News | The ME Association - Part 198

Today is five years exactly since first report of the new Medical Research Council strategy on ME/CFS appeared on the BBC. What has happened since then?  The ME Association has today written to the new chief executive of the MRC on this issue.

An impressive list of key speakers have been announced for the first of next year’s biomedical and bioresearch conferences on ME/CFS which wlll take place at Southampton General Hospital on February 12. It is being organised by Hampshire Solutions – an alliance for promoting research into ME/CFS and fibromyalgia.

MEA statement on this conference Some of the leading figures involved in researching chronic fatigue syndrome will be speaking at a scientific conference being organised by the Royal Society of Medicine in London on April 28.

Stephen Hepburn, Labour MP for Jarrow, tabled a parliamentary question about the number of people diagnosed with chronic fatigue syndrome in the North East and nationally in England in the past 10 years. The written answer was provided today by Ann Keen, Parliamentary Under-Secretary (Health Services) at the Department of Health.

Bob Russell, Liberal Democrat MP for Colchester, tabled a written question about CFS to the Secretary of State for Work and Pensions and received this reply from Mrs Anne McGuire, Minister for Disabled People in the DWP, on December 12.

Hemispherx Biopharma Inc. said Friday it has received a notice from the Food and Drug Administration that the company’s new drug submission for Ampligen, an experimental treatment for chronic fatigue syndrome, was determined to be insufficiently complete.

The Liberal Democrat MP for Portsmouth South, Mike Hancock, received answers to a number of written questions about ME/CFS  on Monday, December 10. The first set of questions was answered by Anne McGuire, Minster for Disabled People in the Department for Work and Pensions.

The next meeting of the All Party Parliamentary Group on M.E. will take place in Committee Room 17, House of Commons, at 4pm on Tuesday 22 January.

The National ME Research Observatory is asking people with ME to help them identify the different services available for people with ME.

The ME Association is keen to receive feedback from anyone who has been referred to the London Bridge Fatigue Clinic (LBFC) – in particular anyone who has been asked to go there in relation to a permanent health insurance (PHI) or income protection policy claim, or for occupational health reasons.

Konstanze Allsopp’s petition on the 10 Downing Street website calling on the Prime Minister to get the health service and the medical profession to accept the World Health Organisation of ME/CFS as a neurological disorder and not as a psychosocial syndrome has collected over 8,000 signatures so far.

From the ‘Bournemouth Echo’ – Thursday, December 6 AN EAST Dorset mother is calling on the government to give schools more funding to help young people suffering from ME chronic fatigue, after her daughter was crippled by the disease.

A new website illustrating walks round the UK recommended by people who use wheelchairs has been given the seal of approval of the Ramblers’ Association.

A former mayor and his wife were today jailed for 15 months and eight months respectively for falsely claiming almost £50,000 in benefits.

The Telegraph’s doctor, James Le Fanu, returned to the subject of cognitive behaviour therapy as a treatment for ME in his column on Monday, November 26:

To download a copy of The ME Association’s latest political briefing paper, please click here

The ME Association have responded to Dr Mark Porter’s ‘Medical Notes’ column in the London Evening Standard on November in which he welcomed the inclusion of cognitive behaviour therapy as a treatment for ME/CFS in the clinical guideline on ME/CFS, which was recently published by the National Institute for Health and Clinical Excellence (NICE).

Psychologists criticise NICE guidelines for those with Chronic Fatigue Syndrome. The British Psychological Society has criticised the recommendations outlined in NICE guidelines for Chronic Fatigue Syndrome (CFS), ahead of judicial review which is due to begin this week.

Dorset ME Support Group have won a BBC Children in Need grant to meet the full cost of a part-time child support worker – to be attached to the children and young people’s NHS ME/CFS clinics at Dorchester and Poole Hospitals.

Pulse, the UK medical newsletter, carries this story on its website today.