Archive for May, 2008

Prof Mansel Aylward and the RSM

Posted in CBT/GET, Royal Society of Medicine, UNUM on May 26, 2008 by meagenda

Professor Mansel Aylward, Director, Unum Centre for Psychosocial and Disability Research, Cardiff University, was one of the session chairs at the Royal Society of Medicine’s “CFS” Conference held on 28 April.

Conference Programme here

Readers may not have been aware that Professor Aylward is also a Sub-Dean of the Royal Society of Medicine (Regional Sub-Dean for Wales).

According to http://www.cardiff.ac.uk/psych/unum/staff/index.html and the RSM’s website, Professor Mansel Aylward was appointed The Royal Society of Medicine’s Academic Sub Dean for Wales in 2001.

http://www.rsm.ac.uk/regions/regions_wales.php

Wales
Honorary Sub-Dean

Professor Mansel Aylward

Email: wales@rsm.ac.uk  

Professor Mansel Aylward CB MD FRCP FFOM FFPM is Director of the UnumProvident Centre for Psychosocial and Disability Research at Cardiff University, Wales.

The Centre for Psychosocial and Disability Research at Cardiff University is the first of its kind to offer a unique opportunity to extend our knowledge and understanding of the psychosocial, social, economic and cultural factors that influence health, illness and disease, recovery, rehabilitation and reintegration into rewarding work.

He is also chair of the Wales Centre for Health which is a new body, established by the Welsh Assembly Government, to lead improvements in the nation’s health.

It aims to approach issues in a new way by advocating on public health issues, engaging with the public and their communities, advising on their concerns, and speaking independently on health, free from corporate or economic interests.

In July 2005 he became a Trustee of The Shaw Trust which provides training and work opportunities for people disadvantaged in the labour market due to disability, ill health, or other social circumstances.

From 1996 to April 2005 he was Chief Medical Adviser, Medical Director and Chief Scientist to the United Kingdom’s Department for Work and Pensions (DWP). He was also Chief Medical Adviser and Head of Profession at the Veterans’ Agency, Ministry of Defence.

He was made a Companion of the Bath in the Queen’s Birthday Honours List 2002. In 2001 he was appointed as The Royal Society of Medicine’s Academic Sub Dean for Wales.

He is a physician and specialist in rheumatology and rehabilitation, therapeutics and clinical pharmacology; a visiting Professor at several universities in Europe and North America and a consultant to the United States Social Security Administration and Department of Labour.

He entered the British Civil Service in 1985 and was appointed Chief Medical Adviser at the Department of Social Security in 1996 and at the Department for Work and Pensions in 2000. From 1974 to 1984 he was Chairman and Managing Director of Simbec Research Ltd, UK, and President of Simbec Inc, New Jersey USA.

He played a key role in development and evaluation of the UK’s medical assessment for incapacity (the All Work Test), and was heavily involved in developing the Personal Capability Assessment (PCA). He led the Corporate Medical Group on the UK Government’s Welfare Reform initiatives and made a major contribution in establishing the new postgraduate diploma for doctors in Disability Assessment Medicine.

He was closely involved in developing the UK’s successful “Pathways to Work” initiatives and a framework for Vocational Rehabilitation. He is keenly interested in addressing the health, work and social issues relevant to morbidity, mortality, work inactivity and social exclusion in the South Wales Valleys where he was born and brought up.

His interests are in rheumatology and rehabilitation, health and productivity, psychosocial illnesses, chronic fatigue syndromes and back pain disability. He has published widely in these various areas.

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Petition: Limit promotion and delivery of CBT within the NHS

Posted in CBT/GET, NICE CFS/ME guideline, Prof Peter White, Prof Simon Wessely on May 18, 2008 by meagenda

http://petitions.pm.gov.uk/NHSCBT

We the undersigned petition the Prime Minister to limit the promotion & delivery of Cognitive Behavioural Therapy [CBT] within the NHS according to available evidence.

Submitted by S. Forrest of NHS – Deadline to sign up by: 11 April 2009

“Following economist Lord Layard’s promotion of CBT on economic grounds, the NHS has seen a boom in the funding made available for the exclusive employment and training of CBT therapists in the NHS. However, equal funding has NOT been made available for a diverse range of psychotherapies. CBT continues to be aggressively promoted on the grounds of ‘evidence’ of its alleged effectiveness in treating some forms of mental distress, thereby severely and unfairly biasing public perception of CBT as a cure-all when this is patently untrue. Published evidence exists that shows CBT to have no long-term benefit in treating common difficulties such as anxiety or psychosis.

Further evidence also shows CBT to worsen symptoms in people who suffer from, for example, Myalgic Encephalomyelitis (ME)/ Chronic Fatigue Syndrome (CFS). As CBT is promoted on the grounds of ‘evidence’ of its effectiveness with some patients, this petition calls for the cessation of the use and promotion of CBT in the NHS where there is either no ‘evidence’ of its effectiveness or where ‘evidence’ exists to show that CBT is ineffective or deleterious to a patient’s wellbeing or symptoms.

[237 signatures at 18 May 2008]

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Response to standard response issued by CE of RSM

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 on May 18, 2008 by meagenda

Response to standard response issued by Ian Balmer, CE of the Royal Society of Medicine

15 May 2008

To: Mr Ian Balmer, CE Royal Society of Medicine
CC: Dr John Scadding, Dean Royal Society of Medicine

Re: Standard letter issued by RSM on 12 May 2008 re CFS Conference held on 28 April 2008

Dear Mr Balmer,

Yesterday I received from you what appears to be a standard letter which is being issued to those who had written in to the RSM in connection with the CFS Conference, held on 28 April. [Dated 12 May]

I have a query about a comment you have made, in your letter, in relation to the taking of stands at the conference. You have said:

“Although this was principally a conference for health professionals, the RSM did offer free stands to two patient interest groups. Indeed these offers were taken up and representatives of three groups were present and distributed a wide range of leaflets and documents.”

It is my understanding that the ME Association took a stand at the conference which was manned by the MEA’s Tony Britton.

You have stated that “representatives of three groups were present and distributed a wide range of leaflets and documents.”

I should be pleased if you could clarify which two other patient interest groups, in addition to the ME Association, had representatives distributing leaflets and documents within the RSM’s building, itself, and by arrangement with the conference organisers?

In your letter, you say that two major areas of criticism were identified that were common to most of the letters the RSM had received.

The first that “the conference was predominantly discussing this issue with reference to guidelines produced by NICE”; the second major criticism being that “the conference itself excluded patients”.

However, the RSM will also have received a large number of complaints about the fact that the Planning Committee for the CFS Conference comprised no less than four psychiatrists and that a significant number of those selected to give presentations were also from predominately psychiatric/psychological backgrounds.

But this concern remains unaddressed in the letter you have issued on behalf of the RSM. I would appreciate a response from the RSM to this specific concern, especially since it was the primary concern I had raised, myself, in my own communication.

In the meantime, since there is some confusion amongst members of the ME patient community about which patient interest groups were distributing literature within the RSM building, itself, I should be pleased if this issue could be addressed first.

Sincerely,

Suzy Chapman

 

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MEA: Summary of Prof Peter White’s RSM presentation

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, The Young ME Sufferers Trust on May 15, 2008 by meagenda

Ed: Note that Professor Peter Denton White is also Principal Investigator of the PACE Trials.

From Dr Charles Shepherd, ME Association

As previously announced, the ME Association was allowed to set up a display stand at the meeting on Chronic Fatigue Syndrome (NB: no mention of ME in the official title) for health professionals (only) that was held that at the Royal Society of Medicine (RSM) on Monday 28 April.

During the day, myself and Tony Britton were able to talk to a considerable number of those attending about the key issues concerning people with ME/CFS – in particular the scandalous lack of MRC funding for biomedical research; the challenges to the NICE guideline; and problems with new guidance on benefits (from the Department of Work and Pensions) and occupational health (from NHS Plus). We were also able to distribute quite a lot of MEA literature covering these concerns, as well as providing information from the Tymes Trust and details of the forthcoming biomedical conference organised by Invest in ME.

The meeting was opened by Dr John Scadding, Dean of the RSM. During his short opening address Dr Scadding referred to the fact that there was a demonstration going on outside and that this reflected the fact that there were deep concerns coming from the patient community about the content of this conference. There was no criticism of the demonstration and I understand that RSM staff took refreshments out to those involved later in the day. So a well conducted demonstration appears to have been effective in bringing these concerns to the attention of the Medical Establishment.

I spoke to Dr Scadding before the meeting started and it looks as though the RSM is keen to put on a meeting in the next academic year for both patients and doctors as part of their programme that brings patients and doctors together. We have agreed to discuss this proposal in more detail at a later date.

I had originally intended to stay for the full day and attend all the presentations. Unfortunately, I was unable to do so as I also had to attend an important family funeral in the afternoon.

My report is therefore confined to the first presentation given by Professor Peter White. I had to leave half way through questions – so there may be additional points of interest that are not included in this summary.

Dr Charles Shepherd
Hon Medical Adviser, ME Association

PROFESSOR PETER WHITE: Professor of Medicine at Bart’s and the London School of Medicine

PRESENTATION TITLE: What is Chronic Fatigue Syndrome? And What is ME?

What is CFS?

Peter White started off by summarising the five ways in which he believed chronic fatigue and chronic fatigue syndrome, the name preferred by most physicians, can be classified using ICD10:

F48: neurasthenia

F45.3 somatoform autonomic dysfunction
F45.9 somatoform disorder, unspecified

R53 malaise and fatigue
R54 senile asthenia

[CS note: The only place that ME appears in ICD10 is in the neurology chapter under G93:3; CFS is also indexed to G93:3]

He then summarised the 7 different research criteria that have been published for CFS in adults and children:

  • CDC Holmes
  • Australian
  • Oxford
  • London
  • CDC 1994
  • CDC Revised 2003

However, as there is no evidence of a CDC defined CFS out there in the general population, this is not a useful criteria to use for clinical diagnosis.

Peter White also pointed out how research (eg the Witchita epidemiological study) indicates that for every patient with CDC diagnosed CFS there are far more people in the population with chronic disabling fatigue.

He then considered the three different clinical definitions that can be applied to CFS:

  • Canadian Criteria
  • NICE criteria (ie fatigue plus one symptom from the NICE list)
  • Royal College of Paediatricians and Child Health criteria

and what he felt were their relative value in clinical practice, especially in regard to their use of lists of symptoms in addition to fatigue.

Peter White pointed out that as more symptoms are used to define a core illness the more likely it is that people with a psychiatric illness will be brought into the definition.

[CS note: Most members of the public probably don’t realise that as a rough rule of thumb many doctors work on roughly the same basis – the more ‘ non red flag’ symptoms someone has above 5 in number, the more likely they are to have a psychiatric illness.]

Peter White considered that the Canadian Criteria had too many symptoms (8 in all) from long lists of grouped symptoms – some of which (eg ataxia) had an uncertain relationship to CFS. As a result he could not recommend the use of the Canadian Criteria for the clinical diagnosis of CFS.

The new NICE criteria, which only require fatigue plus four symptoms, allows a diagnosis to be made around four months and are, he felt, useful.

The RCPCH criteria were his ‘Gold Star’ choice when it came to making a clinical diagnosis of CFS.

What is ME?

Peter White gave a brief summary of events at the Royal Free Hospital back in 1955, the editorial in the Lancet introducing the term ME/myalgic encephalomyelitis, and pointed out that some of the clinical features of ME (eg cranial nerve palsies) were not seen in individual cases today.

ME implied an incurable organic neurological illness that was originally defined on the basis of symptoms and signs found in outbreaks/epidemics. However, a conference at the RSM in 1978 had helped to legitimise a move from ME being an illness that occurred in epidemics to an endemic one.

To back this up, part of the presentation on ME was accompanied by a slide using the front cover of the January issue of ME Essential magazine with a photo of a severely affected lady in a wheelchair.

Peter White believed (on the basis of a piece of research) that having a label of ME carried a worse prognosis than having a label of CFS.

ME is, therefore, a name/diagnosis that is not helpful for doctors to use.

Lumpers and Splitters

The final part of this presentation looked at the issue of lumping or splitting – in other words do conditions such as CFS form part of a spectrum of overlapping disorders or are they more distinct clinical entities?

Peter White’s conclusion is that CFS is likely to be heterogeneous (ie composed of diverse elements) in nature when it comes to pathophysiology/causation whereas it is more useful to regard CFS as homogeneous (ie of the same kind) when considering treatments.

PW Conclusion:

‘The reality is that mind and body cannot be divided and illnesses such as CFS/ME involve “both”, like most chronic diseases. The ME-CFS debate may be remembered in future more as one of the tipping point for the rejection of Cartesian dualism than for diseases that lie within’.

What conclusion would be a doctor with no prior interest in ME/CFS come away with?

Had I been a doctor attending this meeting with no prior or specialist interest in ME/CFS I would have come away with the conclusion that:

  • CFS is by far the best name for this illness
  • CFS affects both mind and body
  • Research criteria for CFS aren’t helpful for making a clinical diagnosis
  • The best diagnostic criteria to use for making a diagnosis of CFS are those produced by NICE and the RCPCH
  • Canadian Criteria are not helpful for making a diagnosis of CFS
  • There is a safe and effective treatment for people with CFS: graded exercise therapy
  • The term ME is best avoided as it refers to an illness with neurological signs that occurred in outbreaks some time ago – such as the one at the Royal Free Hospital
  • Giving people a label of ME, implying a serious and possibly incurable neurological disease, is likely to lead to a less favourable prognosis

 

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InterAction magazine May 08: RSM conference

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 on May 15, 2008 by meagenda

On 14 March, Action for ME (AfME) issued a policy statement in defence of the organisation’s position regarding Sir Peter Spencer’s participation in the Royal Society of Medicine Conference on CFS in London on 28 April, where Sir Peter delivered an address entitled “M.E., the patient perspective”.

In this statement AfME wrote that it would be reporting on the proceedings of the conference to its members.  The current edition of AfME’s InterAction magazine, Issue 64, May 2008, carries a summary of Sir Peter’s presentation which is published, below. 

It isn’t clear whether AfME intends to report on some or all of the other presentations given at this conference.  AfME’s Heather Walker is known to have accompanied Sir Peter to the conference but may have been manning a stand.  Prior to the conference, the RSM had clarified to me that no charity representatives were being offered seats at the conference, itself.  The RSM has subsequently stated, in a standard letter, that three patient groups had representatives distributing literature within the RSM building.  The RSM has been asked, today, to clarify which two organisations had a presence at the conference venue, in addition to the ME Association’s stand.

Mr Ian Balmer, Chief Executive of the RSM said in his standard letter of 12 May, that the RSM now intends placing a webcast of the conference presentations on the RSM website.

Reproduced with permission of www.afme.org.uk

InterAction magazine, Issue 64, May 2008

Page 6: RSM conference

On 28 April Sir Peter Spencer addressed a Royal Society of Medicine (RSM) Conference on CFS in London. The charity was criticised by some for agreeing to share the platform with psychiatrists and a demonstration was arranged outside the event. Action for M.E. saw the conference as an opportunity to present the patient perspective through the evidence of our surveys and to make the case for more research.

Here is an extract from Peter’s presentation, which was made to an audience that included GPs and consultants in areas such as rheumatology, pain management and rehabilitation:

“In M.E. Awareness Week, Action for M.E. will again launch a campaign, based on the results of a national survey, highlighting some serious shortcomings in the provision of health care and social support to people with M.E. Continue reading

RSM “Medicine and Me” Events

Posted in AfME/Action for ME, ME Association, Royal Society of Medicine on May 14, 2008 by meagenda

RSM “Medicine and Me” Events

In the standard letter being sent out by Mr Ian Balmer, CE of the Royal Society of Medicine, see posting:

https://readmeukevents.wordpress.com/2008/05/14/letter-from-ian-balmer-ce-royal-society-of-medicine/

Mr Balmer writes:

“In order to redress the issue of patient involvement, the RSM has decided [to] introduce a ‘Medicine and Me’ conference on the subject of CFS/ME.

“This will be part of a series of conferences aimed at a wider audience, the planning of which will include patients and the format of which allows patients to speak first, and experts to respond to the issues raised. Typically the audiences for these conferences will be comprised of 70% patients and families. This particular series has proved extremely successful in allowing patients to share their experiences, focus on issues of greatest important to them and allow true dialogue between patients and acknowledged experts. This conference will be held in the early part of the 2008/09 academic year.”

Given the controversy over the RSM CFS Conference, it will be interesting to see which “experts”, clinicians and researchers, the RSM’s conference planners select to participate in this “Medicine and Me” “CFS/ME” meeting.

Past and future RSM “Medicine and Me” meetings appear to be arranged in association with a patient charity or organisation.

In the preface to his summary of Professor Peter D White’s presentation at the RSM Conference on 28 April, Dr Charles Shepherd, ME Association mentioned having discussions with Dr John Scadding in relation to this proposed meeting for the ME patient community and that they had agreed to discuss this proposal in more detail at a later date.

Will the ME Association and Action for ME be vying for the role of “in association with” and does the patient organisation have any influence over which “experts”, clinicians and researchers are invited to participate in these events?

In order to give an idea of the structure of these “Medicine and Me” meetings I am giving links, below, to one past meeting and three forthcoming conferences: Medicine and Me: Eczema, Medicine and Me: Sleep Apnoea, Medicine and Me: Hepatitis C and Medicine and Me: Lupus.

The charge to patients and carers is currently £20 to £25.00.

I will post any updates on this planned Medicine and Me: CFS/ME meeting.

 

http://www.rsm.ac.uk/academ/c10-z.php

Medicine and Me: Eczema

Tuesday 11 September 2007

Educational aims & objectives:

‘Medicine and Me’ conferences, initiated and developed by the Royal Society of Medicine, are specifically designed for patients. These meetings bring together patients, their families, carers, advocates, patient support groups, clinicians and researchers to discuss care and research issues in a particular condition.

‘Medicine and Me: Eczema’ is jointly organised by the Royal Society of Medicine and the National Eczema Society.

‘Medicine and Me’ meetings aim to provide a forum in which patients’ concerns about their illness are given top priority. The meetings provide an opportunity for patients and their families to share their experiences, to hear about the latest research and to question the experts. Eight Medicine and Me meetings have been held to date, on a wide range of diseases; these have all proved to be popular with patients.

The programme for this meeting includes an initial review of recent research, then presentations from three patients, each followed by a response from an expert on eczema, who will discuss the issues raised by the patients, concerning treatment and research. The meeting will finish with an extended interactive discussion involving all the speakers and the audience.

Who should attend?

The audience at ‘Medicine and Me’ meetings typically comprises patients, their families, carers and advocates, representing about 70% of those present; and clinicians and researchers, representing not more than 30%. Clinicians will include doctors, specialist nurses and all other types of health professionals involved in the treatment and care of patients.

This meeting will be suitable for all those with eczema.

[Go to the link for Agenda, speakers and conference registration details]

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

http://www.rsm.ac.uk/academ/apnoea.php

Medicine and Me: Sleep Apnoea

Saturday 10 May 2008

Venue: The Royal Society of Medicine, 1 Wimpole Street, London, W1G 0AE organised by the Royal Society of Medicine in association with The Sleep Apnoea Trust

‘Medicine and Me’ meetings aim to provide a forum in which patients’ concerns about their illness are given top priority. The meetings provide an opportunity for patients and their families to share their experiences, to hear about the latest research and to question the experts.

The programme for this meeting includes presentations from four people with sleep apnoea, addressing issues concerning diagnosis, treatment options and conditions associated with sleep apnoea. Each of these presentations will be followed by a response from an expert on sleep apnoea, who will discuss the issues raised.

The last part of the meeting will be an extended interactive panel discussion involving all the speakers and the audience.

[Go to the link for Agenda, speakers and conference registration details]

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

http://www.rsm.ac.uk/academ/hepc.php

Medicine and Me: Hepatitis C

Thursday 22 May 2008

Venue: The Royal Society of Medicine, 1 Wimpole Street, London, W1G 0AE organised by the Royal Society of Medicine and The Hepatitis C Trust

Patient attendance is supported by The Hepatitis C Trust

‘Medicine and Me’ conferences, initiated and developed by the Royal Society of Medicine, are specifically intended for patients. These meetings bring together patients, their families, carers, advocates, patient support groups, clinicians and researchers to discuss care and research issues in a particular condition. Medicine and Me conferences aim to provide a forum in which patients’ concerns about their illness are given top priority.

‘Medicine and Me: Hepatitis C’ is jointly organised by the Royal Society of Medicine and the Hepatitis C Trust. The programme includes presentations from three people affected by Hepatitis C, raising issues about the nature of the condition and its treatment, each followed by an expert response. The meeting will finish with an extended panel discussion which will involve the audience in an interactive discussion.

[Go to the link for Agenda, speakers and conference registration details]

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

http://www.rsm.ac.uk/academ/e10-lupus.php

Medicine and Me: Lupus

Tuesday 24 June 2008

Venue: The Royal Society of Medicine, 1 Wimpole Street, London, W1G 0AE organised by the Royal Society of Medicine in association with LUPUS UK

‘Medicine and Me’ conferences, initiated and developed by the Royal Society of Medicine, are specifically designed for patients. These meetings bring together patients, their families, carers, advocates, patient support groups, clinicians and researchers to discuss care and research issues in a particular condition.

‘Medicine and Me’ meetings aim to provide a forum in which patients’ concerns about their illness are given top priority. The meetings provide an opportunity for patients and their families to share their experiences, to hear about the latest research and to question the experts.

[Go to the link for Agenda, speakers and conference registration details]

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Letter from Ian Balmer, CE, Royal Society of Medicine

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 on May 14, 2008 by meagenda

Letter from Mr Ian Balmer, Chief Executive, The Royal Society of Medicine

This morning, I have received a paper letter from Mr Ian Balmer, Chief Executive of the Royal Society of Medicine, dated 12 May 2008, in response to the postcard I had sent to Dr John Scadding, Dean of the RSM, as part of the “On a Postcard, please” Campaign.

This is a standard letter which is being sent out by Mr Balmer, on behalf of the RSM, in response to the many individuals and groups who had contacted the RSM by paper letter, postcard or email with their concerns about the line-up and agenda for this conference.

Leaving aside for the time being, the content of Mr Balmer’s responses to the many concerns which would have been brought to his attention, there are a few issues I would like to raise:

Mr Balmer has written:

“Although this was principally a conference for health professionals, the RSM did offer free stands to two patient interest groups. Indeed these offers were taken up and representatives of three groups were present and distributed a wide range of leaflets and documents.”

1] We know that the ME Association took a stand which was manned by Tony Britton. The MEA has stated that Dr Charles Shepherd attended the first presentation (Prof PD White) and that it had been his intention to attend all the conference sessions, but in the event, was unable to do so due to family circumstances.

The MEA has stated that “A member of the MEA has very generously agreed to cover all of our costs that will be involved.” If no charge was made by the RSM for the stand, itself, then it remains unclear what costs were met by a member of the MEA. It also remains unclear on what basis Dr Shepherd had attended the conference, itself.

2] Are we to assume that Action for ME (AfME) also took a stand? It is known that Heather Walker was present at the event – though there is no mention in the latest issue of InterAction of AfME having also taken a stand at the conference, in addition to Sir Peter Spencer’s having been a speaker.

Issue 64, May 2008 edition of AfME’s InterAction magazine carries a summary of the presentation Sir Peter delivered to the conference but there is no further mention of whether AfME still intends to produce summaries of all or some of the other presentations, as AfME has previously suggested. [Mr Balmer states that a webcast of the conference will shortly be made available on the RSM website.]

3] In his standard letter, Mr Balmer writes:

“…representatives of three groups were present and distributed a wide range of leaflets and documents.”

Who was the third group present, distributing leaflets? Is Mr Balmer referring to Joan Crawford and her husband and any assistants who joined them in the distribution of leaflets outside the RSM building, on the morning of the conference? If not, then who was the third group present?

4] Note the letter is headed “Re: CFS/ME Conference”

5] Mr Balmer does not address the criticism about the number of psychiatrists who comprised the CFS Conference Planning Committee or the heavy psychiatric / psychological bias of those selected to give the presentations.

6] Mr Balmer states that the RSM has decided to run a “Medicine and Me conference on the subject of CFS/ME” later this year.

These events appear to be run in association with a patient organisation / charity. I will post links for the Agendas of previous “Medicine and Me” conferences in the next few days so that readers can get a feel for the structure of these events. It will be interesting to see, assuming this proposed event follows the pattern of previous events, whether the ME Association will be vying with AfME for the role of “in association with”.

If you wrote to the RSM and have received a response other than this standard letter and would like a copy published on ME agenda and Read ME UK Events sites, please let me know.

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

The Royal Society of Medicine

Patron HM The Queen

FROM THE CHIEF EXECUTIVE
Mr Ian Balmer
Tel: 020 7290 2901 Fax: 020 7290 2909
Email: ian.balmer@rsm.ac.uk

12 May 2008

Ms Suzy Chapman
Address

Dear Ms Chapman

Re: CFS/ME Conference

Firstly, can I thank you for the views you have sent the Royal Society of Medicine regarding this important conference. It perhaps will not surprise you to know that we were inundated with such responses and therefore it has been decided that I will respond in all cases, regardless of who the original letter was sent to.

Perhaps there were two broad criticisms made of the RSM that were common to most of the letters we received. Firstly that the conference was predominantly discussing this issue with reference to guidelines produced by NICE, which in the view of some did not fully explore the potential biomedical causes of this problem. The second major criticism was that the conference itself excluded patients.

It is important to realise that the intended audience of this conference was health professionals from a range of diverse backgrounds. Although this was principally a conference for health professionals, the RSM did offer free stands to two patient interest groups. Indeed these offers were taken up and representatives of three groups were present and distributed a wide range of leaflets and documents.

The RSM rejects the criticism made of the symposium and believes that all the content was evidence based and of high scientific quality. We will be making the conference available as a webcast, and this will be on the RSM website shortly.

In order to redress the issue of patient involvement, the RSM has decided introduce a ‘Medicine and Me’ conference on the subject of CFS/ME.

This will be part of a series of conferences aimed at a wider audience, the planning of which will include patients and the format of which allows patients to speak first, and experts to respond to the issues raised. Typically the audiences for these conferences will be comprised of 70% patients and families. This particular series has proved extremely successful in allowing patients to share their experiences, focus on issues of greatest important to them and allow true dialogue between patients and acknowledged experts. This conference will be held in the early part of the 2008/09 academic year.

Once again, thank you for comments regarding this very important issue.

With kind regards,

Yours sincerely

Mr Ian Balmer
Chief Executive

1 Wimpole Street
London W1G 0AE
Tel: +44 (0)207290 2900
Charity No: 206219
VAT reg no 524 413671

 

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