– in the House of Commons at 10:16 pm on 23rd February 2010.
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 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.
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 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 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
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.
I congratulate 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 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.
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 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 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.