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UK: FM sufferer to replace Sir Peter Spencer as CEO of Action for ME

Sasha

Fine, thank you
Messages
17,863
Location
UK
Is this an opportunity to do something about AfME's support of the PACE trial? I'm not up to speed on their activities but they used to have a reputation for not challenging the psychological interpretation of CFS and so for years I've ignored them.

Would anybody with more knowledge of AfME care to comment about what their position is and whether we should be thinking of writing to Sonya to ask for a change?

I believe they recently contributed to funding Prof Newton's work at Newcastle, so the picture is a bit confused for me. But if there are things that need changing, maybe this is an opportunity.

http://www.bath.ac.uk/news/2012/07/04/action-for-me/

Bath graduate Sonya Chowdhury will be the next Chief Executive of Action for M.E., the UK’s leading charity for people with Myalgic Encephalomyelitis (M.E.) and their carers.
She will take over from Sir Peter Spencer, who is standing down as CEO after five years, in early September.
During her time studying at Bath, Sonya gained a BSc Hons in Sociology and Social Work. She has since worked in senior management roles within the voluntary sector.
Sonya, 37, is currently working for leading children’s charity Barnardo’s where she is Head of Business Support for two days a week and National Lead on Family Strategic Partnership for the remaining three.
Born and bred in Bath, Somerset, where she lives with her husband and two sons aged nine and 14, Sonya was previously Assistant Director for Barnardo’s in the South West.
She said that while applying for a chief executive role was a logical next step in her career, her own personal experience of chronic illness had been a major factor in her applying for the role with Action for M.E.
Sonya said, “I suffer from Fibromyalgia which, while different from M.E., has given me an insight into the effects of a long term illness on people’s lives. While I am lucky enough to be able to manage my condition and work, I have experience of its debilitating effects and impact on day-to-day living.
“When I saw the advert’ for this role, it touched something on a personal level.
“I see it as an ideal opportunity to bring together my experience both at work, where I have been heavily involved in policy, politics, fundraising and strategy, and my personal life.”
Of the challenges ahead for the charity, Sonya said, “During a period of austerity, there is understandably a sharper focus on what will and will not be funded. We need to look at new opportunities and accept that things will not stay the same.
“There is something exciting about working creatively with people who have passion about what they do. I look forward to working with what is clearly an enthusiastic team.”
Action for M.E. Chairman, Alan Cook, said, “We are very fortunate to be able to appoint somebody of Sonya’s high calibre. She has had an impressive career to date, where she has developed knowledge and skills that will drive the charity forward.
“Her enthusiasm and energy are infectious and will serve her well in this demanding appointment.”
In an announcement to staff about Sonya’s departure, Barnardo’s Chief Executive, Anne Marie Carrie, said, “This role represents a wonderful opportunity for Sonya to build upon the skills and experience she has developed here at Barnardo’s and I would like to take this opportunity to thank her for her excellent work.
“Under her leadership the Family Strategic Partnership has taken great strides to improve the work of the voluntary sector in supporting the lives of vulnerable families across England.”
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
Action for ME used to be a joke, may as well have been called "Abandon Hope For ME!"
:p

makes me think the rats, er, Weasels, are abandoning their sinking ship! :thumbsup:


ACTHUNG, RITUXIMAB TORPEDO! :alien:
(Das Boot, definately one of the best films ever made)
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Just visited their site and was pleasantly surprised to read this (I've put the especially interesting bits in red - sorry about the rubbish formatting due to the cut-and-paste hyperlinks):

http://www.actionforme.org.uk/get-informed/about-us/what-we-believe-about-me.htm



What we believe about M.E.
M.E. is a serious and debilitating physical illness of uncertain duration.
Some people with M.E. recover fully and most improve significantly over time. A minority remain very ill.
There is currently no cure but a number of conventional medical approaches andcomplementary therapies are available to help manage the symptoms.
We provide information so that people with M.E. can make an informed judgement on the likely effectiveness of different approaches and any risks involved.
At Action for M.E., we are unequivocally of the view that M.E. has a physical cause. We support the World Health Organisation definition of M.E. as neurological.
NHS

Action for M.E. supports the principle that people with M.E. should have available to them an NHS service which can meet their needs.
NHS services vary enormously across England, Northern Ireland, Scotland and Wales.
Together with the publication of NHS guidelines, the establishment of specialist clinics has helped to legitimise the illness.
However, we are concerned by the emphasis on cognitive behavioural therapy and graded exercise, as the results claimed do not reflect the findings of our surveys.
The current guidelines reflect the limited amount of research into the biology of the illness – and the lack of studies involving children who have M.E. and people of all ages who are severely affected.
In the absence of hard science, the knowledge and experience of people with M.E. is a particularly valuable resource. More account should be taken of patient reported outcomes.
 

Min

Guest
Messages
1,387
Location
UK
Her annual salary will be, I understand, £75,000.

I wonder if AfME will allow membership now to anyone but their self-appointed executive - at present everyone else is just a subscriber to the magazine and has no voting rights and the charity does not hold AGMs.

(Even the 25% group for the severely affected has full membership, holds AGMs and members have voting rights.)

I wonder if the charity will continue to have very close association with psychological studies of mild fatigue as they did with the PACE trial.

I wonder if the magazine will continue to run adverts for the highly controversial Lightning Process and continue to voice their support of the SMILE trial of the Lightning Process on vulnerable children that so many UK m.E. charities have condemned as unethical..
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Hi Min,

I wonder if AfME will allow membership now to anyone but their self-appointed executive - at present everyone else is just a subscriber to the magazine and has no voting rights and the charity does not hold AGMs.

Are there other medical charities like that? Seems a bit weird to have people campaigning supposedly on our behalf without them being under our control.


I wonder if the charity will continue to have very close association with psychological studies of mild fatigue as they did with the PACE trial.

I wonder if the magazine will continue to run adverts for the highly controversial Lightning Process and continue to voice their support of the SMILE trial of the Lightning Process on vulnerable children that so many UK m.E. charities have condemned as unethical..


Good questions.
 

user9876

Senior Member
Messages
4,556
AYME which is AfME's associated charity for children with ME also has a new Chairman who has a child with ME.

http://www.ayme.org.uk/news/-/asset...mode=view&p_p_col_id=column-1&p_p_col_count=1

They desparately need some serious reform. They have been very supportive of the CBT and GET as well as failing to help families with kids with ME who are dragged through child protection proceedings. Esther Crawley is their medical advisor.
 

Min

Guest
Messages
1,387
Location
UK
http://www.meactionuk.org.uk/AfME-and-the-Insurance-Industry.htm
Disturbing evidence exists that the charity Action for ME (AfME) seems to be strengthening its links to the insurance industry, which may be to the potential detriment of people with ME/CFS (whose best interests the charity is required by The Charity Commission to represent).


1. The appointment of Alan Cook CBE as Chairman of AfME

On 8th February 2010 AfME announced that Alan Cook CBE was the charity’s new Chairman. Sir Peter Spencer, CEO of AfME, said: “It’s great news that Alan is coming on board to contribute his experience to this forward thinking organisation. We will benefit hugely as he extends his fantastic track record for achieving success in all that he does”.

Alan Cook also happens to be Chairman of the insurance group that includes Irish Life & Permanent Group Holdings plc.

An Occupational Health doctor who works for Irish Life is Dr Deidre Gleeson, and there is mounting evidence that she is recommending termination of benefit payments to Irish Life policy holders with severe ME/CFS who make claims on their income protection policies because they are simply unable to work.

Can AfME not comprehend that it is not appropriate for it to have a Chairman with such an obvious conflict of interest, whose company is responsible for denying insurance benefits to people with ME/CFS?

For AfME to be so closely linked to the insurance industry that has done so much harm to people with a devastating multi-system disorder must surely be a matter of concern.

I have never believed that AfME or AYME work for the benefit of M.E. patients, but hope the new and very well paid CEO will ensure they do in future.