Donate to the £55k fundraiser for a UK #MEAction organiser!

I think that intellectually it's best for us to be honest and aware of how much uncertainty there is around ME/CFS, but the problem is that it's difficult to motivate people to campaign on 'uncertainty', which can push advocacy groups to take positions which are then difficult to defend.

If we just have a tiny number of patients who are wrongly certain about something, and outraged by the justified of uncertainty of others, that can make successful advocacy much more difficult.

I think that us humans can like to imagine we know more than we do, and fall into flitting between different unsupported beliefs rather than accepting how ignorant we are, and that might be one reason why many in medicine like the way PACE provided them with things they could confidently assert were 'evidence based' treatments.

Maybe we could try to convert widespread patient concerns about PACE to a movement that pushed for greater honesty about medical ignorance and uncertainty? Such an approach would have to be carefully done to ensure it was not something that could be co-opted by Wessely & co.

Actually, I doubt it would work.

IMO: hammering PACE and all the problems around it is still the area of advocacy likely to do the most good. Try to use that to push for wider reforms in how UK science and medicine engages with evidence, patients, and external critics - hopfully that will lead to improvements in the long-run.

Sunshine3 said:
One life lost is one too many.
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I guess that politicians will often have to make decisions which lead to peoples death in one way or another. Rare examples of deaths aren't normally enough to change policy unless there's a really quick and easy fix. It could still be worth mentioning an example of the most extreme cases.

Dolphin said:
I think the criticisms were more focused on the international consensus criteria for ME (Carruthers et al., 2011) than the Canadian consensus criteria (Carruthers et al. 2003) but same point applies.
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Thanks - oops.
 
Trish said:
If there is political will the government can fund whatever they like. For example they recently announced several million extra for brain cancer research after a prominent former MP died of a brain tumour.
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Good point Trish,

Do we know the method that this trickles down into brain cancer research from the Govt?

(and a p.s. to my original post

I think it would be easier to raise funds for a MEAction UK organiser if we knew of a clear plan of action that had an end result in one campaigning area which was feasible - then people would see something they wanted and would happily pay for it)
 
I think it’s far from certain that lobbying any time soon would lead to ring-fenced funding in the U.K. There are hundreds of major conditions and thousands of rarer ones and most don’t have ring-fenced funding. So I don’t think our eggs should all be put in that basket. So I dislike a strategy to discourage people to donate to research, particularly any that suggests such money will never make a difference.

If one thinks of all the 100,000+ patients who have hundreds of thousands of close relatives, the percentage of their disposable income that goes to research is tiny.

Any suggestion that it is governments' responsibility to fund all research, and the community itself should wash its hands of feeling responsibility to fund research, is a dangerous idea and I think should not be promoted.
 
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Dolphin said:
I dislike a strategy to discourage people to donate to research, particularly any that suggests such money will never make a difference.
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*We definitely don’t have a strategy to discourage people from donating to research*. This is slightly out of context from a discussion that #MEAction volunteers were having between ourselves about this:

"The results reveal a strong relationship between advocacy and funding changes… with each $1,000 spent on lobbying associated with a $25,000 increase in research funds the following year.” (http://journals.sagepub.com/doi/full/10.1177/0003122412458509) “

*We need equivalent figures for UK*
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There are reasons to believe this may not be as great an effect in UK but there probably is a similar phenomena in every country with an elected government. I wonder if anyone could find UK evidence on this? So far we’ve drawn a blank.

So the strategy we were discussing was how to communicate that donating to advocacy isn’t separate from donating to research. If the end result you want is more research, one strand of getting that is to donate to advocacy orgs, who then lobby government and relevant bodies for more research.

One of the MPs recently said when asking for the debate that ME has a PR problem. That probably won’t suddenly transform without an advocacy org putting in the legwork. People like Sarah Reed (#MEAction volunteer) have been putting in a lot of behind the scenes effort into parliamentary stuff. We really need a full time paid worker who can coordinate everything and have a sense of strategy.

Esther12 said:
I think that we might benefit from spending more time really arguing amongst ourselves
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Are you sure?! :rofl:

Esther12 said:
If we just have a tiny number of patients who are wrongly certain about something, and outraged by the justified of uncertainty of others, that can make successful advocacy much more difficult.
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Yes this can be a big problem especially somewhere like Twitter. The great thing about Twitter is everyone can express their opinions. The worst thing about Twitter is everyone can express their opinions;)
 
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To me, advocacy broadens the amount of people who become interested in the illness. That in turn leads to more funding down the line. It’s possible that this leads to a much more significant uptick in research funds down the line, but I don’t really have anything to substantiate that, it’s just a hunch.
 
Jenny TipsforME said:
One of the MPs recently said when asking for the debate that ME has a PR problem.
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I would agree with that.
The problem was not of our own creating and it doesn't help when we have to go up against the machine of the SMC.

Has any thought been put into hiring a PR agency ? Now that the SMC seems to have got the boot form CMRC maybe there is an opportunity to get a different message out.

I think we have to forget about twitter because there are too many individuals only interested in getting their point across, whether it's definitions, classifications, symptoms, virus theories...whatever, there is no structured approach so it's pointless to try.
It's also probably pointless to complain about it because that is twitter.

I am all for more funding for advocacy but I think it would help to understand tangible goals and results.
 
Just wondering, is there a reason there is a specific fundraiser for a UK organiser?

Could this not be funded from a central MEAction fund or a general fundraiser?

The reason I ask is, it is likely only UK patients will donate to this, yet from what I gather the UK already is on a par with the US in terms of general contributions or donations.
(I base this on comments by Jen relating to the Unrest campaign )

Even if I have misunderstood this,
Would it be better to have one general fundraiser with details of how the money is spent ?
 
From the link
A few weeks ago, we launched an Indiegogo campaign to provide general support for the global #MEAction network. In it I said that, if we exceeded our goal, we would fundraise to hire a full-time organiser in the UK. But with the momentum you created, it’s clear that we can’t wait. We need to seize on this opportunity. To that end, we’re launching this second crowdfunding campaign expressly to hire a UK-based organiser. That person would be tasked with the following:
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it might answer your questions?
 
Dr Carrot said:
To me, advocacy broadens the amount of people who become interested in the illness. That in turn leads to more funding down the line. It’s possible that this leads to a much more significant uptick in research funds down the line, but I don’t really have anything to substantiate that, it’s just a hunch.
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yes I think Ive mentioned elsewhere I think there's some lessons to be learned from Dementia. Dementia was an embarrassing topic that got swept under the carpet until a few years ago. Now its not on the level of cancer but there are big funding annual events called Memory Walks there are have been lot of celebrities coming forward and sharing their experience in their family of dementia. there is also proactive support for people with Dementia and carers through Memory Cafes, Singing for the Brain groups. There was also a big government supported awareness campaign called Dementia Friends that did short awareness sessions for the public with 5 key messages notably that dementia is caused by diseases of the brain.
More people (largely prompted by concerned relatives) are seeking diagnosis and support. Dementia is being recorded as a cause of death. And it is being recognised as a very big issue due to the number of people affected.

Some of the issues that I think are currently mitigating against raising large amounts of funds for ME research are:
- people not being aware of ME and as a result not seeking a diagnosis
- doctors not diagnosing people even when they present with symptoms - I had a dr tell me when I specifically raised CFS as a possibility "we dont like to give people that diagnosis it is better to treat the symptoms" classic MUS approach - if you're not diagnosed you're unlikely to know about or want to raise money for the illness
- if people are referred anywhere by a GP it is going to be a CFS clinic or IAPT - certainly CFS clinics discourage people engaging with charities
- if people go on line for private "treatment" they are going to end up with people who arent looking to encourage people to donate to charities (other than their own foundations - this seems to be the "optimum" model for private practitioners to have the charity alongside that gets money for "research" into their particular approach)
- if people do go on line it could be local facebook groups which seem patchy, ranging from small local charities which are looking for fundraising to go into their activities, to informal chat/information groups. They may or may not find out about biomedical research activities through these organisations
- of the "big" charities AFME has the most resources for fundraising activity and of the funds raised gives a very small amount to biomedical research - this needs to be challenged at every opportunity, people with ME who are still connected in any way with AFME need to be pressurising them

I think advocacy work is critical to keep pushing for step changes in awareness, and for action by the political and medical establishment, to get people diagnosed and to change the status quo on management of ME. We need to create a situation where people are dealt with as they would be with other illnesses - signposted by GPs and hospital staff to local support groups, and fundraising for ME research is normal raising a few million quid every year - as with Arthritis or MS. I would love to see us get to a position where NHS staff get involved in fundraising as they do for cancer and other illnesses.

ETA I forgot of course as well as no diagnosis there's misdiagnosis, Fibro and CFS being used interchangeably by some Drs, possibly tending towards a Fibro diagnosis as they see it as less of a "wastebasket", and FND - I didnt realise how widespread this is there is a facebook group with 5000 likes and a charity with US, UK and Australian arms.
 
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Thankfully it's ticking along though.

Jenny's reference above (the $1K leads to $25K number) is really powerful, and I hope that persuades a few more people to donate.
 
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