Category: NICE CFS/ME guideline

Adjournment Debate: Myalgic encephalopathy Mrs Annette Brooke 23 February 10

Adjournment Debate: Myalgic encephalopathy Mrs Annette Brooke


Hansard transcript appended also available on They Work For You

Mr John Bercow, Speaker of the House of Commons, is a Patron to the ME Association.

In June 2002, Mr Bercow had spoken about the need for ME research in a Commons adjournment debate. Text appended below yesterday’s debate.

John Bercow, MP Speaker of the House of Commons        
Annette Brooke, MP       
ME Association

[In connection with the MRC: Yesterday, I contacted the MRC’s Ms Rosa Parker for an update on when the Note of the workshop held by the MRC CFS/ME Expert panel on 19 and 20 November 2009 is anticipated to be published.  It is understood that it is also intended to make available presentation slides from the workshop. I will update when I have a response.

Update @ 24 February  According to the response received from the MRC, this morning, it is understood that the note of the workshop is currently being finalised and will be available on the MRC’s website within the next few weeks and that copies of speakers’ presentations will be published at the same time.]

Adjournment Debate: Myalgic encephalopathy Mrs Annette Brooke (Liberal Democrat, Mid Dorset & North Poole)

Commons Chamber
Meeting started on Tuesday 23 February at 2.30pm
ended at 10.48pm

“Liberal Democrat MP Annette Brooke led an adjournment debate on ME on 23 February 2010.

ME (Myalgic Encephalopathy) is a debilitating condition that affects an estimated 17 million people worldwide.

In October 2009, US scientists claimed to have made a potential breakthrough in understanding what causes the condition.

Their research in the journal, Science, suggests that a single retrovirus known as XMRV plays a key role in causing ME.”

Watch live video stream again at:

Pick up at 07:44:59

Hansard transcript  ( also available on They Work For You )  

23 Feb 2010 : Column 272

Myalgic Encephalopathy

Motion made, and Question proposed, That this House do now adjourn. -(Mrs. Hodgson.)

10.18 pm
Annette Brooke (Mid-Dorset and North Poole) (LD): I am pleased to have been able to secure this Adjournment debate on behalf of my constituents. Over my years as an MP I have had contact with a number of people with myalgic encephalopathy-usually known as ME-from all age groups, who have raised a range of issues with me. A common point is their frustration in being unable to carry on with their lives as they would wish, and not being able to access a range of services that might be needed, including education, employment, benefits and health services. My most recent encounter has been with a young person who, at a critical point in her promising career, has been diagnosed with chronic fatigue syndrome-CFS-is now unable to work, and came to my surgery asking for action. I am going to reflect many of her concerns during this short debate.

I am also in touch with the Dorset ME support group, and would like first to reflect on some of its concerns. It is estimated that there are probably more than 2,000 people in Dorset with ME, and the Dorset ME support group has more than 500 members. A representative made the following points to me. In spite of the chief medical officer’s report five years ago, there are still too many GPs and other health professionals who do not recognise ME or sympathise with those with the condition. However, when they are good, they seem to be very good.

The representative said that the group’s members with a diagnosis still want a diagnostic test to prove it, because of the doubt and suspicion that they sense, or are faced with, in others. We hope that researchers will address the need for co-operation rather than competition, so that progress can be co-ordinated and funds allocated in the most effective way. The Government have not been seen to be supporting CFS/ME research as urgently as they could. The group’s representative says:

“I don’t know if anyone has produced figures for the cost to the nation’s coffers of the hours of work lost, the benefits paid out, and the cost of treatment for those fortunate enough to be able to access it. It does not appear to be being taken seriously enough…Having to cope with dealing with the benefits system is beyond many of our members which is why we have a full time benefits officer to assist them.”

My constituent points out that apart from the fatigue itself, problems with cognitive function make it hard, if not impossible, for many people to complete the complex forms required by the Department for Work and Pensions. Having to attend a medical, sometimes a considerable distance away within Dorset-for example, people from Gillingham have to travel to Salisbury-adds stress to an already stressed situation. Patients who are assessed by the DWP as fit for work, either before they start treatment or while receiving it, usually have their recovery period set back by nine months to a year, again at a cost to the NHS, never mind the cost to the individual.

The Dorset ME support group says that in its experience, the high number of people with CFS/ME being found fit for work under the employment and support allowance regulations leads to a high number of appeals, presumably at considerable cost to the taxpayer. It states:

“Within the Dorset ME Support Group, all our ESA Appeals so far have been successful suggesting that the assessment system

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is not fit for purpose where people with ME is concerned. Disability Analysts are trained to look at the disability and not the nature of the condition…Joined up government seems to be lacking.”

I therefore ask the Minister to liaise with her counterparts in the DWP.

In Dorset we have a CFS/ME service for children and young people, based in Dorset county hospital and Poole hospital, albeit with very limited funding. The Dorset ME support group secured funding from BBC Children in Need for a part-time child support worker to enhance that service by providing liaison between families, schools, out-of-school education providers and the clinic, and by providing continuing support to the child and family at home. That frees up health professionals’ time so that they can concentrate on treatment programmes for the continuing flow of young patients. It has been pointed out to me that with the limit on funding, access to a doctor is limited. I seek the Minister’s advice on that, because clearly the Children in Need funding will run out with important work still to be done. The Dorset ME support group says:

“We are aware that some patients feel neglected by the NHS once they have completed their course of treatment. If all patients ‘stayed on’, the service would grind to a halt.”

One of my constituents comments that

“we are lucky that we have a specialist unit for ME at Wareham Hospital but more funding is required for follow up sessions”.

I now turn to the core purpose of my debate, which is to highlight the views of a young person who has undertaken a considerable amount of personal research and has strong views on the way forward. She is concerned about some of the issues that I have already highlighted, and particularly about the use of the term “treatment”. She has drawn my attention to the differences between myalgic encephalopathy and myalgic encephalomyelitis-I am struggling to pronounce them. The former was the title given to my debate, although I originally specified just “ME” as the title. My constituent has drawn my attention to a source that defines myalgic encephalomyelitis as inflammation of the brain and spinal cord, and myalgic encephalopathy as any non-inflammatory disorder affecting the brain. The same source goes on to state that some doctors and certain charities claim that the problem with ME is that there is no brain inflammation, which is represented by the “-itis” in encephalomyelitis. Certain organisations have therefore decided to keep “ME” in their name, but with the “E” standing for encephalopathy, which, as that definition shows, means disease or dysfunction of the brain without inflammation.

Many distinguished scientists have questioned the abandonment of the “-itis” part of the word. Dr Bruce Carruthers, author of Canada’s guidelines on treating ME, wrote that

“-itis is well established in the name ME, and there is no good reason for changing it, since -opathy would not reduce our state of ignorance re ME but serve to further confuse everyone-perhaps that is one of the motives behind the suggestion.”

Professor Malcolm Hooper from Sunderland has explained the implications of changing the name of the illness, stating:

“Despite the claims of some psychiatrists, it is not true that there is no evidence of inflammation of the brain and spinal chord in ME; there is, but these psychiatrists ignore or deny that evidence”.

For the avoidance of doubt, I shall use the abbreviation ME to stand for myalgic encephalomyelitis.

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In general terms, it is suggested that up to 250,000 people are affected by the condition, and symptoms can vary from poor memory and concentration to debilitating fatigue and painful joints and muscles. It can affect all types of people and its causes are not fully understood. It is not a small problem. It is estimated that five times as many people in the UK are categorised as having CFS/ME as have HIV. More than 70,000 are so ill that they are bedbound and require round-the-clock care. The condition affects not only patients, but their families and friends. Schooling, higher education, employment, and subsequently income, social life and family life may all be affected.

Yet how much do we really know about the condition and effective treatment? What is currently on offer? The Gibson report way back in 2006 made many important points, including the fact that the World Health Organisation holds an internationally recognised classification of ME as a neurological illness. The report made many more points about the need for research and a serious examination of the international evidence. It said that the necessary research must be funded immediately, so why is that not happening?

My young constituent has been diagnosed with CFS, a complex disorder characterised by extreme fatigue that lasts for six months or longer. ME is a neurological condition as defined by the WHO. It can present with fatigue as a symptom, but that is not always the case. The causes of ME and CFS are currently unknown, although many scientific studies have shown links to viruses, immune deficiencies and exposure to chemicals.

My constituent has written to tell me that unfortunately, CFS and ME have become lumped together in the UK, allowing the medical profession to dismiss the neurological problems that ME sufferers face, and to deny access to tests that could allow more specific diagnoses. The problem with seeking medical advice on the subject of ME stems from the fact that doctors are under-educated in this area. Many still consider it a psychological condition-which, particularly in the light of recent research in other countries, is simply wrong.

My constituent points out that there are currently no treatments for patients categorised as having CFS/ME. Cognitive behavioural therapy and graded exercise therapy are offered as a means of managing the fatigue aspect of the illness. The Medical Research Council has to date funded research only into the psychosocial aspects of the illness and the management of fatigue: £3 million was spent on a recent pacing, activity and cognitive behaviour therapy randomised evaluation trial, which examined CBT, GET-graded exercise therapy-and other fatigue management techniques, and £8 million was granted to allow specialist CFS/ME centres whose treatments are based on such techniques to be set up around the country.

Those centres and general practitioners, guided by National Institute for Health and Clinical Excellence guidelines for CFS/ME, regard CBT as a treatment. However, my constituent believes that promoting CBT as a treatment is incorrect. If effectively delivered, it might help some people to manage their fatigue, but it cannot remove the cause of their illness. CBT is often used in assisting patients’ recovery from cancer and other serious illnesses, and is based on the principle that impairment in daily functioning is due to one’s distorted thinking or cognition, but in the case of ME, impairment

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in functioning is not due to those things. If medical tests are done on people with true ME, they would show many abnormalities and physical reasons for impairment in functioning. However, patients diagnosed with CFS/ME rarely get access to any kind of medical testing.

The Medical Research Council funding for biomedical research into ME is next to nothing in comparison with the funding provided for the perceived psychosocial aspects of the illness. The extent of biomedical research into ME has been questioned before. The Government have stated that the reason why the MRC has not funded any biomedical research is because there have not been any good or innovative applications. This is just not true: one scientist, who has applied for and been denied funding, says:

“We have applied several times to the MRC”.

This scientist has done some privately funded research into gene expression in CFS/ME.

I do not doubt that there are others who have tried and failed to gain MRC funding, but it is very difficult to find out precisely which applications have been refused. There have been freedom of information requests from patients to find out why the biomedical proposals were rejected, but they have not been successful. It is possible to see how many applications have been made and how many were accepted and refused, but it is not clear which of those were biomedical proposals. Why can the MRC not be more open about this?

My constituent tells me that since 2008 the MRC has set up a panel of experts to look into ME and the research on it. One problem with the panel is the wide range of disciplines covered by its members. It is difficult to see how that panel could work for the benefit of people with ME and their families if the members maintain such opposing views of the illness. As long as ME exists as a diagnosis, the range of conditions that probably come under this title cannot be addressed. It would seem to make more sense to distinguish sub-groups of ME and to acknowledge that research on those sub-groups is the logical way forward. Two years on, the expert panel has yet to take any visible action on the issue of biomedical research. That must raise the question of how urgent it feels the issue is.

For a balanced view of ME, the Government and the MRC should embark on a consultation of all interested parties. That would obviously include the patients themselves. The MRC and the Government currently get their information about patients from charities set up to help those with ME. However, my constituent believes that the two charities that the Government currently consult for advice on ME give particular emphasis to the need for care for, and support of, patients. She is concerned that that can only increase the misunderstandings about the illness, and in itself could suggest that all that patients need is support and sympathy. She feels that that need should go without saying, but that it should be acknowledged that until more is known about the biomedical aspects of ME, care for patients with the condition can not possibly be adequate or effective. In the short term, care is clearly very important, but for the benefit of future as well as current sufferers, new research must be done.

The main charities talk about biomedical research, but are they taking enough action to instigate such work? There are, however, other charities that represent

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the interest in research, and Invest in ME is one such charity. It holds an international conference every year-this year it will be on 24 May-whose aim is to highlight the need for a national strategy for biomedical research that will lead to treatment and a cure for this devastating illness. ME Research UK and the 25% ME Group-which represents the seriously afflicted-are two charities with similar mission statements.

My own view is that until we know more about the condition, management of the symptoms is an important process. However, it is clear to me that the way forward is to fund biomedical research to find causes and treatments. I believe that that would unite everybody concerned with this debilitating condition. Until that research is done, no one can possibly claim to understand the illness fully, so treatment cannot progress. On behalf of my constituents generally, I call for a complete review of research into ME.

To help address the unique challenges posed by a complex and poorly defined condition such as ME, I would like to call for the establishment of an independent scientific committee to oversee all aspects of ME research. I would like the Government and the Medical Research Council to work with ME sufferers and biomedical researchers to achieve a proper understanding of the condition, challenge unjust perceptions and consider the issue of research funding.

The current NICE guidelines, by recommending CBT and GET, do not follow World Health Organisation guidelines, which categorise ME as a neurological condition. In failing to recognise the biomedical problems of ME sufferers, the NICE guidelines also fail to recognise the needs of ME suffers. My young constituent is right to challenge the current establishment views, and I ask the Minister to take these issues forward.

10.35 pm

The Minister of State, Department of Health (Gillian Merron): I congratulate the hon. Member for Mid-Dorset and North Poole (Annette Brooke) on securing this important debate. As we all know, she has pursued a close interest in the subject on behalf of her constituents with the condition of myalgic encephalopathy. ME is a potentially severe and disabling illness, and most commonly affects people aged 20 to 40. I am not in the least surprised, therefore, that she reflects so well the comments of her young constituents.

The truth is that the causes of ME are unknown. However, I want first to put on the record that we accept the World Health Organisation’s classification of ME as a neurological condition of unknown cause. I realise from the hon. Lady’s comments that that is an important acknowledgment. I was interested to hear of the work of the Dorset ME society, and I congratulate it on its efforts. I was also interested to hear of the provision made by the local NHS trust and of the views and experiences of her constituents. All that helped to paint a clear picture.

I recognise how distressing ME can be to people living with the condition, their families and those who care for them. I know that much of the distress is caused by the difficulties of recognition, acknowledgment and acceptance of the condition and its impact. As with other chronic conditions, ME can significantly affect physical and emotional well-being, and can disrupt

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work and social and family life. I acknowledge the points that have been raised so clearly by the hon. Lady. The case was clearly made that enhanced research, better services and a better understanding of the condition would all make a huge difference to the quality of life of people with ME.

We know that care for people with ME has varied widely, and in the worst cases has sadly left some people with the condition feeling that their illness is not recognised by the health system. In particular, there is a need for them to have access to health professionals with an understanding of their needs, timely access to appropriate services and treatments, and more and better information, communicated in a more understanding and thorough way. It is clear to me that people with ME need and deserve better services, and over the past few years we have sought to address those concerns. The hon. Lady made some important points about the provision and availability of benefits, and I will draw those comments to the attention of the Secretary of State for Work and Pensions.

On the NICE guidance, the hon. Lady will be aware that the Department of Health commissioned NICE to produce a clinical guide for the diagnosis, management and treatment of ME. The publication of those guidelines in 2008 was an important opportunity to change the existing situation for the better, helping both health care professionals and patients by providing advice based on evidence on how to best manage the condition.

Having said that, I am very aware that there are concerns about some of the approaches used for managing ME outlined in the guidelines, and we have to work with patient groups, researchers and other stakeholders to establish what treatment, or combination of treatments, will best help patients to get better.

The hon. Lady referred to cognitive behavioural therapy and the concerns about it not being an effective treatment. Sadly, there is no cure as yet for ME, as we know. Treatment seeks to help people with the condition and their symptoms. I am aware that there are concerns about CBT, but I am also aware that it is known to be helpful to some patients, when applied appropriately and with mutually agreed goals and principles. As with many of the management strategies currently available, it is important that we test out the evidence base. That is why the clinical trial PACE-pacing, graded activity and cognitive behaviour therapy: a randomised evaluation-will be so important in testing the effectiveness of treatments, so that patients can make informed decisions about their care.

It is also important to emphasise that clinical guidelines are not mandatory. The purpose of such guidelines is to support clinical decision making. They are also intended to assist primary care trusts in service development and redesign, but ultimately health professionals are free to use their clinical judgement and, in consultation with their patients, to decide on the most appropriate treatment options, taking into account individual clinical factors. The guidelines recognise there is no one form of treatment to suit every patient, and emphasise that it is necessary to have a collaborative relationship between clinician and patient if success is to be realised. Although all patients want to get better, none should be coerced into accepting any particular form of treatment. Management should always be underpinned by an ethos of joint decision making and informed choice.

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The emphasis on empowering patients to become genuine and informed partners in their care is also a key theme of the national service framework for long-term conditions, which is a means to an end, the end being the improvement of services for people with neurological conditions across the country. People with those conditions will get faster diagnosis, more rapid treatment and a comprehensive package of care. We are now working with a range of key stakeholders-for example, the patient groups that represent those with neurological conditions-to identify and develop practical tools and advice that can help local services and organisations to deliver the national service framework. That means that services for people with conditions such as ME will progressively improve over the 10 years of its implementation, through to 2015.

As we know, it is important that the NHS sets its own priorities locally, in response to local need and local circumstances. We acknowledge that there have been many requests for national service frameworks or strategies for particular clinical areas, including ME, so we have established a national quality board to advise on future clinical priorities and the steps that might be taken to promote clinical quality in the identified priority areas. Improvement in the commissioning of local services is absolutely at the heart of our health service’s capacity to achieve better results for patients, as well as better value for money.

As part of that, local involvement networks are critical in improving the commissioning of the right services. They play a key role in encouraging and enabling people to influence the commissioning and the provision of health and social care, and bring real accountability to the system. Part of how we improve services is by giving a stronger collective voice to patients and local groups associated with specific conditions such as ME. They can influence the decision makers to ensure that services are more responsive to their needs. Going by the hon. Lady’s comments, I am sure that she is working closely with the relevant groups and people to ensure that voices are heard and responded to. The correspondence and representations that the Department of Health receives from patients and patient groups show clearly the determination to influence local decisions. I would encourage people to continue with that involvement.

The hon. Lady rightly referred to young people and children, who have particular needs when they have ME. That is why services for children have been given such prominence by this Government. Nearly all children who are severely affected by ME, as well as many who are moderately affected, will require the provision of home tuition and/or distance learning. A critical element of care will therefore be the assessment and provision of educational needs. Children should have access to as much education as their condition allows, and local authorities have an absolute responsibility to ensure that they do so. An educational plan for a child or young person with ME is not an optional extra but an integral part of their treatment. Educational needs should be identified in the diagnostic process, and adequate provision of continuing education demands close liaison between GPs, community paediatric services, education services and, of course, the young person and their family.

As the hon. Lady said, research is the key to developing new treatments, transforming care and finding a cure for this debilitating condition. Research into ME continues

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to be a strategic priority area for the Medical Research Council. The MRC is one of the main public funders of medical research, receiving its funding through grant-in-aid from the Department for Business, Innovation and Skills. The MRC remains committed to supporting scientific research into all aspects of ME, including evaluations of treatments and studies of the biological basis of the condition.

In 2008-09, the MRC spent £728,000 supporting four separate projects in this particular area. Nevertheless, we recognise there is scope for an expanded research programme for ME. The MRC has set up an expert group, chaired by Professor Stephen Holgate, to consider how best to encourage new research into ME, and how to bring researchers from associated areas into the field. The expert group arranged a small research workshop on ME at the end of last year, and the results will be published on the MRC website in due course. We also need to address the fact that not enough proposals for research are coming forward for consideration.

We are aware of a recent high-profile study that suggested that xenotropic murine leukaemia virus-related

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virus, or XMRV, is present in a large proportion of people with ME. These results have received widespread media attention. They are potentially exciting, but it is important to note that reports from two separate UK studies do not support the finding of a link between XMRV and ME. It is clear that further research will be required to replicate the original findings, and to show a causative link between XMRV and ME. The MRC’s National Institute for Medical Research has a research programme on infection and the replication of retroviruses, including XMRV.

I thank the hon. Lady for bringing this important subject to the attention of the House. I commend the efforts made by her and others to raise awareness of it, which I believe will contribute to a change for the better. I hope that she will agree that the Government recognise the importance of the issues that she has raised, while understanding the immense challenge of ME and taking steps to address it.

Question put and agreed to.

10.48 pm
House adjourned.

© Lord Hansard

12 Jun 2002 : Column 973

Myalgic Encephalopathy

Motion made, and Question proposed, That this House do now adjourn.—[Mr. Jim Murphy.]

10.28 pm

Mr. John Bercow (Buckingham): It is my pleasure and privilege to speak tonight on the subject of myalgic encephalopathy. I do so with enthusiasm and commitment, the more so because I know that the debate will be answered by the new Under-Secretary of State for Health, the hon. Member for Tottenham (Mr. Lammy). He has had a meteoric but thoroughly deserved rise to office. I wish him well in fulfilling his responsibilities, and in particular I look forward to what he has to say in response to my speech.

In the House since 1997, interest in ME, or chronic fatigue syndrome, has been manifested in no fewer than 116 written and oral parliamentary questions; a number of early-day motions—three, if I remember correctly, of which the most popular was the one tabled by the hon. Member for Brighton, Kemptown (Dr. Turner) in November 1997, which attracted no fewer than 164 signatures; and several Adjournment debates. Of the latter, two in particular stick in my mind. The first was initiated by the hon. Member for Great Yarmouth (Mr. Wright), whom I am pleased to see in his place tonight. The chairman of the all-party ME group, he has devoted himself to the issue with remarkable results, and his conscientiousness has earned him the justified respect of hon. Members on both sides of the House. The other debate was introduced by the right hon. Member for Coatbridge and Chryston (Mr. Clarke), who is not able to be with us tonight; he spoke on 6 February this year, to telling effect.

My motivation is straightforward: the ME Association, which is one of at least six such organisations and does pioneering and appreciated work in the field, recently moved its headquarters from Essex to my Buckingham constituency—a thoroughly judicious choice of location. Its offices are on the Buckingham industrial park. I said that I wanted to support the association in its work, and I meant it. I pay tribute to the efforts of its chairman, Ian Franklin, its new chief executive, Val Hockey, its public relations and communications manager, Tony Britton, and the excellent medical adviser to the association, Dr. Charles Shepherd.

There has been a long-standing argument about the cause of ME or chronic fatigue syndrome, but about its appalling symptoms and consequences there can be no doubt. Due not least to the work of the hon. Member for Great Yarmouth, it is now, I am pleased and relieved to be able to say, a clinically diagnosed condition. It is severe and potentially disabling, resulting in muscle and joint pain, sleep disorder, sore throat and enlarged glands, and loss of balance, concentration and memory; it can cause intolerance of food, alcohol and even light. The House and the wider public must understand that ME sufferers experience sheer exhaustion and excruciating pain. Those are often the daily endurance and harrowing ordeals of sufferers, who can be afflicted by the illness at any time of their lives. A quarter of ME sufferers suffer depression as a result of their affliction.

Mr. Laurence Robertson (Tewkesbury): My wife suffers from ME. In addition to the crippling illness and

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symptoms that my hon. Friend has graphically described, one of the problems that my wife faces is that it is not understood that ME is a disease that often affects highly capable and very active people. I am sure she would want me to emphasise that to the House tonight.

Mr. Bercow: My hon. Friend is absolutely right—ME can strike someone at any time of their life and its effects can be variable and unpredictable. People can be well one day, and the next day be incapable of performing the most personal and simple task. I am grateful to my hon. Friend for making that point.

It is estimated that there are about 4,000 cases of ME per million of the population. The Effective Health Care bulletin recently speculated, with some authority, that ME sufferers comprise between 0.4 and 2.6 per cent. of the UK population. Millions of days are lost to ME in the workplace each year. The monetary impact is estimated to be about £4 billion. A 1997 study relating to schoolchildren found that ME was the single most common cause of absence from school.

However, there have been good developments. The establishment of the working group on chronic fatigue syndrome or ME was one such positive development. Set up by the Department of Health in late 1998 and chaired by Professor Allen Hutchinson, director of public health at the school of health and related research at Sheffield university, the working group was given important duties and has discharged them to admirable effect. The working group’s terms of reference obliged it

“to review management and practice in the field of . . . ME with the aim of providing best practice guidance for professionals, patients and carers to improve the quality of care and treatment for people with . . . ME.”

The group produced its findings on 11 January this year in relation to the diagnosis of the disease, its management and its treatment. There were several conclusions, with which the Minister will be broadly familiar. It was concluded that health care professionals should recognise the chronic character of the disease and co-operate with affected parties. Early diagnosis, instead of a third of people having to wait 18 months or more to be diagnosed, is viewed as a priority. There is a crucial imperative for clinical evaluation and follow-up, preferably by multidisciplinary teams. The quality of support from GPs in co-ordinating strategies and then, where necessary, making appropriate referrals to specialists must be part of the mix.

The focus on domiciliary services should not be ignored either. There is a role for therapeutic strategies. Some of them—cognitive behaviour therapy and graded exercise—have come to be extremely controversial. That is why many experts think that there should be a new emphasis on pacing, which will require a commitment from Government and other agencies. There is a role for patients in the management and treatment of their condition. There is an overriding need, on which everybody, from whatever side of the argument, agrees, for more research, not least into the physical causes of the affliction. In relation to children, it is thought that care is best co-ordinated by an appropriate specialist—usually a paediatrician.

I think it is a positive development that that work has been done and that we now have the endorsement of the chief medical officer, Sir Liam Donaldson, for the

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proposition that this is a recognised disease. The days in which it was pejoratively and offensively dismissed as yuppie flu, and as something whose resolution required people simply to get their act together, are rapidly being consigned to the dustbin of history.
I hope, however, that the Minister will understand that I want to put a number of particular questions to him. I do so making it absolutely clear that this matter is not a party political football as far as I am concerned. The Government have done considerable good work on this subject, so I am not cavilling at them, but performing the proper role of a constituency Member of Parliament as well as an Opposition Member in seeking to encourage still greater efforts from the Administration.

Who is now on the scientific advisory panel established by the Medical Research Council? The chief medical officer and the Government want the MRC to have such an independent panel and to produce a strategy. I think it was originally expected that that strategy would be produced by the end of February. Later, in debates both in the other place and here, it was suggested that we would hear further from the MRC in spring this year. We are now, even by the most elastic definition, into the summer, and a good deal that we had expected has not yet been forthcoming.

What patient involvement will there be in the work of the MRC? When will its biomedical and health services research strategy be finalised, announced and started? Does the Minister agree with me—and, I suspect, other hon. Members in all parts of the House—that the matter is pressing because too little is known about the aetiology and pathogenesis of ME? What use are the Government making of the ME Association’s booklet “ME/CFS/PVFS: An Exploration of the Key Clinical Issues”, which is authoritative and is designed to be useful to them in communicating to all the agencies, including general practitioners, good and effective practice?

What assessment has the Minister made of the levels of primary, secondary and tertiary care, and what plans does he have, on the strength of his few days in his important post, for their improvement? In the light of the fact that another Under-Secretary of State for Health, the hon. Member for Salford (Ms Blears), declared at column 1008W on 12 March this year that there was merit in the development of clinical learning networks at local level, can he advise the House whether there has been any progress on that subject? Is it his judgment that such work should be undertaken before, after or concurrently with the formulation of the MRC strategy?

Has the incapacity benefit handbook for medical service doctors been changed? The Minister will know—if he does not, that is excusable and he will soon be informed about the matter—that there is great anxiety that, in the past, not recognising the disease meant unfairness for sufferers who tried to get the benefits to which most of us now believe they are entitled. Has the handbook been revised? Has the changed decision, the new attitude and the reformed culture been communicated to the people who determine whether sufferers get that to which they are entitled? Is the Minister satisfied that people are getting what they are due?

© Lord Hansard

Times: ME coverage 30 January 10

Media coverage 30 January 10


Update @ 31 January

News of the World  |  Carole Malone  |  31 January 2010

Mother’s courage betrayed by law

BBC News: Poll ‘support for mercy killings’:

There will be a ‘Panorama’ special on the Kay Gilderdale case tomorrow, Monday, 1 February.


I Helped My Daughter Die


BBC One  |  Monday, 1 Feb 2010  20:30

Next on:  |  BBC News Channel  |  Thursday 4 Feb 2010  04:30


What drives a mother to help her child die? For almost a year, Panorama cameras have been following Kay Gilderdale – the woman at the centre of the recent Assisted Suicide trial – as she faced a possible life sentence over her part in the death of her daughter Lynn.

She talks exclusively to Jeremy Vine about the night she helped her bedridden daughter kill herself and explores whether the law should be changed with those on both sides of the debate, including Debbie Purdey and Baroness Campbell.

Update @ 31 January

Daily Mail  |  Anne Atkins  |  31 January 2010

ANNE ATKINS: I know the curse of ME well but I’m sorry, it was wrong to let Lynn die

Times  |  Dr Martyn Lobley: Commentary  |  30 January 2010

‘ME is a diagnosis only reached by excluding other possibilities’

Dr Martyn Lobley is a GP in southeast London


Postings on ME agenda site for media coverage of the death of Lynn Gilderdale and the legal case are identified by the image above and archived in Categories under Gilderdale case. ME agenda is unable to respond to enquiries in connection with the case from members of the public or the media.

TimesSteve Bird  |  3o January 2010

They told dying daughter she was lying, says ME mother Criona Wilson

As Criona Wilson knelt beside her dying daughter’s bedside, she promised her that her death would not be in vain. Before the frail body of 32-year-old Sophia finally succumbed to the medical complications and ravages of ME, she replied in a whisper: “Then it’s all worth it.”

In the years that followed, Mrs Wilson, 66, a former midwife, dedicated her life to proving that her daughter’s condition was not a figment of imagination, nor one that merited her youngest child’s incarceration in a mental hospital.

Her battle saw her take on the medical profession and accepted thinking about the diagnosis and treatment of ME, also known as chronic fatigue syndrome. Eventually, in 2006, a coroner ruled that Sophia’s death was the result of myalgic encephalomyelitis — the first such ruling at an English inquest.

The fierce debate over ME has been highlighted once again by the case of Kay Gilderdale, who admitted assisting her daughter, Lynn, to kill herself after suffering from ME for 17 years. When she walked free from Lewes Crown Court on Monday, having been cleared of murder, Mrs Wilson was among those cheering her from the public gallery.

Related Links
No blood test to diagnose if a patient has ME
DPP defends murder charge against ME mother

“I had to be there,” said Mrs Wilson yesterday. “It was such an important case. And the verdict was a vote for common sense in a trial that highlighted what people suffering ME and their carers have to face.”

Her daughter, Sophia Mirza, was a talented and popular arts graduate living with her mother in Brighton in 1999 when she contracted ME at the age of 25. She became confined to her bedroom and, just as Miss Gilderdale had, needed round-the-clock care.

In 2003 she was visited by a psychiatrist, even though Miss Mirza complained only of physical discomfort. The psychiatrist told her that she was making up her symptoms and if she continued to pretend to be ill he would section her under the Mental Health Act. Mrs Wilson said: “I knew my daughter. There was no way she was mentally ill or pretending.”

When the dread knock on her door finally came in 2003, there was little she could do. A policeman forced the door open and the psychiatrist and a social worker locked themselves into Miss Mirza’s room to prepare her for her trip to a psychiatric ward.

Her condition took a dramatic turn for the worse. After 13 days she was released and taken back to the care of her mother. “That spell in a mental hospital set her back terribly. We lost all faith in medical professionals. We were alone,” said Mrs Wilson.

In 2005 Miss Mirza could barely muster the energy to speak, eat or drink. She and her mother had already agreed that no doctors should be called in case she would be sectioned again. On November 25, 2005, Miss Mirza died in her bed at home.

Wiping tears from her eyes, Mrs Wilson said: “We did everything we could.” Determined to get to the bottom of why her daughter’s treatment had been so bad, she got hold of her medical records. After being contacted by the 25 Per Cent ME Group, which campaigns for those with the most acute form of ME, she agreed to her daughter’s body being examined.

At the inquest the next year a neuropathologist told the court that Miss Mirza’s spinal cord was inflamed and three quarters of her sensory cells had abnormalities. It was, the court heard, a clear physical manifestation of ME. The coroner ruled that she had died from “acute renal failures as a result of chronic fatigue syndrome”.

A year later, the National Institute of Clinical Excellence (NICE) issued its first guidelines on the diagnosis and treatment of the illness, describing it as “relatively common”, affecting up to 193,000 people in Britain. At the heart of that guidance is the need to take into account the opinions of the patients.Mrs Wilson is campaigning to get the Government to fund research into ME. “It’s not over yet.”

Documented involvement of viruses in ME/CFS: M Williams 30 December 09

Documented involvement of viruses in ME/CFS by Margaret Williams

One of a series – see notice below


Full text here in MS Word format: Documented involvement of viruses in ME 30.12.09

and at:

Documented involvement of viruses in ME/CFS

by Margaret Williams

30 December 2009

For decades it has been known and shown that viruses play a role in ME/CFS. Now there is evidence of a direct association with a gamma retrovirus – XMRV – that disables the immune system in ME/CFS, thus allowing numerous latent viruses to re-activate, which could result in the protean symptomatology…


Magical Medicine: How to make a disease disappear – Hooper and Williams – Spring 2010

Prior to the publication of the MRC PACE Trial results in the Spring of 2010, Professor Malcolm Hooper and Margaret Williams will be releasing a series of linked documents addressing central flaws in the PACE Trial.

These documents form part of a more substantial document that has the provisional title

Magical Medicine: How to make a disease disappear

This document has a dedicated web page at:

This web page will contain an easily accessible Contents page so that people can surf and then select whatever section (or part of a section) they may wish to look at.

Although he and Margaret Williams have previously addressed some of the issues contained in the substantial document, Professor Hooper thinks it essential for there to be a single, comprehensive narrative of events and information leading up to and involving the PACE Trial.

Magical Medicine: How to make a disease disappear

Professor Malcolm Hooper and Margaret Williams

Spring 2010

Documents already published that form part of the larger PACE Response document:-

1. Interstitial cystitis and CFS (26th August 2009)

2. More evidence of inflammation in ME/CFS (14th November 2009)

3. The role of viruses in ME/CFS // XMRV (21st November 2009)

4. The MRC’s secret files on ME/CFS (10th December 2009)

5. Statements of concern about CBT/GET for the Judicial Review (12th December 2009)

6. Can the MRC PACE Trial be justified? (17th December 2009)

and now this latest one:

7. Documented involvement of viruses in ME/CFS (30th December 2009)

Can the MRC PACE Trial be justified: Margaret Williams 17.12.09

A new article from Margaret Williams:


Open as Word document:  Can the MRC PACE Trial be justified Williams 17.12.09

Also available at:


Can the MRC PACE Trial be justified

by Margaret Williams

17 December 2009

In March 2003 the House of Commons Select Committee on Science and Technology produced its Report “The Work of The Medical Research Council” (HC 132) in which MPs issued a damning judgment on the MRC, lambasting it for wasting funds and for introducing misguided strategies for its research. The Select Committee had received seven representations about the MRC’s refusal to heed the biomedical evidence about ME/CFS. MPs found evidence of poor planning and of focusing on “politically-driven” projects that have diverted money away from top-quality proposals. The unprecedented attack was the result of a detailed probe into the workings of the MRC. In particular, MPs questioned why the MRC was content to support policies and projects that are likely to perpetuate such criticism.

Given that biomedical research, including gene research (which has shown that in people with ME/CFS, there are more gene abnormalities present than are found in cancer sufferers) has demonstrated that the psychiatrists who hold such sway at the MRC are comprehensively wrong about ME/CFS, nowhere could such criticism be more apposite than in relation to the PACE Trial.

Patients with ME/CFS and their families are in despair, because no-one in authority in the UK seems to be listening: as Mike O’Brien MP, Minister of State for Health, made plain at the APPGME meeting on 2nd December 2009, Ministers can no longer tell agencies of State what to do. This apparently means that, no matter what conclusions are arrived at or what recommendations are made or what evidence is put before a Minister, the Minister concerned can deny having any power to implement change. The Minister himself is reported to have said that he could not require the MRC to undertake research in any specific field, nor could he require Primary Care Trusts to follow Ministerial command. As far as ME/CFS is concerned, it seems that there is nothing the Government can – or will – do about the current situation.

It is apparent that the Government feels no duty of care towards those whose life has been devastated by ME/CFS, a situation that is borne out by Professor Stephen Holgate’s confirmation at the Royal Society of Medicine Meeting on 11th July 2009 (Medicine and me; hearing the patients’ voice) that the Government will not permit integrated research into ME/CFS.

This can only mean that the influence of the Wessely School over the lives of people with ME/CFS will continue and that their tactics of denial will remain unchallenged, no matter what the calibre of the biomedical evidence showing them to be wrong. As people recently drily commented on an ME group, those tactics include:

“load up your committees with your biased friends and pretend they are offering a fresh look; give really negative scorings to biomedical applications; try to stop biomedical papers getting published in the better known journals; make sure to keep on publishing psychiatric rubbish to bias the general medical population and scientific community against any other explanation, and give the impression that CBT/GET is all that is needed i.e. no need to waste all that money on silly biomedical projects” ( 6th December 2009) and

“ensure you use the sketchiest diagnostic criteria you can get away with; wherever possible, avoid seeing / talking to patients at all; never discuss / involve the severely affected; avoid using objective outcome measures; rotate the name of lead authors on papers and ensure you include plenty of reference papers from your psychosocial mates….” ( 7th December 2009).

As others have noted, the strategy is (1) to ignore ME; (2) to ensure that CFS is seen as a problem of false perception, then (3) to reclassify “CFS/ME” as a somatoform disorder (Co-Cure NOT:ACT: 12th January 2008), which is far removed from the reality of ME/CFS, the CNS dysfunctions of which are described by Dr Byron Hyde as being caused by “widespread, measurable, diffuse micro-vasculitis affecting normal cell operation and maintenance….The evidence would suggest that ME is caused primarily by a diverse group of viral infections that have neurotropic characteristics and that appear to exert their influence primarily on the CNS arterial bed” (ibid).

Patients and their families, many clinicians and researchers are well aware of such strategies and tactics but – so powerfully has the Wessely School myth about ME/CFS been promulgated – have been unable to halt them.

As Dr Jacob Teitelbaum reported, the XMRV virus study clearly documents that (ME)CFS is validated within the mainstream medical community as a real, physical and devastating illness, “again proving that those who abuse patients by implying that the disease is all in their mind are being cruel and unscientific…Though the economics may cause a few insurance companies to continue to unethically deny the science, so they can avoid paying for the health care and disability costs they are responsible for, this research should speed up understanding of the illness. Meanwhile, for those with the illness, their families and their physicians, it is now clear that this is a real and devastating illness” (Co-Cure RES: 4th December 2009).

There can be no doubt that, for patients with ME/CFS as distinct from those suffering from chronic “fatigue”, neither CBT nor GET is effective, otherwise everyone would by now be cured. Continue reading “Can the MRC PACE Trial be justified: Margaret Williams 17.12.09”

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


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

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.

ME Association: Summary of meeting of APPG on ME 2 December 2009

Ed: Note that Dr Charles Shepherd has used this unofficial summary of the APPG on ME meeting to advance his personal opinion on what he considers to have been unacceptable behaviour by a member of the public.

It has not gone unnoticed or unremarked upon that at the previous meeting of the APPG, in October, the Chair of the Sussex and Kent ME and CFS Society, had addressed another member of the public in a manner which has been reported by several of those in attendance at that meeting as having been grossly inappropriate.

When Dr Shepherd had written up his summary of the October meeting, that section of the procedings was reported only as “…a very lively discussion on the current state of NHS services for people with ME/CFS.”

I do not consider that Dr Shepherd should be using summaries published in the name of the ME Association to further his personal views and opinions on matters that are the purview of the Chair, nor should he presume to speak on behalf of the “vast majority of people with ME/CFS who were present on Wednesday, or were being represented”.

As joint secretariat, Action for M.E. and the ME Association undertake the circulation of minutes and agendas for these meetings but they are not members of the APPG on ME and their status as organisations and that of their representatives in relation to the group is no different to that of any other organisation that sends a representative to attend these meetings.


ME Association: Summary of meeting of APPG on ME 2 December 2009

Friday, 04 December 2009 11:09

This is a fairly detailed summary of the meeting of the All Party Parliamentary Group Group (APPG) on ME held in Committee Room 11 at the House of Commons on Wednesday 2 December, 2009.

The meeting lasted from approximately 3.15pm till 4.45pm.

Please note that this is a personal summary and not the official APPG Minutes. These will appear later.



Dr Desmond Turner MP – Chair
Countess of Mar – Secretary
Andrew Stunell MP – Vice Chair

Koyes Ahmed – Office of Dr Turner MP

Rt Hon Mike O’Brien – Minister of State for Health Services at DoH
Accompanied by three DoH officials


Tristana Rodriguez (AfME)
Sir Peter Spencer (AfME)
Dr Charles Shepherd (MEA)

ME/CFS charities and organisations:

Jill Cooper – Warwickshire Network for ME
Paul Davis – RiME
Doris Jones – 25% Group
Bill and Janice Kent – ReMEmber
John Sayer – ME Support Norfolk
Janet Taylor – Independent Kirklees ME Support Group
Mary Jane Willows – AYME


Several people with ME/CFS, and carers, attending in a personal capacity
Dr William Weir – infectious disease specialist
Television production company that is making a documentary about ME/CFS

NB: This is not a complete list of everyone who attended because I did not have the opportunity to check on the attendance book at the end of the meeting. So apologies to anyone who has not been included. If anyone does want their name added please let me know.


The main purpose of this meeting was to discuss the APPG Report into NHS Service Provision for people with ME/CFS.

The Rt Hon Mike O’Brien, Minister of State for Health Services at the Department of Health, arrived shortly before the start. He was there for 45 minutes to listen to the key findings, give a short presentation, and then answer questions before leaving promptly (as ministers do!) at 4pm. The Minister had received a copy of the interim report prior to the meeting – so he was already aware of the contents.

Unfortunately, the meeting got off to an extremely regrettable start – all due to a very small section of the audience making repeated and sometimes very aggressive interruptions about various administrative matters. As a result of this gross discourtesy to the Minister, the time available for the ministerial response was being steadily eroded. Despite several polite requests from the Chairman, the interruptions continued. As a result, the Countess of Mar terminated her involvement with the meeting. The Chairman then stated that he would either terminate the meeting or arrange for those involved to be removed from the committee room by the House of Commons police if their interruptions continued. Shortly after, those involved calmed down and we managed to start dealing with the real business of the APPG report.

On a personal note I am very much in favour of public attendance/contribution at these meetings. However, it needs to be said that if people with ME/CFS want to alienate parliamentary opinion about this illness, and not even have an APPG to put forward their case to ministers etc, then behaving in an aggressive and unpleasant manner is a very good method for achieving this aim. We already have a situation whereby some MPs are unwilling or reluctant to attend APPG meetings – all because of the obsessive and often unpleasant interruptions about administrative matters. And it could well be that after the Election, when the APPG will have to be reformed, it will be very difficult to find enough parliamentarians who are willing to take on an active APPG role. We just cannot afford to risk losing the support of distinguished parliamentarians like the Countess of Mar. It also needs to be said that the vast majority of people with ME/CFS who were present on Wednesday, or were being represented, had come to hear about the report, listen to the Minister, and then ask difficult questions about NHS services – they did not want to take up valuable time listening to complaints about the minutes and APPG administration. This could (and should) have waited till after the Minister had left.


NB: A copy of the interim report, along with the APPG press release, can be accessed by clicking here.

Des Turner started by explaining that the APPG had originally intended to publish the final report at this meeting. However, it was felt that an interim report was more appropriate at this stage. This was mainly due to the practical difficulties faced by a group with very limited resources – both staff and financial – who were bringing together and summarising the large amount of evidence that had been received.

Des Turner apologised for the fact that people had not had adequate time to read the interim report. He explained that the APPG, which has had only limited administrative support, had been very pushed for time when it came to analysing the evidence and arriving at recommendations, with the final version only being printed at the end of last week.

Des Turner carefully went through the 11 key recommendations contained in the interim report and briefly explained why they had been made in relation to the evidence sent into the Inquiry..

Mike O’Brien then made a ten minute statement relating to the recommendations contained in the interim report. Key points to emerge from the ministerial statement include:

• The 2002 Chief Medical Officer’s report had been a major turning point for people with ME/CFS – but the system (ie the NHS and DoH) had not responded adequately and put into place the various clinical, administrative and funding pathways that had been recommended by the CMO report.

• The APPG report was another milestone.

• The recommendations set out in the APPG interim report were sound and blatantly obvious.

• There was a real problem with ME/CFS when it came to ensuring that care pathways meet individual needs – which obviously vary considerably in relation to symptoms, severity etc in ME/CFS.

• The system responds to simple straightforward needs – not to complex conditions like ME/CFS.

• There were big differences in opinion amongst patients and clinicians when it came to management of ME/CFS, especially in relation to CBT and GET. This made life difficult for service providers.

• The problem is at a local level because ministers no longer rule from Whitehall and tell primary care trusts (PCTs) how to spend their money.

• The CMO report should have triggered PCTs to take action but some have not responded.

• Some PCTs are providing a good service; some a mediocre service. Others are not responding to the needs of people with ME/CFS at all – partly as a result of uncertainty and/or scepticism about the illness by their medical advisers. This type of inaction was not acceptable.

• ME support groups need to work together and pursue the case for new or better services at a local level.

• The need for accurate information on numbers was acknowledged (Recommendation 1). The challenge was how best to obtain this complex epidemiological information.

• There was a case for creating a National Service Framework for ME/CFS (Recommendation 2)but more hard evidence about the illness was needed.

• Acknowledgement of the need for more biomedical research (Recommendation 9) – he will write to the Medical Research Council (MRC) and ask for more work to be done.

• Acknowledgement of the problems faced in relation to DWP benefits and recommendation 10 in the report. The DWP did not deal very well with ME/CFS.

Before leaving at just after 4pm the Minister took a handful of questions from the floor. Among the topics covered in this question and answer session:

• From Janet Taylor: How the local ME/CFS Group in Kirklees, Yorkshire had used the existing evidence to persuade their service provider that ME/CFS should be regarded as a neurological illness

• From Charles Shepherd – What could people do if a PCT refused to provide a service? CS pointed out that there would be a major scandal if a PCT decided that it would not provide a service for people with cancer and the DoH would not allow this to happen. The Minister again refused to agree that the DoH should be more proactive in putting pressure on PCTs that refuse to set up a service.

• From Janice Kent – The Lightning Process. Janice Kent referred to the situation in Sussex. The Minister was obviously well informed about the Lightning Process and the controversy that surrounds it. It appeared that he was sympathetic to research into the use of the Lightning Process.

• From Peter Spencer – the Medical Research Council Peter Spencer pointed out that lack of services are linked to lack of research. The Minister acknowledged this was a valid point and he would therefore write to the MRC to highlight the need for more biomedical research.

Overall, Mike O’Brien listened carefully to what was being said and gave the impression that he understood (and had sympathy with) the anger about research, services and benefits. However, many of his answers were political rather than entering the territory of real practical solutions. think most people were just not convinced by the way in which the blame for lack of services is constantly passed to the PCTs with the explanation that the DoH cannot tell them what to do or how to spend government health money.



The All Party Parliamentary Group (APPG) on ME has published an interim report on its Inquiry into NHS Services in England for people with ME/CFS.

The Inquiry has been taking placing during the course of this year.

The Inquiry was initiated as a result of widespread concerns about the way in which this illness is diagnosed and managed in both primary and secondary care.

The Inquiry took written and oral evidence from patients, carers, charities, clinicians and service providers.


We very much welcome the key recommendations contained in the interim report.

They reflect almost all of the key issues that people with ME/CFS feel very strongly about.

In particular, they are very concerned about the postcode lottery which means that some people have no NHS referral service at all whereas others are referred to services which place far too much emphasis on behavioural managements such as CBT and GET. These are approaches that some people with ME/CFS find ineffective or, in the case of GET, make their symptoms worse. We therefore hope that NICE will seriously address the recommendation in the report to thoroughly review their guideline advice about CBT and GET.

The MEA believes that the current lack of services for children, adolescents and the severely affected is a national scandal. As recommended in the interim report, this deficit must now be addressed by the PCTs – many of whose Chief Executives did not even bother to respond to the request for information from the APPG.

Finally, we agree that there needs to be sound research carried out into the underlying physical cause and epidemiology of ME/CFS. The epidemiological research could involve the research networks that have been set up within primary care. Epidemiology should also build on the primary care disease register that has been set up and developed as one of the strands of epidemiological research carried out through the ME Observatory. NB: The disease register now contains details on around 500 cases, including the severely affected cohort which has been transferred from the CHROME database.


• The Department of Health must undertake research to accurately assess the number of people with ME/CFS.

• Recommendations from the 2002 Chief Medical Officer’s report regarding service provision must be addressed.

• All PCTs should ensure that they provide a full range of diagnostic and physician-led management services for people with ME/CFS.

• PCTs must ensure that there are adequate services for children and adolescents.

• The needs of the severely affected should be given high priority.

• PCTs should have meaningful consultation with patients and local groups about services and service development.

• A National Service Framework for ME/CFS should be created.

• The Royal Colleges must ensure that medical students receive training in both diagnosis and management.

• Professional organisations responsible for other health professionals must also ensure proper training and continuing professional development .

• The Department of Work and Pensions should review its guidance in relation to benefit assessments.

• NICE should review its guideline on ME/CFS – especially the sections on CBT and GET.

• The APPG welcomes the Medical Research Council initiative which places emphasis on the need for biomedical research into the underlying cause of ME/CFS.



A copy of the current draft is available in the paperwork for the meeting. This can be found in the MEA website news section.

Further comments can still be submitted to the APPG. This matter will be considered again at the next APPG meeting in 2010.


Charles Shepherd presented a brief summary on current research activity relating to XMRV.

Notes from this presentation:

Everyone is by now familiar with the XMRV research findings from America.

This is a brief update on what is happening regarding follow up studies.

Clearly, there is an urgent need to see if other research groups, in other countries, using other laboratories, can replicate the American findings.

Patient selection is very important. Studies involved stored blood samples are going to have difficulty in finding samples from people who meet both Fukuda and Canadian diagnostic criteria – as were used in the American study. But this should be less of a problem when using new clinical cases.

If the results are consistently replicated, we can then move on to looking at the pathogenicity of the virus (ie is it a disease causing virus) and even antiviral treatment.

XMRV was discussed in some detail at the Medical Research Council Expert Group Workshop on November 19/20 where there were four UK researchers present who are actively involved in XMRV research:

• Dr Jonathan Stoye – National Institute for Medical Research
• Dr Kate Bishop – NIMR
• Dr Jonathan Kerr – St George’s Hospital
• Dr Suzanne Hagan – Glasgow Caledonian University

There are several other UK virologists involved with XMRV research as well – including Prof Greg Towers at University College. London, whom CS recently met for an afternoon discussion.

So replication studies and other XMRV research is taking place, or is about to take place, here in the UK.

MERUK plus IRISH ME TRUST has just funded an XMRV replication study in Sweden.

The MEA Ramsay Research Fund has money available for UK studies – but money does not appear to be an immediate problem in the UK.

It looks as though there may even be some early results from replication studies before the end of the year.

On the subject of blood donation, the MEA has been in correspondence with the Chief Medical Officer, Sir Liam Donaldson – who has repeated the guidance that people with ME/CFS should not donate blood until they have fully recovered. Various expert groups are considering the implication of XMRV being present in the healthy population in relation to blood donation – in view of the US prevalence figure of around 4%.

Version 4 of the MEA position statement on XMRV, which includes the exchange of correspondence on blood donation with the CMO, can be found on the MEA website.


There was a short discussion on the pros and cons of using meeting rooms in either the House of Commons or Portcullis House for future APPG meetings. Des Turner pointed out that one of the problems with Portcullis House is that the large rooms are very heavily booked and the small rooms are too small.


Des Turner referred to the continuing difficulties people were having with the new ESA and the need for people to notify the charities when serious problems were arising. A short discussion followed, which included reference to the various measures – appropriate and inappropriate – that are being used to try and help people back into work and the difficulty in finding suitable welfare rights advisers.


Peter Spencer referred to a briefing paper that had been prepared by himself and the Countess of Mar. This can be accessed in the APPG paperwork on the MEA website. It was pointed out that the Countess of Mar had put a lot of work during House of Lords business into trying make changes to this legislation on behalf of people with ME/CFS.


With the close of the meeting imminent there was only time for short discussions on concerns relating to the change of name of the CNRCC to the British Association for CFS/ME, and how this organisation operates within the NHS (raised by Jill Cooper) and some further criticisms of the Lightning Process.


It was agreed to try and hold one further meeting, possibly in February 2010, before the General Election takes place – presumably in May 2010.

After the Election, there will need to be a meeting to reform the APPG. At present, it looks as though this could be taking place in late May or June, which would probably mean no other meetings before the 2010 summer recess.

Prepared by Dr Charles Shepherd
Hon Medical Adviser and Trustee

The ME Association

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


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


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



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:

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:

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.


Two responses around XMRV: Prof Simon Wessely; Dept of Health

Two responses around XMRV: Prof Simon Wessely; Dept of Health


Two users of the Whittemore Peterson Institute Facebook site have kindly given permission for the following responses to be reproduced here, on ME agenda.

Update: The response from Professor Simon Wessely following an enquiry by a member of the public has been removed since permission for publication and the terms under which Professor Wessely’s response might be republished had not been discussed.  A copy of the response was also published by me via Co-Cure together with the response from the Department of Health.  This is also being removed.


Whittemore Peterson Institute on Facebook

Heath reported on 12 November that he wrote to the Department of Health.  The DoH response was:

Thank you for your email of 28 October to the Department of Health about xenotropic murine leukemia virus-related virus and chronic fatigue syndrome/myalgic encephalopathy (CFS/ME).

The Department of Health agrees with the World Health Organization’s classification of CFS/ME as a neurological condition of unknown cause. The Department also agrees that CFS/ME is a genuine and disabling illness and can have a profound effect on those living with the condition. That is why research breakthroughs such as the one outlined in your email, are so important to developing the knowledge base.

The National Institute for Health and Clinical Excellence (NICE) clinical guidelines are updated as needed so that recommendations take into account important new evidence. However, as I hope you will appreciate, as NICE is an independent body, the time-frame for revising guidance and the evidence it uses are matters entirely for NICE. You may therefore wish to raise this issue directly with NICE’s Chief Executive, Andrew Dillon, at the following address:

MidCity Place
71 High Holborn
London WC1V 6NA

I think it also helpful to emphasise that NICE clinical guidelines are just that – guidelines for healthcare professionals use in conjunction with their clinical judgement and based on an individual assessment of each patient’s needs. The guideline recognises that there is no one form of treatment to suit every patient and it does not force patients into treatments they do not want.

The guideline emphasises a collaborative relationship between clinician and patient, that treatment and care should take into account personal needs and preferences, and that healthcare professionals should recognise that the person with CFS/ME is in charge of the aims of the treatment programme.

Cognitive Behavioural Therapy is a rehabilitative approach designed to modify the way patients think and behave about their illness and so improve physical symptoms. In common with other illnesses and conditions where it has been successfully used such as chronic pain, cancer, heart disease and diabetes, its use does not imply that the cause of the illness is psychological.

The Department feels that it is not helpful to differentiate between biomedical and psychosocial treatments as, based on clinical evidence that is currently available, patients are best served by a holistic approach.

You also comment on the paucity of bio-medical research. I know that many of the Department’s stakeholders see biomedical research as the key to developing new treatments and the Department appreciates the concern about a lack of biomedical research in this area.

As you may know, the main agency through which the Government supports medical and clinical research is the Medical Research Council (MRC). The MRC is wholly independent in its choice of which research to support and it does not generally earmark funds for particular topics. It maintains a rigorous decision making process and only funds research that is likely to make a significant contribution to knowledge and is a good use of taxpayers’ money. Decisions to support proposals are taken on the grounds of scientific quality and whether the research proposed would be likely to inform the knowledge base. There is certainly no bias, and the Department knows that the MRC remains committed to funding scientific research in all aspects of CFS/ME.

The Department understands that the MRC continues to attract a small number of proposals for biomedical research. The problem is that there appears to be a shortage of good and innovative ideas within the scientific community itself. This is something the Department knows that the CFS/ME community and the MRC are aware of, and the MRC have endeavoured to address this by engaging with patient groups to encourage high quality research proposals. The MRC continues to acknowledge the importance of research into CFS/ME, and it is difficult to see what more the MRC could do without lowering the quality threshold.

I hope this reply is helpful.

Yours sincerely,

Priya Bassan
Department of Health

Related information:

Source: ME Research UK

The Medical Research Council: a case to answer?


CFS/ME projects currently funded by the MRC
(Sources: MRC website; Hansard, written answers)

•Two large clinical trials of new approaches to treating CFS/ME:
          PACE (Pacing, Activity and Cognitive Behaviour Therapy: a Randomised Evaluation, £2,076,363) [Prof. PD White, Psychological Medicine, Queen Mary and Westfield College]
          FINE (Fatigue Intervention by Nurses Evaluation, £824,129) [Dr AJ Wearden, Psychological Science, Uni. of Manchester]

•A preliminary epidemiological project to test the feasibility of identifying the risk factors for persistent symptoms of fatigue and abdominal and widespread pain (£118,263) [Prof. F Creed, Psychological Medicine, University of Manchester]

•An epidemiological study to assess ethnic variations of the prevalence of a CFS-like illness, associations with potential risk factors, and coping behaviours (£162,145) [Prof. K Bhui, Cultural Psychiatry and Epidemiolgy, Queen Mary and Westfield College]

•Indirect support through a trial exploring the management of patients with persistent unexplained symptoms [Specifics unknown]

•One project was mentioned in Hansard (12th June 2008) but is not on the MRC website: General and specific risk markers and preventive factors for chronic fatigue and irritable bowel syndromes (£367,000) [Dr C Clark, Centre for Psychiatry, Barts and The London School of Medicine]


Table. Unfunded applications to the MRC between 2002 and 2008

Time-frame   (number of applications)   CFS/ME subject area

2002 to 2005 (11 total) Neurophysiology of fatigue; Population-based/epidemiological studies (4 applications); Neurotransmitters and stress; Neuroimaging; Clinical and laboratory characterisation physiology/diagnosis); Dietary intervention — RCT; Facilitated self-help — RCT; Psychosocial and genetic factors in young people

2005 to 2006 (12 total) Pathophysiology, including studies regarding genetics/biomarkers, immunology and neuroimaging (7 applications); Population-based/epidemiological studies (3); Primary care study; Experimental medicine study

2006 to April 2007 (7 total) Cognitive outcomes in children — pathophysiology; Epidemiological studies — epidemiology; Biomarkers; Pathophysiology (2 applications); Molecular pathogenesis — pathophysiology; Molecular and genetic characterisation — pathophysiology; Neuroimaging — pathophysiology

May 2007 to June 2008 (3 total) Biomarkers — pathophysiology; Management and treatment — intervention; Management and treatment — observational study