In a first-time test of public opinion, Britain’s oldest charity for people with the energy-sapping disease Myalgic Encephalomyelitis will today start asking hundreds of thousands of sufferers whether they’re satisfied with the support they’re getting from the National Health Service.

Martine Ainsworth-Wells, campaigns director at the ME Association, said: “We know the picture will be patchy – but we want to hear directly from people with the illness, or from those still without a diagnosis, how well or indeed how badly they think the NHS is performing.”

Today (Monday, 22nd May), the Buckinghamshire-based charity launches a major survey to find the answers. The survey will be backed by a nationwide social media and digital advertising campaign scheduled to last several months. This attempt to reach huge numbers of patients, many of whom have given up on seeing their doctors because of breakdowns in the doctor-patient relationship, has never been tried before.

Ainsworth-Wells said: “We want sufferers, those who think they might have ME - otherwise known as chronic fatigue syndrome - and those now being diagnosed with ME after succumbing to Long Covid to count themselves in.

“Every survey questionnaire will get read. Every opinion will carry weight and within a few weeks we plan to build a map, region by region, of patients’ views of NHS services round the UK.”

The ME Association’s ‘Count ME In’ campaign will obtain vital feedback from patients on whether ME/CFS services round the UK are using the most up-to-date guidance from the National Institute of Health and Care Excellence (NICE) on how to manage the incurable illness.

In October 2021, NICE scrapped its guidance that people with ME should be encouraged to exercise their way out of the illness - after accepting advice from the ME Association and researchers that too much exercise taken too quickly can set back recoveries by weeks, months or even years.

“A handful of services have adapted what they offer and now follow the NICE guidance. They’re shining examples of what can be done. But, 19 months on, too many are either ignoring the advice or just gaming the system in the hope that no one will notice they’ve not really changed their practice”, added Ainsworth-Wells.

“This is a big cohort of patients who’ve been neglected by many of the health services for far too long – resulting in a huge loss of talent to the country’s workforce. The NHS has got to do better.”

To fill in the ‘Count ME In’ survey questionnaire, visit:

(https://meassociation.org.uk/count-me-in-me-association-survey)

NOTES TO EDITORS

For further information please contact ME Association press officer Tony Britton, mob: 07946 760811, email: tony.britton@meassociation.org.uk

Almost 70 years since the illness got its modern name of Myalgic Encephalomyelitis, no one really knows how many people are affected. The Chief Medical Officer in 2002 estimated its prevalence at between 0.2% and 0.4% of the population – or up to 250,000 children and adults in the UK.

But actual figures have never been centrally recorded and it is widely thought that the figure is much higher.

Up to a quarter of these are so badly affected that they cannot leave their homes without support and, in the most severe cases, are bedbound, requiring to be tube-fed to survive.

In more recent times, following the covid pandemic, the Office for National Statistics estimates that 2 million people have been suffering from Long Covid – many of whom are now past the Long Covid stage and have been re-diagnosed with M.E.

NICE guidance advises that four key symptoms must come together for a diagnosis of ME/Chronic Fatigue Syndrome to be made. They are: debilitating fatigue made worse by activity; post-exertional malaise after activity; unrefreshing sleep; and cognitive problems, often described as ‘brain fog’.

They may also be accompanied by a myriad of other symptoms including feeling faint or dizzy on standing up or sitting upright; nerve, muscle and joint pain without swelling or redness; alcohol intolerance; and extreme sensitivities to changes in temperature, light, sound, noise, taste and smell.

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