A fully independent research paper by The University of Exeter, highlighting the key findings of The MEA’s Count Me In survey, has been published today in the highly-respected, peer-reviewed British Medical Journal (BMJ).
The survey was the largest and most ambitious of its kind conducted by The ME Association to gain a better understanding of the health and social care experiences of people affected by ME/CFS and Long Covid.
According to the report, ‘_**Understanding Symptom Clusters, Diagnosis, and Healthcare Experiences in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID: A Cross-Sectional Survey in the UK**_’, significant improvement in the diagnosis and care of myalgic encephalomyelitis (ME) and Long COVID is urgently needed across NHS and social care services.
The report also highlights wide dissatisfaction with NHS experiences. Only 6.9% of those with ME and 14.4% of those with Long COVID rated their experience as good to excellent. Many people faced significant delays in diagnosis, with some diagnosed after more than 10 years.
> As part of our aim to educate, inform and influence the medical, research and scientific community, we are delighted that a new independent research report, highlighting the findings of The ME Association’s Count ME In survey, has been published in the highly-prestigious BMJ. This was the largest UK survey of its kind, and ultimately the results will help in our efforts to improve the quality of life for people affected by ME/CFS and Long Covid.
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> Martine Ainsworth-Wells, Trustee and Campaigns Director, The ME Association
The report includes recommendations for improvement to enhance access to NHS and social care services including aligning with the 2021 National Institute for Health and Care Excellence (NICE) Guideline on the diagnosis and management of ME/CFS. Whereas the rapid guideline on managing the long-term effects of COVID-19 needs to be expanded upon to help clinicians to address the needs of those with long COVID also highlighted in this research paper.
Publication of the research paper also coincides with the soon to be released DHSC Delivery Plan on ME/CFS; an initiative, which aims to improve attitudes and education, service provision and boost research into the cause and treatment of ME/CFS. As the published report contains information that is very relevant to the Delivery Plan, a copy has been sent to [Ashley Dalton, Parliamentary Under Secretary of State at the DHSC](https://members.parliament.uk/member/4981/contact) – the minister who is now overseeing the final stages of preparation of the DHSC Delivery Plan.
As an influential medical journal, there is significant merit in achieving publication of a research paper in the BMJ, and The ME Association will continue to use the results to lobby the Department of Health and Social Care for a robust delivery plan on ME/CFS; to educate, inform and influence.
The ME Association’s Count ME In survey ran for 3 months (May-July) in 2023 and received over 10,000 responses from the ME/CFS and Long Covid community. Research findings are based on this survey which was carried out by the ME Association and One Minute to Midnight.