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

Sasha

Sasha

Senior Member (Voting Rights)
(This new thread arises from discussions on a couple of other threads - it seemed like a good idea to have a new thread on the 'how' and 'why' to support this very important call for donations.)

#MEAction want to hire a UK-based, full-time organiser for its UK advocacy, campaigns and medical outreach. They're looking for £55,000 for a year's salary, taxes, travel, expenses and other costs.

The call comes in the wake of this May's #MillionsMissing campaign, which has grown in just two years from actions in 12 cities to more than 300 around the world - including more than two dozen in the UK in 2018.

Jen Brea (@JenB) writes:

"...what we are finding here in the US – and the only way we were able to scale #MillionsMissing 2018 to 300 actions – is how much more impact we can have with full-time staff to support and coordinate the efforts of local organisers, build common resources and toolkits, and take a long-term, strategic view."​

On another thread, she writes:

"Last year, we [#MEAction] didn't work on #MillionsMissing (because we didn't have the staff capacity) and there were 17 events. This year there were 300+ (100 in person). The difference? Our full-time team... And yet, it is ALSO true that this wouldn't be possible without the work of thousands of people."​

So it's a question of full-time workers being able to amplify the work of huge numbers of volunteers and know how much we need that in the UK. Jen recorded a speech (here on YouTube, transcript here) for the Los Angeles #MillionsMissing event, but which she said applied worldwide, in which she said, "Today it is time to move beyond awareness. Now comes the hard, step-by-step, brick-by-brick, hand-to-hand work of taking action."

So let's get that UK organiser funded! The faster we give, the sooner we get them.

Details of how to donate in the next post.
 
The donation link to fund the UK organiser is here: https://www.meaction.net/grow-our-uk-team/

Gift Aid

If you pay tax in the UK, you can gift-aid your donation and it will be worth an extra 25p for every £1 you give, at no extra cost to you. #MEAction isn't set up as a charity in the UK but I believe they have an arrangement with a UK charity to accept your gift-aided donation and pass it back to #MEAction. If you're interested in doing that, first email info@meaction.net and ask how to do it. But if it will bog you down, just crack on and donate! :)


To donate

1. When you're ready to donate, follow the donation link and choose the amount you want to give. (You can opt in to making a comment and having your donation and comment displayed on the 'donor wall'.) Click the big blue Next button.

2. Fill in your name and email address. (You can check a box if you want to be on the newsletter mailing list.) Click the big blue Next Button.

3. The screen allows you to pay by credit card or PayPal.

I donated last week and it's very quick and easy.
 
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The biggest barrier to people donating to this fundraiser is the view that they'd rather donate directly to funding research than funding a person's salary. ME Action are trying to get some UK based figures to show how £1 for advocacy leads to £x of research funding, compared to £1 for research which is £1 for research.

We need to find a way of getting that thought process out there and helping people to realise the true benefit of advocacy/ activism. It's great that charities are funding research but they shouldn't be bearing the responsibility of doing it all themselves. By funding £55k for an experienced person to co-ordinate all the volunteers and drive new initiatives, it can lead to making the UK government step up to its responsibilities to fund research at a much bigger scale and then we're talking a return of £millions.
 
chicaguapa said:
The biggest barrier to people donating to this fundraiser is the view that they'd rather donate directly to funding research than funding a person's salary. ME Action are trying to get some UK based figures to show how £1 for advocacy leads to £x of research funding, compared to £1 for research which is £1 for research.

We need to find a way of getting that thought process out there and helping people to realise the true benefit of advocacy/ activism. It's great that charities are funding research but they shouldn't be bearing the responsibility of doing it all themselves. By funding £55k for an experienced person to co-ordinate all the volunteers and drive new initiatives, it can lead to making the UK government step up to its responsibilities to fund research at a much bigger scale and then we're talking a return of £millions.
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It's a Sisyphean task trying to crowdfund biomedical research. Governments can afford the studies much more easily. It's better to shame/educate politicians into acting than slowly trying to self-fund research over the next 30 years...
 
chicaguapa said:
The biggest barrier to people donating to this fundraiser is the view that they'd rather donate directly to funding research than funding a person's salary. ME Action are trying to get some UK based figures to show how £1 for advocacy leads to £x of research funding, compared to £1 for research which is £1 for research.

We need to find a way of getting that thought process out there and helping people to realise the true benefit of advocacy/ activism. It's great that charities are funding research but they shouldn't be bearing the responsibility of doing it all themselves. By funding £55k for an experienced person to co-ordinate all the volunteers and drive new initiatives, it can lead to making the UK government step up to its responsibilities to fund research at a much bigger scale and then we're talking a return of £millions.
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Completely agree with this. I've recently decided to divert the majority of my future donations from research to supporting various advocacy efforts.
 
I would say there’s room for both
We need to keep research happening which the charities working on biomedical research have been doing on the this is what it should be leading by example basis

However we also need the advocacy efforts to make a big enough impact to leverage the government funding.

As Chris Ponting has said there is currently a window of opportunity where the advocacy is beginning to impact and the volunteers need professional support to maximise that impact

Based on what happened with Unrest in the U.K. where in my area there would never have been a screening without the professional team I think this is a good investment.

We need to leverage more money and that means influencing politicians and the public to make it impossible for the funders and medical establishment to ignore.

ME Action is uncompromisingly anti PACE and it would be a good thing to have professional input behind this stance.
 
chicaguapa said:
The biggest barrier to people donating to this fundraiser is the view that they'd rather donate directly to funding research than funding a person's salary.
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I'm not sure how true that is, and whether it is more that there are unrealistic expectations of how quickly the UK ME community on its own can raise £55,000 for an advocacy worker for a new organisation.

The last two research appeals in the UK I donated to were an ME Association Christmas appeal for a project to try to replicate the Naviaux metabolomics findings, which raised £50,000, and the UK Biobank Christmas appeal in 2017 which raised just £15,000. Both these were publicised on ME forums, facebook and to all its members by the MEA, and were for well respected established organisations to fund valuable research.

Also lots of people in the UK have just scraped the bottom of their piggy banks to help fund David Tuller, again, with his proven track record and working on specific projects that members value.

pwME in the UK are also donating all the time to all the other ME organisations, including Action for ME and the MEA who employ people to work on advocacy.

I think #MEActionUK need to be realistic about how long it will take to raise £55,000 from UK pwME, given the fact that the big ME organisations will not be likely to advertise the fundraiser to their members, so your ability to access large numbers of people is limited.

I don't say this to discourage you. I would love to see you being able to employ and advocacy worker, and intend to donate when I feel confident of what is being proposed, but there is a bit of a danger of the tone of the appeals being made starting to sound like we are being criticised for not giving enough to this appeal.
 
Trish said:
there is a bit of a danger of the tone of the appeals being made starting to sound like we are being criticised for not giving enough to this appeal.
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Noted. Though there's not been a sense of any criticism of that within MEAction. The biggest question we're asking is why people have chosen to donate to other charities instead which is a question all charities will ask themselves. Maybe it's as you say that they're waiting for more confidence in what is being proposed. But our sense was that people preferred to donate to something concrete like research rather than the concept of advocacy, so we're looking to address those concerns.

The response to Unrest was huge and probably led MEAction to feel the back up support was there in terms of donations. But it's a good point that other charities were promoting Unrest but will be unable to promote this fundraiser, so the audience is quite different in terms of numbers. But they observed that many people donated screening profits to another charity altogether and we need to question why that was. In my own case, I donated them to research and that was for the reasons stated above, so it's been helpful to have that hindsight.
 
The ME association had a page for people who wanted to do unrest screenings with tips and advice etc. One part was suggesting people contact the MEA fundraising officer for MEA fundraising material so they were profiting from the showings.

http://www.meassociation.org.uk/201...est-in-your-local-community-06-february-2018/

The fundraising team at the ME Association is here to help support your efforts – with information leaflets, donation boxes, and our iconic ‘It’s real, it’s physical’ t-shirts.

We can also give advice about online and text giving and gift aid, to help you make the most of your event. And we will help promote your event across our social media and include it in our website listing of local events.
 
chicaguapa said:
The biggest barrier to people donating to this fundraiser is the view that they'd rather donate directly to funding research than funding a person's salary. ME Action are trying to get some UK based figures to show how £1 for advocacy leads to £x of research funding, compared to £1 for research which is £1 for research.

We need to find a way of getting that thought process out there and helping people to realise the true benefit of advocacy/ activism. It's great that charities are funding research but they shouldn't be bearing the responsibility of doing it all themselves. By funding £55k for an experienced person to co-ordinate all the volunteers and drive new initiatives, it can lead to making the UK government step up to its responsibilities to fund research at a much bigger scale and then we're talking a return of £millions.
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I don't think working with AfME has helped either along with the disappointment on the briefing document.
 
Sunshine3 said:
I don't think working with AfME has helped either along with the disappointment on the briefing document.
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Maybe. But only if they let it. I think it would be more constructive to focus on what has been achieved and the fact that they had helped to secure a parliamentary debate in a couple of weeks, rather than any lingering disappointment over a document which had been produced by volunteers, many of them who have ME.
 
chicaguapa said:
Maybe. But only if they let it. I think it would be more constructive to focus on what has been achieved and the fact that they had helped to secure a parliamentary debate in a couple of weeks, rather than any lingering disappointment over a document which had been produced by volunteers, many of them who have ME.
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@chicaguapa 'But only if they let it'?! Gosh that is reminding me of cbt....i am not sick, I am not sick, repeat. There is huge disappointment across many forums with the document. That disappointment has been clearly expressed. M.E in it's severest form can kill, that should be stated in the document. I emailed Jen Brea and she agreed with me on that point a few days ago and said she would relay this to U.K team. The life of a precious 21 year old was lost to M.E in August 2017 in the U.K, Merryn Crofts. We owe it to her memory that the truth be told. We owe it to severe patients that this be told. Surely if we want biomedical funding, we should be telling MPs how severe M.E can get. So many lives have been lost.
 
There is so much uncertainty and controversy around ME/CFS that taking any position on lots of issues will end up annoying some people. As/if ME Action tries to do more it will end up disappointing more people. There's not much that all patients agree on. PACE is a rare example of a unifying issue.

I've seen people on social media complaining about ME Action not doing enough to endorse the Canadian Criteria and reject others, but I think some people have a misguided view of the value of the Canadian Criteria, partly as a result of problems with a lot of research which uses looser criteria.

In some ways, I think that we might benefit from spending more time really arguing amongst ourselves, and picking apart one another's arguments. Often we can avoid doing so just because the disagreements we have are usually less important that our shared interests, but this can allow myths the propagate and people to become entrenched in positions that make it more difficult to achieve real progress.

I've been impressed by ME Action so far, although I still disagree with some of the things they've done.
 
Sunshine3 said:
@chicaguapa 'But only if they let it'?! Gosh that is reminding me of cbt....i am not sick, I am not sick, repeat. There is huge disappointment across many forums with the document. That disappointment has been clearly expressed. M.E in it's severest form can kill, that should be stated in the document. I emailed Jen Brea and she agreed with me on that point a few days ago and said she would relay this to U.K team. The life of a precious 21 year old was lost to M.E in August 2017 in the U.K, Merryn Crofts. We owe it to her memory that the truth be told. We owe it to severe patients that this be told. Surely if we want biomedical funding, we should be telling MPs how severe M.E can get. So many lives have been lost.
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We've discussed the death thing at great length. The tricky thing is that we don't have concrete numbers, and even if we did, it's likely to be a very, very tiny number of cases that result in death, with many of those being suicide. Do we focus on extreme examples to make a point, or will that just make us look like we're exaggerating?

I've suggested Merryn go in, and Jen mentioned Sophia, but we'll see what happens. We need to come across as measured and clued up, which means sticking to the facts. We don't have strong enough data on death rates to make any blanket statements about mortality yet, so any statement on deaths has to be in context and not just thrown in as a superlative.
 
@adambeyoncelowe thank you for replying. There is no need to go into any detail. Simply say M.E in it's severest form can kill as evidenced by the death of Merryn Crofts in August 2017. Her life is a massive loss. It does not matter if we haven't a line of others that went before her. One life lost is one too many. I think we should honour her memory by including it. Her family will agree as I have been in contact with them 'Merryn's legacy' is their Facebook page. I can't think of one reason not to include it. It might wake MPs up to how serious this is. If asked how many die as a result of M.E, the answer is we simply don't know as it has never been tracked. We have been voiceless for so long. Gosh, if I had my way I'd have the MPs sit through Voices from the Shadows.
 
Esther12 said:
There is so much uncertainty and controversy around ME/CFS that taking any position on lots of issues will end up annoying some people. As/if ME Action tries to do more it will end up disappointing more people. There's not much that all patients agree on. PACE is a rare example of a unifying issue.

I've seen people on social media complaining about ME Action not doing enough to endorse the Canadian Criteria and reject others, but I think some people have a misguided view of the value of the Canadian Criteria, partly as a result of problems with a lot of research which uses looser criteria.

In some ways, I think that we might benefit from spending more time really arguing amongst ourselves, and picking apart one another's arguments. Often we can avoid doing so just because the disagreements we have are usually less important that our shared interests, but this can allow myths the propagate and people to become entrenched in positions that make it more difficult to achieve real progress.

I've been impressed by ME Action so far, although I still disagree with some of the things they've done.
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I think the criticisms were more focused on the international consensus criteria for ME (Carruthers et al., 2011) than the Canadian consensus criteria for ME/CFS (Carruthers et al. 2003) but same point applies.
 
I agree with sunshind3. The parameters of the ME spectrum are the minority who almost recover to the extent they can live symptom free to the minority who live terrible lives at the very severe end, with death even being possible and the whole range in between. The deaths aren't out of context , they're always the very severe so mention the very severe and the deaths in that context. If we remember the department of health spokeswoman "CFS/ME can leave people bedridden for weeks at a time", it's almost a duty to get across the potential severity and longevity , otherwise this is going to continue to be underestimated which affects everyone.
 
I'm not sure how forcing the UK government to step up is going to fund any new research? We keep getting told that they don't control the MRC.

Would be interested to here how MEActionUK thinks we can achieve this very worthwhile (and well worth funding) objective?
 
ukxmrv said:
I'm not sure how forcing the UK government to step up is going to fund any new research? We keep getting told that they don't control the MRC.
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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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