Statements of Concern about CBT/GET provided for the High Court Judicial Review of February 2009 M Williams

Shortlink: http://wp.me/p5foE-2vO

Statements of Concern about CBT/GET provided for the High Court Judicial Review of February 2009

Open PDF MS Word document: Statements of Concern for High Court

http://www.meactionuk.org.uk/Statements-of-Concern-for-High-Court.htm

http://www.meactionuk.org.uk/Statements-of-Concern-for-High-Court.pdf

Margaret Williams

12 December 2009

This material has been remove by the editor of ME agenda since it contains references to ongoing formal complaints lodged by the Claimants “against their own former solicitors and barrister; initially, both Leigh Day & Co and the Head of Chambers at One Crown Office Row” and a complaint to the Bar Council Standards Board.

Action for M.E: Initial responses to the APPG interim report

Shortlink: http://wp.me/p5foE-2s7

Action for M.E. publishes its initial responses to the Interim Report of the APPG on ME.

http://www.afme.org.uk/news.asp?newsid=702

News

Initial responses to the APPG interim report

03 December 2009

The All Party Parliamentary Group (APPG) on M.E.’s interim report on its Inquiry into NHS services for people with M.E./CFS, was launched yesterday in the presence of the Rt Hon Mike O’Brien MP, Minister of State for Health Services.

The Minister had been shown a courtesy copy of the report in advance of the APPG meeting.

He broadly supported the main thrust of the recommendations, although he questioned some points of detail. He was at pains to point out that budgets and responsibilities delegated to Primary Care Trusts meant that lobbying at the local level for better treatment of patients was usually more effective than looking towards ministerial intervention.

Nevertheless he acknowledged publicly that the implementation of the 2002 CMO report has not been developed sufficiently and that the system in the NHS was not good at dealing with complex illness such as M.E.

He later admitted, as a former Minister in the Department for Work and Pensions, that this Department also did not deal well with this illness.

The Minister identified three priorities:

1. To improve the quality and levels of service across all areas of the country and eliminate the variations in how patients are being treated.

2. To get agreement across the medical profession on a clear view about the clinical pathways for people with M.E.

3. To increase scientific research and our knowledge of the statistics of the needs of those with M.E.

Sir Peter Spencer, CEO, Action for M.E., invited Mr O’Brien to promote research as a key priority, because without a proper understanding of the biology we would not achieve the necessary agreement amongst doctors.

The Minister has agreed to write to the Medical Research Council, highlighting the need for research and to the Department of Health about the postcode lottery which exists for people with M.E.

A full transcript of the meeting will be posted on this website in due course.

Commenting today on the APPG’s interim report, Sir Peter said:

“It is of course disappointing that the full report with the supporting evidence has not yet been published owing to the limited resources available to the Inquiry group.

“However we recognise that it is nevertheless appropriate for the group to promulgate these recommendations early. This creates the opportunity to make the right impact with Health Ministers and with all major political parties at Westminster in order to establish cross party commitment to a longer term agenda that can be followed through when the next Parliament is formed after the election.

“The eleven recommendations in this interim report are welcome.

“There may not be anything that is particularly new here but together these recommendations form a powerful re-statement of the compelling need for improvement and for consistency throughout England in providing high quality healthcare to all people with M.E.

“Action for M.E. supports the emphasis on meeting the particular needs of children and the severely affected.

“We welcome the focus on training in M.E. for medical students, GPs and other healthcare professionals.

“And we strongly agree with the importance attached to biomedical research.”

Commenting on two recommendations in particular, Sir Peter added:

(Recommendation 1): “Establishing accurate estimates of people with M.E. is a major challenge. The pilot disease register which has been developed within the M.E. Observatory with money from the Big Lottery Fund could be expanded to play an significant role in this aspect of the needs assessment within each catchment area of the NHS.”

(Recommendation 4): “In remedying the lack of consistency in treatment options offered in different PCTs, the D of H should address variations in both quantity and quality; it should also implement the Government’s commitment to patient choice with treatments tailored to each patient’s specific needs and preferences.”

Inquiry into NHS Service Provision for ME/CFS 

Click link for PDF:  Official PDF of APPG Interim Report v1

ME Association: Interim report of the APPG on ME inquiry into NHS Services

Shortlink: http://wp.me/p5foE-2rY

http://www.afme.org.uk/news.asp?newsid=701

News

APPG press release on NHS inquiry

03 December 2009

The All-Party Parliamentary Group (APPG) on ME has today launched the interim report on its Inquiry into NHS Service Provision for ME/CFS.

Dr Des Turner MP, Chair of the APPG said the evidence submitted to the Group made it clear that the Department of Health (DoH) and the National Health Service (NHS) needs to significantly increase its efforts to ensure that people with ME/CFS get adequate treatment.

“Currently, services offered to patients with ME/CFS are patchy and we have heard of numerous cases where treatment has simply not been available to any adequate standard. This is confounded by delays in diagnosis and failings on the part of General Practioners to recognise the disease or diagnose it,” said Dr Turner MP.

“We found unacceptable variation in provision between different health trusts which needs to be addressed.”

ME/CFS sufferers continue to be badly treated by the Department of Work and Pensions (DWP) and find great difficulty in accessing disability benefits.

The interim report with recommendations is attached.

——————–

From the ME Association

ME Association: Interim report of the APPG on ME inquiry into NHS Services

A copy of the APPG Interim Report, along with the press release issued by the APPG, can be found in the NEWS SECTION of the MEA website: http://www.meassociation.org.uk

I will be preparing a fairly comprehensive summary of the APPG meeting and hope to have this completed by the end of today (Dec 3rd).

The summary will also contain the MEA response to the Interim Report.

Dr Charles Shepherd
ME Association

—————-

Interim report of the APPG on ME inquiry into NHS Services

Thursday, 03 December 2009 10:43

The interim report of the All Party Parliamentary Group on ME inquiry into NHS services for people with ME/CFS was launched at the group’s meeting in the Commons yesterday (Wednesday 2 December 2009).

In a press statement issued after the meeting, APPG chairman Dr Des Turner MP said the evidence submitted to the group made it clear that the Department of Health (DoH) and the National Health Service (NHS) needs to significantly increase its efforts to ensure that people with ME/CFS get adequate treatment.

Dr Turner said: “Currently, services offered to patients with ME/CFS are patchy and we have heard of numerous cases where treatment has simply not been available to any adequate standard. This is confounded by delays in diagnosis and failings on the part of general practitioners to recognise the disease or diagnose it.”

“We found unacceptable variation in provision between different health trusts which needs to be addressed.”

The parliamentarians said that people with ME/CFS continue to be badly treated by the Department of Work and Pensions (DWP) and find great difficulty in accessing disability benefits.

The interim report and recommendations can be read by clicking here:

http://www.meassociation.org.uk/images/stories/appg_interim_report_v1.pdf

The ME Association hopes to be publishing its own response to the interim report later today. When it is available, it will be published at this website.

——————–

Inquiry into NHS Service Provision for ME/CFS Interim Report

Shortlink: http://wp.me/p5foE-2rL

Inquiry into NHS Service Provision for ME/CFS 

(Last night’s scanned PDF has now been replaced by the official PDF from the secretariat)

Click link for PDF:  Official PDF of APPG Interim Report v1

Sunday Times: Health and safety snoops to enter family homes

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“We run your life, so you don’t have to” courtesy Gordon’s Good Idea

Shortlink for this posting: http://wp.me/p5foE-2oj

It was reported, earlier this year, that some local authorities were planning to instruct tradesmen working in the homes of council and housing association tenants to identify and report potential cases of neglect or child abuse.

* NICE Consultation

http://www.nice.org.uk/guidance/index.jsp?action=folder&o=46007

http://www.nice.org.uk/nicemedia/pdf/PUICHomeDraftGuidanceConsultation.pdf

or open here: PUIC Home Draft Guidance Consultation

NATIONAL INSTITUTE FOR HEALTH AND CLINICAL EXCELLENCE PUBLIC HEALTH DRAFT GUIDANCE
Issue date: April 2010

Preventing unintentional injuries in the home among children and young people aged under 15: providing safety equipment and home-risk assessments

From today’s Sunday Times:

http://www.timesonline.co.uk/tol/news/uk/article6917328.ece

Health and safety snoops to enter family homes

Robert Watts  |  15 November 2009

Health and safety inspectors are to be given unprecedented access to family homes to ensure that parents are protecting their children from household accidents.

New guidance drawn up at the request of the Department of Health urges councils and other public sector bodies to “collect data” on properties where children are thought to be at “greatest risk of unintentional injury”.

Council staff will then be tasked with overseeing the installation of safety devices in homes, including smoke alarms, stair gates, hot water temperature restrictors, oven guards and window and door locks.

The draft guidance by a committee at the National Institute for Health and Clinical Excellence (Nice)* has been criticised as intrusive and further evidence of the “creeping nanny state”.

Until now, councils have made only a limited number of home inspections to check on building work and in extreme cases where the state of a house is thought to pose a serious risk to public health.

Nice also recommends the creation of a new government database to allow GPs, midwives and other officials who visit homes to log health and safety concerns they spot.

The guidance aims to “encourage all practitioners who visit families and carers with children and young people aged under 15 to provide home safety advice and, where necessary, conduct a home risk assessment”. It continues: “If possible, they should supply and install home safety equipment.”

The proposals have been put out to consultation and, if approved, will be implemented next year.

Matthew Elliott, of the TaxPayers’ Alliance, said: “It is a huge intervention into family life which will be counter-productive.

“Good parents will feel the intrusion of the state in their homes and bad parents will now have someone else to blame if they don’t bring up their children in a sensible, safe environment.”

About 100,000 children are admitted to hospital each year for home injuries at a cost of £146m.

—————-

See also Daily Mail  |  10 November 2009

Police report pregnant woman to social services over half-decorated home

—————-

See also, in today’s Sunday Times:

http://www.timesonline.co.uk/tol/news/uk/article6917160.ece

Think tank: freeing us from the ring of suspicion

Jenni Russsell  |  15 November 2009

“…In his Scott Trust speech, Cameron picked up on the themes that this newspaper has been highlighting: the hidden damage being caused by the government’s vetting and barring regimes. He was unequivocal about the malign effect that the new Independent Safeguarding Authority (ISA), with its plans to monitor at least a quarter of the adult population, would have on our lives.”

“Many responsible adults would, the Tory leader said, rather abandon volunteering than go through the rigmarole of a vetting procedure. That mass withdrawal would actually reduce the amount of care and love in children’s lives. This is already happening, although no one in government appears willing to recognise it. Ministers are so busy mouthing platitudes, both in public and in private, about “safeguarding children being our most important priority”, that they don’t want to hear or think about what it means for children when grown-ups decide it’s too risky to spend time with them. Ask them about sports or drama groups closing down for fear of breaking regulations, or of teachers deciding it’s too hazardous to organise school trips, and they say blandly that protection must come first.”

“…They don’t want to know about all the quiet and disastrous ways in which society is being reshaped by the constant message that adults can’t be trusted. Evidence has poured into this paper since the issue was raised here two weeks ago. Some came from professionals who cannot afford any misinterpretation of their interaction with children because of what it means for their jobs.”

Read full article here

Image and video hosting by TinyPic“They run your life, so you don’t have to” courtesy Gordon’s Good Idea

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

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

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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

——————

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

——————

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

————-

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). Continue reading