Woman with ME criticises health plan for condition

Maddie Walker says she was active before she developed ME and now uses a wheelchair

A woman living with myalgic encephalomyelitis (ME) said she has "lost faith" in receiving "meaningful support" after the government released a plan to help patients.

ME, also known as chronic fatigue syndrome (CFS), is a neurological disease which affects about 390,000 people in the UK.

On 22 July the government launched a new delivery plan to improve education around the illness, as well as increase funding, research and medical training for health practitioners.

Maddie Walker, 51, from Bedfordshire, said she was "disappointed" in how the plan lacked any "real change to improve the quality of life for sufferers".

Ms Walker said she was healthy and active before she developed severe ME and was now unable to leave the house without a wheelchair and has carers visit her multiple times a week.

She described living with the condition as "mind-numbing" and that she felt "despondent".

The condition's symptoms include fatigue, muscle and joint weakness, cognitive dysfunction and post-exertional malaise.

Misdiagnosis

Ms Walker was initially diagnosed with fibromyalgia with fatigue, a condition causing muscular pain all over the body.

As a result of the crossover in symptoms, Ms Walker's ME was not recognised initially, leading her to be recommended treatment that was not tailored to both conditions.

"Something I feel really strongly about is people being given the right information at the point of diagnosis because if I had known what I was doing was harmful, I might not be in this situation."

Ms Walker said she has a "terrible, really poor quality of life" and that "hundreds of thousands of people have once again been let down" by the new delivery plan.

"We just aren't important enough," she said.

Ashley Dalton says the delivery plan aims to tackle stigma around the condition

The ME Association (MEA) said the government must go "much further" to improve medical care and funding for "much needed" biomedical research.

It added that currently most research studies for ME/CFS are funded by the charity sector.

MEA added there were numerous strengths to the plan, including the approach to broaden education about the illness in the NHS and in schools.

Dr Charles Shepherd, a medical adviser with the MEA, said the plan does not align with the 2021 National Institute for Health and Care Excellence guidelines, which suggested making referral services more accessible in hospitals.

Ashley Dalton, the MP for West Lancashire and minister for public health and prevention, said: "[The] plan will help tackle the stigma and lack of awareness of this condition through improved training for NHS staff."

A spokesperson of Department for Health and Social Care (DHSC) said: "We acknowledge there is more to be done and will continue to build on the foundations of these actions well beyond the publication of this plan."

There was a "clear commitment" to achieving "meaningful change" for the ME/CFS community, it added.

By using neighbourhood health services, the DHSC said it will ensure patients can access quality care closer to home.