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4 June 2008

To All ME Groups and People With ME

Ann Keen MP, Under Secretary of State for Health, agreed to attend the APPG on ME meeting on 22 January 2008, 8 months after BRAME first wrote formally, through the APPG on ME on 17 May 2007, stating the need for a Minister of Health to address, and deal with, issues surrounding the inequality of health care surrounding ME. BRAME handed a formal letter to Ann Keen at this meeting, raising important issues for patients with ME, which we wanted addressed. BRAME also asked for an urgent meeting with Ann Keen and Lord Darzi, especially in view of the forthcoming publication of the Darzi Review of the NHS in July 2008, which Ann Keen agreed to arrange.

After a polite reminder to Ann Keen on 5 March, we eventually received a response on 2 April, in which she did not really address most of the issues we had asked, and said that she could ‘see no reasonable prospect of finding the time for such a meeting in the near future’. This response was most disappointing as the healthcare needs of people with ME, and the health inequality that most ME patients experience, need to be urgently addressed.

Following this response from Ann Keen we immediately informed: Tony Wright, our own MP, patron, and Vice Chair of the APPG on ME; Dr Ian Gibson Secretary of the APPG on ME, and now patron of BRAME; Dr Des Turner, Chair of the APPG on ME; and also our patron Countess of Mar, all of whom were also disappointed by this response.

We must highlight in particular our gratitude of the Countess of Mar, who in response to this letter from Ann Keen, managed to secure a debate with Lord Darzi in the House of Lords on 2 June, and our sincere thanks to her for this, for she, and other members of the House, highlighted the classification of ME, the inequality of health care, and needs of ME patients.

Tony Wright MP, who has always supported us, responded to Ann Keen’s letter by writing to Lord Darzi personally on 9 April requesting an urgent meeting. Tony received a response from Lord Darzi on 8 May, which he has forwarded to us, in which Lord Darzi also states that ‘unfortunately, due to my heavily committed diary, I am unable to meet with your constituents at present’.

There are two main issues in Lord Darzi’s response, firstly he refers to ME as ‘Myalgic Encephalopathy’, which is not recognised or classified as a neurological disease by WHO, or the Department of Health, this must be urgently addressed, and the term ‘Myalgic Encephalomyelitis’ must be used, which is classified by WHO (ICD10 G93.3) as a neurological disease. More research is also showing that there is inflammation present to support the use of encephalomyelitis.

Secondly, although both Ann Keen and Lord Darzi state that the Government do recognise ME as a neurological condition, we will continue to raise with Lord Darzi that ME must be included under the heading of Neurological, and Long Term Neurological Conditions, in current, and future, guidance and documents, produced by the Department of Health, and other Government departments. We have also been raising with Lord Darzi the need to include, in his Review, an appropriate statement about ME, which also acknowledges that there is misunderstanding and inequality of healthcare for ME patients around the country, and the urgent need for biomedical ME clinics, certainly within each SHA, with outreach clinics in each PCT.

It appears, from the content of Lord Darzi’s letter, that each SHA in England is going to have to take responsibility for their own services, more than an overall national directive on specific services. We were at the launch of the East of England NHS Review on 12 May, where we again handed more information and letters to Lord Darzi on ME, and that was certainly the message conveyed there. BRAME will of course give a full feedback to the Review for East of England and our campaigning will continue at a Governmental, regional and local level.

As individual patients, and patient groups, we can only urge each of you to become involved at a local level in responding to your local SHA Reviews of the NHS. All SHAs should publish their consultation drafts on 8 areas of health. All areas will be relevant to some ME patients, but the main areas which will be particularly important are; long term conditions, planned care, acute care, end of life care, and children. Comments could also be made on mental health, as many ME patients have been misdiagnosed, or been erroneously managed under mental health, but as with all chronic conditions, some people with ME will have co-morbid mental health issues, and these need to be identified, and acknowledged, as management will be complicated by the person’s ME.

Do please request copies of the NHS Review for your own area and respond. Highlight the inequality of care for ME patients; the need for a biomedical health service for ME; the need for on-going care and monitoring, and the care needs that you require. Please also include the urgent need for the education of all healthcare professionals on neurological ME as listed by WHO (ICD10 G93.3), and the need to adopt the Canadian Clinical Guidelines for diagnosis and management of ME. One biomedical clinic that has used the Canadian guideline found that 95% of their patients fitted the Canadian clinical criteria for ME, with the other 5% still being seen and clinically managed, if no other explanation for their symptoms was found.

Please also contact your own local MPs and try to get them involved. We have many of our local MPs supporting us both at local level, through the APPG on ME, and through Parliamentary debate and process.

With each of us doing what we can, hopefully we can make a difference, but you need to respond to your own SHA Reviews in the coming weeks, and try to become involved in the development of healthcare for ME in your own area.

We sincerely hope that you will feel able to support BRAME to create a greater awareness and understanding of ME within the NHS, and help to create improved health services for those living with ME. Please keep in touch and let us know how things are going in your own region, and how successful you are, so that we can collate the potential outcome of NHS services for people with ME.

Best wishes


Chairperson and Secretary BRAME