Friday, 12 March 2010

The Cost of Complacency - APPG on M.E. final report

This group (mah heroes!) has been running since 1999 and has now given us their final report which expresses dismay and disgust at the current state of NHS and DWP care for people with M.E./CFS

Will work through the report in coming weeks, but I wanted to quote just one bit right away:

"Compared with diseases such as cancer, ME/CFS is less expensive to treat. It is certainly

less expensive than the cost of complacency. The cost to society by paying

benefits and providing social care; the cost of lost taxes and income and the cost to

the patients, both financial and emotional, is far more expensive than the cost of

adequate research, diagnosis and treatment. This is an issue that must be addressed."


Final Report: All-Party Parliamentary Group inquiry into NHS service provision for people with M.E.

11 March 2010

Dr Des Turner MP, Chair of the All-Party Parliamentary Group (APPG) on M.E. released the final report of the Group’s Inquiry into NHS service provision for people with M.E. at yesterday’s meeting of the APPG:

Wednesday March 10th, 1.30-3 pm, Committee Room 18, House of Commons

The inquiry set out to evaluate the extent to which the NHS is providing care for people with M.E. (Myalgic Encephalomyelitis) in England, particularly in primary and secondary care, and in specialist centres/teams.

The inquiry committee consisted of Dr Des Turner MP, Tony Wright MP, Andrew Stunell MP, Peter Luff MP, and the Countess of Mar.

The report sets out 11 recommendations to address the inequalities faced by people with M.E. The report can be read in full here.

Dr Des Turner MP says:

“Our report sets out clearly some long standing problems which are simply not being tackled by organisations that should be doing a much better job of supporting the 250,000 people in the UK with ME/CFS. We are particularly concerned by the failure of many Primary Care Trusts to fund any services for ME/CFS patients especially children and the most severely affected. We are also deeply concerned by the by the poor knowledge that many doctors have about this illness and by the failure of the DWP and its contractor ATOS to understand its adverse impact on many patients’ ability to undertake regular work.”


Issued 11 March 2010 by Kimberley Hogarth

Notes to editor

1. What is M.E.? Myalgic Encephalomyelitis/ Encephalopathy (M.E.) is a chronic fluctuating condition, also known as Chronic Fatigue Syndrome (CFS) and sometimes diagnosed as Post Viral Fatigue Syndrome (PVFS). It affects 250,000 adults and children in the UK.

Common symptoms include muscle pain, persistent exhaustion, poor concentration and memory problems, headache, un-refreshing sleep and digestive problems such as nausea or Irritable Bowel Syndrome.

The National Institute of Health and Clinical Excellence (NICE) recognises that the physical symptoms of M.E. can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions.

2. The All-Party Parliamentary Group (APPG) on Myalgic Encephalomyelitis (ME) was set up in 1999 to raise awareness of ME.

The Group campaigns within Westminster to support the improvement of health, social care, education and employment opportunities for people affected by ME. The Group also aims/campaigns to obtain wider recognition of the need for biomedical research into the underlying cause of ME and effective forms of treatment.

The current office bearers are:

Chair: Dr Des Turner MP
Vice chairs: Anthony Wright MP, Andrew Stunell MP
Treasurer: David Amess MP
Secretary: Countess Mar

Action for M.E. and the ME Association provide the Secretariat services.

Meetings are held 3-4 times per year, depending on availability of speakers.

The APPG has launched an Inquiry on NHS service provision for people with ME. Click here for more details.

3. Action for M.E. ( is the UK’s leading charity working to improve the lives of people with M.E. The charity provides information and support to people affected by M.E. and their carers and campaigns for more research, better treatments and better services for them. It has a volunteer support line, welfare rights line and a range of helpful booklets and leaflets.

4. Action for M.E.'s response to the APPG's inquiry report can be found here:

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