ME charity income versus other illness charities in the UK

which ones ? Cancer research obviously and it’s natural cancer can raise funds anyway, potentially terminal, common we are told etc. age uk would have shops, I wasn’t aware of the others but am long-term housebound...

 

This irks me too @Sunshine3. It also makes me more determined to post about ME on my personal fb page, and I do. Not that I get many likes. But I keep doing it despite this.
I ought to look harder at those posts that get an occasional like and replicate those.
But for me, I think it’s more that i’ve lost so much that I won’t lose my voice and be silenced.

 

British Heart Foundation and Scope have shops too.

 

Hope 4 ME Fibro uses a clothes bank ( big metal bins)to raise money. If there are 250 k patients in UK and they each gave £10 a year ,that would be £2.5 million. Twice as much as now.

 

But, for reasons I give above, using the full 250,000 figure for calculating what could/should be our expected level of donations is, in my opinion, pointless. If we are to do that exercise we probably need to use the 25% figure given for seriously affected, so approx 63k times by £10 give £630k, so arguably we are doing better than expected already.

 

It’s versus MS that I think is the most interesting comparison because of age affected and disability.

If half of pWME aren’t diagnosed that brings us to a population the size of MS. Is the issue that the NHS largely doesn’t direct and inform so higher function people plod on with CFS or an FND obliviously assuming they have an illness you just get better from and then either continue, get better , bye bye or enter in to the chronic and more severe state whereby you have to inform yourself, realise the truth but are now too sick to work.

If it’s mainly the more chronic and severe who are donating, can they give more and why don’t they and why don’t their families

I always assumed it was mainly newly Ill that the charities catered for so is there a fault with the charities efforts, are we just exceptionally low in membership , no more than 15,000 combined for the major two who fund research.


Is it greater recognition and respectability of MS that means they are raising and donating 30xs more than us , so they can draw from the general public as we can’t or is it that many with MS continue in full time work long after diagnosis so have money combined with the “threat “ of degeneration

I’m guessing the fact we haven’t really got off the starting block that’s uninspiring too, people don’t see great projects going on .... I must confess that I primarily donate abroad now too, but that’s after years of getting jaded. I used to donate a lot within the uk.

I would love to hear other ideas for turning round the fundraising situation, if we can’t turn it around then either the state does or we do as said, chip away. However as a long time severe the chip away option versus drastic change through revolution of forms isn’t palatable. I do think increased PR is probably worth it and #MEActiom probably the people to drive progrsss.

 

Oops! Missed your earlier post.

 

I help run a charity that has a research fund so see what comes in. We have a few dozen monthly standing orders. A lot are from the long-term sick, moderate to severely affected. A few are from people who are mildly affected who are working. And some are from parents and siblings of the moderate to severely affected. I think the latter are an interesting group as they often give bigger amounts. I believe if you get as many patients as possible enthused about research and raising money for it, they will start looking around for other sources of money so even if they don’t have much themselves, their wider network may bring in significant amounts.

 

Some of the issues I have, as someone who has been sick a long time now -

Initially, I had some real unpleasantness from people because of their perception of the illness. I was caught in a Catch 22 in that, because I now was diagnosed with it, I was no longer a credible witness. So I distanced myself from some people, some of them family members.

In addition, because I sacrificed all other activities in order to stay in work, I disappeared from people's lives.

So I don't really have people to call on when it comes to raising funds.

Hopefully, times are changing and attitudes along with them and that will make a difference to fundraising.

I think if we were to make an exception case to funding authorities it would need to be on the grounds that the stigmatisation fostered by BPS ideology and publicised without impunity was unfair and discriminatory. It has caused us, as a community, financial harm and impeded our own ability to fund raise as many of us effectively "disappeared" and the false image of patients created by BPSers meant that we were likely to be seen as an undeserving cause.

The ongoing misinformation trivializes the illness and it's impact on our lives. The public are left with the false impression that the condition only strikes those with certain personality traits.

I think the difference between us and other groups is the state endorsed misinformation and discrimination against us.

 

There is the possibility that uk charities have a lack of people to give funds to even if they had them. I don’t know if that’s been a factor in the past.

Equally I haven’t seen charities have a pool of money there and say we are open to researchers in various key areas which I think does work to bring in people even if people quite disinterested, researchers follow ideas and money. Even if they don’t have real CFS sympathy or interest , as we saw with the 2012 MRC grant, if they can combine their real research interest with CFS and get cash they might do it.

AFME might have been a barrier as they appeal to the newly ill, they did me but until recently have had low research focus plus a vague message on what CFS is and the hope available and alternative medicine. If we had just had the MEA (not that I’m a supporter now) I think people would be more wise up on the science and research side and less believing in positivity and reiki.

I agree with the above post that we have exceptional harm, caused by the medical profession themselves which makes it hard even within people we know to get support. I know my carers I had a few years back underneath thought I could get myself better, they are not on the streets outraged at the lack of medical help for ME. This is because of the narrative, the name and the way doctors approach us.

There’s multiple issues all feeding each other. I personally would like an inquiry or some type of encompassing meeting where all this is discussed with people at a higher level say MRC, DoH, NHS representatives, MPs importantly, GPs so that the big picture is recognized. Currently we have NICE saying it’s a tragedy there’s been no research developments, MRC saying they welcome research but blaming us for the lack of it, NHS failing with their chirpy CF narratives and exercise cures, DoH puttting out misleading investment figures, medical schools not teaching the illness properly because it’s supposedly MUS. It’s all connected.

 

Regarding MRC being reluctant to intervene and set a precedent. Well it did do so for HIV several years UNTIL it was felt the field could progrsss alone, one year for us, regardless of whether we could fly alone (NO) and for other conditions, even if that’s more umbrella stuff. However it wouldn’t hurt them to intervene for us, and because so Many other comparable, major illnesses are rAising funds successfully alone the only areas that really stood out as being comparably similar in lack of funds and research progrsss in U.K. was autism (but the USA had done $1 bs worth of biomedical research there) and sjogrens charities which seems to have capacity to grant only £300k to research each year suggesting quite low income. They obviously, with a 50,000 sized population, are a few times less in size than our population.

The point is if there’s a few other examples of conditions where for various reasons they cant raise much independently and advance the field , then let them lobby and call for funds too, not just say we can’t because they’re in a pickle and needy too. The MRC should be doing it’s duty yo it’s citizens and tax payers And my parents didn’t work all their lives paying in tax, taking very little out of the system only to have their daughter being left to languish whist we spend thousands ON HIV, thousands on the PreP drug I think to allow people not use protection but keep safe in sex, we are seeing MRC spending money from uk tax on diseases that do not even affect our country and yet my parents taxes are going on that and seeing their daughter just left with nothing.

 

https://www.youtube.com/watch?v=WXWJKotFuNE

I listened to this today and MRC was mentioned in reference to collaborating with Ron Tomkins... I don't have a good grasp of all that's going on but I assumed on listening to this MRC were going to collaborate which is good... whether that involves spending much money is another matter I suppose

 

I have no knowledge or and have heard no announcement on this so this is completely new to me. Is that right what he says that MRC have put a call out, is he suggesting that part of this research was in response to an MRC call out. Does anyone else from uk have any knowledge on this ?

Thanks for the link, an uplifting way to start a Sunday in bed

 

ah I see it’s those people from uk collaborating, which is great. A shame uk couldn’t get them involved but great America could. This was a recent OMf grant wasn’t it, so I think the funds is coming form them not MRC but it’s made to sound other? , I hadn’t seen this talk so thanks. However I thought the uk researcher connection with the MRC was incidental rather than the MRC turning or taking more interest but as so much is behind the scenes with MRC u turning on the quiet would not surprise me ?

It’s confusing from what he has said which implies MRC have turned around, wouldn’t the CMRC minutes have been trumpeting it if so?. He is saying that in that research the uk are putting up controls which USA won’t do, is that what he means by “normals”?

 

I think so normals as in controls. Maybe he is putting a very positive shine on it all but there is collaboration going on so that can only be a good thing

 

Yes that’s great, previously we have had so few high profile researchers interested over here. I’m really impressed by what Ron Davis is doung and hopefully that’s now three new UK Zscientists who don’t believe CFS is a beliefs and exercise issue. My query still is if it’s an MRC Promoted/involved thing though and if they have put up a call, because I thought we were still waiting on that.