AfME magazine, article New Trustees

The recent article published by Third Sector contained the following quote:

“A spokeswoman added that AfME required the majority of its trustees to have had ME, and that all but two of the current 10 board members were either sufferers or carers.”

The May 2008 issue of AfME’s InterAction magazine, is published this week.  In Issue 64, Sir Peter Spencer introduces two new members to the Board of Trustees:

Lionel Godfrey, a senior advertising and marketing executive with an large international agency, has a family interest in ME. 

Chris Cundy is an executive board member of the VT Group.  The VT Group is a corporate sponsor of AfME; in addition to donating funds to AfME, AfME is one of the VT Group’s three partnership charities for 2008. 

Before taking up the position of CEO of AfME (in order, he has said, to give something back to society) Sir Peter Spencer was a former Second Sea Lord who had recently retired as chief executive of the Defence Procurement Agency.

According to VT Group Annual Report & Accounts 2005, Admiral The Lord Boyce is listed as a Director of the VT Group:

http://www.vtgroupplc.net/store/AR&ACC_2005.pdf

“Admiral The Lord Boyce, Non-Executive, age 62

After a long and distinguished career in the Royal Navy, culminating in his appointment as First Sea Lord in 1998, Lord Boyce was subsequently appointed Chief of Defence Staff in 2001. He retired from the latter role in May 2003 and was appointed Lord Warden of the Cinque Ports in July 2004. He is a non-executive director of W S Atkins plc and he was appointed to the VT Group board in July 2004.”

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Reproduced with permission of

www.afme.org.uk

InterAction magazine, Issue 64, May 2008

Page 1: One year on

Looking back on my first year at Action for M.E., I am struck by how isolated so many people are because of this horrible illness and how generous some people are in giving their time, to try to make a difference - carers, volunteers, fundraisers and of course our members themselves.

During M.E. Awareness Month, we will be highlighting serious shortcomings in health and welfare services across this country and the injustices which result. The information which informs this campaign comes directly from those of you who responded to our recent questionnaire. Thank you for investing so much effort. I will be announcing the results on 12 May, M.E. Awareness Day.

In this issue of InterAction, it is a pleasure to acknowledge the contributions of those volunteers who staff the support-line (p15) and record InterAction on CD (p 37). Other volunteers write for us, proof read (see opposite), draw cartoons (Lindsay), run our postal library (Moira), provide admin support (Mary, Sue, Bridget, Alexis) and of course raise funds.

Personally, I am indebted to the many people who have shared their expertise and experiences with me over the past 12 months. In particular I would like to thank those members, colleagues and local group representatives who brought home to me the realities of M.E.

I have also drawn heavily on the wisdom of our trustees, who give Action for M.E. its strategic direction. It is very clear as we become a stronger and much more powerful organisation that the soul of the charity rests upon it continuing to be led by people with M.E. This retains an essential moral authority at the heart of all of our corporate decision making.

Today, the Board is preparing to welcome new members (see p 4). They bring with them a wide range of skills, which will stand us in good stead as we expand our operations.

One year on, I am looking forward to the next set of challenges in our fight to improve the lives of people with M.E.

Sir Peter Spencer
Chief Executive

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Reproduced with permission of

www.afme.org.uk

InterAction magazine, Issue 64, May 2008

Page 4: New trustees

Action for M.E. was founded by and is led by people with M.E., for people with M.E. It is the policy of the charity that the majority of trustees should have, or should have recovered from M.E. Trustees also include carers for people with M.E. and professionals whose expertise helps to provide additional skills in deciding the strategic direction of the charity and its activities.

As InterAction goes to press, six people who either have M.E. or who are carers are being interviewed for trustee roles. Two prominent new members - Chris Cundy and Lionel Godfrey - have already been appointed.

Lionel Godfrey

Lionel Godfrey is Worldwide Client Service Director with Ogilvy & Mather. He has spent his entire career in marketing and communications and has been a member of the Worldwide Board of Ogilvy, one of the top five global agencies, since 1994. His principal client responsibility is Unilever, (the world’s largest advertiser outside the US), an account which Ogilvy runs in 80 countries.

In addition to an impressive career history, Lionel understands what it is like to care for someone who has M.E. He told InterAction:

“My younger daughter Clemmie went down with M.E. in her final year at university. She was a highly talented sportswoman who played lacrosse for England but when the illness struck, she didn’t even have the energy to walk down the stairs.

“It was heartbreaking to watch, but we were fortunate to have an excellent and sympathetic GP and with his help and a lot of TLC from my wife, after a few months there was some improvement.

“As her strength returned, the next issue was to rebuild her confidence and help her believe that some sort of normal life would be possible.” A temporary job helped. “Eventually, after 18 months, she felt well enough to leave home and start her post-graduation life in London. Four years on, she has now built a successful career in sports marketing and she has recently got married.

“She still has to be very careful about pacing herself and energetic sports are no longer on the agenda. But we all feel very lucky and grateful that she has made such a good recovery.”

Amongst the famous campaigns that Lionel has led, the repositioning of Lucozade from a convalescence drink to an in-health energy boost, featuring Daley Thompson, in the early 1980s, is one of the most successful. More recently, Dove’s Campaign for Real Beauty has achieved enormous publicity around the world and this year won the coveted Grand Prix at the Cannes Festival.

“Action for M.E. was an invaluable source of information and support during Clemmie’s illness,” says Lionel.

“Having lived through my daughter’s M.E. and seen the support that Action for M.E. can provide, I am very gratified to have the opportunity to try and help the charity in whatever way I can. I hope my professional skills will be of some use, and I really look forward to working with the other trustees and with Peter Spencer.”

Chris Cundy

After studying for an Economics and Accounting Degree at Bristol University, Chris joined KPMG Audit Pic in 1982 and subsequently spent 11 years in the profession.

He qualified as an ACA in 1985 and transferred to KPMG’s Brussels office with responsibility for its multinational clients. On his return to Southampton in 1989, he was responsible for a number of plc audits.

In 1993 Chris joined VT as Group Accountant with particular involvement in the Group’s acquisition activities and development of its Support Service business. He became Group Finance Director in November 1997 and became an executive board member in 1999. After 10 years as Finance Director, he has now taken the role of Commercial Director, responsible for strategy, government relationships and business development activities.

Chris told InterAction:

“I am delighted to be joining Action for M.E. as a trustee. When VT Group agreed to become a corporate sponsor I was impressed with the work done by the charity and the people involved and look forward to being able to make a contribution to the charity’s development.”

When he is not busy with his corporate responsibilities, Chris’ interests include rugby, football and walking. Earlier this year, Action for M.E. was delighted to be selected as one of the VT Group’s three partnership charities for 2008. In addition to donating monetary funds, VT is encouraging staff to volunteer and take part in fundraising generally.

 

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RSM Protest video from GBCOne

RSM Protest video

http://www.youtube.com/watch?v=OLFGPc_fZ7A  

From: GBCOne

Added: May 11, 2008, Category: Nonprofits & Activism

The Royal Society of Medicine in London held a conference on “Chronic Fatigue Syndrome” in April 2008. Due to the strong presence of speakers from the field of mental health, some consternation was caused amongst people diagnosed with M.E.

M.E. has been categorised as a NEUROLOGICAL disorder by the World Health Organisation since 1969.

The two open letters presented to the RSM can be found at:
http://readmeukevents.wordpress.com 

here:  Open letter to the President of the RSM from the RSM Protest Group

and

here:  Open letter to Dean of the RSM from Mrs Sheila Barry

 

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25% ME Group Press Release: RSM CFS Conference

In April, the 25% ME Group issued a Press Release in respect of their position on the Royal Society of Medicine’s “CFS” Conference, which was held on 28 April.  This Press Release has only just come to my attention and although the RSM’s conference has come and gone I am posting it, here, for the sake of completeness.

A Word doc of the Press Release can be downloaded from the 25% ME Group website here

For links to copies of the 25% ME Group’s position statement on the RSM “CFS” Conference and for position statements from Action for ME, the ME Association, The Young ME Sufferers Trust, Invest in ME and RiME click here

25% ME Group (Support for Severe ME Sufferers)

PRESS RELEASE

The Royal Society of Medicine Conference on “CFS” April 28th, London

Why is there an international outcry from patients suffering from Myalgic Encephalomyelitis (ME)?

It is because the Royal Society of Medicine is holding what should be an impartial conference in London, on Chronic Fatigue Syndrome (CFS), [often equated with Myalgic Encephalomyelitis (ME)]. Unfortunately it is only including information on psychiatric models of causation and treatment.

Sufferers in the UK have had to endure an unrelenting campaign by certain psychiatrists , some with connections to the medical insurance industry, to try to downgrade their World Health Organisation recognized neurological disease, to a psychosomatic disorder ; Chronic Fatigue,

Recent research by the 25% Group uncovered a shocking picture of severely ill ME sufferers being labeled as psychiatric patients, being treated with contempt by many GP’s, doctors and nurses, being locked in secure units and shut in AIDS wards, being refused food and being forced to participate in inappropriate graded exercise and behavioural therapy, designed to convince them there is nothing seriously wrong with them.

“I have had severe ME for almost a decade and a half and all that time have been severely disabled as well as chronically and constantly ill.” says Linda Crowhurst. “To my dismay and outrage, the situation which was dreadful when I first got ill has indeed worsened as the psychiatric lobby has got itself firmly embedded into the politics, culture and ‘treatment’ of ME.”

Calls from ME patients for a proper biomedical service continue to go unheeded, vital medical evidence is either ignored or suppressed and sufferers, many as ill as an AIDS patient close to death, are given a psychiatric label.

The upcoming RSM Conference is yet another example of how multi-billion dollar vested interests and corporate industry have managed to infiltrate almost all major institutions with the arrogant pursuit of a psychiatric construct for this serious life-threatening disease.

The Chairman of the 25% ME Group says: “The existing evidence from surveys of over 3,000 patients suggests that such regimes (e.g. Cognitive Behavioural Therapy/Graded Exercise Therapy), which are being discussed at the RSM Conference, are of limited value and at worst are harmful, leading to increased illness and disablement”.

The 25% ME Group stands uncompromisingly for the truth that ME is a World Health Organization classified neurological (ICD10:G93.3) multisystem, physical disease, not a subgroup of any fatigue syndrome. We cannot support any organisation that promotes or endorses the inappropriate and dangerous psychosocial model of M.E”.

Notes to Editors :

There is still much confusion and a lack of accurate knowledge about severe ME/CFS in the medical profession, leaving many patients dismissed and abandoned without support.

Variants of the term “M.E.” were first used following a series of repeating epidemics starting in May 1955 at the Royal Free Hospital, London. Recognised as a specific disease entity by The Royal Society of Medicine in 1978 and by the World Health Organisation since 1969 as an organic neurological disease, ME/CFS is currently classified under ICD code G93.3.

ME ranks second only to HIV as the cause of serious, long-term illness in the USA.

The following is a quote from Dr Marc Loveless under oath in testimony before Congress in 1995.

“I have treated more than 2,000 AIDS and CFS patients in my career. And the CFS patients are MORE sick and MORE disabled every single day than my AIDS patients are, except for the last two months of life!”

Cycles of severe relapse are common, as are further symptoms developing over time. Around 30% of cases are progressive and degenerative and sometimes ME/CFS is fatal. Two recent reviews have concluded that, “Substantial improvement is uncommon and is less than 6%”; and, “Full recovery… is rare.” According to the Chief Medical Officer, people with severe ME/CFS in the UK currently receive “seriously inadequate health care.”

25% ME Group (Support for Severe ME Sufferers)

21 Church Street
Troon
Ayrshire
KA10 6HT

Email: enquiry@25megroup.org

Website: www.25megroup.org

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Third Sector AfME article: Comments 4 and 5

Clarification: The article on the Third Sector website: Action for ME in membership row, 07 May 2008, has erroneously presented the RSM Protest as though it had been a protest against Action for ME. The RSM Protest, organised by Gus Ryan, which took place outside the Royal Society of Medicine on the afternoon of 28 April was attended by individuals, some of whom were members of Action for ME and who hold strong views about Action for ME’s governance, modus operandi and policies. However, the Protest was organised, promoted and supported as a protest against the psychiatric / psychological bias of the presenters at the RSM’s “CFS” Conference and not as a protest against Action for ME, per se, or against Action for ME’s participation in this conference.

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For Third Sector article and comments 1, 2 and 3 see:

http://readmeukevents.wordpress.com/2008/05/07/third-sector-action-for-me-in-membership-row-070508/

Two further comments have been added to the Third Sector article:

http://www.thirdsector.co.uk/Channels/Management/Article/807171/Action-membership-row/

Action for ME in membership row

By Paul Jump, Third Sector, 7 May 2008
Third Sector, 7 May 08
Website version

Comment 4

Gus Ryan, 8 May 2008, 21:41

The Third Sector article, that has been linked to on this list, has erroneously stated that:”Action for ME has defended itself after a public protest from a group of disgruntled members who believe they are being denied full membership rights.”

and

“The dissident members claim that the charitable company, which broke away from the ME Association in 1994, is acting unconstitutionally because it does not hold AGMs or represent members’ views.

A group of about 16 demonstrated last week outside a conference at the Royal Society of Medicine, where the charity’s chief executive, Sir Peter Spencer, was due to give a speech. They claimed the board of AfME had become dominated by people who believed ME was a psychological condition. Most ME sufferers, they said, believed it was physical.”

1) The protest outside the RSM was never about AfME. The protest was about the mental health bias of their conference on “Chronic Fatigue Syndrome”. This was stated on various lists more than once and advertised on YouTube.

2) The two open letters presented to Jo Parkinson of the RSM, again published on M.E. lists, did not refer to AfME’s governance.

3) I, being the organiser of the protest and therefore present, am not a member of AfME.

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Comment 5

Ciaran Farrell, 9 May 2008, 17:52

Again Gus Ryan is absolutely right! The problems with the article flow from the way Third Sector investigated and organised the material for the article in that it was not thought pertinent to want to know about or understand the physical / psychological debate, so to use a military analogy, battlefield, thus it was not possible for Third Sector to distinguish between different actions carried out on the same battlefield for the same reasons, but over different though linked issues.

The RSM protest was about the psychological bias of the conference, the linkage to AfME was that AfME were representing the patient’s perspective at the conference by giving a presentation to the conference from the patient’s perspective. This presentation in the view of the ME community ought to have been given by patients, not the CEO of a charity who is not an ME sufferer or a carer.

AfME’s perspective on ME is that ME is a “biopsychosocial” illness with large to very large psychological and social components and a small to very small physical component, which is the prevailing view in government circles, as opposed to a purely physical disease. This biopsychosocial model of ME is unacceptable to the ME community as the ME community believe that ME is defined by the World Health Organisation as a physical neurological disease, and that government, the NHS and the medical profession ought to respect the WHO classification.

Many in the ME community therefore see AfME as having the same kind of psychological bias against the physical nature of ME that the main speakers at the conference have in that AfME is seen as a an undemocratic and non transparent charity whose policy is made behind closed doors by a self selecting clique who work with government to retain a broadly psychological type of status quo, rather than seeking to change that psychological status quo into a physical status quo as AfME members and the ME community want.

Therefore to put it bluntly, it was a matter of birds of a certain psychological feather flocking together at a conference for medical and other health professionals to discuss patients without actually allowing any patients into the conference, and where the patient’s voice would not be properly heard, if it was to be heard at all.

Thus the RSM protest was about presenting a physical presence outside the RSM in protest about the way in which ME was going to be depicted at the conference in a psychological light despite the massive biomedical research evidence base establishing ME as a physical disease, and the sidelining of the patient’s voice which would have spoken out against the psychological representation of ME at the conference if only there had been any opportunity for patients to actually have a voice.

The protest and the postcard campaign have brought home to the RSM that ME sufferers and carers believe that ME is a physical disease and not some sort of mental health condition and that so many mental health professionals of one sort or another speaking at a conference about ME is unacceptable to the ME community, and that patients and carers ought to be given an opportunity to have a say on the matter which is why the RSM will be holding a “Medicine & Me” type of meeting for patients and carers on ME. The RSM would not have done this if it were not for the protest.

Ciaran Farrell, RSM protest Steward

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Comment 6

Sue wheeler, 11 May 2008, 08:54

I resigned my membership from AFME because they no longer represent the best interests of their members. They are ever increasingly joinging forces with those who support the theory that ME is a psycho-social disease and favour psychiatric treatments for it. This is unacceptable when there are over 4000 respected medical reports proving the physical existence of ME. There is also now proof that some 88 different genes are malfunctioning in people with ME and they deserve better. Because of these people they do not receive proper care or support. I deliberately left out the word treatment as the MRC steadfastly refuses to fund anything that could lead to treatment for ME sufferers and has confirmed under the freedom of information act that so far several million pounds has been spent on psychiatric treatment research. They say, AFME included, that there are no tests for ME. This is a lie.

There is no simple blood test yet granted but there are a range of tests which conducted together can physically prove the existence of ME in a patient. These tests include Spect and PET scans, now ok these are expensive but compared to keeping people unwell and on benefit (once they have fought to get them) they are cheap. Not one person with ME wants to live the life they do yet they are mis represented and portrayed as skivvers who are simple ‘tired.’ The abuse is staggering - can you imagine what would happen if someone with cancer for example had to endure this and were told to ‘talk’ themselves better? Outrageous. And this is what AFME are aligning themselves to. For the record, they never gave me the decency of a response.

As for the RSM conference protest, the small number is indicative of how difficult it is for people with ME to do things. I wanted to go but the journey alone would have made me ill for several days, and of course there is the expense as despite being very limited in my activities I don’t qualifiy for any other benefit except incapacity benefit and I only got that because the DWP decided i have “moderate to severe mental ill health.” I don’t and never have had. I have moderate to severe ME.

The term CFS is an insult to all of us with this devastating condition and reflects the contempt with which we are treated by the medical profession.

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The MEA and the James Lind Alliance

The ME Association and the James Lind Alliance

In a previous entry, I reported that Professor Stephen Holgate, chair of the MRC’s new CFS/ME “multi-disciplinary panel”, is a Member of the James Lind Alliance Strategy and Development Group, 2008.

The James Lind Alliance was co-founded in April 2004 by Dr John Scadding, Dean of the RSM and Dr Scadding remains a Member of the JLA Strategy and Development Group.

Open Forum Meeting: 15 May, House of Commons

The organiser, Ms Newman, advises that a final reminder for this year’s 12th May event and Open Forum on 15th May is to follow.  Agenda for next Thursday’s Open Forum, below.  All enquiries to Di Newman, please, not to meagenda or Read ME UK Events.

 

Open Forum Meeting on M.E./CFS
House of Commons, Westminister SW1A 0AA
Committee Room Six
Thursday 15th May 2008
1:45 PM - 4:45 PM

AGENDA

1. WELCOME, INTRODUCTIONS & APOLOGIES

2. OPENING REMARKS: from the Chair

3. PANEL MEMBERS:
(i) Mental Health/Mental Capacity Act
(ii) Recent Guidelines on M.E./CFS (NICE, NHS-Plus, DWP)
(iii) UK M.E. Clinics & Services, Research & Funding
(iv) RSM Conference
(v) National M.E./CFS Charity Representation

4. THERE WILL BE A QUESTION & ANSWER SESSION: after every one of the topics above are introduced to the meeting by a Speaker. Then the Floor will be open to general discussion

5. ADDITIONAL TOPICS FOR DISCUSSION FROM THE FLOOR:

6. COMMENTS FROM MEMBERS OF THE PANEL & CONCLUSIONS TO TAKE FORWARD:

7. NEXT STEPS:
(i) Summary of the Day
(ii) Next Meeting
(iii) Circulation of any Notes and CD/DVD
(iv) Subjects to Focus for Next Meeting and Diary Dates
(v) Panel Members to Approve
(vi) Contact Mailing List

8. CLOSING REMARKS FROM THE PANEL & CHAIR:

9. CLOSE:

For further information contact:

Di Newman on dinewman1991@hotmail.co.uk  
Or 07742 615 952

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Third Sector: Action for ME in membership row, 07.05.08

Clarification: The article on the Third Sector website: Action for ME in membership row, 07 May 2008, has erroneously presented the RSM Protest as though it had been a protest against Action for ME. The RSM Protest, organised by Gus Ryan, which took place outside the Royal Society of Medicine on the afternoon of 28 April was attended by individuals, some of whom were members of Action for ME and who hold strong views about Action for ME’s governance, modus operandi and policies. However, the Protest was organised, promoted and supported as a protest against the psychiatric / psychological bias of the presenters at the RSM’s “CFS” Conference and not as a protest against Action for ME, per se, or against Action for ME’s participation in this conference.

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Third Sector, 7 May 08

[There is a comments facility]

Website version

http://www.thirdsector.co.uk/Channels/Management/Article/807171/Action-membership-row/

http://www.thirdsector.co.uk/news/Article/807171/Action-membership-row/

http://www.thirdsector.co.uk/channels/Governance/Article/807171/Action-membership-row/

Action for ME in membership row

By Paul Jump, Third Sector, 7 May 2008

Action for ME has defended itself after a public protest from a group of disgruntled members who believe they are being denied full membership rights.

The charity, which supports people with ME - also known as chronic fatigue syndrome - said that its 7,673 fee-paying members were not entitled to vote at AGMs because they were not members in a legal sense.

A Charity Commission spokeswoman said it had dismissed a number of complaints on the issue between 2003 and 2005. “We were satisfied that there had been a misunderstanding,” she said.

The dissident members claim that the charitable company, which broke away from the ME Association in 1994, is acting unconstitutionally because it does not hold AGMs or represent members’ views.

A group of about 16 demonstrated last week outside a conference at the Royal Society of Medicine, where the charity’s chief executive, Sir Peter Spencer, was due to give a speech. They claimed the board of AfME had become dominated by people who believed ME was a psychological condition. Most ME sufferers, they said, believed it was physical.

“Only by re-establishing the democratic link between AfME and its membership will AfME gain a mandate to speak and act on behalf of us,” said Ciaran Farrell, a member of AfME. “Filling in a questionnaire is not the same as being able to vote on policy or elect trustees who see things your way.”

Richard Evans, trustee and company secretary of AfME, said the charity’s website made it clear that “being a member of AfME, the organisation, is not the same as being a member of Action for ME, the company limited by guarantee, as a company law matter”.

He said the charity’s latest AGM had been held in February and that trustees, who are the only legal members, had been invited.

A spokeswoman added that AfME required the majority of its trustees to have had ME, and that all but two of the current 10 board members were either sufferers or carers. She said the disgruntled group had been campaigning against AfME for many years.

Governance expert Judith Rich said charities should hold regular meetings with their memberships regardless of whether it was legally required. “That is the only way charities can be sure they are truly representing the views of their members,” she said.

Ends

From article comment section:

Suzy Chapman, 7 May 2008, 08:23

Many of the estimated 250,000 ME sufferers in the UK lost confidence in Action for ME (AfME) years ago and have terminated their memberships; this is reflected in their falling membership figures. They have become disillusioned with the way in which Action for ME operates and with its lack of transparency and are critical of the charity’s relationship with government and with bodies such as NICE and the MRC. They do not believe that Action for ME effectively represents their needs as sufferers of a disabling and debilitating illness.

Membership of this patient organisation carries with it no voting rights and therefore no ability to participate in trustee election processes; no ability to put oneself forward for election as a trustee through a ballot of the membership at an AGM, or to nominate others to stand for election in AGM elections; no ability to attend AGMs or EGMs held by AfME and no ability to make proposals at AGMs or to call for an EGM. Although AfME issues very occasional invitations for expressions of interest for prospective trustees, via its magazine, trustees are selected by the existing trustees, not via a ballot of the membership through a democratic election process.

So although AfME claims on its website that “…our direction and policies are informed by the voices of people with M.E.” it is only those voices to which AfME chooses to listen, since the membership, itself, plays no part whatsoever in the selection of its trustees who “…guide, advise and support the Chief Executive to implement the charity’s strategy”.

When AfME’s members become disillusioned with the organisation’s policies, with its lack of transparency and with its general view of ME as a biopsychosocial condition as opposed to a physical neurological disease, as defined by the World Health Organisation, and feel that it continually fails to represent their best interests, they are disenfranchised from influencing its governance, its policies and direction because they have no vote. All they can do is vote with their feet.

Suzy Chapman, Dorset

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Gus Ryan, 7 May 2008, 13:06

Just to clarify things, the RSM protest was about the psychiatric bias of the “Chronic Fatigue Syndrome” conference - not about AfME’s governance. I was the organiser of the protest.

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Ciaran Farrell, 7 May 2008, 21:31

I am very disappointed in the way this story has been written up, Gus Ryan is right the RSM protest was about the psychiatric bias of the conference about CFS as opposed to ME held at the Royal Society of Medicine.

The linkage to Action for ME was simply that the CEO of AfME Sir Peter Spencer was speaking for ME patients at this conference. The point is that he had no mandate to do so since Action for ME make policy behind closed doors without reference to us their members. They refuse to acknowledge that we, the members of AfME, have any constitutional rights and therefore we have absolutely no say whatsoever in AfME policy or policy making.

AfME have backed the psychological treatments for ME, Cognitive Behaviour Therapy, CBT and Graded Exercise Therapy, GET which most members of the ME community consider are either of no use or value, or make them worse, as has been demonstrated in AfME’s own surveys of its membership. However AfME continue to promote these therapies as the answer to ME by way of rehabilitative “cures”, and they have worked with government to help set up a series of nationwide centres at which these therapies are delivered as the “treatments of choice” for ME patients. AfME have even promoted these self same therapies to their membership as well, totally ignoring the results of their membership surveys.

This is just one example of a very great many of a policy that is bitterly resented by those whom AfME claim to serve and represent, but who are given no say in what AfME policy is, and this is why many within the ME community consider that AfME is part of the psychological bias against ME that the ME community are fighting. AfME gain their finance from membership subscriptions, but the bulk of it comes from government and Lottery funding, and again members of AfME have no say in what the charity applies for grants for, or the work the charity undertakes on behalf of its members who are the beneficiaries of the charity.

The view of the ME community Online was clearly expressed on internet message boards that AfME ought not to condone or legitimise the conference by their presence, and the fact AfME were speaking for patients at the conference when AfME refuse to allow any of its members to have a say in the policy or running of AfME which claims to “be run by and for people with ME” as Trustee Ondine Upton said in the recent Radio 4 series on ME is simply not the case, as AfME are run by an unelected clique, for an unelected clique who refuse to allow people with ME to have a say in the charity that is supposed to represent us, is the height of hypocrisy.

There are serious legal issues that I do not consider were dealt with in a proper or serious way, and the question I would put to all those at Third Sector is this, ‘who are membership charities actually for, their members / beneficiaries who want a say in the organisation and its policy making with the ability to elect a Board of Trustees, or a self perpetuating oligarchy of the self selecting elite who dispense funds from the public purse to pursue their Victorian vision of “charity” to the poor and needy without reference to those they claim to be helping or representing in any way?”

This raises the issue of whether the concept of “charity” is being undermined, and whether the structure of a “charity” who can do such things as AfME appear to be able to get away with render the legal form, function and operation of “charity” as a vehicle for representing the needs of a community, and seeking to provide help and resources from the public purse for a community in need.

Ciaran Farrell, ME sufferer and Steward at the RSM protest

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Observations on the RSM protest: Joan Crawford

A copy of the leaflet handed out by Joan and her husband can be downloaded by clicking on this link

RSM Conference leaflet 

The leaflet was printed off on both sides of an A4 sheet, folded to A5 - hence the pagination layout which should be read in the order:

Page 4    Page 1

Page 2    Page 3

Observations on the RSM protest

by Joan Crawford

My husband (Dewi) and I handed out leaflets to as many people as possible entering the RSM conference between 9 and 10am. We handed out more than 120 and we know they were read…

When we arrived at Wimpole Street about 8.30am we had a coffee across from the 1 Wimpole Street entrance and as were getting ourselves organised but who should walk into the cafe for coffee - the one and only [Professor] Simon Wessely - and he looked VERY SHAKY and WARY - He looked like a man on the run…………………….. He then went into the RSM at 8.55am at the Wimpole Street entrance.

The RSM sent out 3 people to speak with my husband and I in the morning. All of them being polite and reasonable - of course they had nothing to be unreasonable about. We said nothing much other than handed them our leaflets. They came back out later on to ask for a two more leaflets - wonder what they did with these!

Two doctors came out after reading our leaflet and commented on not knowing about the biomedical evidence and wasn’t it good that this was now available for doctors to help their patients. Another medic was called away and asked me if I’d like to take his place at the conference. Unfortunately, I was not free to take up his offer. I saw other doctors leaving the RSM with our leaflet still in their hands - so it was not being binned…….. hurrah.

At the same time as the CFS conference there was a press association conference and we chatted to a few of them about what were doing.

Also, my husband spoke to a guy from the press who had been inside to speak to the RSM over breakfast. His daughter has ME. We didn’t get his name, unfortunately.

Curiously, the RSM had shut the doors on Henrietta Place, which actually made it easier for my husband and I to leaflet one door, rather than two. They had also closed 3 of the 4 glass doors at the 1 Wimpole Street entrance. It was clearly not normal practice as the admin workers kept nearly walking into the locked doors in the middle….. There were 2 securing guards opening and closing the one open door and vetting folks as they came it…….. What exactly were they expecting? Petrol bombs?

Anyway, we returned later on in the afternoon to lend our support to the guys and gals outside the RSM. What troopers. It was freezing cold out of the sun. The RSM were so embarrassed that they were bringing out cups of tea and coffee…

So well done to EVERYONE for getting to the RSM yesterday. It has and will make a difference to PWME.

Joan Crawford
29 April 2008

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Changing attitudes: RSM Conference leaflet

Changing attitudes: RSM Conference leaflet

In addition to the demonstration held in the afternoon, Joan Crawford and her husband handed out leaflets to as many people as possible entering the RSM CFS Conference, between 9.00 and 10.00am in the morning.  More than 120 leaflets were handed out. 

Joan has very kindly given permission for a copy of the leaflet to be made available from Read ME UK Events.

The leaflet was printed off on both sides of an A4 sheet, folded to A5 - hence the pagination layout which should be read in the order:

Page 4    Page 1

Page 2    Page 3

Click here  RSM Conference leaflet for ME Conference leaflet in Word format

 

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RSM Conference Protest: brief report from organiser

A brief report following the RSM CFS Conference from protest organiser, Gus Ryan

I arrived with Ciaran Farrell, author of the RSM protest group letter, at about 11am.

Immediately upon arrival we noticed that the Henrietta Street entrance was shut and two guards were inside the RSM’s Wimpole Street entrance.

Annette Barclay, one of the people who signed the RSM letter, arrived at about 12:30pm.

The presentation of the two letters took place outside the Wimpole Street entrance at just after 1pm. Jo Parkinson of the RSM accepted the letter on behalf of the RSM protest group and the letter from Sheila Barry.

Copies of the RSM protest letter were handed out to anyone who was willing to accept it and placards hopefully told the public why people were not very happy with the conference.

Faces that were recognised attending the conference were Tony Britton and Sir Peter Spencer. One person said she saw Simon Wessely in the morning and a number of us thought we spotted him in the afternoon. Tony Britton spoke to some of the group but Sir Peter Spencer hurried past us.

Oddly enough, none of us saw Wessely leave. However when heading home, Ciaran and me spotted the Henrietta Street entrance open - the members entrance.

All in all, about fifteen people attended the protest but there were no more than about ten present at any one given time.

During the afternoon and quite unexpectedly, the RSM sent out a trolly laden with tea, coffee and biscuits for the protestors.

A number of people stopped and looked at the placards and a few chatted to the protestors. I talked with a student attending the RSM about the controversy over the role of mental health in M.E. He seemed very understanding. However I did enter into a slightly heated discussion with someone else attending the conference who was extolling the virtues of CBT. I pointed out to him that despite having a diagnosis of M.E., I also had a psychiatrist’s letter stating I didn’t have mental health problems. He didn’t really give me an answer. In the process, he asked for my video camera to be switched off.

I hope to have a video ready within a few days.

Gus Ryan

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A message from Sophia’s mother

May be reposted

A message from Sophia’s mother

Today, 9am, sees the launch of a website I have created in memory of my beautiful daughter who died of Myalgic Encephalomyelitis. It deliberately coincides with a conference being held by the Royal Society of Medicine on the subject of ME/CFS to which many psychiatrists and psychologists have been invited to speak. ME is a physical illness but the problem facing most ME patients is that a psychological causation of their symptoms is part of the dogma that has been foisted on them by a very small but highly influential group of psychiatrists who have established a niche market in what is a controversial but highly debilitating illness.

In June 2003 a warrant was granted through Brighton Magistrates Court that resulted in the sectioning of my daughter, Sophia Mirza, because she would not accept psychiatric treatment for her physical condition, Myalgic Encephalomyelitis (ME).

Despite our Solicitor being confident that there were no grounds for a warrant to be issued, a warrant was granted and my very ill daughter was sectioned against her will until a Tribunal sanctioned her release almost two weeks later.

My daughter never recovered from the shock of this incarceration and died in November 2005. The coroner’s verdict recorded that she died of CFS/ME.

Six doctors and a social worker were among the people who were involved in Sophia’s case.

I have tried, without success, to gain justice from the GMC and Social Services over the dreadful treatment my daughter received, but to no avail.

I have written to two Attorney Generals, numerous MPs and solicitors - again with no result. It seems that ordinary people like me and my daughter can be treated in the most appalling way and no-one is  accountable.

I have therefore decided to publish all letters and communications appertaining to my daughter’s ordeal at the hands of the authorities, in an effort to ensure that this should never happen again to someone suffering from ME.

I hope that the doctors and social workers involved in my daughter’s care will now reflect on what they did and learn from their mistakes and intransigence. I hope that other professionals will also learn lessons from what I have published and that no other person with ME will be treated so callously.

For more information see  www.sophiaandme.org.uk 

Criona Wilson

28th April 2008

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Final call for the RSM Protest

From RSM Protest organiser, Gus Ryan

When is it?

Monday 28th April 2008 - 1pm to 6pm

Where is it?

On the corner of Wimpole Street and Henrietta Street in London:

Location

The members entrance is in Henrietta Street.
The public entrance is in Wimpole Street.

What’s happening?

Two letters will be presented to the RSM - one on behalf of the RSM CFS conference protestors and one from Sheila Barry - possibly soon after 1pm. The RSM have agreed to accept the letters.

I will be bringing a video camera to record people’s stories for broadcast on YouTube. I have reason to believe that at least another two people will be attending with video cameras - one of them hoping to record footage for a documentary about problems people with M.E. have with getting the illness recognised as a physiological condition.

People have emailed me saying that they will be bringing placards and handouts.

If at all possible, could you please bring a photo (if you’re a carer) and a camera. Placards and handouts would be very much appreciated as long as they are about the mental health bias in M.E. treatment.

At the risk of stating the obvious, it would help if the banners/placards were easy enough for the uninitiate members of the public to understand the issue.

Banners/placards and handouts would also have to be inoffensive. My contact at the Met police told me that offensive material would not be welcome so even though you may intensely dislike the proceedings in the RSM and especially dislike the participants (!), you’d do us all a favour by not getting us into trouble.

Why should I attend?

Is a reminder necessary?

Merely in the last few weeks, a psychiatrically-biased conference has been planned about something that has been classed as a neurological disorder for nearly four decades. It has then been defended by the Chief Executive of the RSM.

Again, this is after nearly four decades.
Do you find that acceptable?

As a PWME, how do you see your immediate future?

There is a danger that people might assume that they don’t have to attend the protest because somebody else will.

There are no guarantees that people will attend the protest.

Please don’t take that risk.

A very public demonstration of opposition is surely a more effective and eye-catching method than many others.

RSM protest basics:

YouTube video
enquiries: Email Protest Organiser Gus Ryan

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The Read ME UK Events site, the “On a Postcard, Please” Campaign and the “Squeeze” graphic are initiatives independent of the RSM Protest on 28 April. All enquiries from demo attendees and the media regarding Monday’s demonstration should be addressed to the Organiser, Gus Ryan, and not to Read ME UK Events.

All good wishes for Monday’s demo

 

All good wishes to the RSM Protest Group for Monday’s demo

Demonstration | Royal Society of Medicine | 1.00pm to 6.00pm
1 Wimpole Street London W1G 0AE
Monday 28 April 2008

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Presentation letter from Mrs Sheila Barry to Dean, RSM

Demonstration | Royal Society of Medicine | 1.00pm to 6.00pm

1 Wimpole Street London W1G 0AE

Monday 28 April 2008

A personal letter from Mrs Sheila Barry to the Dean, Royal Society of Medicine, will also be presented to the Royal Society at the demonstration on Monday, 28 April at 1.00pm.

 

Presentation letter from Mrs Sheila Barry

24th April 2008

Dr John Scadding, Dean
Royal College of Medicine
1 Wimpole Street
London WIG OAE
Dear Dr Scadding

RSM Conference 28th April 2008

You will have received many letters from ME sufferers, and their carers, expressing dismay at the unbalanced list of speakers at this conference.

I am writing on a more personal level. My daughter, my only child, was a long term ME sufferer. She died by her own choice on her 27th birthday. She walked out of her flat in the middle of the night, the first time she had been out alone for eight years and took an overdose. It was 9 days before her body was found behind a church, 250 yards from her flat. The police later admitted that they had failed to search there. It was 4 years later before an Inquest was heard and ME was not even mentioned as a cause of death. It was simply recorded as ‘she killed herself’. Nobody seemed interested as to why she took this action. It is impossible to ascertain just how many sufferers have taken such action as ME is not recorded on the Death Certificates. To my knowledge only two people in UK have had M.E. recorded as cause of death on their Death Certificates - Annabel Senior and Sophia Mirza, both of whom were long term sufferers and died in extremely tragic circumstances.

My daughter’s health was, in fact, considerably better than it had been for years but she was no way at a stage where she could return to work. She would soon have to complete yet another application for DLA if she wanted to be able to maintain her flat and independence. She felt alone, isolated and with little hope for the future. Appealing for Benefits with an ‘invisible’ illness puts sufferers in an impossible position. They are treated in such a horrendous manner by the Benefit Agency staff that my daughter said that she would never ever apply again. Her action meant that she never had to.

Her death has had a most devastating effect on our family. I have since discovered that she was the third ME sufferer in this area to take such action. I was contacted by hundreds of sufferers from all around the country who felt that they had little to continue to live for. They did not want to live for another 2 or 3 decades with such a cruel illness. Reading their e-mails was a most harrowing experience.

I believe that the actions of the psychiatric lobby to have ME classified as a psychiatric illness and to prevent research into the cause, and a diagnostic test were the major reason that my daughter chose to end her life

Yours faithfully

Sheila Barry

 

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Open letter to the President of the RSM

Demonstration | Royal Society of Medicine | 1.00pm to 6.00pm

1 Wimpole Street London W1G 0AE

Monday 28 April 2008

An open letter to the President of the Royal Society of Medicine which has been prepared on behalf of The RSM Protest Group will be presented at approximately 1.00pm.

Open letter to President Word version

Open letter to President PDF version

You can read the letter in full below:

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

The RSM Protest Group

An open letter to the President of the Royal Society of Medicine, The Dean, Council Members, Fellows and Members of the RSM, Conference Organisers as well as attendees at the RSM Conference on “Chronic Fatigue Syndrome” at the RSM on 28th April 2008

The President,
The Royal Society of Medicine,
1 Wimpole Street,
London W1G 0AE.

Date : 28th April 2008

Re: The RSM on April 28th on “Chronic Fatigue Syndrome”

Dear Prof. The Baroness Finlay of Llandaff,

We are individual members of the Myalgic Encephalomyelitis, or ME community of sufferers and carers for those with ME which also include those with positions of responsibility in various organisations. We few who are present at this demonstration here today represent many people from our community who were unable to attend due to the profound disability and debility produced by ME. We want to convey to you that the CFS conference has caused a great deal of concern to our community because of :-

Follow-up to “Concerns about the RSM Conference”: M Williams

A Follow-up to “Concerns about the RSM Conference”

By Margaret Williams

25th April 2008
Further information has come to light that is relevant to “Concerns about the RSM Conference on 28th April 2008 on ‘CFS’”.

See: http://www.meactionuk.org.uk/RSM_Conference_April_2008.htm

On 24th April 2008 a meeting entitled “The future of regulating health professionals - the patient’s perspective” was held at Avonmouth House, 6, Avonmouth Street, London SE1 6NX under the auspices of The Council for Healthcare Regulatory Excellence in conjunction with the Department of Health.

The UK Chief Medical Officer (CMO), Professor Sir Liam Donaldson, made what may be an important announcement. He referred to the matter that was mentioned in “Concerns about the RSM Conference”, namely the issue of clinical standards: he made it plain that the Scottish Government’s development of clinical standards is a pilot scheme and - importantly - he said that it will be extended to all parts of the United Kingdom.

The CMO did not mention “CFS/ME”, nor was it mentioned by anyone else on the platform, but it was brought up in the Working Group session.

Given that the Scottish Government now recognises “CFS/ME” as being a chronic neurological disorder under the auspices of the Long Term Conditions Unit and is working on clinical standards for neurological conditions, including access to investigations by neurologists, it may be expected that when the Scottish “clinical standards” are implemented throughout the UK, the rest of the UK will also recognise “CFS/ME” as a neurological Long Term Condition.

After all, this would be in accordance with the UK’s inclusion of “CFS/ME” in the National Service Framework (NSF) as a neurological disorder: the NSF for people with long-term neurological conditions was launched by the UK Department of Health on 10th March 2005 and it specifically includes people with ME/CFS. This has been confirmed more than once: see for example, Hansard for 6th March 2006 (HC column 1200W), where the then Parliamentary Under Secretary of State for Health, Liam Byrne MP, stated categorically: “The NSF sets out a clear vision of how health and social care  organisations can improve the quality, consistency and responsiveness of their services and help improve the lives of people with neurological conditions, including CFS/ME”.

Those exact words were reiterated on 12th May 2006 by Ivan Lewis MP, Parliamentary Under Secretary at The Department of Health, and he added: “Those most severely affected by CFS/ME have access to the full range of health and social service support as outlined in the national service framework for long-term conditions” (Hansard, 12th May 2006).

Sadly, such promises remain empty. Indeed, they may continue to remain empty because the aim of the RSM conference on 28th April seems intended to “educate” GPs that ME does not exist and that “CFS” is a behavioural disorder that should be managed by the recommendations for psychotherapy that are set out in the NICE Guideline.

It remains to be explained how the same neurological condition that is included in the NSF can be deemed by the psychiatrists who will be speaking at the RSM conference to be a mental health disorder and how, together with the Guideline Development Group who produced the NICE Guideline, those who planned the RSM conference (described by Mr Ian Balmer, Chief Executive of the RSM, as a “broad-based academic planning group”) can so resolutely ignore the fact that “CFS/ME” is already included in the NSF as a long-term neurological disorder.

The matter is now so serious that the High Court has ordered a full day’s hearing to determine permission to proceed to Judicial Review. This is an exceptionally long hearing for permission, which is usually only half an hour. Perhaps the RSM should take note.

www.meactionuk.org.uk

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Dr Scadding and The James Lind Alliance: Two

Dr Scadding and The James Lind Alliance: Two

Ed Notes:

1] Dr John Scadding, Dean of the RSM, is a Member of the James Lind Alliance Strategy and Development Group, 2008.

See the May 2007, Society Guardian article “Turning the tables” by Sophie Petit-Zeman, “Dr John Scadding, RSM dean, [who] had recently been involved in founding the James Lind Alliance (JLA), an initiative that enables patients and clinicians to work together to agree which uncertainties about  treatment matter most and therefore should be research priorities.”
http://www.guardian.co.uk/society/2007/may/21/health

Dr Scadding chaired the Planning Committee for the RSM’s “CFS” Conference. The Planning Committee  comprised Dr John Scadding (Chair), Ms Bina Arpino (RSM Admin), Professor Peter White, Professor Simon Wessley, Professor Kam Bhui and Professor Matthew Hotopf.*

*RSM CFS Conference Programme:
http://rsmcfsprogramme.notlong.com

According to a 2007 RSM Press release, Dr Scadding is a Consultant neurologist at the National Hospital for Neurology and Neurosurgery, Queen Square and an Honorary Senior Lecturer at the Institute of Neurology. He was the RSM’s Associate Dean from 2002 and became Dean of the Society  in October 2006.

There are at least three separate accounts on the internet by ME patients who have reported very negative experiences as in-patients and out-patients of the National Hospital, London.

2] Dr Sophie Petit-Zeman, Director of Public Dialogue, Association of Medical Research Charities is a Member of the James Lind Alliance Strategy and Development Group, 2008.

According to her Guardian Profile, “Sophie Petit-Zeman is a writer and journalist specialising in health, science and social care. Dr Sophie Petit-Zeman migrated from neuroscience and mental health research to communications and journalism. An award-winning writer, she has worked for all the UK broadsheets, a host of specialist journals, for the NHS, private and voluntary sectors in the UK and abroad.”

3] Professor Stephen Holgate, Professor of clinical pharmacology at Southampton University is a Member of the James Lind Alliance Strategy and Development Group, 2008.

Professor Holgate has recently been named chair of “a new multi-disciplinary panel set up by the Medical Research Council which is to focus on the subtypes and aetiology of ME/CFS as part of a plan to fertilise cross-disciplinary research activity in this field.”

According to a recent CFSR Foundation newsletter, Professor Holgate has taken a keen interest in ME/CFS and is a member of the research committee advising Dr Kerr and his team.  He has also co authored several papers published on gene research studies.

4] Sally Crowe Director, Director, Crowe Associates is a Member of the James Lind Alliance Strategy and Development Group, 2008.

According to the 2007, Sophie Petit-Zeman Guardian article, Ms Crowe chairs the James Lind Alliance strategy and development group.

Ms Crowe is project consultant to the PRIME (Partnership for ME Research) Project and a member of the PRIME Steering Group.

Dr Derek Pheby, National ME Observatory Project Co-ordinator and AfME have refused requests to identify those who comprise the ME Observatory Steering Group and the Management Group or who are otherwise involved in the Project, together with the organisations they represent (where appropriate), and their functions within the Project Group or within the Project as a whole; neither Dr Pheby nor AfME has been willing to confirm by what process seats within the Steering and Management Groups were allocated.

PRIME has confirmed to me that both Sally Crowe, PRIME, and Douglas Badenoch, Project Manager, Minervation Ltd, hold seats on the ME Observatory Steering Group. Kirsty Haywood, the researcher who led the PRIME review of Patient-Reported Outcome Measures was also allocated a seat on the ME Observatory Steering Group.

http://www.lindalliance.org/pdfs/SDG%20members_2008.pdf

JAMES LIND ALLIANCE
STRATEGY AND DEVELOPMENT GROUP MEMBERS 2008

Miss Lizzie Amis Project Manager, Patient and Public Involvement Programme, NICE

Dr Brian Buckley Primary Care Researcher, Cochrane Fellow and Chairman of Incontact (Action on Incontinence)

Sir Iain Chalmers Editor, James Lind Library

Mrs Sally Crowe Director, Crowe Associates

Prof Glyn Elwyn Chair, Primary Care, Cardiff University

Mr Lester Firkins Business consultant, Medical Research Council

Ms Jenny Hirst Trustee, Insulin Dependent Diabetes Trust

Prof Stephen Holgate Physician, Southampton General Hospital

Dr Susan Kerrison Assistant Director Research and Development University College London Hospitals Trust

Dr Sandy Oliver Editor, Cochrane Consumers & Communication Review Group

Mr Nick Partridge Chair, INVOLVE

Dr Sophie Petit-Zeman, Director of Public Dialogue, Association of Medical Research Charities

Dr John Scadding Dean, Royal Society of Medicine

Dr Peter Sneddon Head of Research Programmes, Department of Health

Dr David Tovey Editor, Clinical Evidence, BMJ

Mrs Jenny Versnel Executive Director of Research and Policy, Asthma UK

Dr Chris Watkins Board Programme Manager, Medical Research Council

Roger Wilson Associate Director PPI, UKCRN; Consumer Member, NCRI Sarcoma CSG; Chair, Prevention Research Advisory Board, NPRI.

Ms Philippa Yeeles Programme Manager, UK Clinical Research Collaboration

Ms Pamela Young Senior Programme Manager, National Coordinating Centre for Health Technology Assessment

Secretariat support
Ms Patricia Atkinson Administrator, James Lind Alliance Secretariat

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Dr Scadding and The James Lind Alliance: One

Dr Scadding and The James Lind Alliance: One

From April 2004

http://www.jameslindlibrary.org/pdf/james_lind_alliance.pdf

The James Lind Alliance

A coalition of organisations representing patients and clinicians collaborating to confront important uncertainties about the effects of treatments

Co-convenors

INVOLVE  
The Royal Society of Medicine
The James Lind Library

Introduction

Two hundred and fifty years ago there were many conflicting opinions about how to treat the deadly disease scurvy, and these disagreements were reflected in wide variations in practice. The Royal College of Physicians of London recommended dilute sulphuric acid; the Admiralty favoured vinegar; other proposed treatments ranged from burying patients up to their necks in the ground, through to patented concoctions made from secret recipes.

Faced with this confusing situation, James Lind, a Scottish naval surgeon, wondered how to treat patients dying from scurvy. He decided to confront his uncertainty by treating his patients within a controlled clinical trial comparing six of the proposed remedies, including those favoured by the Royal College of Physicians and the Admiralty. Lind’s controlled trial showed that oranges and lemons were dramatically better than those favoured by the authorities of the day, and the other supposed treatments with which he had compared them.

Important uncertainties about the effects of treatments exist today, and, as in Lind’s day, these are reflected in variations in clinical practice. These uncertainties must be confronted to help improve the quality of care provided for current and future patients using the National Health Service. The James Lind Alliance has been established to foster discussion among patients and clinicians (doctors, nurses, therapists, and others who treat patients) about these variations in practice, and to identify which uncertainties about the effects of treatments are sufficiently important that they should be addressed in clinical trials. The Alliance is being co-convened initially by INVOLVE (formerly Consumers in NHS Research), the Royal Society of Medicine, and The James Lind Library.

Exploratory meetings

An ongoing series of meetings will be held at the Royal Society of Medicine to help promote discussion about how important uncertainties about the effects of treatments can be identified and confronted. Each of these meetings will be co-convened by a partnership consisting of an organisation representing patients and an organisation representing clinicians, both sharing an interest in a particular health problem or group of related problems. Every meeting will be facilitated by a chair from outside the field concerned, and will have the following elements:

• Declarations of competing (financial) interests by all contributors
• Presentation of data on variations in practice, suggesting collective uncertainty
• Presentation of the results of systematic reviews relevant to practice variations
• Discussion about how to confront important residual uncertainties
• Agreement on an action plan by the organisations convening the meeting

Annual meeting of the James Lind Alliance

The James Lind Alliance will be formed from a gradually increasing number of partnerships between organisations representing patients and organisations representing clinicians, working together to confront important uncertainties about the effects of treatments. The first annual meeting of the Alliance will be held as part of the annual Clinical Excellence conference, on Wednesday 1 December 2004, at the International Convention Centre in Birmingham. The meeting will provide an opportunity for members of the Alliance to share experiences of progress and obstacles, and to identify common themes.

The annual meeting will also be used by members of the Alliance to inform representatives of the facilitating and regulatory organisations able to promote progress and help overcome obstacles experienced by the patient-clinician partnerships. These facilitators/regulators include:

• the Department of Health
• NHS Trusts and Strategic Health Authorities
• organisations that fund research (particularly the MRC and the NHS Technology Assessment Programme
• clinical researchers
• academia, including the Higher Education Funding Council
• information providers and educators (including the print, broadcast and electronic media)
• the Medicines and Healthcare products Regulatory Agency
• the research ethics committee system

INVOLVE, the Royal Society of Medicine, and The James Lind Library are coconvening the James Lind Alliance for an initial period of two years. If the Alliance has begun to fulfil its objectives by the end of 2006, Alliance members (pairs of organisations representing patients and clinicians) will then assume responsibility for the Alliance’s management and development.

Coalitions of patient and clinician organisations in the UK interested in developing the James Lind Alliance should write jointly to:

Patricia Atkinson
Administrator, James Lind Alliance Secretariat
Summertown Pavilion
Middle Way
Oxford OX2 7LG.

Email: patkinson@jameslindlibrary.org

Nick Partridge, Chair, INVOLVE (Consumers in NHS Research) www.invo.org.uk

John Scadding, Associate Dean, Royal Society of Medicine www.rsm.ac.uk 

Iain Chalmers, Editor, James Lind Library www.jameslindlibrary.org 

8 April 2004

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Concerns about the RSM Conference on “CFS”: M Williams

Ed: Note: In her commentary, below, Margaret Williams refers to RSM Dean and Chair of RSM CFS Conference Planning Committee, Dr John Scadding’s attendance at a conference on 17th September 2007, in London, entitled Should patients Tell Researchers What To Do? If so, How? arranged by the James Lind Alliance, in conjunction with the Association of Medical Research Charities.

As previously mentioned on this site, Dr Scadding also participated in the NICE 2006 Tackling Health Priorities Annual Conference and Exhibition, at the ICC in Birmingham, in which, incidently, Dr Ian Gibson, MP and Ms Sally Crowe (PRIME) also took part.

http://www.healthlinks-events.co.uk/nice2006/day2indepth.htm

On Day 2 of the conference, Dr Scadding chaired the session: Tackling treatment uncertainties together, In association with James Lind Alliance

Bringing patients and clinicians together in “working partnerships” to identify and prioritise the most important unanswered questions  

Ensuring that those who fund health research are aware of what matters to patients and clinicians

An update on progress, sharing the successes and disappointments

In the chair
Dr John Scadding, Consultant Neurologist, National Hospital for Neurology and Neurosurgery

Speakers
Sally Crowe, Director, Crowe Associates
Mark Fenton, Editor, DUETs, James Lind Alliance
Sophie Petit- Zeman, Director of Public Dialogue, Association of Medical Research Charities

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Concerns about the RSM Conference on 28th April 2008 on “CFS”

By Margaret Williams
24th April 2008 

There is international concern about the forthcoming conference on “CFS” (chronic fatigue syndrome) to be held at the Royal Society of Medicine (RSM) on 28th April 2008 because there can be little doubt that the conference is a “Wessely School” initiative that is intended to promote the psychosocial model of “CFS” and to “educate” GPs accordingly. The psychosocial model denies the reality of myalgic encephalomyelitis as a distinct neurological disorder and subsumes it within “CFS/ME” as a behavioural disorder.

Such is the concern that many representations have been made to the Dean of the RSM, Dr John Scadding. People have expressed dismay that the Royal Society of Medicine should be providing a platform for a group of psychiatrists who are committed to eradicating ME as a distinct medical disorder and who persistently dismiss the substantive evidence that it is not a primary mental disorder but a serious and complex multi-system organic disorder.

In addition to countless postings on the internet, a postcard campaign has been organised for people to write to the Dean; there have been letters to the press; a demonstration outside the RSM has been organised to take place on the day of the conference, and one medical practitioner (himself a Physician-in-Waiting to the Royal Family) has written to Her Majesty the Queen suggesting that such is the outrage, she may wish to consider withdrawing the Royal patronage from the Society. Most of the UK ME/CFS charities have expressed profound disapproval of the undeniable psychiatric bias of this RSM conference.

In response to some of those publicly expressed concerns, the Chief Executive of the RSM, Mr Ian Balmer, wrote on 23rd April rejecting the “supposed bias” of the conference on “CFS”: “Our agenda was drawn up to reflect current thinking on its diagnosis and treatment, as outlined in the NICE guidelines. The content of the meeting is well-grounded in evidence-based medicine and has been planned by a broad-based academic planning group”.

This has further fuelled the international concern, because innumerable people (including not only well-informed patients but also clinicians and medical scientists who have direct knowledge of ME/CFS) believe it is simply untrue that the conference content is “well-grounded in evidence-based medicine”.

It will be known by some in the ME community that there is more than one application for Judicial Review of the NICE Guideline currently before the High Court in London.

One application for judicial review has been brought by two ME sufferers which is supported by expert evidence from Professor Malcolm Hooper and Dr William Weir. The individuals bringing the case are represented by a premier Public Law firm, Messrs Leigh Day & Co in London. Leigh Day & Co are leaders in the field of claimant public law and recognised as having particular expertise in the field of health care, being ranked as number one in Chambers’ Directory (the contact being Jamie Beagent). They have submitted substantial evidence to the High Court that the NICE Guideline was not properly founded on “evidence-based medicine” — and thus by implication, the content of the RSM conference cannot be. In a recent Order, the High Court (Mr Justice Stanley Burnton) recognised that despite NICE’s assertions that the legal case is without merit, the evidence is so extensive that the Court will hold a day’s hearing to consider the case in more detail. The Order states: “The Court is usually cautious to intervene in matters involving medical or other scientific judgment. Be that as it may, the evidence is sufficiently substantial for the Court to be assisted by oral submissions”.

It will be recalled that Professor Hooper and Horace Reid were amongst the first to expose the inadequacy of the York Systematic Review upon which NICE relies for its so-called “evidence” of the efficacy of its recommended management strategy http://www.meactionuk.org.uk/FINAL_on_NICE_for_Gibson.html

There is in existence a letter dated 17th April 2008 from The Scottish Government’s Healthcare Policy and Strategy Directorate Healthcare Planning Division (reference 2008/0010027OR) signed by Fiona McGrath of the Long Term Conditions Unit. It states, amongst other things: ” One of the most effective ways of improving services for long term conditions such as CFS/ME is by developing clinical standards. NHS Quality Improvement Scotland (NHS QIS) is working on clinical standards for neurological conditions, including access to investigations by neurologists. NHS QIS expects the draft standards to be ready for consultation in autumn 2008, with publication of the final version likely to take place in the summer of 2009″.

The whole two page letter is about CFS/ME, so questions arise as to how and why “CFS/ME” is now officially regarded as a chronic neurological disorder under the auspices of the Long Term Conditions Unit in Scotland, but as a behavioural disorder under the aegis of mental health policy by the RSM, the Medical Research Council (MRC) and NICE in England?

A copy of the letter has been sent to the Dean of the RSM asking him to explain this discrepancy, but so far there has been no acknowledgement or response.

This is all the more pertinent in that it was the same Dr John Scadding who on 17th September 2007 attended a conference in London entitled “Should patients Tell Researchers What To Do? If so, How?” that was arranged by the James Lind Alliance in conjunction with the Association of Medical Research Charities; the meeting had as its main topic the importance of expert patient input into medical research and how this can best be achieved. It was Dr Scadding who chaired the afternoon Working Group session to establish an effective way of implementing patients’ input. One question that was put before the panel was: “What would panel members suggest could be done to ensure that major UK funding and other Institutions — like the Medical Research Council, NICE, the Centre for Reviews and Dissemination at York, the National Health Service and the Department of Health — take more notice of what patients say?”.

There can be no doubt that this issue was raised and that Dr Scadding was fully aware of the immense concerns amongst ME/CFS patients, so it is all the more disturbing that he has apparently agreed not only to host this controversial conference at the RSM, but that he is also scheduled as a speaker and co-chair of the event. As a result, it is difficult to reconcile his apparent sympathies with patients’ needs to be heeded with his support for and involvement with a conference to promote the psychiatric model of “CFS/ME”.

A letter setting out concerns about the RSM conference has also been sent to the Parliamentary Under Secretary of State for Health (Mrs Ann Keen MP), drawing her attention to the widespread disquiet about the forthcoming RSM conference and pointing out that numerous large-scale patient surveys have shown that NICE’s management regime of cognitive behavioural therapy (CBT) is largely ineffective and that graded exercise therapy (GET) is potentially harmful, and that it is therefore inappropriate for the RSM conference to promote such a regime. Her attention was drawn to the substantial international evidence of demonstrable and replicable biomedical abnormalities that Wessely School psychiatrists continue to ignore or dismiss. It will be recalled that at the All Party Parliamentary Group on ME that was held on 22nd January 2008, Mrs Keen went on record saying that she believed ME/CFS to be a neurological disorder.

A copy of the letter from the Scottish Government was also enclosed with the letter to Ann Keen MP, requesting that she address the discrepancy between the Scottish and English government’s approach to the same disorder that Dr Scadding has so far failed to address.

Margaret Williams

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RSM Postcard Campaign: Final reminder

With just a few posting days left before the Royal Society of Medicine’s “CFS” Conference, this will be the final reminder about the “On a Postcard, please” Campaign.

For more information about the conference and for copies of the Postcard Campaign Flyer click the links, below

Word Postcard Flyer Word doc (55KB)
PDF Postcard Flyer PDF (105KB)

PDF RSM CFS Conference programme

Links to position statements from AfME, MEA, IiME, RiME, TYMES Trust and 25% ME Group

Address your postcard or letter to:

If you haven’t written yet, there’s still time to let the Dean of the RSM know what you think about this conference.

Although new material will continue to be added to the site, this will be the final reminder for the Postcard Campaign.

I’d like to thank everyone, including local and regional ME support group committees and their members for sending postcards and letters to the RSM. I’d also like to thank website owners, bloggers, internet forum managers, email list owners, ME support group committees and individuals who have assisted with the promotion of this campaign, either via the internet or by including campaign flyers and information about the conference in their newsletters and email contact lists or have helped raise awareness about the concerns surrounding this conference in other ways. I know that many of you have also encouraged your friends, family and carers to send in messages to the RSM, as well - your enthusiasm and support for this campaign has been very much appreciated.

I wish Gus Ryan, organiser of the demonstration scheduled for the afternoon of Monday, 28 April (1.00pm to 6.00pm outside the RSM building) all good wishes for a fine day and a successful event. Media enquiries about the demonstration and from those planning to attend this event should be addressed to Gus Ryan

I finally got my own card off, yesterday. If you haven’t sent yours in yet, there’s still two posting days left!

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Can AfME claim a mandate to represent “The patient perspective”?

From Suzy Chapman & Ciaran Farrell

19 April 2008

Can AfME claim a mandate to represent “The patient perspective”?

This week, Third Sector website highlights interesting figures from AfME’s (Action for ME) 2006/2007 year end accounts:

The numbers: Action For ME

By Patrick McCurry, Third Sector, 16 April 2008

“Action for ME works to improve the lives of people with chronic fatigue syndrome, or myalgic encephalopathy. Total income - £693,000 for the year ending 31 March 2007, compared with £956,000 for the previous 12 months. Highest salary - The interim chief executive was paid £55,000. Reserves policy - The charity seeks to hold free reserves equivalent to at least three times its monthly running costs…”

You’ll need to register here with Third Sector site to read the rest of this item.

[Note: "Interim chief executive" refers to Ms Trish Taylor, formerly Vice-chair for governance, who took on the position of Acting Chief Executive in the wake of Chris Clark's resignation and prior to Sir Peter Spencer taking up his position as the new CEO of AfME.  According to the job specification, the vacancy for a CEO attracted a salary in the region of 70K - not a bad remuneration for someone who has told us that he felt it was time to give something back to society.]

Download a copy of AfME’s 2006/2007 Report and Accounts, as filed at Companies House, here
Download a copy of AfME’s 2006/07 Annual Review here

On Monday, 28 April, Sir Peter Spencer will be addressing the Royal Society of Medicine’s “CFS” Conference - at 2.00pm Sir Peter will be representing “The patient perspective”.

Professor Anthony Pinching, Principal Medical Adviser to AfME, is acting as one of the session chairs for this meeting; other sessions are to be chaired by Professor Mansel Aylward (Director, Unum Centre for Psychosocial and Disability Research, Cardiff University), Professor Kam Bhui (Department of Psychiatry, Queen Mary School of Medicine and Dentistry) and Dr John Scadding, Dean of the RSM and chair of the CFS Conference Planning Group.

If you don’t already have a copy of the RSM’s “CFS” Conference Programme you can download a PDF here: http://rsmcfsprogramme.notlong.com

It is of considerable concern to many of us within the ME community that “The patient perspective” is not being given by ME patients or carers, themselves, but by the Chief Executive of what many of us consider to be an undemocratically run organisation, and that this has been the case for many years.

While Sir Peter is enjoying his lunch in the RSM’s dining rooms and honing his address for the conference, will he consider this perspective?

That AfME claims - in breach of its own governing document, its Memorandum & Articles of Association - that its members are merely passive “subscribers” to its magazine rather than members of the company and charity, Action for ME;

That AfME has not held a public AGM to which the membership of AfME has been invited to attend for many years;

That AfME’s trustees are not elected though free, fair and democratic trustee election processes;

That as a result, AfME’s members have for many years been denied the voting rights to which they are entitled under Charity and Company Law;

[ For detailed analysis of AfME's modus operandi see the ONE CLICK AfME Dossier ]

That AfME operates within a culture of secrecy and that a good example of this is their handli