AfME: Government failing most vulnerable


13 May 2008

As the government fights to prove that it understands the hardship faced by the most vulnerable people in society, a national survey published this week shows that many people who are severely affected by Myalgic Encephalomyelitis/ Encephalopathy (M.E.), have to struggle through the appeals system before they are awarded Disability Living Allowance (DLA).

2763 people took part in the survey, according to a new report and website. Of the 1015 people receiving DLA, 37% (376) had to go to appeal but 72% (274) won their appeal.

Action for M.E. and the Association of Young People with M.E., who conducted the survey, say these people should not have been turned down in the first place.

Sir Peter Spencer, Chief Executive of Action for M.E., said:

“One in three of our survey respondents was either housebound or bedbound yet many face the bleak prospect of spending their lives on benefits, ‘proving’ to the authorities how ill they are, when in fact they are desperate to return to a near-normal life.”

The charity is calling for a systematic analysis of DLA processes and procedures, in order to establish why so many people have to go to appeal.

“The forms are very burdensome for applicants and clearly do not elicit the information needed to meet the criteria for award,” Sir Peter added.

“More research is needed, both to improve understanding of the condition among decision makers and to help people with M.E. back to better health and into work.”

Incapacity Benefit (IB) was another key benefit for people with M.E. as 1133 respondents were in receipt of it. A further 106 were receiving Severe Disablement Allowance and 320 were receiving Income Support.

15% (169) of people receiving IB had gone to appeal/tribunal in the last three years and 81% had succeeded at that stage, again suggesting that they should have been awarded the benefit initially.

It is estimated that 250,000 people in the UK have M.E. The survey findings describe the severity of the illness.

The most common daily symptoms experienced by respondents were poor concentration or memory (84%), overwhelming exhaustion (83%), muscle pain (71%), abnormal sleep (70%), fluctuating body temperature (63%), flu-like malaise (54%), headache (53%), dizziness (46%), constipation or diarrhoea (42%), burning/shooting pain, fibromyalgia (36%), nausea (32%).

Nearly 29% were so severely affected that they were generally housebound and a further 4% were bedbound. Most (63%) described their current condition as fluctuating, in relapse or deteriorating.

At their worst, 36% had been bedbound and a further 52% had been housebound, typically unable to walk for 15 minutes, prepare meals, do light housework or drive a car. 41% had been unable to shower, bathe or wash themselves and 15% had been unable to eat unaided.

While just over 12% had been this bad for less than three months, 18% had been at their worst for up to two years, 18% for 2-4 years and nearly 6.5% for over 10 years.

A report of these initial findings, together with a link to a more detailed analysis, is available online through the AYME and Action for M.E. websites,  and


Read AfME’s media release of 12 May, here:

Download a copy of the AfME Survey or read on AfME’s blog here:



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