Fundraising for ME/CFS research - opportunities, problems

Why do you +/or your family donate and/or fundraise for research?

I thought it might be useful to have a thread where people could post on this issue.

Edited to add: if you plan to leave a bequest, that counts also.

 

There is also the following thread in the members' only section

Why don't more in our community donate to ME research? https://www.s4me.info/threads/why-dont-more-in-our-community-donate-to-me-research.8724/

 

Thank you @Dolphin for posting this question.

Hope it's OK to "Like" the fact you posted the above thread.

I/we donate because governments have done, and continue to do zero to very little for ME. Granted, the picture looks a little rosier, but it's much less than commensurate with prevalence, severity, and disease burden.

Fixing ME seems to be a partly (mostly?) do-it-yourself endeavour. The ME community has done the bulk of the research funding for decades. Without this, we wouldn't have much in the way of the biomedical evidence we do have. We have also had to be our own doctors, and despite being so ill, our own advocates, and PR personnel.


I give to the OMF - not much, but on a monthly basis. I also donate to a few other ME causes, and groups.

It's all one ball of wax - without awareness, community members and others may not realize what's going on: the lack of government funding for biomedical research.

And, without research the community and others may not be aware of the severity and dire situation and needs of this community.

Also with research results, medical education may eventually increase. ( I hope!)


Many years ago I thought governments were funding real research - I received a 1991 letter to this effect from the NIH.

I also received info from the Canadian government outlining studies, and assumed Canada was also working on biomedical research.

In both cases the info I received was mostly hype.

 

I donate to a few different ME research and advocacy groups.

Why? I guess the reason I give is selfish. I want to find a biomarker and effective treatments (as opposed to resting/pacing/coping with the symptoms). Maybe one day there will even be a way to prevent or cure ME.

My donations may not be much but I figure every little bit helps.

 

I have donated a bit but my contribution is mainly from participating in ME/CFS studies. I go out of my way to try and do as many as I can. In the hope it will help us all one day.

 

Initially I donated to help myself, then I'm afraid I became more cynical about the chance of a meaningful advance in science in my lifetime. But that just meant that I became focused on wanting to ensure that as few people as possible had their lives limited in the same way that has happened with me - not that I haven't had a reasonable life compared to many others but, as much as I can be, I'm sure my life could have been more than it has been.

I make donations to multiple groups, with the reasoning that I believe we need many groups working for us. And, with the intention of helping the "cause", I also do what I personally can.

 

When money was a lot tighter, an easy option was to shop online through a link where a small percentage or fee is donated to the charity.....I was buying essential items and still trying to fundraise too. Also recycled ink cartridges, used stamps, can be sent to addresses and donations are made to charity. Some of the UK M.E. charities do this.

I have also donated to all of the main charities in the U.K., like @Andy , trying to ensure different studies are funded in the hope that research finds some answers. These have been one off small donations to fundraisers and, as he is a “local friend”, a bit more often, to @Mike Harley ’s EU Marathons for Invest in ME Research.

My regular contribution is to donate a tiny, monthly amount to UK ME/CFS Biobank, in addition to being a participant on one of their studies.

If we can all donate a tiny amount, that would all add up.

 

I felt guilty, my first 2-3 years ill, donating to ME research and asking friends and family to do the same as it seemed selfish, like asking for myself, then as I learned more about it, I thought of all the youngsters with it facing decades of suffering and now point this out when I ask for donations for ME Research or raise awareness.

 

I donate monthly to OMF. My friend recently did a sponsored cycle and raised a decent amount for UK ME/CFS biobank.
I do all I can not just for myself, obviously id love a treatment or cure to save me before it's too late. But I also strongly believe in the cause. It breaks my heart to see teenagers with ME. I think we should all do what we can, whatever that may be. Plus I worry that my children or grandchildren might ever get this horrible illness so I feel I've to do what I can for them.

 

If anyone wants to share reasons on Twitter or Facebook, here are a couple of links. Comments could be put underneath or one could retweet with comment/share with comment.

https://twitter.com/user/status/1162000202577928192

 

I donate for: myself; for the many people and families I have got to know with it; also as it causes a huge amount of suffering in both developed & developing countries worldwide especially when there is no diagnostic test so people aren’t believed.

https://twitter.com/user/status/1162312013688782848

 

Okay, well another reason is that I realised that governments don't pay for all the necessary research.

When one divides up research budgets between hundreds of major conditions and thousands of less common conditions (which can still sometimes be fatal), a fair amount for ME/CFS is still relatively small (an exception is in the US where the research budget is large). And to access government funding, you need a pool of researchers who are interested and ideally have pilot data. This will generally require money that is raised privately.

I could save all my money for a rainy day. Indeed, in a lot of areas of my life, I am quite frugal. But like many people, I like to spend money on things that give me some happiness, hope, etc.: I don't simply spend all my money on the bare essentials and save the rest and I think many if not most people are the same. Though certainly people have different amounts of discretionary spending.

So donating gives me hope for the future that things can improve for me and the millions affected worldwide. Without hope, my mood might drop. Hope probably prevents some suicides.

Similarly, not all my time in energy is required for the bare essentials. I have some free time, like many people. Again, different people have different amounts of free time and energy. It gives me satisfaction at the end of the year when I feel I have something to show from my activism, such as being involved in fundraising for research, which I wouldn't get if I just use all my free time on hobbies, reading, watching TV, etc.

 

I agree!

I would hope that this thread provides inspiration (even small donations help), and hope (many small donations can add up and may lead to a breakthrough), but never guilt or pressure over not being able to donate money.

I feel quite lucky that my financial situation has always been okay because my husband was able to earn enough for both of us. I know that many ME patients are not so lucky.

 

Donations may or may not help me but it should mean that one day new cases will diminish or at least be quickly diagnosed and treated so this ceases to be such a devastating illness.
For those that can’t afford to donate you can still raise funds for the cause by using things like amazon smile, or www.igive.com whenever you shop online. With Igive.com you don’t even have to shop, just do 4-5 searches on the site every day and it will add up over time especially if everyone was to use these methods.

 

My housing cost account for over 46% of my income. And i had to pay 900$ as my share for condo roof repairs this year which set me back. If I were to rent in the same area, i could not afford my rent.

There is no vacation for me. I have a 13 year old car which thankfully is mechanically sound right now (knock on wood). I will have to scrape money for some desperately needed clothes and shoes for winter. i haven’t had a hair cut in over 8 months now and lots of grey is now showing.

Cost of living continually increases here, and the disability benefits remain the same. It means that each year i get poorer.

I certainly advocate for research, have donated when i could in the past. I contributed to David Tuller’s fundraising to continue his important work on PACE and related business which is most important.

Considering my personal situation i am not able to give for research right now. I bet many are in the same if not worse financial situation. Considering that the disability rate is very high for our patient population and that disability benefits present challenges in obtaining and sometimes maintaining, let alone covering the bare minimum expenses, we cannot expect or be expected to raise millions. I have a small change jar. And when i do reach in it, it’s to pay my own bills (and my outstanding line of credit).

By all means, if you are comfortably wealthy, please donate.

 

I would point out that some of us have little else to spend our spare few Bob on... That's my situation so I donate as it gives me hope too. We are too ill to eat out, go on vacation, go anywhere.. I'm certainly not suggesting in my other post that people should donate if they can't afford to. I'm grateful my husband works and we have our own home. I certainly wouldn't donate if I had nothing to spare. There are so many other ways of helping as simply as liking a supportive tweet, emailing MPs etc...

 

Yes, I'm the same to an extent.
For example, I have bought one pair of shoes in the last 25 years. I live a solitary life so I'm not too focused on my appearance.

Having dealt of with thousands of people with the condition, I accept that some can really be financially struggling.
I don't accept that means that we should decide that the community can't raise much money for research through donations and/or fundraising. I don't see a largely one-dimensional strategy of lobbying without there being many researchers with pilot data as being the best strategy.

 

Really appreciate your continued support Linda (and everyone else on here).

 

A new blog post from me, for what it is worth