AfME Survey results, 12 May 2008

Ed: Note that on 4 May, Action for ME launched a WordPress blog at  

The blog title is Action for M.E.  Improving the lives of people with M.E.

AfME is using the same WordPress template as ME agenda, which uses horizontal tabs which link to stand alone pages as well as the main blog page, but in a different colour option – so you won’t get the two blogs mixed up <grin>.

The comment section is currently enabled. Given what happened on YouTube, it will be interesting to see how long AfME keeps its comment facility open for.



“Action for M.E. is calling for additional funding for the provision of more M.E. specialists and for more suitably trained GET therapists.”

Survey Results
12 May 2008

Today we present the initial findings of a survey of members of Action for M.E. and the Association of Young People with ME (AYME), focusing on their health and welfare.

Survey results published in a report and online today, 12 May 2008, by Action for M.E. show that one third of people who said that they had had graded exercise therapy (GET), reported that it made them worse.

When properly administered by a specialist who understands M.E., GET can help some people. Nearly 45% of respondents said that they had found the treatment beneficial, compared to 34% who participated in a survey in 2001. In that year, 50% said that GET had made their M.E. worse, compared to 34% in 2008.

M.E. is a chronic, disabling illness which affects 250,000 across the UK. There is as yet no cure so the National Institute of Health and Clinical Excellence (NICE) recommends symptom management, including GET.

Of the 2763 people with M.E. who responded to the charities’ survey, 699 said they had received GET within the past three years. One in three said that it had made them worse.

Sir Peter Spencer, Chief Executive of Action for M.E., insists that healthcare professionals must receive adequate training in all treatment options to minimise adverse outcomes.

“Whilst some NHS specialists are delivering excellent care, results are not consistent. Action for M.E. is calling for additional funding for the provision of more M.E. specialists and for more suitably trained GET therapists.”

The charity is also concerned about the number of GPs who are still unsupportive towards patients who have M.E.

“One in three people who responded to our survey said that their GP was either unsupportive or uninformed about the illness,” said Sir Peter, “yet GPs are the gatekeepers to diagnosis and treatment.

“It is very disturbing to see figures like these, six years after the Chief Medical Officer called for better treatment, care and understanding of M.E.

“The underlying problem is the scandalous lack of investment in research into the aetiology (causes) and pathogenesis (development) of this debilitating illness. Only when this is addressed will the most effective treatments be identified.”

The survey findings also 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 Action for M.E.

and Association of Young People with M.E. website.



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