Logged on this morning and listened to the first video clip on the site.
It is an appeal for £2 million + for research.
Fair enough, but last time I looked I seem to recall that the MS Society raised £29 million and only spent £4 million on research. I would have thought that research should be the number one priority of the Society.
Thoughts?
Hi Bonnie,
Like you, I see research as the No. 1 priority. If the breakthrough could be found that puts an end to this disease, ALL the other funding needs would become irrelevant. Not overnight, of course. Even if a 100% effective cure were found, it would presumably be many years before everyone who needed/wanted it could be treated. But at that point, further fundraising needs would vanish.
Am I talking science fiction or fantasy here? I don’t know. But I believe it has to be the aspiration.
I don’t even know whether there’s a mechanism for donors to specify they want their gift to go exclusively to research. And that puts me off donating, at the moment. I feel I would rather choose a research project that particularly interests me, and support that, directly. But I’ve no idea which one to choose, or how to donate.
That’s why it would be great if MSS had a tick-box to say you want to donate specifically to research, and distributed it to the most promising candidates. If this is already the case, I’m not aware of it. I see only invitations to donate to the MS Society in general, and nothing about being able to support a particular aspect of work.
Tina
Just to be clear… do you mean that is their annual income/expenditure? 29 million raised… 4 million spent per year on research?
I know that they do a lot of important work in support and care - but I too would have thought there’s be a lot more emphasis on research.
Do you (or anyone) know the breakdown of their annual spend?
Costs worry the hell out of me, is everything arranged economically. We need to make every penny work extra hard; research is what is going to help/save us!
I sent for Sally Gunell’s exercise DVD, it arrived in a very high quality A4 envelope. It could have been in an A5 envelope and saved a little on the postage and packaging. Sorry this is ONE of my pet hates on wastage!
Take care, M
You need to look at the annual report. I have extraced the following, which indicates that only 11p out of every pound is spent on research. They spend more on fundraising:
'How we spent each £1
1 Support 29p (30p)
2 Ongoing respite care centre costs 21p (22p)
3 Fundraising 14p (15p)
4 Research 11p (12p)
5 Raising standards of care 7p (8p)
6 Information 6p (6p)
7 Leading the MS agenda 5p (6p)
8 Governance costs 1p (1p)
9 Costs of ceasing direct respite care
provision 6p (0p)’
the above is a direct quote from the last MS Society Annual report
Whilst I agree research is very important I have a gripe in that only certain sections of msers get anywhere near the latest drugs, criteria being a way of curtailing access.
I know of older msers who never get a look in, should they be desperate or not.
Someone needs to fight the ‘criteria’ hidden agenda as any new drugs shall never reach all who need them, only a small fraction within such criteria.
ALL MSERS SHOULD BE TREATED WITH RESPECT AND GIVEN AN EQUAL CHANCE OF TREATMENT - that should be the ms society’s aim, not treatment for some and nothing for the majority.
Sorry anon whilst I thank you the younger PWMS are more likely to respond and should be first.
Yes the ultimate goal obviously is a cure for all but in reality the medical profession can only affect attacks at present. Stem Cells seem to hold promise for everyone.
Until this financial problem is solved charities will get a lot less so will have to be very careful with the money raised.
George
All the time we see patented commercial drugs as the ONLY solution to health issues then figures like £4M or even £29M are almost totally irrelevant to MS. I am not proposing stopping the MS Society funding research indeed I like many would like to see more of the funds used in that way but it is the system that make those sort of numbers largely irrelevant that concerns me.
If we look at the current system and say that the only proven treatments are those drugs licensed for MS then there is not one proven to stop MS progressing let alone come anywhere near a cure. That is after something like 150 years of research. In the UK the latest figures from the MS Society response to NICE re Fingilimod suggest only 14% of people receive the licensed treatments in the UK so for 86% of people they are unavailable even if they want them which presumable some of them would.
We then have treatments like LDN and treatment of CCSVI that sit in the unapproved category which some people find of benefit but cant be funded in general on the NHS due to so called lack of evidence. That is despite the fact that most treatments for MS provided by the NHS are not licensed for MS anyway.
Then there is a whole category of alternate medicine and completely different medical systems associated with India and China which are largely ignored by western medicine because they don’t fit in with their clinically approved methods
CCSVI was first connected with MS in 1896 and LDN was first used experimentally to treat MS in 1985. If waiting for full trails before personally experimenting with treatment of MS based on your own research as some advocate you should may give you a while to wait.
The latest demand to see CCSVI has only come because of one doctor reading existing medical literature because his wife was diagnosed with MS. Why was there no call for that to be tested say 30 years ago? Does no one without a direct personnel interest in MS read existing medical literature? What other potential gems lie not investigated because of lack of appropriately qualified persons having a personal interest in MS?
In my view the MS Society should concentrate on changing the medical system to give people the most accurate information on all potential treatments and fighting for people to have their treatment choice in a fully informed way. People with MS take the treatment risks and live with the results, they should be given free choice what risks they run. Not treating MS at all is hardly risk free.
That is what the group I am involved with was trying to do with regards to the LDN resolution raised at the AGM. Give people information and choice. Will they publish the existence of the medical conferences on the subject as we have requested?
We await their deliberations with interest.