John Sayer: Position statement on inclusion of “fatigue illnesses”

Position statement

John Sayer, Chair, M.E.Support-Norfolk

28 June 2008

For the record, I am also someone who is not in favour of combining M.E. (and aspects of advocacy / campaigning) with any other illness (‘fatiguing’ or not), if for no other reason than that is partly what is holding things back already.

M.E. Support-Norfolk’s stand on this is emphatic:

 M.E.SUPPORT-NORFOLK: WHO WE ARE

Myalgic Encephalomyelitis has been categorised as a neurological disorder by the World Health Organisation (at ICD-10 G93.3) since 1969.

“M.E. Support-Norfolk” – the initials in our name stand for Myalgic Encephalomyelitis – has adopted the ‘Canadian Guidelines’ definition of M.E. ( downloadable from the internet at http://tinyurl.com/br8oa ).

We have been in existence for over twenty years now, having originally begun as a local branch of one of the national M.E. charities and since 2000, when our current name was adopted, have been an independent, self-financing support group.

We have our own library of books, videotapes, DVDs and audiobooks for members to borrow. Most of these are naturally M.E.-related, but some are purely for enjoyment! Members (membership is currently £6.00 per year) also receive our monthly newsletter “MEMO”.

Each April we hold an Annual General Meeting for members, which is sometimes followed by a guest speaker whose presentation is open to the public.

We have also sponsored the occasional presentation at times other than our AGM; for example, Dr. Bruce Carruthers (principal author of the ‘Canadian Guidelines’) and Prof. Malcolm Hooper (Emeritus Professor of Medicinal Chemistry and leading champion of M.E. & Gulf War Syndrome sufferers) gave talks in Norwich in 2005. Both presentations were filmed and made available on DVD and videotape and a special DVD double-pack was also distributed to all GP surgeries and health centres throughout Norfolk.

Regular informal monthly support meetings are held in Norwich, sometimes with presentations on topics such as nutrition and complementary therapies, and individual members also host their own occasional get-togethers as well as organising various events throughout the year, particularly during M.E. Awareness Week, to raise funds for M.E. charities and research.

We have a web site presence at http://www.sayer.abel.co.uk/MES-N.html which includes a selection of relevant articles.

“M.E. Support-Norfolk”, in line with the World Health Organisation, recognises Myalgic Encephalomyelitis as a neurological condition. We are therefore interested in biomedical research and treatments and do not seek to promote ‘biopsychosocial’, psychological or psychiatric approaches to dealing with M.E. The WHO does not have a classification for ‘myalgic encephalopathy’ and we do not promote this name as an alternative for Myalgic Encephalomyelitis.

We do not accept Chronic Fatigue Syndrome as being another name for M.E., nor do we agree that M.E. is an illness ‘characterised by fatigue’. While we recognise that any severe long term illness can induce fatigue as well as anxiety, despair or even depression in patients, in line with the experience of hundreds, if not thousands, of patients we do not accept that cognitive behavioural therapy (CBT) or graded exercise therapy (GET) – or equivalent ‘treatments’ under other names – actually address the illness itself.

Our Aims and Objectives:

  • To provide information and support to people with M.E., their carers, families and friends.
  • To raise awareness of M.E. locally within the media, health care organisations and the general public.
  • To campaign for more recognition, research and better care and benefits for people with M.E.

John Sayer, Chair, M.E.Support-Norfolk

28 June 2008

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