Report Urges Quicker Diagnosis for ME, Long COVID
Significant improvement in the diagnosis and care of myalgic encephalomyelitis (ME) and Long COVID is urgently needed across NHS and social care services, according to a new report.
The University of Exeter has created an independent report published in BMJ Open based on the findings from a 2023 survey conducted by the ME Association called Count ME In. Completed by more than 10,000 people, respondents reported significant delays in the diagnosis of ME and Long COVID, low satisfaction in specialist services, and a need for improved self-management resources and better-coordinated care.
Many participants also reported dissatisfaction with NHS experiences, with only 6.9 per cent of those with ME and 14.4 per cent of those with Long COVID rating their experience as good-to-excellent. Many of those said they faced significant delays in diagnosis, with some diagnosed after more than 10 years, and the majority (70 per cent) reported moderate-to-severe impacts on their lifestyles which required substantial changes to their daily activities.
Professor Helen Dawes from the University of Exeter Medical School said: “We see parallels between the experiences of ME and Long COVID patients, and our report indicates a need for improved support and timely diagnosis of these conditions, as well as education for health professionals. It’s important that patients with ME and Long COVID have access to a range of specialist services and self-management strategies to enhance their care. Considering the pressure on the NHS, digital health solutions may also offer new opportunities to support earlier diagnosis, empower patients in managing their conditions, and improve access to care.”
Results also indicate there hasn’t been any noticeable improvement in NHS or social care support or service provision since publication of the National Institute for Health and Care Excellence (NICE) Guideline on ME, or the Long Covid Rapid Guideline, in 2021. Of survey respondents with ME, 72 per cent were aware of the NICE Guideline, but 65 per cent stated they had not noticed a difference in healthcare support. Similarly, 35 per cent of those with Long Covid were aware of the NICE Rapid Guideline, but 66 per cent stated that they had not noticed a difference in healthcare support.
ME, also known as chronic fatigue syndrome, is a complex multi-systemic disease involving the brain, muscle, immune and neuroendocrine (hormone producing) systems and is classified by the World Health Organization (WHO) as a neurological disease. The key diagnostic symptoms are debilitating activity-induced fatigue, cognitive dysfunction (brain fog), unrefreshing sleep, and post exertional malaise – where there is a delayed exacerbation of symptoms that can follow even minor physical or mental activity. There is no effective treatment for ME, so management aims to reduce symptoms where possible.
Similarly, after having COVID-19, around 10 per cent of people remain unwell for months with symptoms such as persistent fatigue, brain fog, and breathlessness – although there is a wide range of other problems. Long COVID is when these symptoms persist for three or more months after the initial COVID-19 infection.
This new report highlights the findings from the largest UK survey on symptoms, diagnosis, and management of people with ME and Long COVID ever conducted by The ME Association. In total, 10,458 people from across the UK responded to the online survey, with 8,804 confirming that they or a close friend or family member had ME or Long COVID. Most respondents were female (83.4 per cent).
Recommendations for improvement involve enhancing access to NHS and social care services and closer alignment with NICE Guidelines on ME and Long COVID.
Martine Ainsworth-Wells, Trustee and Campaigns Director at The ME Association, said: “We’re delighted this independent report has been published and it’s also very timely, as publication coincides with the government’s upcoming Delivery Plan on ME and chronic fatigue syndrome. The plan from the Department of Health and Social Care aims to improve attitudes, education, and service provision, and boost research into the cause and treatment of the condition. As the information in this report is very relevant to the Delivery Plan, a copy has been sent to Ashley Dalton – the minister now overseeing the final stages of preparation. Ultimately, these results will help in our efforts to educate and inform professionals who can improve the quality of life for people affected by ME and Long COVID.”
The report acknowledges potential biases in self-reporting and that the sample may overrepresent individuals who are more engaged with patient advocacy groups or have access to online platforms, potentially excluding those with limited internet access or differing healthcare experiences. Researchers recommend future research should focus on developing diagnostic measures and interventions for effective symptom management.
https://news.exeter.ac.uk/faculty-of-health-and-life-sciences/earlier-diagnosis-and-better-care-needed-for-me-and-long-covid-patients-report-finds/