Tweet from Peter White, who was the interviewee.

"A major cause of poor #MECFS and #LongCovid research funding is poor fundraising and fund spending by the UK ME charity sector. Here's an overview of charity research spending by disease, showing performance against comparable diseases."

 

Not watched it myself, it's 90 mins long.

 

An important message. I have tried to make it myself over recent years though I haven't always made myself popular by making it; it seems it can be easy to leave yourself open to criticism if one makes this argument. But it has been disappointing that I have had to deal with stress for raising the point.

I can understand why people might not want to take on the responsibility of trying to financially support research through fundraising and/or donations.
It's probably a much more comforting idea to think that governments are responsible for this.

Of course governments have a role. But one of the best ways I think of accessing government funds is to have lots of active researchers in the field which is more likely to happen with significant private funding.

So private funding both pays for research itself and should increase the number of grant applications to go in to government-supported funding bodies. And added to that, if they have pilot data giving some evidence to support the hypothesis, they are more likely to get their grant accepted and private funding is very important for funding pilot research.

Saying all that, I think the UK has been one of the best countries for raising money privately for ME/CFS research. If we had more countries like the UK, we would have had a lot more ME/CFS research over the years.

 

Saw this shared on Twitter. Am part way through this and it's quite interesting and shows how, I guess, diluted fund-raising and spending is with the number of small charities and how minuscule the research spending is compared to other illnesses. Interesting point made (IIRC) which I think points potentially to benefits of consolidation, the additional clout they may have where research is concerned, ie. someone comes asking to study the improvement on ME from eating donuts (actually, that might work..) asking for funding, the larger body would be better able to send them packing and influence other research funding.

ETA to remove Twitter thread as covered in Andy's original post.

 

I haven't watched the video but the question will be how does one improve this and why exactly is the funding this low?

Does anybody know of a similar list that is longer and possibly looks at how this has developed over time?

Can it be because of a lack of biomarkers? That doesn't seem plausible since these don't exist in Parkinsons either.

Does it have to do with general awareness of these conditions? Motor neuron disease receiving far more funding than IBD suggests otherwise.

Is the fact that psychologists have controlled the field with studies of low quality (the only thing one the list close to ME/CFS is IBD)? If that was the case how much private funding do mental health organisations obtain?

Is it purely because of the stigma ME has had to fight against?

Maybe it also just depends on one organisation that somehow manages to change everything. I do wonder how the Parkinsons field would look like without the Michael J Fox foundation. Did the Icebucket challenge, which to me as an outsider without any knowledge seemed to be more fluke than anything else, change anything for private ALS funding? If yes, then this might suggest that luck plays a role as well.

 

https://twitter.com/HarryBoby4 has posted a few short video extracts on Twitter.
e.g.

 

Peter White has quote tweeted a number of HarryBoby4's tweets with comments and image files e.g.

 

Interesting analysis. Many thanks to Peter for doing all this research, I found it very useful.

Might be good to write it down into a blog post that is a bit shorter and easier to digest so that it can reach a wider audience.

 

I'm not able to watch the video so I hope there will be a blog post form. It is an important topic. Pilot funding for research is so important.

A few years back I looked into OMF financial accounts over a number of years. The majority of donors contributed just north of $1MM a year with the majority of the money coming from just a few large donors.

ME Research UK is similar. For example in their 2022 report they mention they received additional resources from "The Gordon Parish Charitable Trust and The Fred and Joan Davies Bequest".

I think having lots of small donors who talk about the charity in positive terms is good for publicity and PR and helps attract the larger donors. But I'm sure it's a lot more complicated and not the only way to succeed e.g. PolyBio.

The other confounding factor is that many ME/CFS charities have many other focus areas, not only research...........

 

Although 100% true, that's the difference that a discriminated "not even a real disease" makes. We could easily raise those funds if we had the support of the medical profession. But we have their hostile indifference, the main actors telling people that investing in the necessary research we need is actually bad for us.

I don't know how we fix that, but I'd say that's about 90% of the problem right there, and it would be fixed quickly and easily if the medical profession were not united against us, or at best indifferent. So although there is a problem with raising funds, we still need governments and the medical profession to do their part here, since they are deliberatly blocking us from doing what we need to do.

 

I think the US is different from most countries. It has a lot more millionaires than most countries. I don’t think there are enough very wealthy people in many/most/all other countries to depend on, certainly for the charity I’m in we don’t. And it could be hard to reach them without the charity being highlighted widely and the importance of private money (they, like lots of other people, may think the responsibility for funding research is with governments).

The Gordon Parish Trust is a bequest so both those two big sources of funds for the ME Research UK are bequests. Large bequests are not only left by wealthy people: people can be relatively or even very cash poor when they are alive but own the property they live in and so may if they choose leave a large-ish bequest to charity. But again they ideally need to hear the message that private money is very important for research progress, it’s not like medical care in most western countries where it is governments’ responsibility to fund it.

With regard to the US, I know that Solve ME have a staff member for “major gifts”.

 

Related blog

https://harryboby.substack.com/p/this-is-how-we-solve-long-covid

 

I've been watching the video over a few days. It is very thought provoking with a lot of work put into presenting a pretty convincing story. Peter has done an excellent job of presenting a case that a lot more can be done to address the shortfall of ME/CFS research fundraising by the UK charities and there are great examples on what a range of other non-ME/CFS charities have done.

The video only has 181 views and it deserves a wider audience.

In a dream world it would be great if the UK charities all got together to hear Peter and Harry's ideas and then brainstorm how they could improve.

 

I'm sorry you've had criticism and stress for promoting this. I wonder if some of that criticism was a misdirected feeling of defeat by people who have tried and tried to fundraise but with little success? Not to excuse anyone turning their own sense of frustration on others, just trying to understand why anyone would criticise rather than engage in this important discussion.

Anyway, lots of food for thought in the video here. Definitely deserves a wider audience and also some serious consideration by the charities. The video is about the UK situation but much is applicable elsewhere.

It's long but if you can watch just a bit, try watching from about 1:12.

The earlier part involves a lot of looking at fundraising data in many different ways. ME charities are compared to half a dozen charities for other diseases. A brief summary of the first part:

• a large or even the largest part of research funding comes from the charity sector, not from government sources, for all the diseases analysed
• the ME charity sector is the least successful at fundraising, Crohn's does somewhat better, all the others do a lot better, often magnitudes better
• the ME charity sector has many more players than the others, potential risk of waste through duplication of effort
• the ME charity sector relies more on a low-cost approach reliant on volunteers than the others
• the ME charity sector invests less in professional level fundraising, is less business-like and uses product marketing strategies less than other charities

They also discuss potential hurdles specific to ME, notably stigma. They make the point that some of the other conditions are also stigmatised, e.g. mental health or 'Parkinson's is just a bit of shaking' yet their charities have come a long way in overcoming this and are now able to raise a lot of funds. To me this is both encouraging - change against the odds is possible - and discouraging because I think they underestimate the challenge ME faces. ME isn't just a stigmatised disease, it's a stigmatised non-entity few believe themselves to be at risk of getting. But, something being difficult doesn't mean we shouldn't try.

The last part of the video is about possible solutions and I encourage you to watch this bit if you possibly can and use it as a discussion starter. Some of the main strategies proposed (not to be construed as fingerpointing at individual charities who all have their different strengths and weaknesses):

• employ more professionals with skills in fundraising, marketing, search engine optimisation, etc
• charities to build a stronger reputation as credible first-call sources of information
• charities to become better at communicating outward to people outside the ME community
• ME community (all of us, not just the charities) to better mobilise our healthy friends and family to spread the word on our behalf in their clubs, faith groups, workplaces, etc
• charities to develop support materials to help them do this
• promote legacy giving and make it easy to do

There were more points but I can't remember them now. The video also has more detail on how the proposed solutions would work and what wider effects they could have

 

The ALS fundraising had been on a steady upwards curve already for years before the ice bucket challenge. That challenge going viral very likely was random luck - but I guess you can only have random luck if you try a lot of things in the first place and hope that one of them will work out - so if anyone has any good or crazy ideas...

 

At 24:33 in the video the following slide shows ME research funding spend (in GBP1,000's) by the UK charities and UK national funding bodies [2020 seems to be an anomaly, perhaps advance DecodeME funding for several years?]



In addition to this I found that the US NIH spent $3,277,062 (~GBP 2.66MM in today's money) for projects at London School of Hygiene & Tropical Medicine.


The thing I find most interesting in the NIH data and the Decode ME funding is that to sustain a significant project (above pilot level study) for multiple years you need ~$500,000 per year. So charity money at it's current level only allows for a few side pilot projects where the researchers have other funding covering salary and infrastructure that is not ME related. That shows how far behind funding for ME/CFS is.

 

Hi all, thanks for sharing and talking about this - I am grateful.
Firstly, apologies for the length - it was unrehearsed. I hope to get this down to a shorter version in the future.

As has been noted, the key point are:

Who should pay for ME research?
• The major source of funding for a lot of disease resarch is the charity sector, accounting for over half of medical research funding.
• A well-funded research sector probably wants £10-£20 million / year invested, of which more than half comes from charity.
• If we want a significant ME research programme, we must fundraise to deliver it.
• If research is charity-funded, we can better control the type and direction of research, starving out the BPS approach.

How is the ME charity sector performing?
• The ME charity sector does not fundraise as successfully as other disease sectors: Parkinson's and Multiple Sclerosis fundraise and spend around 30 times what the ME sector does on a per-person basis. Cystic Fibrosis and MND fundraise around 150x and 350x respectively. Even Sickle Cell disease, which also has a poor and sidelined population fundraises better.
• While stigma may be a factor, other diseases have overcome this issue, and become very successful. The fundraising process actually helps overcome stigmatisation.
• There are some cultural and philosophical blocks: low spending on fundraising, and an unsophisticated fundrainsing machine hamper the fundraising work.
• We lack a strong legacy fundraising programme - a lot of charity funds come from legacy donations (for example, people's pension funds), but we are bad at encouraging these, potentially due to the charities' difficulty in discussing death in the ME community. We may be able to help by discussing and encouraging this within the community.
• We need to establish a growth mindset - looking to grow income year-on-year and use this money to drive change.
• While many people with ME have reduced funds, close family & friends are better able to donate. We need to better engage and leverage this group, just as Parkinson's UK and other disease charities have done.

Grabbing control of the disease narriative:
• While we often point fingers at others as driving stigmatisaiton, there are well-trodden paths that the ME sector can take to improve perception. We can and should implement these approaches rapidly.
-- As an example of this, imagine you had just been diagnosed with ME symptoms, you may be told you have "Chronic Fatigue Syndrome" (ME is unlikely as many GPs don't use that term). When you go home and google that diagnoses (as everybody is told not to, but everybody does), you will not find the NHS website, Mayo Clinic, CDC, John Hopkins, Better Health Channel. The ME charities are invisible.
-- By contrast, if you google "Parkinson's", the second result is Parkinson's UK. This means that Parkinson's will get more visitors, who can then be given Parkinsons UK's views on the disease, and they can engage new donors and members. Getting a good google result is called "Search Engine Optimisation" (SEO) and should be high on our agenda as it could enable ME charities to better control the disease narrative.
• We talked about Customer Relationship Management (CRM) tools such as Salesforce, which enable organisations to target people with messaging. Using such tools could mean that visitors to ME charity websites could receive cookies and then be targetted across social media, sharing key messages about ME.

Governance:
• Touched on only briefly, but there are significant governance issues in some of the ME charities, with trustees in position considerably over the 9 year time limit established by the charity commission. We need to engage new trustees who can bring skills and good practice from other sectors, and identify new opportunities.

There is a whole lot more that can be talked about, but we wanted to concentrate on some issues, rather than discuss everything.
But the core message is simple: To drive change, our priorities should be fundraising, fundraising, fundraising.

 

Thanks for this Peter and for the effort you are going to here and on other platforms.

I guess the conundrum with it all is how likely is any of this change within the confines of the existing charities/governance?

How do we achieve the necessary change? Is there genuine appetite for change within?

It is as though we need a new ‘challenger’ charity with the sole purpose of shaking up the whole thing or, one/two of the existing to take a leap of faith, hopefully with the support of the ME community, to do something revolutionary, leaving the stick in the mud org(s) to whither or get on board. Likelihood of any change scenario..?

 

Just want to chime in that this is because of authoritativeness, and not really possible for us to improve. The way Web search works is through network credibility.

A Parkinson's website will be highly visible because other credible websites, like the NHS and many more, will link to them, "lending" them credibility and authority. Meanwhile ME charities websites are almost never linked to by authoritative websites, because the illness is discriminated, and mainly only from non-authoritative websites like social media, which actually lowers their authoritative rating. There is no amount of search engine optimization that can make up for that. Shitty websites like neurosymptoms are 100x more authoritative than all the ME charities in the world combined because of this. In the end, might always makes right.

I have zero doubt that if we weren't explicitly discriminated against, we would have zero problem raising funds and doing the necessary research in collaboration with world-leading experts that would put to shame everything done "officially". Other diseases have overcome some level of stigma, but they were not disbelieved to begin with. Pretty much the only exception is AIDS, and that took a level of political activism that we will never be able to manage, as it worked through a tightly knit community filled with healthy allies. And probably mostly because until the cause was identified, the entire population, and especially health care workers, were at risk. Most people only care about problems that do or may affect them, and even though it's true with us, they don't understand it and once it happens to them it's too late, then if they recover they almost all never look back.

Seeing how Long Covid advocacy has pretty much died down in just 4 years, isn't doing any better than we ever did, I don't think we can realistically do any better than what we are doing. All we can really do is keep at it the best we can until some day a breakthrough will shatter the capstone entombing us. There is really only so much people can do when they are cast out and open discrimination is systemic, framed as good. I don't think there are comparable situations where any group has overcome this much bad will without being overcome by events, by external forces no one could have predicted or made to happen.

Sorry to sound negative, but on the other hand, I think that we are shooting way above our weight class, and so has the LC community, and that's still admirable. Keep this in mind, loosely paraphrased from Picard: you can do everything right and still fail, that's not failure, it's just life.