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FOI Report

FOI Report

On 30 May 2023, we published our FOI report which revealed that people with ME are dealing with shockingly poor and patchy provision of services in England.

In 2021, the NICE Guideline (NG206) on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) was released. It highlights best practice for treating people with ME/CFS and what their care plan should look like.

Since then, we, at Action for M.E., continue to hear from members of the ME/CFS community who are left feeling hopeless and forgotten. This appears to be due to the uneven provision of specialist services across England, with many areas having no services whatsoever, prompting us to ask all 162 NHS Trusts/ICBs about their implementation of the NICE Guideline. While there are limitations to an FOI, our data provides a snapshot of knowledge held by commissioners at that point in time.

The responses received from ICBs/NHS Trusts revealed significant insights, including:

• Only 28% of NHS Trusts and ICBs have implemented the 2021 NICE Guideline.

• Fewer than one in four NHS Trusts/ICBs are able to track their ME/CFS patients.

• Just two thirds of NHS Trusts and ICBs hold no information whatsoever on their ME/CFS patients.

Our Chief Executive, Sonya Chowdhury, said:

“We conducted this FOI to explore how the implementation of the 2021 NICE Guideline and gain a better understanding of the current state of ME/CFS services in England.

“The report makes for sober reading and while not a surprise to many, the findings indicate significant gaps in services provided for ME/CFS patients at a primary level across England, emphasising the urgency for increased efforts from the Health Service and the Government. “It is important that decisive action is taken to address these issues and ensure that ME/CFS patients receive the appropriate care they deserve.

“We eagerly await the Government’s promised delivery plan on ME/CFS, and remain optimistic that despite the delays in publication, this will be a step forward for everyone in the ME/CFS community.”

The Government has committed to a national delivery plan, but this has been continually delayed. This report highlights the need for urgent action to support people with M.E. across the country.

Read the full report here.

Access the raw data here.

Further key statistics

• Only one in ten (21,927) of the estimated 250,000 patients are currently recorded as having ME/CFS in the medical system.

• Only one in five people with ME/CFS have a personalised care and support plan in place.

• One quarter of NHS Trusts/ICBs do not know whether their ME/CFS patients have a personalised care and support plan in place.

• 11 respondents indicated that there was no training provided for healthcare professionals on the implementation of the Guideline.

• Only 5 of the 162 NHS Trusts/ICBs indicated that they had given any form of training on the Guideline to healthcare professionals.

• Five out of six respondents who explicitly said that the NICE Guideline has not yet been implemented in their NHS Trust/ICB indicated that implementation is under review.