mfairma
Senior Member
- Messages
- 205
Fundraise if you want to make a difference, even if its hard to raise money when no one cares. Our advocates are incrementalists and you'll need superhuman patience to spend your energy that way.
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The Real Problem With Chronic Fatigue Syndrome (ME/CFS) Funding: blog by Cort Johnson
- Thread starter AndyPR
- Start date
I'm aware of a lot of efforts to create pressure of various sorts in the UK over the last 15 years or so.
- Action for ME ran a 1% campaign, calling for £35 million per year to be spent on ME research, 1% of the total cost per year of the illness. I remember they had a launch on one of the London bridges with a big banner and 200 people. This was the second attempt to launch it: they didn't get enough people they felt at the first event. I can't remember the details of the campaign but I think it involved writing to your MP's and possibly also writing to the media.
- There were annual protests in and around May 12 from around 2003 to 2007-8. Then there was the all fall down protest in 2013 (?) when I think 96 people attended and the MillionsMissing protests.
- There was the "Inquiry into the status of CFS / M.E. and research into causes and treatment", sometimes called the Gibson Inquiry, run by a group of parliamentarians. People could make written submissions (I spent days on mine) and then there were also oral presentations.
- There have been lots of petitions
- Paul Humm (?) ran a campaign called Research in ME (RiME) where he was looking for biomedical research. He sent out dozens of newsletters with updates on what he was doing and encouraging people to do their own lobbying
-I can't remember the details but I'm pretty sure the issue has been brought up on a number of occasions in All-Party Parliamentary Group which existed continuously until the last few months. It may also have been discussed by the Forward ME Group headed by the Counters of Mar.
-There were various Parliamentary questions over the years.
- Then various charities have also complained in their own ways about the lack of biomedical research.
The system is also not the same as the US. The US budget is so big that they have annual breakdowns for the different illnesses. That doesn't happen in the UK or most other countries as far as I know. Politicians in the UK and most other countries also are not supposed to really get involved as much as in the US.
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Following on from earlier comments, just to say that I have seen various sorts of fundraising for research work in Ireland.
For example, my family organised a golf classic where two thirds of the proceeds were for research. The cost was relatively dear (£500 per team of 4 in 1997) but companies were happy to cover it. The previous year there was also a golf classic though there was no research fund when it was initially planned so the proceeds didn't go for research.
My three siblings and mother have done lots of successful street collections "selling" blue ribbons for ME awareness and research.
Fundraising from the public can be done. You don't need everyone to support fundraising initiatives for them to be successful.
Fundraising also gives the opportunity to raise awareness and discuss the issue.
I have also seen fundraising involving companies being done in the UK (though not always for research, which is okay). And when there was the big fundraising campaign in Norway there was all sorts of fundraising big and small.
I don't accept any suggestion that fundraising won't work.
For example, my family organised a golf classic where two thirds of the proceeds were for research. The cost was relatively dear (£500 per team of 4 in 1997) but companies were happy to cover it. The previous year there was also a golf classic though there was no research fund when it was initially planned so the proceeds didn't go for research.
My three siblings and mother have done lots of successful street collections "selling" blue ribbons for ME awareness and research.
Fundraising from the public can be done. You don't need everyone to support fundraising initiatives for them to be successful.
Fundraising also gives the opportunity to raise awareness and discuss the issue.
I have also seen fundraising involving companies being done in the UK (though not always for research, which is okay). And when there was the big fundraising campaign in Norway there was all sorts of fundraising big and small.
I don't accept any suggestion that fundraising won't work.
Cinders66
Senior Member
- Messages
- 494
I do not think fundraising won't work at all or is not worth doing, it is and is a vital aspect of pumping in money for all causes. It raises awareness too and if you can get through to family, colleagues and friends that you have serious, chronic , worthy illness then it's great. Reaching the average public is harder and I do think the amount we can fundraise due to stigma/name /narrative is less than other illness and this is why the state shouldn't be just making up for the £1m /year or two years on average we should have had over the years if they'd been fair but actually going further with RFAs, because it's the medical profession that have handled things Badly so that average public joe will donate to MS over supposedly time or exercise cured CF(S) and I don't blame them. In USA it might be easier as press coverage is better, they have IOM report recognised and the BPS wing isn't hard lobbying for CBT model
Regarding the previous uk efforts to exert pressure on state funders and larger funders,what seems lacking generally is a United front. In USA esteemed researchers, the main charity and a patient activism group were all on the same page, calling for the same things at well organised millions missing demonstrations United. We don't have that in uk and the cynic in me is uncertain that what AFMEyears ago did wasn't just a grand gesture they expected to fail as they excel in getting nowhere? Even if it wasn't, they're just an establishment facilitator now and wouldn't dream of lobbing for increased funding. We have fragmented voices, the main charities don't ask /lobby for more money or ask their members to in the form of a campaign, few MPs attended the APPGs and it's now folded , individuals and petitions etc are easy to ignore and the uk millions missing protests had vaguer aims it seems to me, even they weren't a united front of activism, I doubt the charities publicised them in the magazines before hand, but awareness events without specific demands that were followed up on.
What happened after the Gibson inquiry? Was it used to lobby? It's recommendations to MRC were ignored, and if independent parliamentarians thought MRC should be giving us large sums extra cash I don't think it is unreasonable.
I want maximum funds going into our illness with urgency due to the suffering of the more severe, I think this should be in the form of RFAs from the state like Norway did and as much private fundraising/encouraging of philanthropy as possible
I'm glad you've had success in your family with fundraising @Dolphin and thanks for your efforts. I hope we see as much as possible of innovative things. IiME had a bit of a wave of innovation going on in the early days of rituximab fundraising and I think that shows raising money for specific targets and causes is most effective
Regarding the previous uk efforts to exert pressure on state funders and larger funders,what seems lacking generally is a United front. In USA esteemed researchers, the main charity and a patient activism group were all on the same page, calling for the same things at well organised millions missing demonstrations United. We don't have that in uk and the cynic in me is uncertain that what AFMEyears ago did wasn't just a grand gesture they expected to fail as they excel in getting nowhere? Even if it wasn't, they're just an establishment facilitator now and wouldn't dream of lobbing for increased funding. We have fragmented voices, the main charities don't ask /lobby for more money or ask their members to in the form of a campaign, few MPs attended the APPGs and it's now folded , individuals and petitions etc are easy to ignore and the uk millions missing protests had vaguer aims it seems to me, even they weren't a united front of activism, I doubt the charities publicised them in the magazines before hand, but awareness events without specific demands that were followed up on.
What happened after the Gibson inquiry? Was it used to lobby? It's recommendations to MRC were ignored, and if independent parliamentarians thought MRC should be giving us large sums extra cash I don't think it is unreasonable.
I want maximum funds going into our illness with urgency due to the suffering of the more severe, I think this should be in the form of RFAs from the state like Norway did and as much private fundraising/encouraging of philanthropy as possible
I'm glad you've had success in your family with fundraising @Dolphin and thanks for your efforts. I hope we see as much as possible of innovative things. IiME had a bit of a wave of innovation going on in the early days of rituximab fundraising and I think that shows raising money for specific targets and causes is most effective
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