BRAME, as we have done every year, have written to all MPs and members of the House of Lords to highlight ME and the issues faced by all those affected, as well as the events occurring on 12 May 2004.

1 May 2004

Member of Parliament

House of Commons

LONDON

SW1A 0AA

Dear Member

I am 28 years old and am a severe and chronic sufferer of ME. I have now been ill for 18 years. ME is a devastating illness that does not respect age, occupation, race or gender. 25% of ME sufferers remain severely affected, and in children 51% of long-term absence from school has been due to ME. I launched BRAME in April 1995 to create a greater awareness and understanding that ME is a complex and debilitating illness of organic origin. BRAME very quickly became a national campaign, and by the end of 1995, a world-wide campaign. BRAME is now in 21 countries around the world, uniting those living with ME, and the Blue Ribbon is our universal symbol and 12 May is International ME Awareness Day.

On Wednesday 12 May, International ME Awareness Day, the BRAME campaign is creating a greater awareness and understanding of ME around the world, whilst also showing its support and understanding for all those living with ME. BRAME is also supporting Castleford Aid for ME (CAME) who is organising a rally on 12 May from Department of Health in Whitehall to House of Commons, where at 2 pm they hope to meet with as many MPs as possible, and we hope that you will be able to attend. CAME is being joined by other ME Groups and ME sufferers and their supporters, and BRAME is supporting them and the ME Association, who will be handing a petition to 10 Downing Street at 1 pm, requesting urgent funding of research into the aetiology and pathogenesis of ME by specialists in physical disciplines such as neurology, endocrinology, immunology, and cardiovascular problems.

We would like to thank all the MPs who have signed up to the All Party Parliamentary Group (APPG) on ME, and the many others who wish to be kept informed. The APPG on ME was set up by Tony D Wright, MP for Great Yarmouth, who announced its formation at the BRAME meeting we organised on 14 May 1998 in the Grand Committee Room at Westminster, during which we presented the wealth of literature we had compiled to be placed in both Parliamentary libraries. The APPG meets every two months and invites relevant speakers to address the group about ME and matters concerning those affected by the illness, such as lack of appropriate medical care around the UK, much needed research into ME, and problems with claiming benefits, pension rights etc.

We are most grateful to Tony Wright, Chair of the APPG on ME, for his tremendous hard work and support of ME sufferers, since being elected to Parliament, and for continuing to raise issues relevant to those living with ME in the UK. Mr Wright has applied for an adjournment debate to highlight the breadth of problems faced by ME sufferers when claiming benefits, and will refer in particular to Disability Living Allowance (DLA) and the new ‘Permitted Work’ rule which seems to be prejudicial to sufferers of this very real and chronic illness. DLA is often denied to ME sufferers due to lack of knowledge and understanding of the illness, the continuing widespread and institutional prejudice that often still exists, lack of effective benefits evaluation tools and criteria, poor training and education of DWP staff and visiting doctors about the physical illness ME, also the fluctuating nature of ME and the difficulties for many to obtain a diagnosis. We hope that you will feel able to support your constituents and Tony Wright when he is allocated this debate.

Following the support of MPs at the BRAME meeting in Parliament, the then Chief Medical Officer (CMO) in July 1998 announced the setting up of a Working Group on ME/CFS, of which I was invited to become a member of the Reference Group and then the Key Group. The report was finally made public on 11 January 2002. More than 2 years on, my fears have now come to fruition; many Local Health Authorities (LHAs) and GP’s across the UK will now only fund or recommend Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) as appropriate forms of treatment as a result of the CMO report. This is despite research evidence from 4,000 sufferers of ME being presented to the CMO Group stating that the majority had found these treatments either harmful or not helpful.

Following the CMO report the Medical Research Council (MRC) was asked, summer 2002, to look at research into ME/CFS. BRAME, like many other groups, researchers and individuals with an interest in ME, responded to the MRC’s request for suggested areas of research, by identifying relevant areas of research into the organic illness ME. These areas included an accurate national epidemiological study on ME, along with areas of research to look at the causation and disease process of the illness, leading to research into possible effective forms of treatment. It is sad to hear that the MRC is to fund yet further research with psychiatrists on Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET), including the severely affected and young people with ME/CFS, which causes us great concern.

ME has been classified for some time now by the World Health Organisation as a neurological illness, and even the CMO states that CFS/ME should be classed alongside other chronic illnesses such as Multiple Sclerosis and Motor Neurone Disease, and yet the recommended forms of treatment for CFS/ME have been those supported and developed by psychiatrists. Current research on ME around the world suggests that there is dysfunction of the central nervous system and the neuro-endocrine system, with secondary immunological disturbance and blood rheology involved in the pathogenesis (development) of the illness. With approximately 200,000 people in the UK suffering from ME, and about 50,000 of those severely affected, these are all areas which need to be researched with some urgency to help us understand this illness, and to try and find some effective form of treatment that will help to alleviate the constant pain and suffering which most with ME endure day after day, year after year, and for some decade after decade, to enable them to have some quality of life once more. We must no longer put the cart before the horse, we must understand the aetiology and pathogenesis of this illness before coercing treatment on patients.

Our patron, the Countess of Mar, led an excellent debate on ME in the House of Lords in January, where she challenged the work of Professor Simon Wessley, a psychiatrist at Kings College, and his listing of ME/CFS as a mental disorder in the WHO Guide to Mental Health in Primary Care, produced under the auspices of the Institute of Psychiatry, a collaborating centre of WHO in the UK. This has given the impression that WHO itself has reclassified ME, when it is NOT the case. The World Health Organisation in Geneva has never classified ME as a psychiatric disorder and has no plans to do so, ME is classified as a neurological disease in the WHO’s internationally recognised international classification of diseases, ICD-10, under the neurology chapter G93.3. The Department of Health has confirmed that it works to the ICD-10.G93.3 definition of ME/CFS. The Countess of Mar also informed the House of the recently published Canadian case definition of ME/CFS, based on a study of more than 20,000 ME/CFS patients, by world experts on ME/CFS, providing definitive evidence for clinicians to assess and diagnose patients accurately. As long ago as 1994 Professor Paul Levine from the US National Cancer Centre stated that: ‘the spectrum of illnesses associated with a dysregulated immune system must now include ME/CFS’

The Countess of Mar also challenged the in-balance in research funding when Professor Wessley et al are about to receive £11.1 million, including £2.6 million from the Medical Research Council (MRC) to do further studies with ME/CFS patients using CBT and GET, despite recurrent surveys of thousands of ME sufferers which have shown that the majority of patients have found these types of treatments harmful or not helpful. In comparison the CFS Research Foundation has found evidence of changes in 20-50 genes in ME/CFS patients with some consistently altered. The cost of this ground-breaking research is £352,239, no funding has come from Government, and £237,000 is still needed to be raised. This initial research shows such potential that it could lead to drugs/treatments that could truly lead to defeating this disease. To extend these trials to include hundreds of patients around the UK would then need more substantial funding, but not as much as is given to the psychiatrists. MERGE, another research group, have found changes in the cardiovascular system, they need £150,000 to extend these trials. There is a broad spectrum of good research into ME/CFS showing neurological, immune and endocrine dysfunction, vascular disturbances and abnormalities in muscle, including abnormal recovery after exercise, but funding for such studies is hard to obtain.

We of course welcome the new funding of £8.5 million to set up 12 new Clinical Network Co-ordinating Centres (CNCC) for ME/CFS, which was announced by Jacqui Smith at the Department of Health, on 12 May last year. The CNCCs were announced earlier this year and are to be based in Newcastle, Leeds, Liverpool, Manchester, Sheffield, Birmingham/West Midlands, East Midlands, East Anglia, North London, Surrey, Bath/Bristol and Cornwall/Devon, and are to be funded from April 2004. The CNCCs will have Local Multidisciplinary Teams (LMDT) funded from April 2005. There are concerns within the ME community that some of these centres will still be run by psychiatrists, and whilst the initiative is welcomed, it could end up being a post-code lottery as to what type of care and management methods ME patients will be offered. We sincerely hope that the feedback from these clinics, and the patients, will help to develop what is good practice in the care and management of people with ME. Please listen to your constituents feedback on the NHS provision for ME sufferers in your area.

Across the UK there is still a very mixed understanding of the illness ME and of the medical and support services provided. ME sufferers from the UK need your support to highlight the illness and the plight of sufferers. We need all MPs to support the APPG as they lobby Parliament:

It is important that patients with ME are treated with the dignity and care that patients with other chronic illnesses are afforded. They should be offered the support and understanding they need to live with such a complex and debilitating illness, and offered appropriate symptom control and management of their illness, and not forced into treatments such as CBT and GET. The Government pledged that it would listen to patient evidence and yet with ME, the evidence of thousands of patients has been largely ignored as far as treatment of ME patients is concerned. The Government must listen to the patients and what they find to be good practice in managing their illness. There must also be a fairer and more balanced funding of future research projects, to help us have a greater understanding of the aetiology and pathogenesis of ME, so that one day there will hopefully be a diagnostic test, effective treatment or cure for ME.

Whilst we are representing people with ME and issues relating to the illness, we have over the years also been raising with MPs, and other relevant agencies such as the Department of Works and Pensions (DWP), the role of carers and the issues of Carers Allowance and the lifeline that Post Offices have in local communities. These are issues which affect those living with a chronic and disabling long-term illness like ME, and many other vulnerable groups in society.

We are continuing to campaign for more support for carers of anyone severely sick and/disabled – especially for those in need of 24/7 care. We have been campaigning for some time that there should be 2 levels of Carer’s Allowance (CA) with the higher level being for those who care for a minimum of 120 hours per week. For those at present offering 24/7 care and in receipt of CA, even with the latest increase, CA equates to only 26 pence an hour. The higher level could be made up of the £44.35 CA (new rate from 12 April), plus the government making up the £79 per week that the carer is allowed to earn - but are unable to because they are caring 24/7 - another possibility is making the higher level ICA a passport benefit. Relatives/friends who give up their personal and working lives, often for many years, in order to give the necessary care, are neglected by the government, whilst saving them billions of pounds every year in high intensity nursing/care. We are grateful to the government for introducing extra pension credits for carers from last year, but these credits are not retrospective, so a person who has cared for someone for over 15 years would not benefit if their relative/friend unfortunately died. We propose incremented extra credits being given in retrospect for those who have cared for more than 5 years, 10 years and finally over 15 years. We sincerely hope that all MPs will feel able to support carers and our proposals. Let us give those who give so much our support.

We would like to also call on your support to challenge the latest Government initiative to get carer’s of sick and disabled people back into work. Recently the DWP sent out letters stating that from 12 April 2004 carers of partners will be asked to attend a compulsory work focused interview with a personal advisor, if they live in a Job Centre Plus area, if they refuse then the sick/disabled person’s benefit would be reduced. The 2001 census reported 5.2 million carers in Britain, who will offer the necessary caring to their loved ones if they are forced back to work? Who else will offer this level of care at a cost of 26 pence per hour?

In our news-update in December 2003, we reported on our meeting with the Chief Executive and Senior Managers of the DWP in London in July 2003, where ourselves, and representatives of other client groups, strongly conveyed the concerns, as we had for the previous 2 years of consultation on this issue, that many chronically sick, disabled and elderly people have about direct payments and the use of PIN numbers. This method is particularly difficult for clients who have sight, physical and mental health problems, and especially those who have an agent collect their benefit for them, these clients often rely on casual and/or multiple carers, who then have access to the person’s full account. At this same meeting, in highlighting our concerns over new direct payment methods, and our concerns over closure of local Post Offices we were also informed by senior management that the DWP only has a contract with the Post Office until 2010, where then will these vulnerable groups access their benefits?

In meetings we have had over the past 2 years we have continually voiced our deep concern over the increasing closure of local Post Offices. MPs and officials have in the past assured us that Government does not plan on closing Post Offices, especially those in rural communities, and yet over the past year these have increased. In April 2004 a statement was made that recommendations are being made by the postal industry regulator that 1,600 rural Post Offices could close under new recommendations. It is said that £150 million a year subsidy is needed to sustain the rural network of Post Offices, and Dept of Trade & Industry says the system could be run with less branches. How many MPs feel that their constituents will not be seriously affected by such closures? How many of your constituents are elderly, chronically sick or disabled people, mothers of young families or low income families who can neither physically make the journey, or afford the bus fare, that is if there is a bus in a rural community, to access a Post Office or bank miles away. Money can be found to support others, and actions in other countries, why can’t such a vital service to local communities and our more vulnerable members of society receive the support they need?

Yours sincerely

Chairperson of BRAME

Encs: Blue Ribbon, BRAME Campaign and Symptoms of ME leaflets, 12 May Poster, 25% ME Group Survey