ME/CFS Charities

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sedwen01
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Joined: Thu Aug 15, 2013 1:37 pm

by sedwen01 on Fri Aug 16, 2013 2:37 pm

ME/CFS Charities

Why are there so many charities supporting ME/CFS right now?

Without trawling through pages and pages of text (spoon deficit) just how do they differ and which ones should I be supporting? How many have the support of government resources? How do we know which ones have qualified specialists of ME/CFS on-board.

It seems that a few charities are collaborating on certain areas and I can't help but feel that this is adding to bureaucracy and promoting further delays in ME/CFS breakthroughs.

I'm very confused. So many institutes / charities / organisations! What do they stand for? How do they differ? Why have so many been set up and how do we identify and separate the wheat from the chaff?

I'm fed up of supporting fatigue charities. I want to support those that pioneer biochemical research. How can I differentiate them?

Thanks.

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Dr Charles Shepherd
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by Dr Charles Shepherd on Fri Aug 16, 2013 2:49 pm

Re: ME/CFS Charities

The ME Association is very open about:

1 what we do (a very detailed summary of each MEA Board of Trustees meeting is posted on the MEA website)

2 who is involved - details about trustees, staff and medical advisers who include myself, Dr Nigel Speight (paediatrics), Dr Richard Cantillon (dental) are also on our website

3 how we spend both general funds and research money - accounts are published each year and there is a very detailed summary of the research that we fund in the research section of the BoT summary

We are also very keen to co-operate with other charities on both research and campaigning matters - for example we share the Secretariat duties for the APPG, co-fund the ME Biobank at UCL and are collaborating with others in relation to the proposed Rituximab trial

A great deal of work is put in on a purely voluntary basis by volunteerrs and trustees - most of whom are ill or are caring for someone who is ill

MEA Board of Trustees website summary for July 2013:

http://www.meassociation.org.uk/?p=16116

Hope this is of some help
Dr Charles Shepherd
MB BS, Honorary Medical Adviser, ME Association

sedwen01
Posts: 12
Joined: Thu Aug 15, 2013 1:37 pm

by sedwen01 on Fri Aug 16, 2013 3:00 pm

Re: ME/CFS Charities

Thanks for your response Dr. Shepherd.

Could you please provide further details of precisely where I can view the published accounts of ME Association please?

Laurellen
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Joined: Wed Aug 14, 2013 3:25 pm

by Laurellen on Fri Aug 16, 2013 3:28 pm

Re: ME/CFS Charities

Considering the amount of controversy and uncertainty, it is not that surprising that there are lot of groups with differing priorities.

I think that The ME Association is by far the bast of the two main charities (although I do not always agree with what they do). It gives members a vote at Annual and Extraordinary General Meetings, so has to stay responsive to the concerns of patients.

The other large charity, Action for ME, is controlled by a board who (although not all bad) as a group do not always seem to have the highest regard for patients - eg: Action for ME recently made a statement to an Information Commissioner intended to prevent patients from accessing information on how outcome measures for the PACE trial were devised. They often seem more interested in sucking up to those with power, than fighting for patients to be treated fairly. It looks as if they also spend more on some high salaries for people who are not terribly helpful.

A smaller charity devoted to medical research that I think seems worthwhile is ME Research UK - I agree that it is confusing though.
Last edited by Laurellen on Fri Aug 16, 2013 4:10 pm, edited 1 time in total.

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Dr Charles Shepherd
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by Dr Charles Shepherd on Fri Aug 16, 2013 3:52 pm

Re: ME/CFS Charities

Re MEA Accounts:

The basic details (general funds and restricted/research funds) for all recent years can be found on the Charity Commission website - which publish our financial returns each year

ME Essential magazine contains a more detailed summary of income and expenditure each year - this info is made available before the AGM

We have an AGM each year where members can turn up and ask any questions they want

A full copy of the accounts can be forwarded if you write to Gil Briody at MEA Head Office in Buckingham

Before anyone asks - I do not receive any payments or fees for the work I do for the MEA, DWP, MRC, DoH, APPG Secretariat etc etc. I claim some of travel expenses - but that is it. Otherwise, I subsidise what I do for the MEA out of my own income.
Dr Charles Shepherd
MB BS, Honorary Medical Adviser, ME Association

sedwen01
Posts: 12
Joined: Thu Aug 15, 2013 1:37 pm

by sedwen01 on Fri Aug 16, 2013 3:56 pm

Re: ME/CFS Charities

Thank you guys.

Laurellen, I agree with you there. My two favourite charities at the moment are:

ME Research UK - http://www.meresearch.org.uk/
Simmaron - http://simmaronresearch.com/

Actual biomedical research and nothing but. I'm simply not interested in fatigue studies and lifestyle advice any longer. Sleep, diet, exercise, lifestyle, pacing - it's all common sense. :D

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Dr Charles Shepherd
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by Dr Charles Shepherd on Fri Aug 16, 2013 4:07 pm

Re: ME/CFS Charities

Although the MEA is primarily a patient support/information and campaigning charity we also have a financially separate research section: The Ramsay Research Fund

The RRF funds biomedical research into cause and management of ME/CFS

Research recently funded, or currently funded, includes:

1 The ME Biobank at UCL - years one and two (in collaboration with with three other funders)

2 Mitochondrial dysfunction at University of Liverpool (with the MRC)

3 Two studies relating to post-exertional malaise (Belgium and UK - Dr Amolak Bansal)

4 Sleep disturbance and management study (University of Northumbria)

5 Factors involved in development of severe ME (Professor Derek Pheby et al)

6 Gene expression study (Professor John Gow et al)

7 Post-mortem tissue analysis

We have also raised around £60,000 to help fund a UK trial of Rituximab and are currently assessing a clinical trial of another drug treatment

Which is not a bad list for a patient support charity....
Dr Charles Shepherd
MB BS, Honorary Medical Adviser, ME Association

sedwen01
Posts: 12
Joined: Thu Aug 15, 2013 1:37 pm

by sedwen01 on Fri Aug 16, 2013 5:22 pm

Re: ME/CFS Charities

Just an update. The MEAssociation accounts can be found here:

http://www.charitycommission.gov.uk/sea ... txt=801279

You can search for any charity using their registration number here:

http://www.charitycommission.gov.uk/abo ... -accounts/

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Dr Charles Shepherd
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by Dr Charles Shepherd on Fri Aug 16, 2013 5:37 pm

Re: ME/CFS Charities

So no need to contact Gill

31 pages of MEA accounting information can also be found on the Charity Commission website!
Dr Charles Shepherd
MB BS, Honorary Medical Adviser, ME Association

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