Five members of the group had a meeting with one of our local MPs, Dr Vince Cable, in July when we presented him with a copy of our Group Survey and asked for his support on a number of issues, particularly relating to people suffering from severe ME and the lack of medical and social support that they receive. We also emphasised the problems we experience in getting IB/ESA/DLA and the number of claimants who fail the assessment and then succeed on appeal.
Dr Cable agreed to take up any cases from his constituency that are put through to him. Following the meeting, at our request, he sent letters to Social Services and NHS Richmond prompting them to reply to the issues raised in the Group Survey, and a letter to Paul Burstow in the Department of Health referring to his letter to us last year, which is available on our website.
Mr Burstow replied to Dr Cable:
Thank you for your letter of 30 July on behalf of the Richmond and Kingston ME Group and enclosing a copy of correspondence you sent to the Richmond and Kingston ME Group about chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).
I note the concerns raised about the guidance on CFS/ME issued by the National Institute for Health and Clinical Excellence (NICE) in August 2007. However, I should emphasise that NICE guidance does not replace the knowledge and skills of individual health professionals who treat patients or override their clinical judgement. Nor does it detract from the right of patients to be involved in decisions about their treatment.
The NICE guidance recognises there is no one form of treatment to suit every patient and it does not force patients into treatments they do not want. Instead, it emphasises a collaborative relationship between clinician and patient in agreeing the treatment programme.
As the Richmond and Kingston ME Group will be aware, the guideline recommends the use of cognitive behaviour therapy (CBT) and graded exercise (GET) in patients mildly or moderately affected by CFS/ME on the basis that these were the interventions for which there was the clearest research evidence of benefit.
CBT is used to help and support people through many physical illnesses, not just CFS/ME. The therapy helps patients to cope more confidently with their illness, adjust to some of the consequences of being unwell and feel more in control. As with many other conditions, its use does not imply that CFS/ME is psychological in origin.
With any illness that causes a reduction in everyday activity and exercise, a loss of fitness can occur. By introducing an appropriate GET programme, it is possible with CFS/ME patients to gradually reintroduce everyday activities, improve fitness and help them to regain their confidence. Nevertheless, the Department recognises that it is important that GET should be started at a level appropriate to the person concerned, that it is flexible, managed at a realistic pace and is supervised by a health professional with a thorough understanding of CFS/ME.
The Department also feels that it is not helpful to differentiate between biomedical and psychosocial treatments as, based on the clinical evidence that is currently available, patients are best served by a holistic approach.
In your letter, you also mention proposals for biomedical research. The Department knows that many of its stakeholders see biomedical research as the key to developing new treatments and it does appreciate that there are concerns about a lack of biomedical research in this area. As you know, the main agency for supporting medical and clinical research is the Medical Research Council (MRC) and it is one of the main agencies through which the Government supports such research. In 2008/09, the MRC’s total expenditure for research relating to CFS/ME amounted to £728 000.
As the Richmond and Kingston ME Group may be aware, in 2008 the MRC set up a new group to consider how it might encourage new high-quality research into CFS/ME and partnerships between researchers already working on CFS/ME and those in associated areas. The Group is chaired by Professor Stephen Reigate and brings together leading experts in CFS/ME and from associated fields that may be involved in the underlying mechanisms of CFS/ME, as well as from the charity sector.
The aim of the Group is to look at new ways of encouraging new research in the CFS/ME field by looking not only at new technologies but also at associated areas that could help inform on the diverse range of symptoms and possible underlying causes of CFS/ME. The MRC hopes that this will encourage new research towards understanding the causes and subtypes of CFS/ME and lead to an advancement of knowledge in this field and the development of new therapeutic approaches. The Group has met twice and notes of the meetings can be found on the MRC’s website at www.mrc.ac,uk by typing ‘cfs/me’ into the search bar.
The MRC also held a small research workshop for CFS/ME on 19 and 20 November 2009. A note of the meeting has now been published on the MRC website.
With regard to the concerns that existing CFS/ME services provided by the NHS are unresponsive, the Department appreciates that the standard and quality of care for people with CFS/ME has varied widely. As a neurological condition of unknown cause, the Quality Requirements of the National Service Framework (NISF) for Long-Term Conditions apply equally to CFS/ME as they do to any other neurological condition. More information on the NSF is available on the Department’s website at www.dh.gov.uk by typing its title into the search box.
Finally, I note the issue of improving the standard of NHS services through greater patient involvement. Our White Paper Equity and Excellence: Liberating the NHS, which was published on 12 July, states our intention to create an NHS that is more responsive to patients, and achieves better outcomes, with increased autonomy and clear accountability at every level.
The White Paper also sets out our proposals to strengthen the public voice through the introduction of the independent consumer champion, HealthWatch England within the Care Quality Commission, and for LINKS to become Local HealthWatch.
I hope this reply is helpful.
Paul Burstow
