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.
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.
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.
‘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.’
In Cheshire and Merseyside the long covid clinic was closed recently
Do they mean the fact that you have to wait the 6 months for your acute post-covid symptoms to become long covid?
Patients do not need to go to a specialist clinic for diagnosis of Covid anyway, they only need to mark off the 6 months on the calendar, and then they know it is long-covid.
There are as yet no geed treatments for long-covid, APART FROM not getting infected with acute covid to start with. We need to take preventive measures, seeing as currently-allowed vaccinations do not prevent infection and long-covid, only reduce severity of acute infection and need for ventilators.
So long covid clinics (if there were any) have little to offer, and staff could be better used promoting clean indoor air, and effective control of transmission by use of masks and isolation.
CFS/ME/FMS/LongCovid/postviral fatigue. What is the point of diagnosis when there is no treatment other than to foster a determination to cope? Maybe one day there will be a biological target for therapy but I doubt it. The patient action groups and the medical profession seem as far apart as ever… and the suggestion that doing more and taking a positive attitude is mostly met with the accusation of “medical gaslighting”, at least on TikTok it is. A very hot topic right now on that erudite forum of scientific discourse.
Our Long Covid clinic has been highly rated by the patients going through it A holistic approach with a liaison with GPs to ensure newly trigger diseases are spotted and managed effectively and then interventions and education provided via a skilled multidisciplinary team
interventions for SLT Dysfunctional breathing POTS Paced activities OT Benefits Mental Health support Lifestyle and functional medicine interventions including liaison with community support services and social prescribers
Patient led development and collaboration has helped ensure participants feel they are getting the help they want
Outcomes include reduced disability and return to work in most cases
Sadly the funding has just been cut by 40% and instead of actually expanding this approach to include more chronic diseases where patient self care could be maximised and removed from overburdened services it is now going to be a token effort probably wound down and closed like so many others
The patients and the GPs who will now have to try to help these quite disabled people deserve better and a lot more support not less
There are also potential medications that may help the fatigue in the pipeline who is going to administer those when they hit the market with no specialist to understand if it may help and likely be costly