Protests & petitions shouldn't be only activism tools. Fundraising for biomedical research important

It has been great to see the #MillionsMissing protests. But I fear they could continue indefinitely without other activism tools being used.

I think fundraising for ME/CFS research is important and it doesn't seem to be done much outside the UK and to an extent the US. Governments outside the US don't have huge research budgets. I think people can feel that because there is a public health system with governments in charge of providing healthcare, that they are also responsible for doing whatever medical research is necessary.

However individual countries' research budgets usually aren't huge when one considers the large number of conditions that are out there (maybe a couple of hundred more major ones and many thousands of rarer ones). Progress will be a lot slower if one depends on state funding for research outside the US (the US is a different situation where the research budget is much, much bigger and government funding can lead to substantial programs for illnesses. Also politicians in the US are much more involved with what gets funded rather than the situation a lot of countries where politicians don't have too much influence on the amount given to individual illnesses).

Generally you also need a pool of researchers to be making applications to get funding. Private money ensures that can be such a pool of interested researchers who can make such funding applications. Also researchers often need pilot data showing their hypotheses are worth looking into: private money can help ensure this happens.

There are millions (17 million?) affected by this illness, which means that there are tens of millions of people with family members with the illness. Not all of these are diagnosed and some will be in underdeveloped countries but there is potential for a lot more to be raised privately. The UK is probably a good example of the different sorts of fundraising for research that can happen. I don't see much fundraising for research in a lot of countries.

Petitions can be useful to show a certain number of people hold certain points of view. But, especially in the Internet age, there can be an awful lot of petitions so many have little influence.

Government funding can also sometimes go to studies that are problematic e.g. biopsychosocial ones. Private money raised by the ME/CFS community usually goes to safer research that is unlikely to cause problems for patients. I can imagine CBT/GET proponents hate seeing private money being raised which they know could lead to things which challenge their flawed models of illness.

So I would like to make a plea for more fundraising for biomedical research.
Likes: TiredSam


What can you do to help?

By Robert McMullen

Whether you are unwell, know someone who is unwell or have just read about ME and would like to help, here are some simple suggestions about how you can help:


Do something to raise money for biomedical ME Research, or persuade someone you know to do something. A friend of mine recently told me he was running a marathon. I asked him if he would consider running it for ME Research UK and he raised more than £1,500. If I hadn't asked he probably wouldn't have thought of it.

I once calculated:

Okay, let's say that of the approximately 20 million worldwide who have ME...

And the 20% who have a diagnosis... (4 million, now...)

We all donated $1.25 to research.

We would double the NIH's funding, and we would consider it money well spent!

But let's be realistic and assume that we reach about 1% of these people (which is optimistic!)

Now we're down to 40,000 people.

Let's assume those people each donate $20. That's nearly $1 million US for research. We can all only donate $10? Okay well, nearly half a million is enough to do a single, robust study, right?

Let's say we do that every year.... or twice a year.... most people I know could donate $10 twice a year!

If we agreed to donate once a year, or have a rallying fundraiser maybe in the spring and the fall each year, we really might be able to do it. I wonder why more aren't involved. I have donated $10 to research several times this year.


* They are in financial peril and cannot let go of that $10 -- a genuine concern in a patient community with so many who are disabled.
* THEY DON'T KNOW IT'S HAPPENING. So much of fundraising is outreach. How many people see that you are doing something? How many are informed what it would mean to us?
And then there's the perspective stuff:

* They feel hopeless. It's pouring money down the drain. No one has figured this disease out, and no one ever will.
* They have some antipathy towards the organization raising money for research.
* They only want to give money if they can guarantee beforehand where it goes. Logically, it doesn't always work out that you have someone submit a research proposal on the off chance you can raise money to fund it! It works the other way around.
* They don't identify with advocacy or with research: they don't like thinking of their illness, or they consider it someone else's job to have the money and fork it over. (Er, it IS, but they're not DOING their job so....)

I would have sworn some of these categories didn't exist, but now I know someone else with ME/CFS who literally asked me if I wouldn't feel better if I just ignored that I was sick. Someone like that isn't donating to research -- they are spending energy trying not to think about their disease.

If we can find a way of addressing each of the issues and perspectives effectively, we will generate a lot more funding for research into ME.

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