NHS patients with myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) and long Covid face significant delays in diagnosis and report low satisfaction with specialist services, a large survey has found.
Some patients with ME reported waiting more than a decade for a diagnosis, researchers have reported in BMJ Open.
The parallels seen in the experiences of those with ME/CFS and long Covid suggest ‘significant improvement’ is needed in how patients are diagnosed and cared for across health and social care services, the team concluded.
More than 10,000 people responded to the survey which also found fatigue (88.2%), post-exertional malaise (78.2%), cognitive dysfunction (88.4%), pain (87.6%) and sleep disturbances (88.2%) were the most commonly reported symptoms among participants with ME/CFS.
Similar patterns were observed in responses from those long Covid to the survey, which was done in 2023, the report led by the University of Exeter noted.
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Time to diagnosis for ME/CFS ranged widely, with 22.1% diagnosed within one to two years of symptom onset and 12.9% taking more than 10 years.
Despite the fact that NICE guidelines for diagnosing and managing ME/CFS were updated in 2021, only a small proportion of respondents reported this had led to a positive impact on care.
Of those with ME, 72% were aware of the NICE guideline, but 65% stated they had not noticed a difference in healthcare support.
Similarly, 35% of those with long Covid were aware of the NICE rapid guideline, but 66% said it had made no difference in the healthcare support they received.
Satisfaction with NHS services was low for both groups of patients – at 6.9% for those with ME/CFS and 14.4% for long Covid.
Around 70% of respondents reported moderate-to-severe impacts on their lifestyles which required substantial changes to their daily activities.
Patients also said there was a need for better-coordinated care which was often complicated by patients having co-occurring conditions.
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The report calls for more equitable access, better-coordinated services, comprehensive provision, and support to align with NICE guidelines across all four nations and regions.
Professor Helen Dawes, professor of clinical rehabilitation 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,’ she added.
Martine Ainsworth-Wells, trustee and campaigns director at The ME Association, who was also involved in the report, said the report was timely as it coincided with the Government’s upcoming Delivery Plan for ME and chronic fatigue syndrome, which was in its final stages.
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‘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.
‘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.’
A version of this article was originally published by our sister title Pulse
