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
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
Issued 11 March 2010 by
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
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
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. (www.afme.org.uk) is the
4. Action for M.E.'s response to the APPG's inquiry report can be found here: http://www.afme.org.uk/news.asp?newsid=776