ME in Parliament: Written Answers: 26 June, 1 July, 7 July 09

ME in Parliament: Written Answers: 26 June, 1 July, 7 July 09

WordPress Shortlink: http://wp.me/p5foE-2eY

As circulated by Dr Marc-Alexander Fluks

Source: UK House of Commons
Date: June 26, 2009
URL: http://www.publications.parliament.uk/pa/cm200809/cmhansrd/cm090626/text/90626w0012.htm
Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster

[Written Answers]

Business, Innovation and Skills – Chronic Fatigue Syndrome

Lynne Jones

To ask the Minister of State, Department for Business, Innovation and Skills with reference to the answer to the right hon. Member for Horsham of 21 April 2008, Official Report, column 1785W, on chronic fatigue syndrome: research, when the Medical Research Council plans to set up a panel of experts from different disciplines to look at the subtypes and causes of myalgic encephalomyelitis/chronic fatigue syndrome. [281820]

Mr. Lammy

The Medical Research Council (MRC) set up in 2008 a panel of experts from different disciplines to look more closely at chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). The group is reviewing the current research and will identify additional opportunities with the aim of stimulating further research into CFS/ME, in particular focusing on the causes of the condition. The MRC hopes that this will encourage new research towards understanding the aetiology and subtypes of CFS/ME and lead to an advancement of knowledge in this field and the development of new therapeutic approaches.

(c) 2009 Parliamentary copyright

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Source: UK House of Commons
Date: July 1, 2009
URL: http://www.publications.parliament.uk/pa/cm200809/cmhansrd/cm090701/text/90701w0021.htm
Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster

[Written Answers]

Chronic Fatigue Syndrome

Mr. Greg Knight

To ask the Secretary of State for Health (1) what recent assessment he has made of his Department’s guidelines for the treatment of myalgic encephalopathy compared to international best practice; [283105] (2) what recent representations he has received on the revision of treatment guidelines for myalgic encephalopathy issued to trusts by his Department. [283106]

Ann Keen

The Department has not issued guidelines for the treatment of myalgic encephalopathy. Guidelines for the diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis were published in 2007 by the National Institute for Health and Clinical Excellence. They would have responsibility for revising this guidance.

(c) 2009 Parliamentary copyright

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Source: UK House of Commons
Date: July 7, 2009
URL: http://www.publications.parliament.uk/pa/cm200809/cmhansrd/cm090707/text/90707w0031.htm
Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster

[Written Answers]

Chronic Fatigue Syndrome

Lynne Jones

To ask the Minister of State, Department for Business, Innovation and Skills pursuant to the answer of 26 June 2009, Official Report, columns 1198-99W, on chronic fatigue syndrome, who the members of the panel of experts are; and how often it has (a) met and (b) reported on its findings. [283743]

Mr. Lammy

The membership of the expert group set up by the Medical Research Council is as follows:

Professor Jill Belch (Chair) – University of Dundee,
Professor Stephen Holgate – University of Southampton,
Dr. Esther Crawley – University of Bristol,
Professor Philip Cowen – University of Oxford,
Professor Malcolm Jackson – University of Liverpool,
Dr. Jonathan Kerr – St George’s University of London,
Professor Ian Kimber – University of Manchester,
Professor Hugh Perry – University of Southampton,
Dr. Derek Pheby – National CFS/ME Observatory,
Professor Anthony Pinching – Pennisula Medical School,
Dr. Charles Shepherd – ME Association,
Sir Peter Spencer – Action for ME,
Professor Peter White – Bart’s and the London School of Medicine and Dentistry.

The Expert Group has met twice, in December 2008 and March 2009. The notes of those meetings will be published  on the MRC website shortly, and will then be accessible to the public.

(c) 2009 Parliamentary copyright

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Notes:

1] For Minutes of the December 08 meeting of the MRC “CFS/ME Expert Group” see previous posting: MRC Two day Research Workshop 19 and 20 November 2009: http://wp.me/p5foE-2bS. 

Minutes for the March 09  meeting have not yet been published.

2] The MRC “CFS/ME Expert Group” is chaired by Professor Stephen Holgate.

3] No Agenda or list of partipants has been issued for the two day MRC “CFS/ME Expert Group” scheduled for 19 – 20 November. I have submitted a request to the MRC for information under the FOIA for a copy of the Agenda, the list of participants and for clarification of whether the MRC “CFS/ME Expert Group” anticipates holding further meetings beyond the November workshop.

4] The NICE Guideline for CFS/ME (CG 53) is currently scheduled for review in August 2010.

Dr Nigel Speight resigns from children and young person’s organisation AYME

Dr Nigel Speight resigns from the children and young person’s organisation AYME

For many years, paediatric specialist, Dr Nigel Speight, has been a champion of families with a child or young person with ME or where ME is suspected. 

He has advocated for families facing wrongful accusation of MSpB (FII), where child protection orders have been instigated or threatened following disagreements between the family and the child’s medical professionals over the management of the condition, where medical professionals have been unwilling to make a diagnosis of ME and where social services have become involved in the case when a child or young person has been unable to regularly attend mainstream school due to ill health.

Dr Speight recently announced his resignation as a Patron to the children and young person’s patient organisation, AYME [Association of Young People with ME]  http://www.ayme.org.uk/.

AYME’s Medical Advisor is Dr Esther Crawley, Consultant Paediatrician at the Royal National Hospital for Rheumatic Diseases NHS Foundation Trust. Dr Crawley had been a member of the NICE CFS/ME Guideline Development Group. 

Dr Speight, who is now retired from the NHS, has become a Medical Advisor to the 25% M.E. Group.

The following announcement was published in a recent 25% M.E. Group newsletter:

I just thought I should inform you officially that after a long and happy association with AYME I have decided to resign as their Patron. Without going into too much detail I would say that over the last couple of years I have become aware that they have changed their position on several areas and that our views have accordingly diverged. In particular AYME seem to have become more willing to collaborate with the medical and psychiatric establishment in order to appear respectable. This appears to have been the cause of AYME’s relative enthusiasm for the NICE Guidelines, which most of us feel involve an overemphasis on CBT and GET. This compromise seems to have helped the psychiatrists to get a new lease of life.

The result of all this is that AYME appear to have alienated themselves from most of the other ME charities (with the exception of AfME [Action for M.E.] who appear to be taking a similar position). In this controversy I feel more in sympathy with the rest of you. I have gained the impression that AYME no longer appreciate my opinions and prefer my status as their figurehead to be a largely silent one. It is a combination of all these factors that has caused me to resign and I am sure you will all understand.

With Best Wishes

Nigel Speight

Revised MEA statement on retrovirus XMRV and ME/CFS

Revised MEA statement on retrovirus XMRV and ME/CFS

WordPress Shortlink: http://wp.me/p5foE-2cD

http://www.meassociation.org.uk/content/view/1051/161/

RETROVIRUS XMRV and ME/CFS: WHAT DO WE KNOW SO FAR? AND WHAT DON’T WE KNOW? (VERSION 2)

This is a considerably extended and updated version of our first summary on XMRV research. It includes additional information relating to questions that are coming to the MEA about the research findings, in particular questions concerning possible transmission and spread of XMRV, availability of private and NHS tests for the virus here in the UK, possible treatment of XMRV with antiviral drugs, and volunteering for UK research studies. We also report on a new research study from Germany that has queried the link between XMRV and prostate cancer.

This summary is intended to be a balanced account which not only raises questions but is also very cautious when it comes to drawing any firm conclusions about the role of XMRV at this very early stage in the research.

BACKGROUND

On Friday 9 October, the front page of the UK Independent newspaper carried a major news item under the heading ‘Has science found the cause of ME?’ This referred to new research findings from America which indicate that a recently discovered retrovirus, known as XMRV (xenotropic murine leukaemia virus-related virus), could be playing an important role in causing or maintaining ME/CFS. The news item was accompanied by a very supportive editorial about the need for recognition and research into ME/CFS. These two items can be read here

The Independent story was soon followed up by the rest of the UK media, including the BBC. Most of the news reports gave a reasonably balanced and accurate account of the research. However, some reports incorrectly inferred that the cause of ME/CFS had now been conclusively discovered and that an antiviral treatment would soon be available. A selection of UK media reports can be found in the October news archive on the MEA website.

The actual research paper was published in the online edition of Science, along with a perspective written by John Coffin (Department of Molecular Microbiology, Tufts University, Boston, USA) and Jonathan Stoye (National Institute for Medical Research, London).

References:

Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome. Lombardi V et al. Science October 8 2009 Abstract: http://www.sciencemag.org/cgi/content/abstract/1179052

A new virus for old diseases? Coffin JM and Stoye JP. Science October 8 2009 326; p215 Abstract:
http://www.sciencemag.org/cgi/content/abstract/1181349

Additional online data from the study can be obtained if required.

XMRV has also been found in an American study in men who have prostate cancer. This was partly why the ME/CFS study was carried out. However, the most recent study on XMRV in prostate cancer from Germany has queried any such a link and suggested that one possible reason could be a geographically restricted incidence of XMRV infections.

Reference:

Lack of evidence for xenotropic murine leukaemia virus-related virus (XMRV) in German prostate cancer patients. Retrovirology 2009, 6:92. Available on-line: http://www.retrovirology.com/content/6/1/92

MEA POSITION

These are potentially important research findings that could help with both the diagnosis and management of ME/CFS. We congratulate all those involved in deciding to do this research study.

However, a number of questions still have to be answered before anyone can conclude that this virus plays a significant role in either the cause, transmission, clinical assessment or management of ME/CFS.

The research has demonstrated a correlation between ME/CFS and XMRV – not that it is the causative infection.

Much more epidemiology and laboratory work now needs to be done to answer the essential points set out below:

◦ Carrying out further and larger studies using different populations of people in different countries with ME/CFS. This work should include people at different stages of the illness (to see if the virus is present in the same percentages in both early and late cases) and in all degrees of severity. Research in different countries is vital in view of the conflicting geographical findings relating to XMRV in prostate cancer.

◦ Using different international laboratories to test for evidence of the virus.

◦ Assessing what, if any, correlation there is between the presence of this virus and (a) severity of symptoms, (b) a clear infectious onset with a known infection, (c) immune system abnormalities, CD4 abnormalities in particular, and (d) various other factors involved in sub-grouping of people under the ME/CFS umbrella.

◦ Assessing to what extent this particular retrovirus virus is also present in other chronic conditions, especially those such as multiple sclerosis and lymphoma where viral infections have been implicated as a causative factor.

◦ Assessing whether this virus is acting as a benign marker of disease or immune dysfunction, or is a ‘passenger virus’, or whether it has a role in the actual disease process and development of symptoms.

◦ Investigating whether the presence of the virus in healthy people acts as a predisposing factor in the development of ME/CFS (possibly when another infective trigger appears) and/or prostate cancer – rather than being involved in the actual disease process.

◦ Investigating what effect, if any, the virus has in healthy people who carry it over a period of time.

◦ Assessing whether people with evidence of the virus should be treated with antiretroviral medication, and if so developing a suitable antiviral drug or combination of antiviral drugs.

◦ Assessing whether animal model studies would help to increase our understanding of the way in which this virus may infects cells and possibly cause disease.

TESTING FOR XMRV

Until these research findings have been robustly replicated, and we have the answers to some of the above questions, there is no point in asking your doctor to be tested for XMRV. This is because the NHS does not currently have the facilities to do so and the testing procedures are only being used in a research capacity at present. But if it does turn out that there is a consistent and strong association with ME/CFS then testing for XMRV would almost certainly have to be made available.

We are not aware of any private pathology laboratories here in the UK that are able to test for XMRV, or are intending to start offering this test. Private testing is available in some countries outside the UK.

VIRAL TRANSMISSION

We know that some people with ME/CFS are now very concerned about the possibility of transmission of XMRV through what are termed body fluids (ie blood, saliva, semen). However, until we know more about what this virus does in the body it would be premature to start arriving at firm conclusions and recommending all kinds of restrictions to normal daily living. Remember: we still do not know for certain whether this is a disease-causing virus in humans and whether it plays a role in causing or maintaining ME/CFS.

And if this virus was behaving as an ‘ME virus’ in the way that HIV, another retrovirus, causes and transmits HIV infection, often leading to AIDS, there would be a significant number of sexual partners of people with ME/CFS developing ME/CFS – but this is clearly not the case.

One simple way of obtaining some early clues about viral transmission of XMRV would be to test for the presence of the virus in healthy partners and offspring of people who have the infection and comparing the findings to a control group of people that have no such link.

PRESENCE OF XMRV IN THE HEALTHY POPULATION

If this virus is also present in up to 4% of the normal healthy population here in the UK (ie around 2.4 million, or ten times the number of people who have ME/CFS), as appears to be the case in America, and it does play a significant role in diseases such as ME/CFS and prostate cancer, there will be widespread and very serious implications for public health, blood donation etc. This could also include vaccination against the virus and treating people who are XMRV positive. But these are complex decisions which can only be made in the light of further research studies.

In relation to blood donation in the UK, current advice is that people with ME/CFS who have symptoms, or are receiving treatment, should not donate blood. It would seem sensible in the short term, until we know more about transmission and pathogenicity of XMRV, to consider extending this restriction to people who have recovered from ME/CFS. It seems strange that many overseas countries have not followed the UK lead on blood donation and ME/CFS.

WHAT CAN WE LEARN ABOUT THE ROLE OF INFECTION FROM OUTBREAKS OF ME/CFS?

It should be noted that unlike the retroviral infection HIV, ME/CFS is an illness that occurs both sporadically and in highly localised acute geographical outbreaks, often involving closed communities such as schools and hospitals, where there is no obvious evidence of bodily fluid transission. This fact would obviously question the role of XMRV as a precipitating infection in the onset of the illness.

In the pivotal Royal Free Hospital outbreak of ME, far more than 4% of a previously healthy population of doctors and nurses contracted an unknown infection at roughly the same time (the hospital had to close due to lack of staff). This fact would question the role of XMRV as a key predisposing factor if it only occurs in 4% of the population.

TREATMENT OF XMRV

Until we know more about the possible role of XMRV in ME/CFS there is no point in asking your doctor about antiviral drug treatment. If it turns out that the virus does play a role in causing or maintaining ME/CFS then antiviral drug treatment will need to be investigated. This will involve clinical trials to test possible drug treatments for both safety and efficacy – a process that normally takes a comsiderable amount of time and money.

The 2007 NICE Guideline on ME/CFS specifically states that doctors should not use antiviral medication to treat ME/CFS. This dogmatic position is unlikely to change without clear evidence of benefit in good quality randomised clinical trials.

ROLE OF THE MEA RAMSAY RESEARCH FUND and VOLUNTEERING FOR RESEARCH

The ME Association is keen to progress this research here in the UK through any way we can help. We have already made contact with virologists who are interested in this virus here in the UK and funding from the Ramsay Research Fund (RRF) could be made available very quickly if we receive a good quality research proposal.

More information on the work of the RRF can be found here

Since publication of these results it has become apparent that a number of international research groups are intending to try and confirm or refute the findings. The MEA has been contacted in relation to four such groups already – two from overseas. This is obviously good news and should help to clear up some of the immediate uncertainties.

If volunteers are required for any research taking place in the UK we will place an annoucement on the MEA website.

KEY FACTS ABOUT THE XMRV RESEARCH

◦ An American group from the Whittemore Peterson Institute, in collaboration with the National Cancer Institute and the Cleveland Clinic, have reported finding evidence of a human retrovirus known as XMRV in blood samples taken from people with ME/CFS.

◦ Using peripheral blood mononuclear cells, DNA (viral genetic material) from the virus was found in 67% of patients (68/101) compared to 3.7% in healthy controls (8/218).

◦ The XMRV virus was shown to grow in cell culture in the laboratory.

◦ Further studies have found that 95% of people with ME/CFS have antibodies to the virus – indicating an immune response to a recent or past infection.

◦ Blood samples were collected from people with what is referred to in the paper as CFS who live in different parts of the United States, as well as from healthy controls.

◦ A more detailed, but easy to understand, summary of the XMRV research has been prepared by Dr Suzanne Vernon for the CFIDS Association of America. This can be read on their website: www.cfids.org/cfidslink/2009/110402.asp

◦ The paper in Science does not provide any detailed information about the patient group (ie age, gender, illness characteristics) or control group. However, a report on the research published in The Wall Street Journal states that 20/101 people in the CFS group also had a lymphoma, a type of cancer affecting the lymph nodes. Questions have therefore been raised about the inclusion of these patients in the CFS group, as well as the make up of the control group and how these patients were selected. See commentary from Professor Andrew Lloyd published on the website of the ME/CFS of NSW, Australia: www.me-cfs.org.au/node/448

KEY FACTS ABOUT RETROVIRUSES AND XMRV

◦ Retroviruses are a small group of human viruses that consist of HIV (causing AIDS) , HTLV-1 (causing T-cell leukaemias and lymphomas) and HTLV-2 (often asymptomatic not yet clearly linked to any specific disease).

◦ They were discovered in the 1980s when it became possible to culture T-cells in vitro.

◦ They infect CD4 bearing lymphocytes – a special type of immune system cell that is derived from the thymus gland.

◦ Endogenous retroviruses (ERVs) are also found in humans and usually cause no ill effects.

◦ XMRV is retrovirus that was first described about three years ago in some men who have prostate cancer.

◦ It may also be linked to other medical conditions, including fibromyalgia.

◦ XMRV is related to a group of viruses that can infect mice.

◦ This type of virus is thought to be transmitted through body fluids such as blood, semen and breast milk. It is not thought to be transmitted through the air – like a flu virus.

◦ Testing for evidence of the XMRV virus in blood is currently only available at a few specialised laboratories here in the UK.

◦ Demonstrating a link between a retrovirus and ME/CFS does not, by itself, resolve the physical vs psychological debate. Research studies have demonstrated links between retroviruses and diseases as diverse as autoimmune disorders (which could be relevant to ME/CFS), immunodeficiency diseases, multiple sclerosis, tumours, anaemias and schizophrenia.

CONCLUSION

The bottom line to this interesting research is that it currently raises more questions than answers.

◦ Does the presence of XMRV in healthy people make them more likely to develop ME/CFS when another infection appears?
◦ Does XMRV cause ME/CFS in some cases?
◦ Does XMRV become active as a result of having ME/CFS?
◦ Or is it simply an innocent bystander with no role in the illness?
◦ Should XMRV be treated?

When we have accurate answers to at least some of these questions we can move forward, if necessary, with testing and treatment.

We will update this summary as further information becomes available.

If you want to comment on it please do so via meconnect@meassociation.org.uk

Dr Charles Shepherd
Hon Medical Adviser, ME Association

Summary 2 dated 22 October 2009

Concerning a recent statement and report published in the wake of the Judicial Review of the NICE Guidelines on CFS/ME

Concerning a recent statement and report published in the wake of the Judicial Review of the NICE Guidelines on CFS/ME

1 August 2009

In the past two days, various material has been published on the internet in relation to matters arising out of the Judicial Review of the NICE Guidelines on CFS/ME which was heard in the High Court in February, this year. 

This includes a statement issued on behalf of Professor Malcolm Hooper and Margaret Williams.

The statement discloses that in April 2009 a “substantial complaint” was served on the legal representatives for the Fraser/Short legal challenge – a complaint said to be currently before the Legal Complaints Service and the Bar Council Standards Board and the subject of on-going action.

The Statement from Professor Malcolm Hooper has been published by Stephen Ralph, on Professor Hooper’s behalf, on Co-Cure and on ME Action UK site and is dated 29 July 2009.  A second statement issued by Professor Hooper was published on 5 August.

On 30 July, Jane Bryant, Director of the ONE CLICK Group and the Interested Party’s Litigant Friend in the Judicial Review, published a report and commentary on the ONE CLICK Group site. Selected court documents were also placed in the public domain on 30 July which form an integral part of the report and which need to be read in conjunction with this report.

The report reveals that following the Judicial Review hearing, Beachcroft LLP, the solicitors acting for NICE, submitted a Wasted Costs Application which was granted by the High Court and that in June 2009, Leigh Day & Co were served with a Wasted Costs Order of £50,000, payable to the Defendants, NICE.

As some of the issues set out and discussed within the statements, the report and associated court documents relate to the “substantial complaint” and “on-going action” against the legal representatives who had acted for the Claimants, Mr Douglas Fraser and Mr Kevin Short, I am not intending to publish the statements from Professor Malcolm Hooper of 29 July and 5 August, nor the report and commentary by Jane Bryant of 30 July.

I refer readers, instead, to the respective websites of those who have published this material.

The statement appended has been published elsewhere, today, by two individuals who were not involved in either the case for the Defendants or that of the Claimants and the Interested Party, but who wish to clarify their respective positions, in the light of recent events. 

Previous postings around the NICE CFS/ME Judicial Review are archived under Category tag NICE Judicial Review 

COURT JUDGMENT Document for hearing 11 and 12 February 2009 in PDF format here:   Approved NICE Judgment  [1.3MB]

NICE PRESS STATEMENT ISSUED: 13 MARCH 2009

NICE statement on CFS/ME judicial review outcome

http://www.nice.org.uk/media/001/6F/CFSMEJRJudgementStatement130309.pdf

or open PDF here:   cfsmejrjudgementstatement130309

The Expected Review Date for NICE G53 is currently given as August 2010.

——————

For BMJ Rapid Responses to NICE related articles and Letters

See: http://www.bmj.com/cgi/eletters/338/jun04_3/b1805#217952

for Rapid Responses to:

PRACTICE:
Pauline Savigny, Paul Watson, Martin Underwood on behalf of the Guideline Development Group
Early management of persistent non-specific low back pain: summary of NICE guidance

(Tom Kindlon, Information Officer, Irish ME/CFS Association)

and http://www.bmj.com/cgi/eletters/339/jul28_3/b3028

for Rapid Responses to:

LETTERS:
Michael Rawlins and Peter Littlejohns
NICE outraged by ousting of pain society president

(Tom Kindlon, Information Officer, Irish ME/CFS Association; Dr Ellen Goudsmit)

 

Permission to repost 

CLARIFICATION BY ANGELA AND STEPHANIE KENNEDY

In light of recent events and suggestions made elsewhere about both of us, we would like to clarify, collectively, the following:

In 2005, Stephanie, after receiving a ‘CFS/ME’ diagnosis in 2001/2002, was subsequently given a ‘borreliosis’ diagnosis, following test results. As anyone with any knowledge of the problems facing people diagnosed with ‘CFS/ME’, or ‘Lyme’, or ‘borreliosis’ will understand, the political situation is not as simple as being diagnosed with one or another. A useful account, for the layperson, of the rank confusion and contestation surrounding ‘Lyme’, ‘borreliosis’ and ‘CFS’ diagnoses is given in Pamela Weintraub’s book “Cure Unknown: Inside the Lyme Epidemic”, with a foreword by Hilary Johnson, author of “Osler`s Web”. It should be noted that many people, initially diagnosed with ‘CFS/ME’, have subsequently received a diagnosis of ‘borreliosis’ or ‘Lyme’, or other condition or disease.

Stephanie remains severely physiologically impaired by her condition, though there have been small improvements due to certain treatments and a proper diagnosis of a cardiac/neurological condition. We would both like to go on record and say, specifically, that none of this improvement has been as a result of NHS policy or ‘care’. Our collective position remains that the NICE guidelines are inappropriate and dangerous.

In 2007, Stephanie attempted to bring, independently from any other party, a Judicial Review against NICE in respect of their Guidelines for ‘CFS/ME’. Because of the other, apparently partially funded, cases being brought at the same time, Stephanie could not secure Legal Aid and therefore unfortunately could not proceed. Situations such as these are apparently quite common and neither of us hold anyone ‘responsible’ for Stephanie’s failure to secure Legal Aid.

Another clarification we need to make is that we had no knowledge of the Short/Fraser case until it was first announced publicly, although it is clear they had knowledge of Stephanie’s case as her solicitors were mentioned by Professor Malcolm Hooper in his statement. Although we kept the One Click group informed of Stephanie’s intention to bring a JR action, we were not given any information by them, and therefore had no knowledge of the One Click JR case apart from that made public by them.

We are both keen to see accuracy prevail, because we believe there are important advocacy lessons that might be learned from a careful analysis of what has happened. For this reason we may have cause to clarify any further issues raise by public comments made by supporters of the Short/Fraser or the One Click JR action.

Due to family problems at the time, Angela was unable to continue campaigning with the One Click Group. Since April 2006, the trajectory of campaigning that One Click has subsequently taken is therefore not that of Angela’s own, although Angela is aware that some of her work was used by One Click in the response to the NICE guidelines (for example, her “Summary of the Psychiatric Paradigm of ME/CFS” document), subsequent to her having discontinued her association with them. Angela has no problem with her previous work on either NICE or the psychiatric paradigm being used by other advocates, and is happy that this work has been of use to people.

Since leaving One Click in 2006, Angela continues to work in advocacy for people suffering because of ‘psychogenic’ explanations for their illness. For example, she co-initiated a campaign to ensure the APPG on ME were made fully aware of the objections many in the ME/CFS community have to the ‘psycho-social’ approach adopted by most of the ‘CFS/ME’ clinics. This was done in support of other advocates who had been highlighting this problem. In 2008 she, with another advocate, tackled the ongoing misrepresentation of the ME/CFS community that was taking place on Wikipedia, an unfortunate result of unsubstantiated allegations, made in the Gibson Report, about members of the ‘CFS/ME’ community ‘harassing’ a Professor. As a result of their attempts to protect the ME/CFS community from such unsubstantiated allegations being incorporated into the Wikipedia article on Simon Wessely, Angela was herself defamed on Wikipedia, and, falsely implicated as being involved in “personally harassing” Professor Wessely. More information on this subject can be found here in the public-archived dedicated Yahoo Group APK-Papers.

Angela continues to advocate for people adversely affected by the scientific and logical flaws in ‘psychogenic’ explanations for illness. She is currently working on an academic project which she hopes will benefit the ME/CFS, Lyme and other patient communities, a project supported by Stephanie. Both continue to support the work of other patient advocates whenever possible.

We both hope that the above clarifies our respective positions.

ANGELA KENNEDY
STEPHANIE KENNEDY

1 August 2009

Documented pathology seen in ME/CFS that contra-indicates the use of GET: Margaret Williams 23 July 2009

Documented pathology seen in ME/CFS that contra-indicates the use of Graded Exercise Therapy

by Margaret Williams

23 July 2009

This document together with previous articles and commentaries by Margaret Williams can be found at ME Action UK

http://www.meactionuk.org.uk/Documented_pathology_seen_in_ME-CFS.htm

http://www.meactionuk.org.uk/Documented_pathology_seen_in_ME-CFS.pdf

The evidence-base of pathology that has been demonstrated in ME/CFS appears within a larger document that is already in the public domain, but is now provided as a 9 page separate item for ease of access.

The UK ME/CFS community may not yet be fully aware of the content of Dr Esther Crawley’s presentation on 8th July 2009 to the Countess of Mar’s “Forward-ME” group meeting held at the House of Lords. The Minutes of that meeting and Dr Crawley’s power-point presentation are accessible at http://www.forward-me.org.uk/8th%20July%202009.htm

Of particular note are the following points made by Dr Crawley:

· The CCRNC (CFS/ME Clinical and Research Network and Collaboration, of which she is Chair) is a “multidisciplinary organisation which exists to promote and support the delivery of evidenced based treatment for children, young people and adults with CFS/ME throughout the UK” whose objective is “To champion evidence-based approaches to the treatment of CFS/ME, such as those provided in the NICE guidelines” and which will use “clinical expertise to inform healthcare policy” and will “provide training for clinicians and researchers from all disciplines involved in the diagnosis and treatment of CFS/ME”.

· The CCRNC has an “Active training programme” and has “the ability to provide national training programmes”.

· The CCRNC will “invite no more than four people drawn from National UK CFS/ME organisations which explicitly support the aims and constitution of the organisation to sit on the Executive committee as either observers or members”.

· Its research strength is that it has the “Largest cohort in the world”.

· Its strengths are “working together — 600 clinicians and researchers, MRC, NIHR (National Institute for Health Research), Welcome (sic), patient and carer reps, charity membership”.

It is particularly notable that the Minutes record that when asked by Dr Charles Shepherd “whether, in the light of the widespread opposition to the NICE Guidelines, charities that were opposed to them would be invited to become members or associates of the CCRNC executive”, Dr Crawley’s response was: “In order to join the collaborative, charities would be expected to sign up to the evidence-based approach”.

The only possible interpretation of this is that patients’ charities are welcome to participate provided that they accept the behavioural modification interventions of CBT/GET recommended in the NICE Guideline (for which Dr Crawley was a member of the Guideline Development Group).

This would seem to be something akin to medical totalitarianism, especially given that Wessely School “evidence-base” upon which the NICE Guideline is predicated has been so stringently criticised by international ME/CFS experts.

See, for example:  http://www.meactionuk.org.uk/JR_Statements_-_extracts.htm

It is worth recalling that at the Royal Society of Medicine meeting on “Medicine and me: ME and CFS” held just three days later on 11th July 2009, MRC Professor of Clinical Immunopharmacology Stephen Holgate said that at the MRC, referees tend to reinforce the status quo and that he was not sure if his wish for an MRC inter-disciplinary group involving immunologists, neurologists and infectious diseases physicians would happen, which would seem to indicate that the psychiatrists’ stranglehold on MRC funding for biomedical research into ME/CFS is set to continue.

The Forward-ME Minutes also record that Dr Crawley said: “the reputation the CFS/ME charities had for infighting was not particularly helpful and prevented research and clinical involvement”.

Given that the “infighting” may have arisen because of the polarised views about the nature of ME/CFS, with the Government-funded charities (Action for ME and The Association of Young People with ME, to the latter of which Dr Crawley is Medical Advisor) supporting the NICE Guideline that is underpinned by flawed research, whilst other charities base their stance on the international evidence that shows the NICE Guideline to be seriously misinformed, it may be timely to look again at the following “evidence-base”.

Dr. Crawley stated that only those ME/CFS charities which agree to “sign up to the evidence based approach” are to be permitted to join her “collaborative”.

Given the volume of biomedical evidence that does not support Graded Exercise Therapy it would appear that in this instance signing up to an “evidence based approach” involves signing up to an approach that ignores most of the evidence.

Science is not furthered by a self-reinforcing “collaborative” determined to exclude dissenting voices; rather, a vigorous and honest dialectic is required. Medicine has no place for cabals and the lazy thinking they foster.

The “Forward-ME” Minutes record that Lady Mar said she hoped that Dr Crawley would “agree to continue to work with Forward-ME”; one can only wonder, sadly, just how far backwards her “Forward-ME” initiative will carry the UK ME/CFS community.

Evidence-based research showing pathology that contra-indicates the use of graded exercise in ME/CFS

There is an extensive literature from 1956 to date on the significant pathology that has been repeatedly demonstrated in ME/CFS, but not in “CFS/ME” or “chronic fatigue”; this can be accessed on the ME Research UK website at

http://www.meresearch.org.uk/information/researchdbase/index.html  and also at http://www.meactionuk.org.uk/Organic_evidence_for_Gibson.htm  

According to Professor Nancy Klimas, ME/CFS can be as severe as congestive heart failure and the most important symptom of all is post-exertional relapse (presentation at the ME Research UK International Conference held in Cambridge in May 2008).

Statements of Concern about CBT and GET provided for JR: Margaret Williams 22 July 2009

Statements of Concern about Cognitive Behavioural Therapy and Graded Exercise Therapy provided for the High Court Judicial Review of February 2009

by Margaret Williams

22 July 2009

This document together with previous articles and commentaries by Margaret Williams can be found at ME Action UK

http://www.meactionuk.org.uk/JR_Statements_-_extracts.htm

http://www.meactionuk.org.uk/JR_Statements_-_extracts.pdf

Over twenty renowned ME/CFS experts provided Statements in support of the Judicial Review of the NICE Guideline on “CFS/ME” heard in February 2009 in the High Court in London. They were specifically written in support of the challenge to the NICE Clinical Guideline on “CFS/ME” and they express concern about the recommendation by NICE that the only management of ME/CFS should be CBT and GET (the same interventions that are the subjects of the Medical Research Council’s PACE Trial).

None of the Statements was accorded the recognition that they merit.

Extracts from those Statements (some of which were of considerable length) are now being placed in the public domain in the interests of ME/CFS sufferers and those who support and care for them.

· “In my view, the Guideline is biased and over rigid in its recommendations and will put a large number of ME sufferers at risk of harm through its strong recommendations for the use of CBT and GET. CBT is based on the idea that somatoform disorders are maintained by abnormal or unhelpful illness beliefs which lead to abnormal or unhelpful behaviour. The first requirement for a somatoform diagnosis is that there be no physical cause for the symptoms. This is not the case in ME/CFS” (Malcolm Hooper, Professor Emeritus of Medicinal Chemistry, University of Sunderland, November 2007)

· “Two forms of treatment…are CBT and GET. CBT is a psychological treatment. Its application in what is certainly an organic disorder is basically irrational. Its putative mode of action is based on the proposition that patients with ME/CFS feel unwell because they have an ‘abnormal illness belief’, and that this can be changed with CBT. It has never been proven to be helpful in the majority of patients with ME/CFS. GET comprises a regime of graded exercise, increasing incrementally over time. It has been almost universally condemned by most patient groups. A number of patient surveys have shown it to be, at best, unhelpful, and at worst, very damaging. Its application is counter-intuitive, particularly when one of the most debilitating and well recognised symptoms of ME/CFS is post-exertional malaise which can put some patients in bed for days after relatively trivial exertion” (Dr William Weir, Consultant Physician, November 2007)

· “The GDG has placed undue reliance upon a small number of RCTs that were methodologically flawed because they did not adequately define the patient population” (Dr Terry Mitchell, formerly Consultant Clinical Lead (CNCC) of the Norfolk, Suffolk & Cambridgeshire NHS ME/CFS Service, 23rd June 2008)

· “The predominance of psychologists / psychiatrists on the GDG is entirely inappropriate and has led to a biased analysis in my opinion. The GDG has placed undue emphasis on a few UK clinical trials which support the use of psychological treatments, however, these studies did not properly or adequately define their patient population” (Dr Jonathan Kerr, Hon. Consultant in Microbiology; Consultant Senior Lecturer in Inflammation; Principal Investigator of the CFS Group, St George’s University of London, 11th August 2008)

· “You will see from my attached treatise that I consider that the recommendation of CBT and GET as blanket treatments of ‘clinically excellent’ first choice is extremely dangerous to patients. I am concerned that NICE claims that an adequate evidence base supports CBT/GET, when in fact the Guideline Development Group (GDG) relied almost exclusively on a handful of extremely controversial RCTs (random controlled trials). I have no doubt that patients in the research quoted by the GDG did not have ME/CFS” (Dr Irving Spurr, Newcastle ME Research Group; 12th August 2008)

· “My overall impression reading the Guidelines for the first time was one of alarm. I will limit my comments to the deficiency which has the greatest potential for harm to patients. The NICE Guidelines do not make any reference to the biomedical literature on ME/CFS. A physician who is new to the field and who has not had time to read the thousands of paper reporting measurable abnormalities in ME/CFS may get the impression that: (1) Biomedical issues are irrelevant in ME/CFS and that (2) CBT and GET actually make the core symptoms of people with ME/CFS better. A close read of the literature reveals that none of the core symptoms of ME/CFS improve with CBT or GET. The recommendation for GET stems from the often quoted but unproven assumption that deconditioning causes or exacerbates ME/CFS. In fact this assumption has been disproven (Bazelmans et al 2001; Harvey et al 2008) and cannot therefore be used as a basis for treatment. Informed consent is an ethical requisite in the practice of medicine. Informed consent requires that patients embarking on any therapy be told the potential benefits and risks of the therapy being recommended. Meeting this legal standard in ME/CFS requires that patients be told about the potential benefits and risks of CBT/GET. If patients are being coerced to believe what is not true, psychological trauma can result. If patients are pushed to increase activity beyond their capabilities, exacerbation of symptoms can be expected. The NICE Guidelines are biased towards a particular model of CBT/GET that is widely viewed as ineffective and potentially unethical” (Dr Eleanor Stein, Consultant Psychiatrist, Calgary, Alberta, Canada, 12th August 2008)

· “(Graded exercise therapy) is not therapy – it is simply the enforcement of an opinion rather than a treatment based upon any scientific examination of a patient’s pathology and treatment of that pathology. I believe that those who developed (the) graded exercise programme as a valid treatment of ME have already been soundly criticised to the Courts. I also believe scientific evidence that such a programme is against the best interests of ME patients has already been presented. The benefit of such a programme is to the interests of the insurance industry and not the patient. Graded exercise programmes may be significantly dangerous to many of these ME patients” (Dr Byron Hyde, Clinician specialising in ME, having examined over 3,000 patients between 1984 – 2008; Ottawa, Canada; 15th August 2008)

· “(The GDG) produced a Guideline that recommends CBT and GET as the prime treatment yet there is in fact published evidence of contraindication / potential harm with GET. This has been published by independent researchers (e.g. Peckerman et al). The NICE GDG claims that CBT/GET are supported by significant research. In fact the GDG relied almost exclusively on specious reports which are unproven” (Dr Derek Enlander, Virologist specialising in ME/CFS; formerly Assistant Professor at Columbia University and Associate Director of Nuclear Medicine at New York University; Physician-in-Waiting to the UK Royal Family and to members of HM Government when they visit New York; 18th August 2008)

· “I regard the continuing aura of disbelief surrounding the illness and mainly emanating from the psychiatrists as detrimental to both medical progress and the interests of sufferers” (Dr Nigel Speight, Consultant Paediatrician specialising in ME/CFS; 20th August 2008)

· “It is with regret that I note that the NICE Guidelines do not take into account recent developments in the management of ME. They lean towards a psychological and psychiatric basis, when it is now recognised that there are a large number of medical problems associated with ME. Recent studies on genetics, the central nervous system, muscle function and persistent infections have shown that there is a great deal of medical information available with regard to the management of ME” (Dr Terry Daymond, Consultant Rheumatologist and recently Clinical Champion for ME for the North-East; 22nd August 2008)

· “Research from the ‘organic school’ identified many pathophysiological abnormalities in patients with ME/CFS resulting from dysfunction in a number of vital control systems of the body such as the central nervous system, the autonomic nervous system, the endocrinological system and the immune system. The attitude of the ‘psycho-social’ school continues to be to largely ignore this research. It seems they can only maintain their hypothesis by discouraging the search for an organic basis and by denying the published evidence, which they are certainly doing. This unseemly battle of ideas has been settled politically by proclamation and manipulation, not by science, and not by fair and open means. CBT and GET appear to be based on the rationale that patients with CFS/ME have ‘faulty’ belief systems concerning the ‘dangers’ of activity, and that these aberrant beliefs are significant perpetuating factors. If CBT to ‘correct’ these ‘false’ beliefs can be combined with a graded exercise programme to re-condition these patients, it is virtually promised that a significant proportion of them will improve both their attitude and their physical functioning, and thus cure their illness. Using CBT, patients are therefore to be challenged regarding their ‘aberrant’ thoughts and expectations of relapse that the ‘psycho-social school’ psychiatrists believe affect symptom improvement and outcomes. Cognitions concerning fatigue-related conditions are to be addressed; these include any alleged ‘over-vigilance to symptoms’ and reassurance-seeking behaviours, and are to be dealt with using re-focusing and distraction techniques. It is when a therapy such as CBT begins to interfere with the natural warning systems, of which both pain and fatigue are a part, that the increased risks arise. In particular, musculo-skeletal pain and fatigue have essential function in modulating activity when the body is in a state of disease as in ME/CFS. NICE, however, recommends over-riding this essential safety-net, thus the risk of serious harm is increased in this situation of simultaneous activity and symptoms denial. This will become a more serious risk in patients with more severe ME/CFS. The Guideline does not indicate how the clinician can tell whether patients’ beliefs concerning their symptoms are aberrant and/or when the symptoms accurately point to the underlying state of the disease process” (Dr Bruce Carruthers, Consultant Physician, Vancouver, Canada, 29th August 2008)

· “There have been only five trials of CBT with a validity score greater than 10, one of which was negative for the intervention; and only three RCTs of GET with a validity score greater than 10. The total number of available trials is small; patient numbers are relatively low; no trial contains a ‘control’ intervention adequate to determine specific efficacy, and their results are relatively modest. In addition, some of the studies (particularly those on GET) have used the Oxford criteria for diagnosis, a rubric which allows selection of patients with chronic fatigue states and which do not necessarily exclude certain psychiatric disorders, raising the question of the applicability of the results of these studies to the many patients with specific biomedical symptoms and signs consistent with myalgic encephalomyelitis. Again, the heterogeneity of the trials, the potential effect of publication or funding bias for which there is some evidence, and professional doubts about the evidence base for some behavioural therapies themselves give grounds for caution as regards the usefulness of (CBT/GET). A commentary in the BMJ (Bolsover 2002) is particularly relevant: ‘Until the limitations of the evidence base for CBT are recognised, there is a risk that psychological treatments in the NHS will be guided by research that is not relevant to actual clinical practice and is less robust than is claimed’. Indeed, a large body of both professional and lay opinion considers that these essentially adjunctive techniques have little more to offer than good medical care alone” (Dr Neil Abbot, Director of Operations, ME Research UK; Hon Research Fellow, Department of Medicine, University of Dundee, 29th August 2008)

· “The overall flavour of the Guideline is to lump together all patients with ‘medically unexplained fatigue’, from relatively mild to profoundly disabling illness and to treat all patients with a standard approach of gradual reconditioning and cognitive behavioural modification. By lumping such a heterogeneous mix of patients…patients with CFS or ME are left with very limited options, and little hope. In addition, this document proscribes immunological and other biologic testing on patients with (ME)CFS in the UK, despite the evidence in the world’s medical literature that such testing produces most of the biomedical evidence of serious pathology in these patients. Equally unfortunate is the GDG’s recommendation for behavioural modification as the single management approach for all ‘medically unexplained fatigue’. This month we participated in the International Conference on Fatigue Science in Okinawa, Japan. Dr Peter White of the UK presented his work using behavioural modification and graded exercise. He reported a recovery rate of about 25%, a figure much higher than seen in US studies in (ME)CFS and, even if possible, simply not hopeful enough to the 75% who fail to recover” (Professors Nancy Klimas and Mary Ann Fletcher, University of Miami; 13th September 2008)

· Attached as an appendix to their Statement was a separate Summary of Current State of Understanding of (ME)CFS), from which the following quotations are taken: “Many of the symptoms of (ME)CFS are inflammatory in nature. There is a considerable literature describing immune activation in (ME)CFS. Overall the evidence has led workers in the field to appreciate that immunologic abnormalities are a characteristic of at least a subset of (ME)CFS and that the pathogenesis is likely to include an immunologic component. Fulcher and White (2000) suggest a role for deconditioning in the development of autonomic dysfunction and overall level of disability in (ME)CFS patients. On the other hand, Friedberg et al (2000) suggest the long duration (ME)CFS subjects are more likely to have symptoms suggestive of chronic immune activation and inflammation. We are currently working with investigators at the Centres for Disease Control and the University of Alberta looking at the mediators of relapse after exercise challenge using gene expression studies, neuroendocrine, immune and autonomic measures”

· “My main concern about the NICE document is that what must be great uncertainty in both costs and particularly in quality of life difference is not allowed for” (Martin Bland, Professor of Health Statistics, University of York, 17th September 2008)

· “The guideline is dominated by positive and largely uncritical recommendations for CBT and GET. However, the guideline plays down the fact that patient experience has consistently reported that significant numbers of people with ME/CFS find these approaches to be either unhelpful or, in the case of GET, makes their condition worse. Some of the hospital-based services are not being physician-led but ‘therapist-led’. In some cases people are now being given little more than a ‘therapist-led’ management assessment followed by an offer of CBT and/or GET. I received some very unhappy patient feedback on this type of service on Saturday 11th October (2008) in Colchester, Essex, where great dissatisfaction was expressed by many members of the audience who attended the ME Association’s ‘Question Time’ meeting” (Dr Charles Shepherd, Medical Adviser, ME Association, 24th October 2008)

· “I am a consultant immunopathologist and before retirement worked at St James’ University Hospital, Leeds. A key area of my professional interest was and remains myalgic encephalomyelitis and I have carried out research into the disorder. For a number of years I ran clinics specifically for patients with ME. In my opinion NICE guidelines overemphasise the usefulness of CBT and GET to the detriment of patients. I have no hesitation in stating that in my opinion, the situation for ME/CFS patients is worse, not better, since the publication of the NICE Guideline” (Dr Layinka Swinburne, Leeds, 22nd October 2008)

· “As my clinical freedoms were progressively eroded, it meant that I was becoming ineffective and indeed possibly dangerous as a practitioner. All that patients could be offered was CBT coupled with GET, which I consider not to be appropriate for many of my patients and in the case of GET potentially damaging for some” (Dr Sarah Myhill, General Practitioner specialising in ME/CFS, Powys; Secretary of the British Society for Ecological Medicine, 10th November 2008).

GOSH gives platform to Lightning Process

(Correction: An earlier version of this post erroneously associated Ms Anna Gregorowski with the PRIME Project – apologies to Ms Gregorowski for this misattribution. )

GOSH gives platform to Lightning Process

Please note that ME agenda is unable to enter into correspondence around the Lightning Process.

In the previous posting Forward-ME: Minutes of meeting 8 July 2009 Dr Charles Shepherd (ME Association) is reported as having raised concerns in relation to a forthcoming event at University College London in conjunction with Great Ormand Street Hospital (GOSH) at which Phil Parker of the Lightning Process is scheduled to give a presentation.  Also presenting is Prof Peter White (BARTs, co-PI for the PACE Trial). 

See:  Forward-ME: Minutes of meeting 8 July 2009  Minute item 5. Lightning Process

The event to which this item refers is:

University College London in conjunction with Great Ormond Street Hospital

http://www.ich.ucl.ac.uk/education/short_courses/courses/2S-88

From Assessment to Recovery: Holistic Approaches to Working with Young People with CFS/ME

This annual one day event will provide you with skills and knowledge on how to manage Chronic Fatigue Syndrome (CFSME) when working with children and young people.

The holistic theme is throughout the day from diagnosis to treatment. You will learn about motivational interviewing and have an introduction to the Lightning Process. You will hear from young people accessing support at GOSH and be able to ask them questions.

There will be two interactive workshops: Dietary management and Interdisciplinary skills for treatment. There will be a mini-lecture focussed on Medical management.

Date: 30 September 2009

Why you should attend

The day will provide

- Interdisciplinary assessment and treatment ideas

- opportunity for networking

- interactive workshops

- informative presentations

Who should attend?

Clinicians and health professionals who work with young people and /or have a special interest in CFSME

Programme

Please note that this is a draft programme and is likely to change before the event. Please continue to check the website for updates.

08.45 – 09.15 REGISTRATION & REFRESHMENTS

09.15 – 09.45 Keynote address Ms Anna Gregorowski

09.45 – 10.30 The importance of diagnosis & the power of labeling for patients with chronic, unexplained, disabling fatigue Professor Peter White

10.30 – 11.15 Helping kids get ready, willing & able to make changes: motivational interviewing in chronic illness Dr Deborah Christie

11.15 – 11.30 REFRESHMENTS

11.30 – 12.30 Video diaries Patient/parents

12.30 – 13.00 Outpatient Rehabilitation Programme at GOSH Dr Anna Hutchinson & Monica Samuel

13.00 – 13.45 LUNCH

13.45 – 14.00 Networking options

14.00 – 15.15 Workshops/Mini lectures (each delegate selects 1 workshop/mini lecture to attend)

1. Dietary management of CFS/ME Judith Harding

2. Clinical investigation…to test or not to test Dr Vic Larcher, Dr Jo Begent & Dr Terry Segal

3. Basic skills of treatment & management of CFSME, including relapse prevention Dr Anna Hutchinson & Monica Samuel

15.15 – 15.30 REFRESHMENTS

15.30 – 16.15 Introduction to Lightning Process Phil Parker

16.15 CLOSE

DISCLAIMER

The GOSH Chronic Fatigue Syndrome/ME (CFSME) service is committed to sharing expertise & knowledge related to CFSME & young people. We do not endorse or recommend treatment & management other then that recommended by NICE (www.nice.org.uk) & RCPCH guidelines (www.rcpch.ac.uk).

Speakers

Course Directors:

Dr Anna Hutchinson, Senior Clinical Psychologist

Monica Samuel, Senior Physiotherapist

——————–

Please refer to UCL site for meeting registration details

Forward-ME: Minutes of meeting 8 July 2009

Would Dr Esther Crawley like to provide evidence to support this statement?

“Dr Crawley explained that the reputation the CFS/ME charities had for infighting was not particularly helpful and prevented research and clinical involvement.”

In February, this year, Dr Crawley, who had been a member of the NICE Guideline Development Group, was awarded £730,000 for research into “CFS/ME” and “Fatigue” in children:

http://www.bristol.ac.uk/ccah/news/2008/12.htmldresthercrawley

 

The Minutes of the last meeting of the Forward-ME group, held on Wednesday 8 July at the House of Lords, have now been posted on the group’s website:

This is a caucus group to the APPG on ME convened by the Countess of Mar, last October. Membership of the group is by invitation only; members of the public are not permitted to attend either as participants or observers.

The 25% ME Group had been a member of Forward-ME but has since withdrawn all involvement with the group. 

—————————-

http://www.forward-me.org.uk/8th%20July%202009.htm

FORWARD-ME

Minutes of the meeting held on Wednesday 8 July 2009 at the House of Lords

1. Present: Christine Harrison – BRAME

Bill and Janice Kent – ReMEmber

Jane Colby – TYMES Trust

Peter Spencer – AfME

Charles Shepherd – MEA

Mary-Jane Willows – AYME

Margaret Mar – Chairman

 

2. Apologies: Tanya Harrison – BRAME

Sue Waddle – MERUK

Kathleen McCall – Invest in ME

 

3. Minutes of the Meeting held on 21 April 2009:

The minutes of the meeting were agreed and signed by the Chairman.

4. Dr Esther Crawley, FRCPCH; PhD, Senior Lecturer at the University of  Bristol and a Consultant Paediatrician, Chair of the CFS/ME Clinical  Research Network Collaborative (CCRNC)

and

Dr Hazel O’Dowd, MSc, D Clin Psych, Consultant Clinical Psychologist, Clinical Champion for CFS/ME services for Avon, Gloucester, Wiltshire and Somerset:

The Chairman introduced Dr Crawley and Dr O’Dowd and thanked them for coming to address the Group.

Dr Crawley gave a PowerPoint presentation a copy of which she kindly agreed to send to us after the meeting (see Presentations )

http://www.forward-me.org.uk/Presentations.htm 

Click the link to open/save the file depending on your browser

CFS/ME Clinical and Research Network and Collaboration by Esther Crawley – PowerPoint Show file

http://www.forward-me.org.uk/Presentations/forwardME_no_photos.pps  (Ed: MS PowerPoint or compatible reader required)

She explained that there were historical issues that had resulted in mistakes being made over patient participation. She had fought for patient/carer involvement and, by the time of the next CCRNC executive there will be 8 patient/carer representatives (4 from charities) on the Executive committee.

The National Outcomes Dataset (NOD) is an essential tool for providing evidence for further research into causation and treatments.

There are many strengths upon which the CCRNC intends to build. Openness and their recognition of the importance of working together has already attracted MRC, NIHR and Welcome support. The list of current research studies currently being carried out by members of the CCRNC was extensive and covered many medical specialisms.

Provision of services was a serious weakness, especially where children were concerned. Most children did not even get a diagnosis; there was no domiciliary provision for them as, indeed, there was not for most adults who are seriously affected. There was, historically, a lack of patient involvement.

Opportunities for progress were opening up with the ability to do large-scale research on cohorts of 3,000 patients. There was no other comparable large scale cohort in the world.

An open approach which looked at both good and bad results was essential if improvements in care, data collection and sharing, and the ability to apply political pressure were to be achieved.

Dr Crawley explained that the reputation the CFS/ME charities had for infighting was not particularly helpful and prevented research and clinical involvement.

The meeting was opened to questions. Janice Kent asked whether the Genome Wide Association Studies were linked to the genetic research conducted by DR Jonathan Kerr. Dr Crawley explained that his work involved gene expression – how the genes function. This generated hypotheses for further investigations. The results could be altered by effects secondary to the illness – by alcohol, drugs or exercise, for example. Genome-wide association studies involved scanning the DNA of a large cohort of patients to find common genetic variations associated with illnesses which would enable researchers to detect, treat and prevent diseases.

Charles Shepherd asked whether, in the light of the widespread opposition to the NICE Guidelines, charities that were opposed to them would be invited to become members or associates of the CCRNC executive. Dr Crawley acknowledged that, whilst the NICE Guidelines were flawed, they were a start. There was a need for all to work together to produce evidence to effect a change in the guidelines. In order to join the collaborative, charities would be expected to sign up to the evidence based approach. It would be a matter for discussion.

Janice Kent asked about charities and groups that had been excluded from formal representations to the specialist clinics when they were being set up. She explained that they had a wealth of information and experience. Dr Crawley said that the CCRNC want to work with everyone concerned and ask Janice to write to her with the detail.

Christine Harrison asked about coverage by the CCRNC. She explained that the east of England had no specialist services at all. Dr Crawley agreed that provision for most areas was thin. The original budget had been for about £100,000 for each clinical team. To be assessed as cost effective, this would treat 100 patients. Some regions were dealing with 300 patients on this budget. There was a very real need for effective local services.

Christine asked about the grading of patient evidence as NICE had given the very large amount of evidence it received the lowest grading. Dr Crawley acknowledged that the method for grading was imperfect. Patient experience was valuable and should inform high quality research, opening the door to further research.

Jane Colby asked about the rationale of treatments offered for different aetiologies of CFS/ME. Dr Crawley explained that with an illness like CFS/ME which is a heterogeneous disorder there were differences between what was observed clinically and what was shown biologically. She cited schizophrenia and bipolar disorder, which were thought to be separate illnesses but are the same on genome wide association studies. There was a need for caution as not enough was known. In her clinics, patients were offered a variety of options which were individualised. If they made a wrong choice another option would be sought. There is currently no evidence of what will work for different subgroups. Jane asked about return to school. Dr Crawley said that she listened to her patients and helped them to achieve what they thought they could do, whether it was to improve their athletic performance, socialising or education, for example.

Peter Spencer commented on several of the points raised including analysis of data, measurements of effectiveness, benchmarking and people wanting to work with and learn from each other. There was a need to concentrate research resources. Greater patient involvement was key. There was no obligation on PCT’s to take the severely affected into account. The severely affected were particularly neglected; they had no voice and it was not surprising that they were particularly frustrated.

Charles Shepherd commented on the fact that those with the greatest need were given the lowest priority. Dr Crawley suggested a solution would be for them to use the NICE Guidelines which state that the severely affected have the right to have an immediate domiciliary visit and access to all services. If there were no specialists in their area they should ask for an out of area referral. These were costly and, if used enough, local services would be provided on cost grounds. It was not good practice to expect severely affected children and adults to travel long distances for consultations or for physicians to travel to make domiciliary visits. The situation was gradually improving, but effective outcomes were still a drop in the ocean compared with the unfulfilled need.

Dr O’Dowd spoke about training, for which she is responsible within the CCRNC. She accepted that it was not perfect. In 2003 she had to establish training for the first wave of teams with national training for the new clinicians. The DoH mandate was to improve diagnosis by GP’s. This was improving very slowly. Initially, when they set up training courses, only a few interested GP’s attended. It was difficult to attract those who were sceptical about CFS/ME. They then attached training to the end of other events that were more attractive to GPs. There were also local GP training schemes happening in a piecemeal way. They wanted to get CFS/ME on the core curriculum for medical, physiotherapy and occupational therapy training. This was difficult, but there were some successes. She acknowledged that there were regional variations. In some places there was a high staff turnover for specialist services. They were developing the workshops. Additionally, over the next 2 years they hoped to develop an on-line training package that would be easily accessible. Working with the CCRNC had been beneficial as the trainers could have access to a large body of training material from the regions which cut down their workload.

Speaking personally, she said that there was much less scepticism about CFS/ME amongst the people she worked with. She had seen a marked change in her day to day dealings with doctors and other health care professionals. She felt that it was essential that the GP, district nurse and other members of the primary care team should always be involved in home visits. The most successful encounters were those that occurred on a one-to-one basis.

Margaret Mar asked how Dr O’Dowd would address the charge of a lack of balance between the psychological and the biomedical models of the illness at the April meeting of the CCRNC. She said that, after her experience of working with patients with other chronic conditions such as cancer and arthritis, she had been surprised to find that this was an issue with CFS/ME. She had not had any personal problems with it – in fact she found that sufferers have broader minds that many with other illnesses, possibly because they had been so neglected and forced to fend for themselves. The April conference had been full of variety, with lots of biology, but she accepted that they did not get it right. There was a problem in that many invited speakers, whose contributions were valuable, would not attend or would not agree to their papers being made public because they were wary of criticism.

Charles Shepherd asked whether the CCRNC had a view about causation, particularly the roll of deconditioning and abnormal illness behaviour. Dr O’Dowd said there was no overall view as there was no defined causation and the processes were not yet understood. This should not stop people being helpful. Patients understood well what affected them and any fitness programmes were developed jointly with the patient. Very few could be described as deconditioned.

Mary-Jane Willows commented that there was ‘no one voice’. If everyone did the same there would be no learning. Models of service were one of the factors in terms of outcomes.

Janice Kent asked about adverse effects from participation in the PACE trial. She described what had happened to a particular patient from her group, she was advised to obtain the patient’s permission and to feed back to the PACE triallists. It was essential that they were aware of bad results as well as good ones. Dr Crawley pointed out that all treatments have some side effects and that it was important to find those that worked for individual patients.

Christine Harrison asked whether CCRNC had a website. She commented on the lack of any services in East Anglia and asked whether they used patients in their training sessions. She also asked whether CFS/ME should be included in neurology training. There was no dedicated CCRNC website. As CFS/ME was bigger than just neurology, it was not thought appropriate to confine it to ‘one box’. The lack of GP services meant no home visits. As a result, there was an unknown number of patients who had fallen off the radar of NHS care. Unfortunately, there were not enough resources to cover every contingency and it was impossible to train GPs who do not want to listen.

Peter Spencer echoed the need for training and commented on the variations in awareness of CFS/ME. *He understood that Dr Miller of Liverpool University had developed a training module on CFS/ME for the Royal College of physicians. The workshops at the April conference had involved professional workshops and good interaction. Assumptions about the agenda for the conference were, unfortunately, based on assumptions about where speakers came from rather than facts based on what they actually said. AfME was associated with PACE and had been pleased by the very low drop-out rates. He agreed that adverse effects should be reported. There was a need to reconcile evidence of NHS providers with patient surveys on outcomes and to question the differences. In so far as GET was concerned, there was a need to look at the detailed evidence with clinicians. For example, he asked whether it was proper GET. Were randomised control trials appropriate for long-term, chronic conditions such as CFS/ME? He agreed that evidence based principles were essential.

Charles Shepherd asked whether there were exclusion criteria as he had a case where a patient had been excluded on grounds of obesity. Dr Crawley said there was no central policy. She screened her patients because there were other causes of fatigue and she had found one child with undiagnosed leukaemia. She could not judge decisions made by other clinicians.

5. **Lightning Process:

Charles Shepherd had been made aware of a meeting which was to take place at University College London in conjunction with Great Ormond Street Hospital which appeared to promote the Lightning Process for patients with CFS/ME. As Dr Crawley knew something about the subject, she was asked to remain and to contribute to the discussion. Of particular concern was the promotion of the programme to vulnerable clinicians who had just started to practice. After some discussion about the pros and cons of the programme, it was agreed that Mary-Jane Willows would talk to the organisers on behalf of Forward-ME highlighting our concerns.

6. APPG Inquiry:

As this had been discussed at the APPG meeting that took place immediately before the Forward-ME meeting, it was agreed that there was not much more to be said, though there were concerns about delays and the incomplete coverage of prospective witnesses with questionnaires.

7. MRC Project:

***Charles Shepherd reported that the latest information was in the MEA magazine and on their website.

8. Any Other Business:

Margaret Mar reported that she had had an interesting meeting with Dr Wendy Ewart, Director of Strategy for the MRC. She was interested to work with us and to meet the CCRNC team.

Following a letter from InvestinME [sic] in which the difficulties of working with charities and groups who were not of the same mind on particular matters, Margaret Mar had written to them asking whether they wished to continue with their membership of Forward-ME. This would be discussed further at the next meeting.

There being no further business, Margaret Mar thanked Dr Crawley and Dr O’Dowd for their very full presentations and for their candid responses to our questions. She hoped that they would both agree to continue to work with Forward-ME.

9 Date of Next Meeting:

To be advised.

——————-

*Dr Alistair Miller was a presenter at the Royal Society of Medicine “Chronic Fatigue Syndrome” Conference on 28 April 2008:

Download Abstracts and Biographies [PDF 86k]
http://www.rsm.ac.uk/chronicfatigue08/abs.pdf

What drugs can I use? [PDF 243k]
Dr Alastair Miller, Royal Liverpool University Hospital
http://www.rsm.ac.uk/chronicfatigue08/moss_miller.pdf

What drugs can I use? Dr Alastair Miller
http://rsm.mediaondemand.net/player.aspx?EventID=1337

**Please note that ME agenda is unable to enter into correspondence around the Lightning Process.  Please direct any enquiries regarding the content of these Minutes to the Chair of Forward-ME.

***Refers to the MRC CFS/ME multi-disciplinary panel chaired by Prof Stephen Holgate.  Although the group has held several meetings, the group’s Terms of Reference have yet to be agreed and published (FOI Act).

The Elephant in the Room Series Two: ICD-10 Version for 2006 Volume 3 Alphabetical Index

Image | belgianchocolate | Creative Commons

Keywords

APA    DSM    DSM-IV    DSM-V    WHO    ICD    ICD-10    ICD-11    American Psychiatric Association    Diagnostic and Statistical Manual of Mental Disorders    World Health Organization    Classifications    DSM Revision Process    DSM-V Task Force    DSM-V Somatic Distress Disorders Work Group    Somatic Symptom Disorders Work Group    DSM-ICD Harmonization Coordination Group    International Advisory Group    Revision of ICD Mental and Behavioural Disorders    Global Scientific Partnership Coordination Group    ICD Update and Revision Platform    WHO Collaborating Centre    CISSD Project    MUPSS Project    Somatoform    Somatisation    Somatization    Functional Somatic Syndromes    FSS    MUS    Myalgic encephalomyelitis    ME    Chronic fatigue syndrome    CFS    Fibromyalgia    FM    IBS    CS    CI    GWS

 

The Elephant in the Room Series Two:

ICD-10, 10th Revision Version for 2006, Volume 3 Alphabetical Index

On 17 June, I received a communication from the Legal Compliance Officer for the Institute of Psychiatry, King’s College London, in which I was advised:

“Dr Sykes’ original report, which was submitted to Action for ME and the Hugh and Ruby Sykes Charitable Trust, contained an inaccuracy, as has been previously discussed (since Chronic Fatigue Syndrome [CFS] is not listed in the main list of neurological disorders in Vol. I of ICD-10, the original report stated, wrongly, that there was no mention of CFS in ICD-10. In fact there is a mention of CFS in Vol.3, the Index).”

“…This inaccuracy was brought to the attention of Action for ME and the Hugh and Ruby Sykes Charitable Trust. The summary report (sent to you on 2 June) corrects the inaccuracy, and has been communicated to them. Dr Sykes believes that this inaccuracy makes no substantial difference to the conclusions of the report.”

This statement from Legal Compliance confirms that the unofficial CISSD Project was initiated, funded, administered and supported by Action for M.E. and co-ordinated by Dr Richard Sykes on the premise that there was no mention of Chronic Fatigue Syndrome in ICD-10.

A copy of ICD-10 Volume 3 Alphabetical Index, to which the Institute of Psychiatry’s Legal Compliance Officer refers, can be accessed, via Scribd at:

http://www.scribd.com/doc/7350978/ICD10-2006-Alphabetical-Index-Volume-3

ICD-10

International Statistical Classification of Diseases and Related Health Problems

10th Revision Version for 2006

Volume 3 Alphabetical Index

(770 pages For the entry in question, see page 528, top right hand column)

The following documents are also available from the same page:

ICD 9-CM 2005

ICD-10 2006 Tabular List
http://www.scribd.com/doc/7350990/ICD10-2006-Tabular-List

Standard Coding Guideline ICD-10-TM 2006

ICD-10 [Update 2007]

———————

This statement in the original December 2007 CISSD Project report:

“Despite claims to the contrary, the classification of CFS is still an open issue. CFS and CFS/ME are not mentioned either in the latest edition of ICD (ICD-10), or in the latest edition of DSM (DSM-IV).”

was amended in the “Summary report” provided by Dr Sykes to the ME Association (published 3 June 2009) to read:

“2.2 Somatoform Disorders, the International Classifications and CFS

There are still problems associated with the classification of CFS. It is true that CFS is listed under “syndrome” in Volume III, the Index, of ICD-10 and placed in G93.3, a category of neurological illness. But there remain the problems:

“(1) some psychiatrists and others contest this classification of CFS as a neurological disorder,

(2) “fatigue syndrome” is listed in ICD-10 as F48, a mental disorder – which creates the apparent anomaly that “fatigue syndrome” is a mental disorder, but “chronic fatigue syndrome” is a neurological disorder, and

(3) the classification of CFS as a neurological disorder does not seem to be fully integrated into ICD-10.

As far as I have discovered this seems to be the only reference to CFS in all the relevant ICD -10 volumes. For example, CFS is not mentioned in main Volume 1, the Tabular List, of ICD-10 – where one would expect it to be – nor is it included in the current (2007) online version of ICD-10.

It is also true that the WHO gave permission in 2004 for the UK adaptation of the WHO primary care management and diagnostic guidelines on mental health, which in this edition expanded to include some common neurological conditions. This edition of the good practice diagnostic and management guidelines follows the ICD-10 Index code for CFS as G93. It remains to be seen, however, whether this practice will be followed in ICD-11.”

The “Summary report” on the CISSD Project, published by the ME Association on 3 June, can be read here:

http://meagenda.wordpress.com/2009/06/03/cissd-project-report-from-dr-richard-sykes/

———————

The “Summary report” drew upon content in the December 2007 report provided to Action for M.E. at the end of the Project’s life. But some sections are worded differently and Appendix B in the December 2007 report does not appear at all in the document that has been published by the ME Association.

The full December 2007 report for Action for M.E. can be read here:

http://meagenda.wordpress.com/2009/06/08/the-redacted-bits-sykes-cissd-report-for-the-mea/

The CISSD Project and CFS/ME, Report on the CISSD Project (Conceptual Issues in Somatoform and Similar Disorders) for Action for ME Richard Sykes
December 2007

———————

I include some extracts, below, including the missing Appendix B, followed by a brief commentary:

[...]

CFS and the International Classifications

[...]

Despite claims to the contrary, the classification of CFS is still an open issue. CFS and CFS/ME* are not mentioned either in the latest edition of ICD (ICD-10), or in the latest edition of DSM (DSM-IV).**

[*Ed: The WHO does not use the composite term "CFS/ME" and describes NICE's use of this term as "unfortunate". **This statement was revised in the "Summary report" published by the ME Association, as set out, above.]

[...]

It is true that in 2004 permission was given by the WHO for the UK to adapt the WHO classification for the purposes of Primary Care in the UK and that on this basis a classification has been produced for use in the UK which lists CFS and CFS/ME as a neurological disorder. While many consider that this is a step in the right direction, this classification is a UK adaptation only and has not been formally adopted by the WHO. It has no validity in other countries. No formal decision has yet been made by the WHO and it is still an open question what the official WHO classification of CFS and CFS/ME will be in the next revision. (See also App B.)

[Ed: This statement was also revised in the "Summary report" published by the ME Association, see above.]

[...]

In addition to coordinating the CISSD project and taking part in the CISSD workshops, my own activities have included travel to meet the main international figures involved in these issues and the organization of a separate workshop on CISSD topics as part of an international conference in Croatia. In addition I gave two presentations at that workshop and further presentations at two other international conferences (in Germany and The Netherlands) and at professional conferences in London*, Oxford and Leeds (See App C). I have also produced the co-ordinator’s report on the project.

[Ed: *Melvin Ramsay Society Meeting, April 2007, attended by Dr Charles Shepherd, ME Association, who also gave a presentation. The presentation given by Dr Richard Sykes: "Conceptual Issues in the Classification of ME/CFS" and the Meeting Agenda were advertised by the ME Association on their website.]

[...]

While it is not a foregone conclusion that in the next international revisions CFS will be classified as a “general medical condition” or physical disorder and not as a mental disorder, the CISSD project will increased the likelihood that CFS and CFS/ME* will be so classified.

[*Ed: WHO ICD does not use the composite term CFS/ME.]

[...]

[Ed: Notes 1-3 do appear in the June '09 "Summary report" published by the ME Association but are included here, for context.]

Notes

Note 1, I am most appreciative of the help given by Professor John Bradfield, former Professor of Histopathology at Bristol University, in compiling this report. In addition, he has made numerous other most valuable contributions as Project Advisor to the CISSD Project.

Note 2. There are, most confusingly, a few exceptions to this rule in ICD-10. For example, Irritable Bowel Syndrome is classified both as a disorder of the Digestive System (K 58) and as a Somatoform Autonomic Function Disorder (F45.32) – a mental disorder.

Note 3. The situation is more complex in ICD-10, since ICD-10 includes, besides Somatoform Disorders, a further possible pigeonhole for CFS/ME. This is the subcategory of “Neurasthenia” which ICD-10 includes in addition to the category of Somatoform Disorders. While the project did not specifically address the problems associated with Neurasthenia, there are some strong objections to the subcategory of Neurasthenia and it is possible that this subcategory will be omitted in the next revision of ICD-10.

CFS and CFS/ME are not listed in ICD-10* and of the 4 related conditions that are listed (post-viral fatigue syndrome, benign myalgic encephalomyelitis, neurasthenia, fatigue syndrome), 2 are listed as neurological disorders and 2 as mental disorders. On the one hand “post-viral fatigue syndrome” is classified as a neurological disorder with the code number G33.3 [sic]. In CDDG this is said to include “benign myalgic encephalomyelitis”. Although the adjective  “benign” has long since been dropped and although most users of the term ME now say that ME should stand for Myalgic Encephalopathy, rather than Myalgic Encephalomyelitis** (since there is no evidence of encephalomyelitis), this would appear to be a good reason for saying that ME is implicitly classified as a neurological disorder. (Since G33.4 [sic] is the code for encephalopathy, it would seem that this code rather than G33.3 [sic] is now the more appropriate code for ME.***)

[...]

Appendix B How does the WHO currently classify CFS/ME?

“CFS/ME” (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis or Myalgic Encephalopathy) is the composite name used by the UK Department of Health and other organizations to refer to a condition that has been named and defined in a variety of ways. Generally speaking, “CFS” tends to be preferred by health professionals, “ME” by patients.

Background

The main WHO (World Health Organization) classification of diseases and disorders is the International Statistical Classification of Diseases and related Health Problems (ICD). This classification is a classification of all disorders and related health problems and contains one chapter, chapter V, which is concerned solely with “mental and behavioural disorders”. The classification is revised periodically: the latest revision is the tenth revision (ICD-10) which was published in 3 volumes; Vol P A Tabular List in 1992, Vol 2: Instruction Manual in 1993 and Vol 3: Index in 1994.

Also produced from 1992 onwards was a separate series of volumes that dealt solely with mental and behavioural disorders, the subject of chapter V of ICD. Although the glossary provided by chapter V of ICD was considered adequate for use by coders or clerical workers, it was not recommended for use by health professionals. The first and central volume of the additional series was The ICD-10 Classification of Mental and Behavioural Disorders. Clinical descriptions and diagnostic guidelines (CDDG), produced in 1992, which was intended for general clinical, educational and service use. (Other volumes in this series included The ICD-10 Classification of Mental and Behavioural Disorders. Diagnostic Criteria for Research (DCR), and Diagnostic and Management Guidelines for Mental Disorders in Primary Care; ICD-10 Chapter V Primary Care Version.)

Is CFS/ME classified as a neurological or as a mental disorder in ICD-10?

[Ed: *This statement has been corrected in the "Summary report" published by the ME Association.

**Dr Sykes provides no supporting evidence for this statement.

***Dr Sykes provides no medical evidence to support his proposal that it would be more appropriate for "Myalgic Encephalopathy" to be classified at the same coding as "Encephalopathy" (G93.4), rather than at G93.3, where "Benign myalgic encephalomyelitis" has been coded for many years.]

On the other hand “neurasthenia” is classified as a neurotic disorder with the code number F48.0 and CDDG states that this includes “fatigue syndrome”. So it could be argued that CFS should be classified as a neurotic, and hence, a mental disorder. A case could also be made for coding some cases of CFS as F45 Somatoform Disorders, either as F45.1, the code for Undifferentiated Somatoform Disorder or as F45:3, the code for Somatoform Autonomic Dysfunction, or as F45.9, the code for Somatoform Disorder, Unspecified. All these are codes for mental disorders.

This presents a problem for CFS/ME. If ME is stressed, then it could be argued that CFS/ME should be classified as a physical disorder, since benign myalgic encephalomyelitis is classified as a neurological disorder. On the other hand, if Chronic Fatigue Syndrome is stressed then it could be argued that CFS/ME should be classified as a mental disorder, since fatigue syndrome is classified as a neurotic disorder.

Developments since 1992

In 2004 the WHO Guide to Mental and Neurological Health in Primary Care, Second Edition, was published by the Royal Society of Medicine Press. This was described on the cover and in the frontispiece as “Adapted for the UK, with permission, from Diagnostic and Management Guidelines for Mental Disorders in Primary Care: ICD-10 Chapter V Primary Care Version”.

In this volume the main term used is Chronic Fatigue Syndrome (CFS), which is said to be also referred to as ME (Myalgic Encephalomyelitis or Myalgic Encephalopathy) or as CFS/ME, and this is coded as G93.3. G.93.3 is the code for post-viral fatigue syndrome, a neurological disorder.

So does this settle the matter? Is CFS/ME now officially classified by the WHO as a neurological, not as a mental disorder?

Unfortunately the matter is not quite so simple, for a number of reasons. In the first place the 2004 publication is described as “adapted for the UK, with permission”. This means that it is not applicable in countries outside the UK, in Germany or France etc.. It does not have international applicability. Secondly, even in the UK it applies only to Primary Care (GP level). It does not claim to be applicable to Secondary Care (hospital level).

Thirdly, even in the UK it does not claim to be an official WHO classification. It is an initiative of the UK WHO Collaborating Centre, one of many of the Collaborating Centres worldwide, and is backed by the English Department of Health and a number of other organizations and individuals. It is not an authoritative WHO classification but is intended simply to provide helpful recommendations which UK GPs may use or not use as they wish. In the UK a GP may use any of a number of competing classifications. These include the International Classification of Health Problems in Primary Care (ICHPPP), the Read Codes, and a triaxial classification. They can also choose not to use a classification system at all.

Summary

“CFS” and “CFS/ME” are not listed in ICD-10 and this leaves room for debate as to how they should be listed. The UK WHO Collaborating Centre, with the support of the Department of Health and other organizations, proposed in 2004 that they should be coded as G33.3 [sic], the code for a neurological disorder. These proposals are undoubtedly encouraging for the ME patients’ organizations, who will hope that this initiative will be confirmed in the next revision of ICD-10, but they are not yet official recommendations by the WHO. There remains confusion and debate about how CFS/ME fits in to the official WHO classification.

A note on DSM-IV.

DSM-IV is the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, produced by the American Psychiatric Association. It has been extensively researched and is in widespread use worldwide.

In DSM-IV there is equally no mention of CFS, but neurasthenia is mentioned and is subsumed under Undifferentiated Somatoform Disorder, one of the Somatoform  Disorders. There is an extensive overlap between the symptoms of neurasthenia and of CFS and consequently some argue that this is where CFS should be placed. Against this it could be argued that CFS or ME or CFS/ME should be classified as G93.3 in ICD and hence should not have a place in a manual of mental disorders at all.

So for DSM-IV, too, there is the same uncertainty as to how CFS/ME should be classified.

[Extracts end]

Since the WHO doesn’t use and doesn’t like the composite term “CFS/ME” – it’s all rather muddled, isn’t it? And when presenting to the Ramsay Society meeting, in 2007, around the work of the CISSD Project, Dr Sykes used “ME/CFS”.

Read the review paper published by the CISSD Project leads in July 2007 (Psychosomatics) and you would not know that ME existed as a term in ICD; there is not a single mention of “CFS/ME” or “ME/CFS” or of existing ME and PVFS codings, because ICD and ICD codings are not mentioned at all, and “chronic fatigue syndrome” is only mentioned in passing as one of the so-called “Functional Somatic Syndromes”.

But the Project was described by Action for M.E. in 2006 as the “WHO Somatisation Project” and that “This grant is provided to help lobby the World Health Organisation for the recognition of M.E. and its re-catergorisation as a physical illness”.

What did Action for M.E. understand by that statement? What does it understand, now?

Dr Sykes has published no commentary on the most recent proposals of the DSM-V Somatic Symptoms Disorders Work Group.

In addition to the misconception around Volume 3, there are also other errors in the December 2007 report to Action for M.E. There are several instances in Appendix B where “G33.3″ and “G33.4″ have been used where this should have been “G93.3″ and (presumably) “G93.4″ (the classification code for Encephalopathy).

When Dr Sykes provides the Institute of Psychiatry’s Legal Compliance Officer with an authorised version of the text of the December 2007 report in order to  fulfil my outstanding request for information under the FOI Act, it is hoped that Dr Sykes will have acted on my suggestion that the document is accompanied by a Erratum Notice which addresses the errors and misconceptions in his original report.

One of the recommendations of the CISSD Project workgroup was support for the APA and WHO’s commitment “…to facilitate the achievement of the highest possible extent of uniformity and harmonization between ICD-11 mental and behavioural disorders and DSM-V disorders and their diagnostic criteria” with the objective that “the WHO and APA should make all attempts to ensure that in their core versions, the category names, glossary descriptions and criteria are  identical for ICD and DSM.”

It is worth noting that alliances of rare diseases patient organisations are already actively engaged in dialogue with  the ICD Rare Diseases Topic Advisory Group as it works on its proposals towards ICD-11.

But we have two chapters of ICD-11 to monitor – Chapter VI (G93.3 codes) and Chapter V: Mental and Behavioural Disorders (F45-F48 codes).

The chapter on ICD Mental and Behavioural Disorders is to be harmonized with DSM-V.

The target date for the release of DSM-V is 2012 and some field trials are expected to start this summer.

How many of our UK and international ME advocacy groups, patient organisations,  ME clinicians and researchers are currently engaged in dialogue with the APA and the WHO over the revisions of these complex and enmeshed classification systems?

———————

For the most recent update on the progress of the DSM-V Somatic Symptom Disorders Work Group:
http://tinyurl.com/DSMSDDWGApril09

For a more expansive report on the progress of this Work Group:

The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report  Journal of Psychosomatic Research, Editorial: June 2009
Joel Dimsdale and Francis Creed on behalf of the DSM Workgroup on Somatic Symptom Disorders
http://www.jpsychores.com/article/S0022-3999(09)00088-9/fulltext

(See section: “Psychological factor affecting general medical condition”)

For The Status of the CISSD Project unscrambled:
http://meagenda.wordpress.com/2009/06/10/the-elephant-in-the-room-series-two-status-of-the-cissd-project-unscrambled /

For WHO statement on the use of the composite term “CFS/ME” see paragraph eight:
ME/CFS: TERMINOLOGY, Margaret Williams, 27 April 2009
http://www.meactionuk.org.uk/ME_CFS_TERMINOLOGY.htm

Psychiatric Times  maintains a page of resources for the current edition of DSM, DSM-IV, with updates, articles and commentary around the development of DSM-V.

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.