RSM “Medicine and me” event: Commentary by John Sayer

Royal Society of Medicine “Medicine and me” event on ME and CFS held Saturday, 18 July 2009

Commentary

John Sayer (Chair, M.E. Support-Norfolk)

25 July 2009

The half-day conference was organised jointly by the Royal Society of Medicine, the MEA, AfME, AYME, the 25% ME Group and TYMES Trust.

The promotional literature informed us that:

“‘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…[and]…aim to provide a forum in which patients’ concerns about their illness are given top priority.”

Unfortunately, the pattern of the day – two presentations at a time followed by a five-minute slot for questions – did not really provide for much in the way of patient-led questions and/or discussion. It was, however, an opportunity to see what the various bodies involved had to say for themselves (and encouraging to hear Jane Colby of TYMES Trust underline in her welcome address that the title of the proceedings was “Medicine and me: ME *and* CFS”).

(This write-up is based on notes taken at the time by myself and Gus Ryan.)

Session 1 was chaired by Dr Charles Shepherd (MEA), who reminded us that there had been two parliamentary meetings [i.e. the All-Party Parliamentary Group on ME and the Countess of Mar’s ForwardME Group] earlier in the week and that people still had a chance to submit written evidence to the APPGME’s NHS service provision inquiry.

Dr Abhijit Chaudhuri (of the Essex Centre for Neurosciences) spoke on “A rational, efficient and practical approach to diagnosis”. He said that ‘CFS’ represents a wide group of patients and the term does not help matters; that there should be earlier diagnosis, perhaps three months into illness onset (six weeks where children are concerned). He does not think the NICE Guideline has helped. In his view, post-exertional malaise, muscle cramps and *well preserved motivation and interest* (my emphasis) are key symptoms of M.E. and referral should be to a neurologist, since even psychiatrists admit that roughly 10% of ‘CFS’ sufferers have a neurological problem. He said that we need a national centre and funding for it (Romford being a treatment – not research – centre). His talk ended with a slide presentation of inflammation of the dorsal root ganglion, which he pointed out was “the gatekeeper of sensations”.

In the question slot Ciaran Farrell asked how we could change the NHS – to much applause from the audience. Dr Chaudhuri repeated that we need a national research centre.

“M.E. in children and adolescents” was presented by Shannen Dabson, a teenager whose story struck a particular chord with me as a teacher (prior to M.E.). She has had M.E. for six years, and now has very little trust in adults, having received virtually no respect for herself and her diagnosis. She found herself “written off” by her school, who didn’t send her work, didn’t mark the work she managed to do, didn’t send her the school newsletters or keep her informed of such things as the school photographs (which was the part that had me closest to tears, as I’d suffered the same treatment from my last employer: I will never forgive them for my absence from the school photograph of my form pupils; for both Shannen and me, it was like being airbrushed out of history). Shannen had had to make her own arrangements for taking exams, as her school refused to enter her on the grounds of a poor attendance record. To her admirable credit, she got six GCSEs anyway! I’m hoping to reproduce her talk for “MES-N” members, as it should be inspirational, especially for youngsters. She came up with what I personally consider to be a very practical, appropriate and *scientifically sound* slogan: “Work smarter, not harder!”

Hardip Begol (of the Department for Children, Schools and Families) spoke on “Addressing the educational impact of ME”, and said that Shannen’s situation is all too common from an educational point of view and that it was difficult to make teachers believe in ME/CFS. No personal disrespect to Mr Begol, but it struck me that what he had to say in his presentation did not have all that much immediate relevance, being, as one might expect, current government ‘fudge’. His comments were not actually specific to M.E., but here’s hoping that the conference gave him something to think about and take back to the DfCSF (though I’m not really holding my breath on that one).

In the question slot following these two talks Mary-Jane Willows (of AYME) said that the balance of power was with schools and Jane Colby pointed out that parents are too afraid to complain. (Personal note – no wonder, with the spectre of Social Services waiting in the wings, ready to pounce.)

Catriona Courtier (of the West London M.E. Self Help Group) spoke on “Treatment: the patient’s perspective”. She has had M.E. for twenty six years and her daughter is also ill. She reminded us that an AfME survey revealed that patients received very little proper treatment and that an MEA survey demonstrated that graded exercise therapy (GET) was the most dangerous form. She is ‘anti-NICE’. She said that staff at her local clinic *want* to help – but are misinformed.

Prof Anthony Pinching of the Peninsula Medical School, Plymouth, spoke on “Treatment – evidence-based and pragmatic approaches” and thinks that things are changing for the better. In his view, M.E. is a physical illness with psychological consequences and that people should work together and “not lob bricks at each other”. He said that the Cornwall service does make home visits. He advocates a ‘symptom-control’ approach: which symptoms does a patient want most help with? I found him to be a bit vague and general, really, and he seemed to be saying that every individual needs different treatment (including psychological approaches), to be negotiated between patient and physician, and seemed to imply that success depended on the doctor-client relationship (which I personally find a bit too New-Agey: “permission to be ill and permission to have fun whilst you’re ill”). He did, however, say that there is a need for “building M.E. into the medical curriculum” (note – although it depends on exactly *what* is built in!). In response to a question about CBT from Dr Charles Shepherd, he indicated that such treatment should be ‘individualised’.

In the question slot Dr Chaudhuri expressed disagreement with Prof Pinching, saying that patients are *not* listened to and that the NICE Guideline is aimed at a *broad* group – these points being applauded by the audience. Prof Pinching responded that the NICE Guideline is not perfect, but should be used “to best effect”.

After a short (very short!) break, Sir Peter Spencer (Chief Executive Officer, AfME) chaired Session 2.

Dr Neil Abbott (ME Research UK) spoke on “Research: what do patients want and why isn’t it happening?” He suggested that the RSM host a biomedical conference on M.E. (Applause!) He said that the psychosocial model is predominant in the UK, although not quite so much in the US. He quoted Prof Simon Wessely with reference to psychosocial interventions: “certainly, those interventions are not the answer to CFS”. MERUK survey reveals that research on mitochondria, RBCs, immune cells, muscles, blood vessels, genes and brain are wanted; that this is not  “sexy” illness. ‘ME/CFS’ label is a problem: it is a process of elimination and that leads to a dustbin diagnosis. He is critical of the psychosocial approach, which is applicable to *all* illnesses (used to manage symptoms) and not specific to M.E. The real problem, in his view, is lack of funding.

Prof Stephen Holgate (University of Southampton) spoke on “ME: a research orphan for too long”. He said we need research because too little is known [sic] and said that the history of M.E. has dictated a mental health approach, it being perceived as having evolved from neurasthenia [‘nervous debility’]. He said, “It’s a system disorder” and that ‘omics’ should be used – i.e. genomics, proteomics and metabolomics. He referred to ‘ME/CFS’ as a “condition or conditions (25 or more)”; that the government won’t allow integrated research. He is putting together a workshop in November (the Medical Research Council Interdisciplinary Expert Group on M.E.), a systematic review deciding priorities, saying that a collaborative needs to be formed from charities [sic], the MRC and researchers, and that there is a need to ‘join up’ patients from clinics/centres. [Personal note: it all seemed to me a bit like reinventing the wheel and I have my misgivings about not only which ‘charities’ will be invited to participate but also the calibre of patients from the clinics/services.]

Dr David Misselbrook (Dean of the RSM) then invited questions to the panel of speakers. An elderly neuroscientist and his grandson tried to deliver a plug for the Lightning Process, the grandson claiming we had “wasted all this time talking when a cure has already been found” [sic], but Dan [from “M.E. Support-Norfolk”] pointed out that we hadn’t come all this way to hear a sales pitch for LP and Jane Colby expressed serious misgivings about success claims, citing an example of further harm caused to a patient; she also pointed out that no one can legally claim recompense if LP doesn’t cure a patient as it is not offered as a treatment, but a ‘training’.

Ciaran Farrell challenged Prof Holgate’s ‘history’ of M.E. but Prof Holgate said he had been misunderstood, that it wasn’t his own belief that M.E. was a form of neurasthenia and that he agreed with Ciaran, adding that he wanted to get rid of the terms “CFS” and “M.E.” [whatever that implies!].

In “Closing remarks”, Mary-Jane Willows said that there should be quick diagnosis, raising of awareness and no “one size-fits-all” approach. Doris Jones (of the 25% ME Group) read out a list of M.E. sufferers who have died and requested a minute’s silence in their memory, which was dutifully observed.

All in all, in my own opinion? A worthwhile day in order to find out what is going on in various quarters, but throughout the proceedings I did wonder who the ‘target audience’ was supposed to be, and for whose benefit this had all been arranged. Was it a ‘box-ticking’, ‘patient consultation’ exercise? The subtitle of the event, “Hearing the patient voice”, was a bit misleading, since we were mostly being talked at, not listened to; there certainly wasn’t enough time, as I said at the beginning, for much questioning or discussion. But maybe some of what was said will pay dividends. Fingers crossed.

John Sayer, Chair
M.E. Support-Norfolk

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Ed Notes:

1] Terms of Reference for the MRC’s Interdisciplinary Expert Group on M.E. have yet to be agreed (FOI Act).

2] ME agenda is unable to enter into correspondence around the Lightning Process.

Next meeting of the APPG on ME: Wednesday 8 July 2009

Three upcoming events this week:

APPG on ME meeting

The next meeting of the All Party Parliamentary Group on M.E., chaired by Dr Des Turner MP, will take place on Wednesday 8 July 2009, Committee Room 19*, House of Commons, 1.30-3pm.

*Please note this change of venue which was previously given as Committee Room 20

The meeting will also serve as the group’s AGM.  Committee officers holders for the next parliamentary year will be elected (Dr Gibson is no longer Secretary to the APPG on ME having recently stood down as MP for Norwich North) and the future work of the APPG on ME will be discussed. No invited speaker for this meeting has been announced.  Members of the public are permitted to attend these meetings (please see my note of clarification around the status of membership of the APPG on ME at the end of this post).

Agenda for Wednesday’s meeting

 

APPG on ME Inquiry into NHS Services for people with ME

There is considerable confusion about the dates and times for these sessions since the APPG on ME website states:

“Evidence sessions are likely to commence 14 July 2009 and a later notice will give details of these.”

But no notice has been issued setting out the dates and times for these oral hearings/evidence sessions by either the APPG on ME committee, the inquiry panel Chair, Dr Turner, or the secretariat to the APPG on ME.

According to unofficial reports, oral hearings for this inquiry are being held, this week, on Thursday, 9 July (the day after the APPG on ME meeting) and last week, invitations were apparently received by some members of the ME community to attend in order to present oral evidence.  No complete list of attendees has been issued.

It is assumed that (as was the case with the oral hearings for the “Gibson Inquiry”) these hearings are intended to be held in public.  Why Dr Turner has failed to issue a notice and why the secretariat to the APPG on ME has failed to chase Dr Turner for one, isn’t clear.

Some readers will recall that in 2006, two of the oral hearings for the “Gibson Inquiry”, which had been intended to be held in public, took place virtually in camera because Dr Gibson’s administrative support staff failed to circulate a notice advertising the dates and times of these meetings and the names of those invited to give evidence.  So very few of those who would have liked to have attended these two hearings were in a position to do so. 

It is disturbing that once again, no agenda for the first of these oral hearings has been circulated by Dr Turner.  There are also concerns that some of those who have made written submissions have received no acknowledgement of their submission, whereas others have. 

If you were hoping to attend the oral hearings please contact Dr Turner, directly, at the email address or through his parliamentary office as I have no information, myself, about the hearing said to be taking place on Thursday this week.  If any information filters out I will post an update.   

Dr Des Turner:  turnerd@parliament.uk   Parliamentary Office: 020 7219 4024

This is, in any case, a poor choice of week for the ME community for the holding of oral hearings/evidence sessions – with the APPG on ME meeting on Wednesday and the Royal Society of Medicine’s “Medicine and Me” series event taking place on Saturday, 11 July.  Attendance of the RSM event is by reservation of seat.  

For information on the RSM “Medicine and me” series event: ME and CFS – Hearing the patient’s voice, Saturday, 11 July see:

http://www.rsm.ac.uk/academ/x2g106.php

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Minutes of previous APPG on ME Meetings

The APPG on ME website now has PDF copies of Minutes of APPG meetings going back to 31 January 2001 collated at:  http://www.appgme.org.uk/minutes/mintues.html

Clarification regarding membership of the APPG on ME

There have been misunderstandings on some forums that AfME (Action for M.E.), the MEA (The ME Association), AYME (Association of Young People with ME), TYMES Trust (The Young ME Sufferers Trust), The 25% ME Group, ME Research UK, BRAME (Blue Ribbon for Awareness of ME) and RiME (Campaigning for Research into ME) are all members of the All-Party Parliamentary Group on ME.

None of the above are members of the APPG on ME.

In the case of Associate Parliamentary groups, applications for membership may be accepted by the group’s officers from organisations, interest groups, commercial concerns and individuals other than MPs or Members of the House of Lords.

But the All-Party Parliamentary Group on ME is not constituted as an Associate Parliamentary Group and therefore only Members of the House of Commons or the House of Lords are permitted membership of the APPG on ME, and only Members of the House of Commons or Lords have voting rights at its meetings.

So the only members of the APPG on ME are parliamentarians.

From the office of the Parliamentary Commissioner:

“Groups are only required to register with us the names of their officers and of 20 ‘qualifying members’. The full membership list, including names over and above that, resides with the group and it is for them to ensure that it is comprehensive and up to date. […] Any MP (ie not just signed up members of the group) is entitled to turn up at any meeting of the group, and to speak and vote at the meeting – unless a subscription is charged in which case voting may be restricted to paid-up members of the group.”

The APPG on ME group’s current office holders and the twenty qualifying members (made up of cross party MPs and members of the House of Lords) can be viewed at the link, below.

http://www.publications.parliament.uk/pa/cm/cmallparty/register/memi389.htm

Under “BENEFITS RECEIVED BY GROUP FROM SOURCES OUTSIDE PARLIAMENT” AfME and The ME Association are listed as jointly providing the secretariat to the Group.

“Action for ME and The ME Association both provides secretarial support (addressing and stuffing envelopes, taking minutes, photocopying).”

AfME and the MEA alternate the task of minute taking and circulation of minutes and agendas for these meetings but they are not members of the APPG Group and their status as organisations and that of their representatives in relation to the Group is no different to that of any other organisation that sends a representative to attend these meetings.

Although APPG groups are not permitted to advertise their meetings as “Public Meetings”, meetings of the APPG on ME are held in House of Commons committee rooms and are open to members of the public, that is, national ME patient organisations, representatives of the committees of “local” and regional ME support groups and other interested parties; they are also open to individual members of the ME community and their carers, who can and do regularly attend and contribute to these meetings.

So none of the five national registered membership ME patient organisations listed above are members of the APPG on ME but they attend APPG meetings, send their representives to meetings, and in the case of AfME and the MEA, provide the secretariat function.

ME Research UK : a research organisation and a registered charity (Scotland), represented at APPG on ME meetings by Mrs Sue Waddle, a former trustee of Invest in ME.

BRAME : unregistered, non membership, run by Christine Harrison and her daughter, Tanya. Both Christine and Tanya attend APPG on ME meetings.

RiME : unregistered, non membership, run by Paul Davies. Paul Davies attends APPG on ME meetings, sometimes supported by other individuals.

A number of ME sufferers and carers of ME sufferers attend APPG on ME meetings and their names are sometimes listed as attendees in the minutes of meetings; their contributions to these meetings are minuted.

I hope this clarifies any misconceptions about policy and proceedings at these meetings and the status of the organisations and individuals who attend them.

A Guide to the Rules on All Party Groups can be downloaded here:

http://www.parliament.uk/documents/upload/PCFSGroupsRules.pdf

MEA: Summary Board of Trustees meeting 15 and 16 June 2008

Summary of ME Association Board of Trustees meetings held on Mon 15 June and Tues 16 June, 2009

http://www.meassociation.org.uk/content/view/893/161/

This is a summary of key points to emerge from two meetings of The ME Association Board of Trustees. These meetings took place at our Head Office in Buckingham on Monday afternoon 15 June 2009 and on Tuesday morning 16 June 2009. Informal discussions also took place on a number of issues on the Monday evening.

After the Board meeting on Tuesday the charity’s AGM was held in the afternoon. Results of trustee elections were also announced. A brief summary of the AGM, along with the election results, and a short post-AGM Board meeting, is included at the end of this summary.

Please note that this is a summary of the Board meetings and AGM – not the official minutes.

The order of subjects below is not necessarily in the order that they were discussed.

PRESENT

Trustees:

Ewan Dale (ED) – Honorary Treasurer
Mark Douglas (MD)
Neil Riley (NR) – Chairman
Charles Shepherd (CS) – Honorary Medical Adviser
Barbara Stafford (BS)

Officials:

Gill Briody (GB) – Company Secretary
Tony Britton (TB) – Publicity Manager

Apologies:

Rick Osman (RO) – Vice Chairman

FINANCES

ED updated trustees on the current financial situation. Trustees then discussed the monthly accounts for the period up to April 2009. All of our main sources of income are holding steady and in some cases – ie donations and fundraising, literature sales, membership subscriptions – are slightly or significantly up on the same period last year. This is reassuring news given the difficult economic climate and the effect that this is having on the charity sector in general. Income for general funds is continuing to remain roughly in line with expenditure, despite the fall in interest rates on funds held. Trustees made some minor changes to banking arrangements in order to maximise interest rates on the various bank balances.

RSM “Medicine and Me” event: ME and CFS – Hearing the patient’s voice

Note: One of the speakers at this RSM “Medicine and Me” event will be Professor Stephen Holgate, University of Southampton.

Professor Holgate chairs the “CFS/ME multi-disciplinary panel” convened by the MRC, last year. It’s not clear from the RSM event programme whether Professor Holgate is participating in this event on behalf of the MRC and in his capacity as chair of this panel but I would imagine that this is the case.

Professor Holgate is also a member of the MRC’s Physiological Systems and Clinical Sciences Board (PSCSB) and he chairs the MRC Respiratory Research Collaborative.  He is also chair of the CFS Research Foundation’s Research Committee and a member of the James Lind Alliance Strategy and Development Group.

The inaugural meeting of the MRC “CFS/ME multi-disciplinary panel” was held in December 08.  A second meeting took place in March, this year.  But this panel’s Terms of Reference have yet to be agreed and published…

Since 25 April 08, I have had an FOI request lodged with the MRC for a copy of the panel’s Terms of Reference. Further enquiries made of the MRC exactly a year later, on 26 April 09, elicited the following response from Ms Rosa Parker, MRC Corporate Governance and Policy:

“At their second meeting the MRC’s CFS/ME expert group requested further amendment to the terms of reference. The final terms of reference will be published on the MRC’s website once they have been confirmed, as agreed previously we will also send you a copy as soon as they are available.”

I had also asked for the official name of this panel but this enquiry was not addressed – though Ms Parker has referred twice to the panel as the “MRC’s CFS/ME Expert Group” .

On 12 December, last year, I obtained from the MRC, under the FOI Act, a list of panel members and their affiliations. I was advised at the time  that the names of the panel members would be published on the MRC website in due course. Nearly six months later, I have yet to find this information on the MRC’s website. 

For a list of current members of the “CFS/ME multi-disciplinary panel” or “CFS/ME Expert Group” see:

Freedom of Information Request: MRC CFS/ME multi-disciplinary panel members list

For a report by Action for ME (AfME) of the inaugural meeting of the multi-disciplinary panel see:

MRC multi-disciplinary panel “expert panel”: inaugural meeting

 According to Sir Peter Spencer’s report of the first meeting:

“A research collaborative will be formed from interested parties in the UK who have a stake in scientific research into M.E./CFS. The nucleus is the list of those who attended this meeting.  It is envisaged that the group will expand, bringing together medical scientists from a wide range of different disciplines, funding organisations, royal colleges, professional organisations, patient charities and other relevant parties, to agree a common agenda for increasing the scale and quality of research into M.E. in the UK, along the lines of the achievements of the UK Respiratory Research Collaborative…”

No other patient organisations, other than Action for M.E. and the ME Association appear to be having any form of involvement in the business of this panel.

Professor Stephen Holgate’s presentation at this forthcoming RSM event is called “ME: a research orphan for too long”. Given the MRC’s track record for funding research and the length of time it is taking this panel to actually get down to business you can pretty much guarantee that ME will continue a “research orphan” for many years to come…

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Royal Society of Medicine Event in the “Medicine and Me” series

http://www.roysocmed.ac.uk/academ/x2g106.php

Medicine and Me: ME and CFS – Hearing the patient’s voice

Saturday 11 July 2009

Venue: The Royal Society of Medicine, 1 Wimpole Street, London, W1G 0AE

organised by the Royal Society of Medicine and The ME Association, Action for ME, AYME, The 25% ME Group and The Tymes Trust

‘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.

This ‘Medicine and Me: ME and CFS’ conference is organised jointly by the Royal Society of Medicine, The ME Association, Action for ME, AYME, The 25% ME Group and The Tymes 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 experiences, to hear about the latest research and treatment, to discuss treatment choices and access to treatment, and to question the experts on a wide range of issues.

This meeting will focus on the difficulties and delays in diagnosis, ME and CFS in children and adolescents, the existing range of treatments, and the latest research and its impact on the development of new, disease-modifying treatments.

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

This meeting will be suitable for all those affected by ME and CFS

Registration Details:
Fellow: £50
Associate: £30
Trainee – Fellow: £30
Retired Fellow: £30
Student Members: £20
Non-Fellow: £70
Allied Health Professional: £35
Nurse: £35
Trainee – Non-Fellow: £35
Student: £25
Patient: £10
Carer: £10
CPD: 3 credits

[Registration button]

Agenda:

12.15 pm

Registration and coffee

1.00 pm

Welcome address
Dr David Misselbrook, Dean, RSM & Ms Jane Colby, Executive Director, The Young ME Sufferers Trust

Session One
Chair: Dr Charles Shepherd, ME Association

1.10 pm
Diagnosis: the patient’s perspective
Mr Jez Harding, Jez Harding Consulting Ltd, London

1.25 pm
Patient videos

1.35 pm
A rational, efficient and practical approach to diagnosis
Dr Abhijit Chaudhuri, Essex Centre for Neurosciences

1.50 pm
Questions

1.55 pm
ME in children and adolescents: the patient’s perspective
Miss Shannen Dabson

2.10 pm
Addressing the educational impact of ME
Mr Hardip Begol, Department for Children, Schools and Families, London

2.25 pm
Questions

2.30 pm
Treatment: the patient’s perspective
Ms Annette Barclay

2.50 pm
Treatment- evidence based and pragmatic approaches
Professor Anthony Pinching, Peninsula Medical School

3.05 pm
Questions

3.10 pm
Tea break

Session Two
Chair: Sir Peter Spencer, Action for ME

3.35 pm
Research: what do patients want and why isn’t it happening?
Dr Neil Abbot, ME Research UK and University of Dundee

3.50 pm
ME: a research orphan for too long
Professor Stephen Holgate, University of Southampton

Session Three
Chair: David Misselbrook, Dean, RSM

4.05 pm
Panel discussion
All speakers and Dr Nigel Speight, adviser to ME Association and Professionals Referral Panel, The Young ME Sufferers Trust

4.55 pm
Closing remarks
Mrs Mary-Jane Willows, Association for Young People with ME

Mr Simon Lawrence, The 25% ME Group

Dr David Misselbrook, Dean RSM

5.00 pm
Close of meeting

Summary: Meeting, MEA Board of Trustees 17 March 2009

Summary of meeting, ME Association Board of Trustees Tuesday, 17 March 2009

This is a summary of key points to emerge from a meeting of The ME Association Board of Trustees that took place at our Head Office in Buckingham on Tuesday 17 March 2009. Informal discussions also took place on a number of issues the night before. Please note that this is a summary of the Board meeting – not the official minutes.

The order of subjects below is not necessarily in the order that they were discussed.

PRESENT

Trustees:

Ewan Dale (ED) – Honorary Treasurer
Mark Douglas (MD)
Neil Riley (NR) – Chairman (by telephone link)
Charles Shepherd (CS) – Honorary Medical Adviser
Barbara Stafford (BS)

Officials:

Gill Briody (GB) – Company Secretary
Tony Britton (TB) – Publicity Manager

Apologies:

Rick Osman (RO) – Vice Chairman

FINANCES

ED updated trustees on the financial situation, including a discussion on the final monthly accounts for the year ending December 2008. Despite the very difficult economic climate for charities it was encouraging to note that income from subscriptions, gift aid, advertising, literature sales and general fundraising for 2008 was slightly up on 2007. Income for general funds was also roughly in line with expenditure.

However, like all charities we are now facing a situation where people are likely to be reducing the amount of money they are able or willing to give to the charity sector. At the same time, demand on our support and information services is increasing, and may well see a further significant increase once the government’s new welfare/benefit reforms start to take effect.

Trustees and staff agreed to continue to maintain very tight control over expenditure and to pursue the best rates of interest on money held in our reserve accounts – where there has been a very dramatic fall in income as a result of the base rate cuts over the past few months.

New Scientist: “Interview” with Prof Simon Wessely

On Wednesday, New Scientist published a piece by Clare Wilson featuring Professor Simon Wessely.  Brace yourselves and read the full “interview” here:

New Scientist

http://www.newscientist.com/article/mg20126997.000-how-people-can-think-themselves-sick.html

How people can think themselves sick

11 March 2009 by Clare Wilson

Can people think themselves sick? This is what psychiatrist Simon Wessely explores. His research into the causes of conditions like chronic fatigue syndrome and Gulf war syndrome have led to hate mail, yet far from dismissing these illnesses as imaginary, Wessely has spent his career developing treatments for them. Clare Wilson asks what it’s like to be disliked by people you’re trying to help…Read on

Comments – and I’m sure readers will have plenty – can be left via the Comment section at the foot of the article. 

For letters, use the online form:  http://www.newscientist.com/contact/person?recipient=lett 

Or E-mail letters to:  letters@newscientist.com 

If submitting a letter, include full postal address, telephone number and article reference (issue, page number, title). New Scientist appears to prefer short letters of around 150 words.

At the time of publishing, there have been over 90 comments.

Update: @ 18 March, there are now over 330 comments.  Comments are restricted to 5000 characters, so you may need to split longer comments over two postings.  The posting box has difficulty accepting text pasted from an email or from Word or Notepad.  It also has a problem displaying apostrophes – it displays the html code instead.  So avoid the use of “can’t”, “it’s”, “Wessely’s” etc.

Here’s one I posted, earlier:

http://www.newscientist.com/commenting/browse?id=mg20126997.000&page=7

In response to comment: Where Is The Science???
Fri Mar 13 14:14:51 GMT 2009 by Suzy Chapman, ME agenda

Mark Hewgill comments that he is surprised to see this article in New Scientist. I am not. In my view, this cobbled together piece was orchestrated as a potential damage limitation exercise, appearing as it did, just two days before the anticipated handing down of the judgement on the Judicial Review of the NICE CFS/ME Guideline (CG53). I very much doubt that the timing of this piece was co-incidental.

In March/April 2008, the Royal Society of Medicine received a large number of complaints because the Conference Planning Committee (of which Professor Wessely had been a member) had been dominated by psychiatrists and because a significant number of those selected to give presentations were also from predominately psychological / psychiatric backgrounds.

James Campbell comments, “Yet again we have Professor Wessely failing to mention any of the several thousand research papers which clearly show that ME/CFS is an organic multi-system disease.”

Towards the end of his own presentation at this RSM Conference, Prof Wessely had remarked, “…it is not possible, really though, to completely avoid the outside world much as we would like…I also think it is a great mistake, because if you really actually want to understand Chronic fatigue syndrome – ME – whatever we are going to call it, you have to do so in possession of all the facts – not just those facts that you like, but all of them. You cannot pick and choose, and the history of science tells us very clearly that turning your back on things that you do not like, things that are not going the way you want them to, and there are many, many examples of this, at best leads to false conclusions and bad decisions, and at worst, leads to bigotry and intolerance.”

Indeed. So Professor Wessely, we can expect to see you at the 29 May Invest in ME Conference?

Prof Peter White discouraging RSM Conference from using ICD-10

Prof Peter White discouraging RSM Conference from using ICD-10

Royal Society of Medicine “Chronic Fatigue Syndrome” Conference 28 April 2008

Presentation: Professor Peter White, Bart’s and the London School of Medicine

What is Chronic Fatigue Syndrome and what is ME?

Webcast: http://rsm.mediaondemand.net/player.aspx?EventID=1291
PowerPoint: http://www.roysocmed.ac.uk/chronicfatigue08/white.pdf

This unofficial transcript extract has been prepared by Suzy Chapman. Care has been taken in the preparation of this transcript though some errors and omissions may remain.

Transcript also available as Word doc here: RSM Transcript Prof Peter White

[Excerpt from first 6.00 minutes of presentation]

[…]

I’m going to try to define what Chronic Fatigue Syndrome is. By doing so, I’m going to review the ICD-10 criteria for the illness and see if they’re helpful. The answer will be, they are not helpful. I’m going to look at research criteria to see if they help us try and define this illness in the clinical aspect. But this meeting is about clinicians making the diagnosis and helping patients. And the answer is, the research criteria are pretty useless at defining the illness clinically. So we then come to the three clinical criteria at the end to see if they’re useful and two of them actually do have help to us; so the good news is, after some attrition as we skim through ICD-10 research criteria, there will be some good news at the end, where there are two particular clinical criteria: the NICE Guidelines criteria and the Royal College Of Paediatrics and Child Health criteria I would commend to you, as clinicians, as a useful way of starting the process of diagnosis and management to your patients.

1:26

But nothing is simple, as Albert Einstein said. You’ve got to keep things simple but no simpler in life, so there is a bit of a twist in the tail at the end of CFS, where we have the Wessely/White debate – is there one functional somatic syndrome, is CFS part of actually a wider, one functional somatic syndrome that includes things like IBS, Fibromyalgia and things like that, or is it the opposite polar extreme: that chronic fatigue syndrome is more than one illness – it’s actually heterogeneous. So I’m going to just touch on that. And at the end of my talk, I’m going to try and perhaps answer an even more difficult question: what is ME? And I’m going to go back to the original descriptions of ME, back to the 1950s to help us and also make the point, which is another important clinical point, that I’m going to make this morning – that is, the diagnostic labels we choose to use influence our patients and influence prognosis. If I have time – I may not.

2.27

I’m going to make the broader point – patients come in and they say to us, “What is ME? Does it really exist?” Or if it’s CFS, “Does it really exist?” The answer is, yes, it does exist and “Is it physical or mental?” And unfortunately we live in a Cartesian world of dualism: it’s either mental or it’s physical. The reality, of course, is, anyone with an understanding of neuroscience will know, as we will in this audience, actually it’s both: physical and mental, and you cannot divide the mind from the body. So let’s see, we’ll start with “The Mystery”. There’s no doubt this is a mysterious illness, as John Scadding has already implied, and we do have a problem with what we call it. [Reads from media article] “Once dismissed as ‘yuppie flu,’ chronic fatigue is increasingly recognised as a debilitating disease that affects millions.”

Slide 3

[Montage of CFS and ME press articles]

3.18

And one of our problems is: labels do count. So “Yuppie Flu”? If you were told you that you suffered from “Yuppie Flu”, how would you feel? So we do have a problem in how we label. And also it’s a problem that we have partial responsibility for, as doctors and health care professionals. From another magazine: “If your doctor says it’s all in the mind…”, Would you like to be told it’s all in your mind? “…don’t assume you’re just neurotic.” Notice the word “just”. “You may be suffering from one of the ‘new’ illnesses that doctors are still having difficulty diagnosing.” And as you’ll see from my talk, today, we are still struggling to make the diagnoses of Chronic fatigue syndrome and ME. So we are partially responsible for what is going on.

3:54

So, does the ICD-10 help us, unfortunately not, there at least five ways (in fact there are probably more than five) of classifying Chronic fatigue syndrome using the ICD-10 criteria.

What are they? We start off well: Myalgic encephalomyelitis is in the neurology chapter of ICD-10. It’s main title is “Post viral fatigue syndrome” and subsumed under that is “Benign myalgic encephalomyelitis” and helpfully, “Chronic fatigue syndrome, postviral”.

Slide 6

Myalgic Encephalomyelitis
G93.3 in Neurology chapter of ICD-10
Postviral fatigue syndrome,
Includes:
benign myalgic encephalomyelitis
Chronic fatigue syndrome, postviral

So it starts off well. You get a virally triggered chronic fatigue syndrome – that’s your diagnosis. Or is it? What if it’s not postviral? What if the viral illness is not a clear trigger for the illness? Well, you’ve got alternatives: in the Mental Health Chapter, you’ve got Neurasthenia, which of course was talked about back in the last, and previous to last century.

Slide 7

Neurasthenia
F48 in ICD-10 mental disorders chapter
Neurasthenia
Excludes postviral fatigue syndrome
Includes fatigue syndrome

Helpfully, it excludes postviral fatigue syndrome but includes “Fatigue syndrome”. So if you think someone’s got a fatigue syndrome that’s not triggered by a virus, should you be using this diagnosis? If not, one of these three: if you think that somehow, psychological factors have some role to play in your patient’s diagnosis or in their illness, should you use one of these diagnoses, including some beautiful, historical, interesting syndromes such as Effort syndrome, Da Costa syndrome, whatever “Neurocirculatory asthenia” was in those days.

Slide 8

Other ways to classify CFS
F45.1 Undifferentiated somatoform disorder
F45.3 Somatoform autonomic dysfunction
Includes:
Da Costa syndrome,
Neurocirculatory asthenia
F45.9 Somatoform disorder, unspecified

But it gets actually worse than that because that’s five possible diagnoses you can use and the trouble with these diagnoses is, you have to somehow guess that psychological factors have an important role to play in their aetiology – how on earth can you guess that when someone may be presenting five years after the illness started? So difficult to make these diagnostic labels.

5:40

But actually, if you are more neutral – you don’t know whether it’s physical or mental, you want to use a more neutral term – well you have got something you can use in ICD-10, in the “R Chapter” – “Chronic fatigue, unspecified” which helpfully includes [R53.82] Chronic fatigue syndrome NOS. You could actually use that if you don’t want to jump off the fence as to whether this is physical or mental in the dualistic mood.

5.59

It’s confusing isn’t it? And some of my junior staff would suggest that when you get this confused, as I am, over ICD 10, you are always left with a diagnosis – a self-diagnosis, of course, of senile dementia, sorry, senile, senior – dementia comes later. [Laughter]

Slide 9

Other ways to classify CFS
R53.82 Chronic fatigue, unspecified
Includes:
Chronic fatigue syndrome NOS
R54 Senile asthenia!

So ICD-10 is not helpful and I would not suggest, as clinicians, you use ICD-10 criteria.

They really need sorting out; and they will be in due course, God willing…

MEA: Summary Board of Trustees meeting: 27 January 2009

Ed: The MEA has published a summary of its January meeting of the Association’s Board of Trustees. 

No update on the progress Dr Des Turner’s proposed APPG on ME inquiry into NHS service provision for people with ME is reported ( see previous posting: Next meeting of the APPG on ME ).

No date appears to have been set, yet, for a February meeting of the APPG on ME.

The summary informs that the second meeting of the MRC’s “Expert Group on ME/CFS Research” is planned for March.  The MRC advised me in January that revisions to the group’s Terms of Reference are anticipated to be agreed at this second meeting of the group and that a copy will be provided to me under the FOI Act as soon as the Terms of Reference are agreed.   A copy will be published here on ME agenda.

The web pages for the entry on “Chronic Fatigue Syndrome” on the NHS Choices website, referred to in the summary below, can be found here

——————–

ME Association | 30 January 2009

ME Association: Summary Board of Trustees meeting: 27 January 2009

This is a short summary of key points to emerge from a meeting of The ME Association Board of Trustees that took place at our Head Office in Buckingham on Tuesday 27 January 2009. Informal discussions also took place on a number of issues the night before.

Please note that this is a summary of the Board meeting – not the official minutes.

The order of subjects below is not necessarily in the order that they were discussed.

PRESENT

Trustees:

Ewan Dale (ED) – Honorary Treasurer
Neil Riley (NR) – Chairman (by telephone link)
Charles Shepherd (CS) – Honorary Medical Adviser

Officials:

Gill Briody (GB) – Company Secretary
Tony Britton (TB) – Publicity Manager

Apologies:
Mark Douglas (MD)
Rick Osman (RO) – Vice Chairman
Ba Stafford (BS)

FINANCES

ED reported that overall income from subscriptions, donations, gift aid and general fundraising for the year ending December 2008 has been roughly in line with expenditure, which included some significant additional items due to the Head Office move at the beginning of 2008. This is very encouraging given the major economic problems that started to emerge during the latter part of 2008. However, like all charities we are now facing a situation where people may be reducing the amount of money they are able or willing to give to the charity sector. And at the same time demand on our support and information services may well start to increase. Trustees agreed to continue to maintain a very tight control over expenditure and to secure the best rates of interest on money held in our unrestricted and restricted (ie research fund) reserve accounts – where there is going to be a significant fall in income as a result of the base rate cuts.

The annual stocktaking of literature and goods for sale has been successfully completed.

FUNDRAISING INITIATIVES

Amazon Walk to raise funds for a tissue and post-mortem bank: BS had sent in an email report on Ed Stafford’s progress on the Amazon Walk. Ed’s most recent blog posting comes from Milagos, Peru. He will shortly be collecting his visa for entry into Brazil – which makes about 3,000 km to go as the crow flies!. Progress can be followed on the Amazon Walk blog at www.walkingtheamazon.com . Ed’s fundraising page for ME research at JustGiving can be found at: http://www.justgiving.com/walkingtheamazonmeresearch . Just over £5,000 has been raised so far.

Mobile phone and ink cartridge returns and trolley coins Trolley coins can still be ordered using the pdf ORDER FORM on the MEA website (www.meassociation.org.uk) ,or the insert in the February issue of ME Essential magazine, or by phoning MEA Head Office: 01280 818964/818968.

Fundraising information TB produced a draft layout for our new fundraising information leaflet.

A number of other fundraising initiatives were discussed, including a decision to once again sell Christmas Cards in 2009. A number of possible designs were considered.

2009 AGM AND TRUSTEE ELECTIONS

Trustees agreed to a timetable for the 2009 AGM and trustee elections. The AGM will take place at Head Office in late June or early July. Trustees standing for election this year are Mark Douglas and Barbara Stafford. Further information on the AGM and trustee elections will appear in the February issue of ME Essential magazine.

We are very keen to hear from anyone who would like to discuss the possibility of joining the MEA as a trustee. Applications are welcome from people with ME, carers, and anyone who has skills which they feel could be of benefit to the charity. In order to proceed with an application, non members would have to become members of the MEA.

NICE JUDICIAL REVIEW

CS updated trustees on administrative arrangements for the NICE judicial review. The two day Hearing will take place in the High Court in London on 11 and 12 February 2009. A representative from the MEA will attend the Hearing. More information, as it comes in, will appear on MEA website:

http://www.meassociation.org.uk/content/blogcategory/30/161/

PARLIAMENTARY

APPG Inquiry into NHS Services CS reported on progress with the Inquiry that has been initiated by Dr Des Turner, Chairman of the APPG. Further information will appear on the MEA website news section as it becomes available.

APPG The next meeting of the APPG is intended to take place in February and it is hoped that there will be a presentation from Jonathan Shaw, Minister for Disabled People. As soon as a date becomes available it will appear on the MEA website news section. The minutes of the 8 October meeting can be found on the MEA website (news section archive).

Countess of Mar’s Group: FORWARD ME CS reported on the second meeting of this group that took place at the House of Lords on Tuesday 18 November. A website has been set up where information about the group and minutes from meetings are available. A summary of the November meeting will appear in the February issue of ME Essential magazine. Forward ME website: www.forward-me.org.uk

RESEARCH

Ramsay Research Fund (RRF) funding for Professor Julia Newton et al, University of Newcastle CS updated trustees on the new research study into muscle function in ME/CFS that was approved at the last Board meeting in November. Further information about this study can be found at the end of this summary.

ME Observatory Steering Group CS reported that the next Steering Group meeting will take place on Tuesday February 3.

Post-mortem tissue bank feasibility study CS reported that the next meeting of the Steering Group that is overseeing this new item of research that will be examining various aspects of how an ME/CFS specific tissue/post-mortem bank could be set up will take place on February 3rd. CS will also be having a separate meeting with the researchers on Monday 2 February. It was agreed that CS should visit one of the existing post-mortem/tissue banks in the UK to take this preparation forward.

Medical Research Council (MRC) Expert Group on ME/CFS Research CS updated trustees on the current situation regarding this group, which has been set up by Professor Stephen Holgate, and reported on the first meeting of the group that was held in London on 15 December. The MEA gave a presentation on the role of the charity sector in initiating and funding research. A summary of this meeting will appear in the February issue of ME Essential magazine. A further meeting is being planned for March.

Ramsay Research Fund constitution Trustees agreed to start work on a new constitution for the Ramsay Research Fund which will be more relevant to the current situation regarding ME/CFS research.

Application for funding in relation to post-mortem research Trustees discussed a new funding proposal that is awaiting ethical approval.

Other applications for research funding CS updated trustees on several other preliminary applications for research funding that have been received.

Practice nurses’ attitudes to cause and management of ME/CFS Trustees discussed the results of this recently published research paper, which indicates a very poor understanding of the pathological factors that may be involved in the causation of ME/CFS. Some of the nurses who were interviewed also displayed very negative or prejudicial views about people with ME/CFS. CS has written to members of the FORWARD ME Group to ask for a discussion on nurse education to be placed on the Agenda for the next meeting. The MEA has approached the Royal College of Nursing about ME/CFS education in the past and the results of this study indicate that we need to do so again. The full paper can be accessed via the news section (January 2009 archive) of the MEA website.

SCOTTISH CLINICAL GUIDELINES

ED reported on the current state of progress relating to the development of clinical guidance for doctors in Scotland – a document that is partly being based on the content of the MEA purple booklet for health professionals: ‘ME/CFS/PVFS – An Exploration of the Key Clinical Issues – and the Public Health Needs Assessment. The timescale for both projects has had to be re-organised with redrafted documents relating to both initiatives coming out in February for further stakeholder consultation. The aim is to achieve publication during ME Awareness Week in May.

NHS DIRECT

TB reported on a meeting he had attended on January 20th of the NHS Direct Access Issues Group at NHS Direct HQ, where the possibility of MEA involvement in future work on chronic and long term conditions was mentioned. TB has been invited to give a presentation to the group at their next meeting in April. We are also working with NHS Choices on a video about ME/CFS.

MEA ANNUAL MEDICAL MEETING

Trustees discussed arrangements for the 2009 Annual Medical Meeting. CS is going to contact local groups to see if anyone would like to co-operate with us in the way that the Colchester Group did for the 2008 meeting.

OTHER ME/CFS MEETINGS

Royal Society of Medicine CS reported on arrangements for the patient meeting in the ‘Medicine and ME’ series that will be held at the Royal Society of Medicine on Saturday 11 July. More information on this meeting, including how to apply to attend, can be found in the February issue of ME Essential magazine.

Invest in ME Conference Trustees agreed to both TB and CS attending this conference in May. We are also going to ask the organisers if the MEA can have a display stand at the conference.

MEA MANAGEMENT QUESTIONNAIRE

TB updated trustees on the analysis of data from around 3500 on-line questionnaires and 750 paper questionnaires. The overall response makes this the largest ever survey of public opinion about management issues that has ever been undertaken here in the UK, possibly in the world. A comprehensive summary of the results will appear in the February issue of ME Essential magazine and it was agreed to start work on the preparation of a more substantial report which summarises and comments on the results. All of the relevant patient feedback will be passed to the APPG Inquiry into NHS Services.

MEA LITERATURE

A new information leaflet on PHI/permanent health insurance will shortly be made available.

MEA literature can be obtained using the pdf ORDER FORM on the MEA website: http://www.meassociation.org.uk, or the 8 page order form insert in the February issue of ME Essential magazine, or by phoning Head Office on 01280 818064/818968.

MEA WEBSITE

The new regular on-line survey feature has proved to be very popular. So far, we have surveyed public opinion on reactions to flu vaccination (November); the NICE guideline on ME/CFS (December) and post-mortem research (February). Trustees considered various options for future questions. The February survey will be allow people to comment on how satisffied they are with the NHS management of their ME/CFS. Results from current and past on-line surveys can be found on the MEA website.

It was agreed to update the section on alternative and complementary therapies.

ME CONNECT

Trustees discussed whether ME Connect Helpline could also be linked in to NHS services and given publicity by the ME/CFS clinics.

ME ESSENTIAL MAGAZINE

TB reported on the content of the February issue of ME Essential. This will be sent out to members towards the end of the month. It was agreed to produce a survey form for people to comment on the content of the magazine – in particular the not always easy task of achieving the right balance between serious news and medical information and ‘lighter’ human interest features.

DATE OF NEXT MEETING

Provisionally fixed for Tuesday 17 March 2009

Summary prepared by Dr Charles Shepherd
MEA trustee

ADDENDUM

Further information on new MEA funded research into muscle energy metabolism:

Professor Julia Newton and colleagues at the University of Newcastle have been investigating the role of autonomic system dysfunction in ME/CFS and several papers from her research group relating to these findings have now been published. Professor Newton has also been looking at possible explanations for the sometimes quite disabling fatigue that is reported by people with primary biliary cirrhosis. The main emphasis of the new study being funded by the ME Association’s Ramsay Research Fund will be to look at whether there is a peripheral (ie muscular) component to exercise-induced fatigue in ME/CFS by examining how skeletal muscle produces lactic acid during exercise and then removes the acid during the recovery phase. The proposed study will take forward findings from small studies that have already examined this aspect of muscle function. Some of these studies indicate that there is a defect in muscle energy metabolism/production, possibly due to mitochondrial dysfunction, that cannot be explained by the deconditioning/inactivity model – at least in a sub-group of people with ME/CFS.

MEA website

ENDS

Date for RSM ‘Medicine and me’ meeting

The Royal Society of Medicine plans to hold the proposed ‘Medicine and me’ conference on

Saturday 11 July 2009

In AfME’s InterAction magazine, Page 3, CEO’s report, Sir Peter Spencer writes:

“Next year also, patients and carers will be invited to attend the Royal Society of Medicine’s (RSM’s) ‘Medicine and me’ conference on M.E. on Saturday 11 July in London. ‘Medicine and me’ meetings bring together patients, carers, advocates, patient support groups, clinicians and researchers to discuss care and research matters of interest to patients with a specific condition. It will be a great opportunity for face-to-face contact with some of the leading M.E. clinicians and researchers in the land, so I hope those who are well enough will be there. Booking will be essential. Further details will be posted in InterAction, on our website and on the RSM website at www.rsm.ac.uk  

Action for ME (AfME)

Ed: Note that the RSM’s ”Medicine and me’ meetings are held for various conditions and that this meeting will be a “Medicine and me meeting on ME” or more likely a “Medicine and me meeting on CFS”, as the RSM did not use the term “ME” for the controversial conference held in April, this year).

For the format of these meetings see:

https://meagenda.wordpress.com/2008/09/09/update-on-planning-of-rsm-medicine-and-me-conference/

Reasons for Judicial Review of the NICE Guideline on “CFS/ME”: Williams

Margaret Williams announces a Hearing listing for the Judicial Review of the NICE Guideline on “CFS/ME”. ME agenda has no connection with the legal cases – please address all enquiries concerning the Judicial Review to the legal team representing the Fraser/Short case and the legal representives for the ONE CLICK case or to the High Court, where appropriate. Enquiries relating to the content of this article by Margaret Williams should be directed to Stephen Ralph of MEActionUK

For a document setting out what a Judicial Review is, what it is not and how it works see: 

https://meagenda.wordpress.com/2008/06/18/judicial-review-judgement-guidance/

An unoffical site has been set up for supporters of the NICE CFS/ME Judicial Review, for information and updates for those planning to attend the hearing and for those able to offer assistance with arrangements and publicity.  The site can be found at: http://www.nicemecourt.co.uk/

 ~~~~~~~~~~~~~~~~~~~~~~~

“This [NICE Judicial Review] is undoubtedly a high profile case. At the preliminary Hearing in June, there was standing room only. The Hearing is listed for 11th-12th February 2009. High Court officials are now busy rearranging the Court venue in order to ensure not only disabled access and facilities, but also to accommodate the coach-loads of people from the UK ME/CFS community who are expected to turn up to witness what will undoubtedly be a landmark legal action that will have global ramifications.”  M Williams

Prejudice-based Medicine?

Reasons for Judicial Review of the NICE Guideline on “CFS/ME”

by Margaret Williams

27th October 2008

On 2nd November 1972 the London Medical Group held a closed meeting at which aversion “therapy” was promoted as a “cure” for homosexuality. The “therapy” was drug-induced nausea whilst the “patient” had to view homosexual acts (preferably live). The aim of this so-called “re-conditioning” was to “change the emotions where the person cannot change them of his own free will”. According to one of the speakers, psychologist Hans Eysenck, aversion “therapy” was “only undertaken where it is of the patients’ own choice”. Another speaker, Dr Isaac Marks, Senior Lecturer and Consultant Psychiatrist at the Maudsley Hospital, justified such abuse as being “in society’s interest”. The proponents of this “therapy” were praised by the chairman of the meeting for their “outstanding contributions to psychology” and were referred to as “these great men”.

People who underwent this “therapy” ended up as chronically depressed asexual vegetables ( http://www.petertatchell.net/psychiatry/dentist.htm  ).

On 28th April 2008, another closed medical meeting was held in London, this time at the Royal Society of Medicine; once again the intention was to promote another currently faddish “therapy” as a “cure” for another so-called “aberrant” disorder. This time it was not about homosexuality but about myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS), which the psychiatrists to whom the RSM offered a platform prefer to call “CFS/ME” and claim that it is a behavioural disorder. These psychiatrists (known as the Wessely School) lump ME/CFS together with on-going tiredness or chronic “fatigue” such as is seen in depression and anxiety states, even though ME/CFS has been formally classified as a neurological disorder by the World Health Organisation since 1969 and the WHO has confirmed in writing that what these psychiatrists are doing is not permitted under the WHO taxonomic principles.

People with ME/CFS have been referred to by a leading UK Wessely School psychiatrist as “the undeserving sick of our society”, so this time, the “therapy” is a mind-altering technique to disabuse patients of their belief that they are physically sick, combined with incremental aerobic exercise (because the psychiatrists believe that these patients are merely de-conditioned through self-indulgent lazing about for secondary gain in the form of state benefits).

Of course, as in 1972, the “therapy” is only to be offered to those who choose it, but those who refuse it (because they are simply too sick to participate or are sufficiently well-informed to be aware of the potential dangers) are deemed not to want to get better, so their state benefits are summarily stopped. The “Pathways to Work” programme will require Incapacity Benefit (now known as ESA, or Employment & Support Allowance) claimants with ME/CFS to undergo CBT/GET before their benefits are reinstated. Not surprisingly, the suicide rate in ME/CFS has been documented at one per month, not because patients are mentally deranged, but because without help they have no means of surviving such a devastating disorder and can no longer cope with the extreme suffering.

It ought to be a matter of national concern that this current fad is now enshrined in a Guideline produced by the National Institute for Health and Clinical Excellence (NICE) and is to be implemented throughout the nation, even though the “therapy” in question may already have resulted in an untold number of non-suicide deaths (including a Member of Parliament who suffered from ME) and may have turned countless mildly affected sufferers into severely affected physical wrecks requiring 24 hour lifelong care. These very sick people are officially described on page 68 of the NICE Guideline as “a substantial burden on society”.

In supporting the psychiatric lobby’s attempt to make ME/CFS disappear within the maelstrom of undifferentiated fatigue states, NICE has contributed to the perpetuation of unacceptable practices by officially sanctioning – indeed promoting – this Government-funded current prejudice, the consequences of which will be catastrophic, not only for those afflicted by ME/CFS, but also for those committed researchers who are on the point of a breakthrough into the aetiology of what is by any standards a life-shattering multi-system disorder. Chronic “fatigue” has no more a relationship to ME/CFS than a pimple has to a malignant tumour.

In 2005, Professor Nancy Klimas, Professor of Medicine at Miami and President of the International ME/CFS Association was clear: “Our patients are terribly ill, misunderstood, and suffer at the hands of a poorly informed medical establishment”.

The following year (2006) she repeated the message: “There is evidence that the patients with this illness experience a level of disability that is equal to that of patients with late-stage AIDS, patients undergoing chemotherapy (and) patients with multiple sclerosis”.

In 2007, evidence was presented at an international conference held in Florida that the cardiac index of these patients is so severe that it falls between the value of patients with myocardial infarction (heart attack) and those in shock.

Although this evidence and more was brought to its attention, NICE remained unmoved and recommended only behavioural interventions designed for mental disorders, talking about “unhelpful beliefs”; “the relationship between thoughts, feelings, behaviours and symptoms”, “sleep hygiene” and “over-vigilance to symptoms”.

It seems that so determined was the Wessely School that NICE should recommend this latest fad that the Guideline Development Group (GDG) was specifically instructed to ignore over 4,000 peer-reviewed papers which clearly demonstrate that ME/CFS affects all major bodily systems, especially the immune system, the neurological systems (central, autonomic and peripheral), the neuroendocrine system, the cardiovascular system, the respiratory system, the musculo-skeletal system, the gastrointestinal system, the reproductive system and the ocular system.

The Wessely School psychiatric lobby dismisses all this evidence as being “not of clinical value” and insists that patients “are assumed to have ‘mental’ disease” because there is “no pathology”. They refer to ME/CFS as a “pseudo-disease”. It seems that NICE agrees.

To be fair to NICE, it is not required to address causation in its Guidelines; however, its remit in this case was to produce a Guideline to aid diagnosis. To do so, it was necessary for NICE to identify and define the disorder in question by considering the existing knowledge-base. Indeed, NICE is required to do so under the terms of the AGREE instrument, to which it is a signatory. In its Guideline on “CFS/ME”, NICE signally failed to do so.

Virtually all the UK ME/CFS charities condemned the Guideline as unfit for purpose: such was the outrage and disgust throughout the ME/CFS community at the way that NICE had deliberately ignored so much evidence about ME/CFS that a Public Law firm (Leigh Day & Co, rated number one in Chambers’ legal directory) agreed to seek permission to challenge the Guideline in the High Court by way of Judicial Review.

The initial Hearing was on 17th June 2008 before Mr Justice Cranston (Sir Ross Frederick Cranston), who in his Judgment said: “There is no doubt that ME is a debilitating condition and many of us will know of people who have the condition. Mr Hyam (for the Claimants) has pointed to the lack of balance in the composition of the group drawing up the Guidelines. Given the great public interest, it seems to me that this case ought to go forward for a full hearing”.

NICE is therefore once again being dragged kicking and screaming into the High Court in an attempt to justify what cannot logically be justified.

For example, NICE decided to reject the WHO formal classification of ME/CFS as a neurological disorder. The ME/CFS community has obtained an abundance of evidence that this might be because the psychiatrists’ gravy train would hit the buffers if NICE acknowledged that ME/CFS is a discrete neurological disorder. NICE’s position on this is unsustainable because not only does the WHO classify ME/CFS as a neurological disorder, but since 2003 the UK Read Codes used by all GPs also classify it as a neurological disorder. Furthermore, ME/CFS is included in the National Service Framework for long-term neurological disorders, and the Department of Health (by whom NICE is funded and to whom it is answerable) also accepts that ME/CFS is a neurological disorder, as does the Chief Medical Officer himself. It will be interesting for the public to see what “evidence” NICE produces to convince the Court that its position in this regard is justified.

It will also be interesting for the public to hear NICE’s explanation about the composition of the Guideline Development Group that prepared the Guideline, in particular, how NICE justifies its decision to exclude clinicians with a professional lifetime’s expertise in ME/CFS who were willing to serve on the GDG, and instead head-hunted non-experts with undeclared vested interests. For example, Dr William Hamilton was invited to be a member of the GDG specifically because of his published work which supports the notion that ME/CFS is a behavioural disorder that is best treated by CBT/GET (as recommended by the Guideline). Dr Hamilton just happens to be Chief Medical Officer of two medical insurance companies that rigorously resist claims made by ME/CFS patients, The Exeter Friendly Society and Liverpool Victoria (LV), which took over Permanent Health. The antics of LV in respect of ME/CFS claims have been brought to the attention of Members of Parliament at an All Party Parliamentary Group Meeting at the House of Commons.

NICE may be required to clarify why it preferred the expertise of a dietician, a reflexologist who also works as a hypnotherapist, an occupational therapist and a physiotherapist to experienced ME/CFS clinicians such as Dr William Weir, Dr Jonathan Kerr, Professor Julia Newton, Dr Terry Mitchell, Dr Nigel Speight and Dr Charles Shepherd. Again, it will be interesting to hear NICE’s explanation, especially as the physiotherapist just happened to have worked with psychiatrist Professor Peter White and it was she who wrote the handbook on graded exercise for the Medical Research Council’s “CFS” trial, of which Peter White is a Principal Investigator. This physiotherapist also works for the same medical insurance company as Peter White, which pays her to recommend (and carry out) GET for claimants (so could it be said that her vote in favour of GET was a forgone conclusion?). Furthermore, she works as a “healing” therapist using Human Givens “therapy” (which claims to “empower” patients but is described by one clinician as “dodgy psychobabble”). Many people have difficulty in understanding how this physiotherapist had more to offer the patients for whom the Guideline is supposed to be intended than the Medical Adviser to the ME Association.

None of the many competing interests of GDG members was declared in the Guideline: it was not until two months after the Guideline had been published that NICE released what purported to be the List of Competing Interests of the GDG; it barely scratched the surface of GDG members’ vested interests.

Then there is the interesting matter of how this Institute for Clinical Excellence produced its “evidence” out of thin air: since even NICE could not procure non-existent evidence to support its recommendations for behavioural therapy, it decided to create its own evidence by transferring data from one study and inserting that data into a totally different study to produce what might have been the desired results if the study in question had run for five years instead of only fourteen months. The fact that the transplanted data came from a study that had used different entry criteria and whose own data had been corrupted (admitted by the authors themselves) seems not to have troubled the Institute for Clinical Excellence. Most straight-thinking people might regard such doctoring of the evidence as fraudulent.

Another interesting area is the “Consensus” methodology that was used in the production of the Guideline on “CFS/ME”. It does seem to be the case that formal consensus methodology was conspicuous by its absence: indeed, on 10th May 2006 NICE made it known that the consensus technique was to be “modified” by NICE for the development of this particular Guideline. Scrutiny of this “modification” as it appears in the Guideline makes very interesting reading. It will not escape attention that the person described in the Guideline as the “Consensus Development Expert” was Professor Rosalind Raine, whose published track record happens to be that “CFS/ME” is a behavioural disorder that should be managed by CBT/GET. Raine specifically singled out “CFS” for study (funded by the MRC) and she is clear: CBT should aim to “modify thoughts and beliefs with the expectation that emotional and behavioural changes will follow”; behavioural therapies focus on “the modification of behaviour to positively reinforce healthy behaviours” and they “emphasise the role that social factors can play in the development and maintenance of functional somatic complaints. The goal is to identify and reinforce ‘well’ behaviours while reducing reinforcement for somatic behaviours” (Lancet 2004:364:429-437). The ME/CFS community may well be justified in maintaining that NICE’s “consensus” exercise was cosmetic.

There is in addition the matter of NICE informing the Court on 17th June 2008 at the initial Hearing before Mr Justice Cranston that it had no knowledge of certain documents before that Hearing, even though receipt of some of those documents had previously been acknowledged in writing on 23rd January 2006.

There is also the serious issue of Social Services continuing to seek to remove children with ME/CFS from their parents and placing them in “care”, citing the NICE Guideline as the reason.

NICE appears to be in breach of the AGREE instrument (to which it is obliged to conform in the production of its Guidelines) on no less than seven separate counts. It will be interesting to hear why this should be so in the production of the Guideline on “CFS/ME” and the Court may be keen to hear why NICE appears to have broken its own guidelines (that it is obliged to observe) in so many respects in the production of this particular Guideline.

This is undoubtedly a high profile case. At the preliminary Hearing in June, there was standing room only.

The Hearing is listed for 11th-12th February 2009. High Court officials are now busy rearranging the Court venue in order to ensure not only disabled access and facilities, but also to accommodate the coach-loads of people from the UK ME/CFS community who are expected to turn up to witness what will undoubtedly be a landmark legal action that will have global ramifications.

Literature References: http://www.meactionuk.org.uk/Quotable_Quotes_Updated.pdf  

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