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Update on the RSM’s “Medicine and Me” conference

Posted in AfME/Action for ME, AYME, Invest in ME, ME Association, Royal Society of Medicine, The Young ME Sufferers Trust, Uncategorized on September 9, 2008 by meagenda

Update on the planning of the Royal Society of Medicine’s “Medicine and Me” conference

Note that this proposed event at the RSM’s London conference venue would be one in a series of “Medicine and Me” events for topics around various medical conditions aimed at patient group participation held by the RSM, over the past few years. The title does not refer to “Medicine and M.E.” so this meeting would, ironically, be a “Medicine and Me” event on “CFS” or possibly “CFS/ME”, though the RSM did not use the terms “CFS/ME”, “ME/CFS” or “ME” in its April “CFS” Conference.

Further information about the format of these patient events, which in the past, have been held in association with just one patient organisation, not several, can be found here

Some information about this event is beginning to trickle out. In the summary of its September Board meeting, the ME Association reports:

ROYAL SOCIETY OF MEDICINE (RSM) – 2009 MEDICAL MEETING FOR PEOPLE WITH ME: Charles Shepherd, along with representatives from four other national support charities (AfME, AYME, Tymes Trust, 25% Group), will be attending a further planning meeting at the RSM on Thursday September 4th. At present, it looks as though this half day meeting aimed at people with ME, and planned by people with ME and charity representatives, will be taking place in Spring or early Summer 2009. The planning meeting will be deciding on the content of the paired presentations part of the programme and the choice of medical speakers who will be invited to participate.”

Meanwhile, Invest in ME has concerns about the selection process through which organisations were invited to participate in the planning of this event and the rejection of its offer to participate in the planning stages of this event.  In its September newsletter, Invest in ME reports:

RSM – Medicine and ME

“After the Royal Society of Medicine announced their intention to hold a conference on CFS in April Invest in ME contacted the then President of the RSM, Baroness Finlay, and passed to her factual information regarding ME/CFS. We also invited her to our London conference and offered help in planning a Medicine and ME conference which we were told the RSM was considering.

“We contacted the Baroness again in July and our letter was passed to Dr John Scadding.

“Dr Scadding replied to our offer to help by stating that only the following organisations were to be invited to be in the planning of this event – the 25% Group, AfME, AYME, MEA and Tymes Trust.

“We replied to Dr Scadding that we thought we could offer valuable experience in planning such an event and have been working on behalf of patients contacting us for help. We weren’t sure why those organisations alone were chosen or why an arbitrary number of organisations seems to have been invited.

“Dr Scadding rejected our offer, having “sought the advice of a number of others”. We can only guess who these “others” are who are advising him.

“Dr Scadding went on to describe the reasons for IiME’s exclusion as –

“… 1. The group is already very large, with the 5 patient charities, patients with CFS / ME and the necessary RSM staff. Very large groups often have difficulty in reaching a consensus in a committee situation. I have planned many Medicine and Me meetings, usually in partnership with just one patient charity / support group. Patients attending the subsequent Medicine and Me meetings have not complained of bias or exclusion of their interests.

2. I am reasonably confident that the group is representative of CFS / ME sufferers overall, and that no interests will be forgotten, excluded or ignored.

3. The programme for the Medicine and Me conference must be driven by the patients on the planning group.

I think we need to be realistic about what can be achieved in a Medicine and Me meeting. It lasts only about three and a half to four hours. Three or four key areas of interest are nominated by the patients on the planning group; patients speak first on these and each is followed by an expert response. The topics may be about diagnosis, research, treatments, access to treatment, stigma, prognosis, etc etc. During the concluding lengthy panel discussion, any matter of concern about the condition to those in the audience can be raised, not just those forming the focus of the patient presentations.

It is clearly impossible in the time available during the meeting to cover every aspect of any disease, and patients have often requested further meetings (which we are happy to consider, but we need to be mindful of the multitude of chronic diseases that exist, each deserving of a Medicine and Me meeting).

I cannot predict at this stage the topics that will be chosen within CFS / ME to form the focus of the Medicine and Me meeting, but if you would like to make some suggestions now, I would be very pleased to float these at the planning group meeting.

I am aware of the interest of Invest in ME in promoting biomedical research, and I am sure this will be discussed. Indeed, it may well be that this is one of the topics chosen, but that is for patients to decide…”

As far as I can tell, the RSM has not made webcasts and PowerPoint presentations of previous “Medicine and ME” events available on its website, as it did following its “CFS” Conference, in response to pressure from the ME community.

Many of those who would have liked to have attended this “Medicine and ME” event will be disenfranchised because they are too unwell to travel, because of the cost of travel and conference tickets or because like me, they have committments as carers.

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AfME magazine, article New Trustees

Posted in AfME/Action for ME, Uncategorized on May 12, 2008 by meagenda

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:

“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.”


Reproduced with permission of

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


Reproduced with permission of

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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Third Sector AfME article: Comments 4 and 5

Posted in Uncategorized on May 9, 2008 by meagenda

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.


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

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

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.”


“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.


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


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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Observations on the RSM protest: Joan Crawford

Posted in AfME/Action for ME, CBT/GET, NICE CFS/ME guideline, Prof Peter White, Prof Simon Wessely, Royal Society of Medicine, Sir Peter Spencer, Uncategorized on April 30, 2008 by meagenda

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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RSM Conference Protest: brief report from organiser

Posted in AfME/Action for ME, CBT/GET, ME Association, NICE CFS/ME guideline, Prof Peter White, Prof Simon Wessely, Royal Society of Medicine, Sir Peter Spencer, Uncategorized on April 29, 2008 by meagenda

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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All good wishes for Monday’s demo

Posted in Royal Society of Medicine, Uncategorized on April 26, 2008 by meagenda


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

Graphic copyright meagenda

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About Read ME UK Events site

Posted in Uncategorized on April 1, 2008 by meagenda

Read ME UK Events was created in March 2008 in response to the considerable concerns surrounding the April 2008 Royal Society of Medicine conference on “Chronic Fatigue Syndrome”.

The site provides a platform for information and comment relevant to the RSM conference. It will also provide a platform for updates on the demo planned for 28 April and for news and updates on other UK ME protests, demonstrations and campaigns as brought to the attention of the site owner.

The site is owned and maintained by Suzy Chapman and run independently of the RSM demo planned for 28 April. Suzy Chapman is not involved in the organisation of the RSM demo and all queries about this event and any other events flagged up on this site should be directed to the specific event Organiser.

If you have material or information suitable for publishing on Read ME UK Events or need to report broken links, difficulty opening files, pages etc please contact Suzy Chapman


For enquiries about individual events please contact the event organiser

28 April 2008 Royal Society of Medicine Demonstration
Event Organiser Gus Ryan


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