which ME charity needs our cash most?

[snowathlete]

I know most of us have little or no money, and thats certainly the case for me to, but i feel i can afford a couple of pounds a month to help out an ME charity. The question though is which charity is it best given to?
There are a couple of ME charities in the UK that i am aware of, but i dont know that they really do much - that may just be because i dont know much about what they do rather than them being crap.

Ideally id like the money to go on funding research but im not sure any ME charity really has enough funding to really make this a reality of any significance, so perhaps the money would be best spent on fundraising. But i dont know of any ME charities that really do any serious fundraising, so again im not sure where my small contribution would be best made.

Anyone got any ideas?

 

[justinreilly]

I agree that fundraising is the best use of the money, but CAA is the only group that I am aware of that spends significant money on fundraising. I am from the US, but I have always heard good things about Invest in ME. In the US, I think Dr. Enlander at Mt. Sinai is the best (and CAA is the worst). My two cents anyway.

 

[Purple]

Ideally id like the money to go on funding research but im not sure any ME charity really has enough funding to really make this a reality of any significance, so perhaps the money would be best spent on fundraising. But i dont know of any ME charities that really do any serious fundraising, so again im not sure where my small contribution would be best made.

Anyone got any ideas?

In the UK, Invest in ME. The Let's do it for ME, a patient led fundraising initiative, raised about £68,000 so far in about a year. Invest in ME operate and achieve a lot on a shoestring budget, e.g. the annual conferences in London. They wish to establish a UK Centre of Excellence for biomedical ME research. http://ldifme.org/ - lots of info here.

Additionally, you can support ME Research UK if you shop on Amazon - they get between 5%-9% of your purchase if you go to Amazon through the link on this page: http://www.meresearch.org.uk/support/shopping.html (really, we should all be doing this - it adds up to so much and is a very easy way to raise funds)

 

[Aileen]

I'd say right now it is the Simmaron/PHANU collaboration that will give you the biggest bang for your buck. They have a commitment for a large amount of cash for the 2nd phase of a study BUT the catch is they must come up with the money for phase one elsewhere. You donate $1 and it turns into $5. http://www.simmaronresearch.com

 

[Aileen]

Additionally, you can support ME Research UK if you shop on Amazon - they get between 5%-9% of your purchase if you go to Amazon through the link on this page: http://www.meresearch.org.uk/support/shopping.html (really, we should all be doing this - it adds up to so much and is a very easy way to raise funds)

Another way, a free way, to support ME Research UK is to use this search engine. You must specify the charity after the .com http://www.everyclick.com/meresearchuk Each time you use this a small amount will go to the charity. I've been doing this for years now and even though I'm in Canada and the search engine is a UK one, it still gives me what I need 90+% of the time.

 

[justinreilly]

I'd say right now it is the Simmaron/PHANU collaboration that will give you the biggest bang for your buck. They have a commitment for a large amount of cash for the 2nd phase of a study BUT the catch is they must come up with the money for phase one elsewhere. You donate $1 and it turns into $5. http://www.simmaronresearch.com

Good point!

 

[taniaaust1]

Lots of good ones mentioned here.

Ive even here in Australia benefited some from" Invest in ME" info and now have two of their International conference years DVDS (they focus more so on ME rather then general CFS). Its very invaluable info as they get ME/CFS experts and researchers to talk about the latest ME research each year. ME research will never mean much unless its also gotten out there the results of research and what is going on with research and latest ME info on DVD like this is invaluable.
....

Alison Hunter Memorial Foundation is another "ME" charity which has done heaps for ME and funds a lot of very good ME/CFS research (it funds ME "biomedical" research) .

http://www.ahmf.org/ (I suggest people to check out that page to learn more about the Alison Hunter Memorial Foundation). They've been around since 1998 and if you research who funded many of the past Australian ME studies you will find they helped fund.

They also done a lot to help with ME advocacy (helping educate doctors etc etc by conferences for doctors and the general public eg in 2007 they brought Dr Chaudhuri, Prof Kenny De Meirleir, Prof. Malcolm Hooper and Dr Daniel Peterson to Australia and held big conferences to help educate doctors here and also interested public around different parts of Australia).

They are currently trying to get more money to go towards a ME study in which a expensive piece of medical equipement ($200, 000) is currently needed for this study ( Dr Daniel Peterson and the Simmaron Neuroimmune Research Foundation Nevada is helping lead the study). "seeking to obtain a new flow cytometer to continue their immunological and genetic investigations.This equipment upgrade is critical for their ongoing ME/CFS research programme examining spinal fluid and blood and will allow more advanced analyisis of possible pathomechanisms."

The Alison Hunter Memorial Foundation does also help other ME orgs around the world. and is working with both American ME and the English ME orgs.. I noticed on my the cover for the "Invest in ME" International ME/CFS conference 2009 the conference was dedicated to the Alison Hunter Memorial Foundation "for their support in producing the DVD".

Anyway.. the Alison Hunter Memorial is one ME org I trust to be putting money into ME where it is needed most at the time, be it into research or advocacy and which does have a world impact. (to choose to just donate towards the piece of equipment which is needed for the study they are helping fund currently - the Australian and Simmaron Neuroimmune Research Foundation ME immune/genetic research .. go to http://www.ahmf.org/cytometer.html )

 

[taniaaust1]

I'd say right now it is the Simmaron/PHANU collaboration that will give you the biggest bang for your buck. They have a commitment for a large amount of cash for the 2nd phase of a study BUT the catch is they must come up with the money for phase one elsewhere. You donate $1 and it turns into $5. http://www.simmaronresearch.com

The above link dont work..does anyone know of another link for this?

The link I put in my other post http://www.ahmf.org/cytometer.html goes towards the Simmaron study equipment costs for their research (it will be awful if that immune/genetic ME study gets held up due to not having a piece of equipment) but it dont turn $1 into $5 (was confused by that).

 

[Aileen]

Simmaron Research http://www.simmaronresearch.com/donate It's working now. I just messed up when I added the link in the previous post. Sorry.

 

[Bob]

In the UK, Invest in ME. The Let's do it for ME, a patient led fundraising initiative, raised about £68,000 so far in about a year. Invest in ME operate and achieve a lot on a shoestring budget, e.g. the annual conferences in London. They wish to establish a UK Centre of Excellence for biomedical ME research. http://ldifme.org/ - lots of info here.

Additionally, you can support ME Research UK if you shop on Amazon - they get between 5%-9% of your purchase if you go to Amazon through the link on this page: http://www.meresearch.org.uk/support/shopping.html (really, we should all be doing this - it adds up to so much and is a very easy way to raise funds)

These are my top two UK charities, as well.

Invest in ME seem to have very low overheads, and you can choose to donate to their biomedical research fund only:
http://investinme.org/IIME Campaigning-Can Do Biomedical Research Fund.htm
Like Purple said above, they are currently focused on setting up a UK centre of excellence in Norwich:
http://www.investinme.org/Research - ME Institute.htm
Their main donation page is here:
http://investinme.org/helpus.htm


ME Research UK exist to fund biomedical research: "ME Research UK is a charity with the principal aim of commissioning and funding scientific (biomedical) investigation into the causes, consequences and treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (also known as ME/CFS)."
This is a list of the ongoing research, which they've funded:
http://www.meresearch.org.uk/research/studies/ongoing/index.html
Here is their donation page:
http://www.meresearch.org.uk/donation/index.html

 

[justy]

I cannot say strongly enough how much i agree with giving to the setting up of the centre of excellence in Norwich through the Lets do it for ME camapign that invest in ME are running. We so desperatley need a centre like this in the UK. We have nothing here of any worth for research and treatment - once this centre is up and running we finally have a way to counter the work of the psychiatrists etc.
all the links are above - i dont need to repeat them here.

All the best, Justy x

 

[Uno]

Neuroimmune Alliance will be needing funds once our accounts are finalized.

The first projects are the distribution of M.E educational packs to GP's across Sussex and a local training program involving hospital consultants and GP's.

We aim to work closely with Southampton Hospital to offer comprehensive immunology and virology screening as part of our brand new clinic which will be based in Worthing, West Sussex.

Another side to our projects is research, we plan to conduct Random Controlled Trials in several areas including the Methylation Protocol as part of our five year plan.

We need all the support we can get

 

[Insomniac]

I managed to vote last time. This time I want to vote more but would appreciate it if it could be made simpler for people like me who aren't good computers and facebook.
Please could someone put a direct link with a simple instruction of where to click for those charities that help us. Thanks
Rachel

 

[Min]

Invest in ME and their 'Let's Do It For ME' campaign win my vote every time, with ME Research UK and the TYMES trust also being very worthy charities.

 

[EnduringAngel]

Good topic, have been thinking the same myself recently, as want to do some fund raising.UK.
The main two I support are invest in ME and the 25 per cent ME group.
Also the grace for me charity and thymes trust are also really good.

I find the other UK charities dubious.

I couldn't decide who to fund-raise for so have decided to let donators choose.

Invest in me plan to do research, set up a hospital and do the conferences.
But am not sure about their research plans and given that the hospital will just benefit those in Norwich, it's a shame.
However the awareness they create with media and the conferences is brilliant.

25 per cent me group are for severe ME sufferers, and there advocacy service is amazing and has helped me so much, however there is a waiting list, and they are desperate to raise money to employ another person, what with the current welfare cuts, they are in great need. They also have a fab list of medical advisor's.

 

[Insomniac]

If we are allowed to recommend non UK ME charities then I would recommend "CFIDS Foundation". (Not to be confused with CFIDS Association.)
CFIDS Foundation discovered the anaesthesia protocol for ME which helped me during my operation, that is what made me a supporter. They were the first to posit Rituximab as a possible treatment. They are currently researching the cancer connection to ME and are also doing research to see if radiation is connected to some cases or not. They did research proving low STAT1 in this desease. I like the way they try to look at all sorts of angles.
They are an all patient volunteer group. They don't do much advocacy but they are very highly research orientated. Just their anaesthesia research which that helped me during my operation was enough to turn me into a supporter.

There is a site called igive.com where everytime you make a purchase at an American store a percentage of that purchase goes to an American charity. I chose CFIDS Foundation as my charity there.