NI MEA Short Presentation to Assembly Health Committee

Northern Ireland Myalgic Encephalomyelitis (M.E.) Association.

Assembly Health Committee, Monday 26th November 2007.

(Left to right sitting) Rev. Robert Coulter MLA; Mrs Iris Robinson MP, Chair, Assembly Health Committee; Alex Easton MLA

(Left to right standing) Horace Reid, Committee NI MEA; Ken Hull, Chair, NI MEA; John McAllister MLA

The NI MEA Presentation:

1. M.E. has been neglected by the Department of Health in N.I.

D.O.H spending on M.E. 2004-6.

• 
  
  England, £8.3m


• 
  
  N.I., £25K. (0.03% of U.K. total).

• England, 13 Specialist centres


• N.I. one single O.T.

C.M.O. Reports on M.E.

• England & Wales 2002


• Scotland 2003


• 
  
  Still no NI Report, 2007

2. M.E. is common

M.E. v M.S.
M.E. is more common than M.S. or breast cancer.
There are 6750 M.E. patients in N.I. (N.I.C.E.)
(M.S. 2445; breast cancer 4935).


3. M.E. is disabling.

Affects adults at 40-50, women more. 25% of patients unable to work. Many are housebound, bed-bound, & dependent. Those still working have 50% productivity loss. (Source: U.S. Centers For Disease Control, 2004).

4. M.E. costs U.K. £6b.

• Annual UK cost £6.4b (Benefits, lost earnings, healthcare. (Source: Sheffield Hallam University , '06).


• Annual US productivity cost $9B (Source: CDC '04)


• 28% of male ME patients lose their homes.

5. No Cure For ME

There is no cure for M. E. and no effective treatment. (D.O.H. Belfast, April '07). Only approaches offered by the NHS are coping strategies, treating symptoms, financial support from DWP Benefits (NICE, August '07).

6. Immediate Priorities

• A substantial, ring-fenced NHS budget for M.E.


• Expand Belfast M.E. clinic


• Establish satellite clinics in Craigavon, Omagh, Derry (patients are unable to travel)


• Domiciliary Service for housebound patients


• Avoid controversial treatments. Concentrate on basics:- diagnosis, information, advice on management, proper support from Social Services& Social Security.

7. Treatment Obstacles

• Lack of medical expertise


• Lack of curative research


• Medical "turf wars" - while competing for funds some doctors pretend to have a cure, but they don't


• Misdiagnosis


• Prejudice


• "Malingering" accusations

NICE do not classify M.E. as "mental", but psychiatric medicine is often used as a dumping-ground.