Nina Muirhead,
SAS Doctor Dermatology Surgery,
Buckinghamshire Healthcare NHS Trust,
Amersham Hospital, Whielden Street
Extracts
Re: Long covid: doctors must assess and investigate patients properly
Dear Editor,
I strongly echo this sentiment from my long COVID colleagues about assessing and investigating patients properly and would like to add that doctors must also diagnose patients properly.
We should not treat long COVID as anxiety, nor confuse primary psychological sequalae of COVID with the multisystem disease ME/CFS…
When the COVID-19 global viral pandemic hit, the online ME/CFS community went wild:
“There will be an explosion of post-COVID patients with ME.” “How will the NHS deal with the impending ME tsunami?”
ME/CFS is a common, complex, chronic, multisystem disease affecting tens of millions of patients worldwide. Many cases are triggered by a viral infection and up to a quarter of patients are bedbound or housebound.
ME/CFS appears to be the neglected illness of the 21st Century, residing in a medical blind-spot. ME/CFS is widely misunderstood and should neither be a diagnosis of exclusion nor an exclusive diagnosis.
Evidence shows patients suffer from inflammation, autonomic and metabolic dysregulation and altered mitochondrial function. Exertion results in an exacerbation of symptoms and exercise is not recommended as a treatment.
Accurate identification
Identifying ME/CFS patients amongst, and alongside, those with ‘chronic COVID-19’ is vital. It is also crucial that we learn to differentiate between patients suffering from anxiety, depression and post-traumatic stress from those developing a complex multisystem disease, which as yet has no biomarker.
I do not deny the interplay between body and mind, but depression and anxiety can be reduced with exercise whilst ME/CFS can be exacerbated. Unless we learn to recognise the difference, progress will not be made.
The burden of illness should be recorded and epidemiological data collected to drive scientific and biomedical research. Some experienced ME/CFS clinicians are convinced that many long COVID patients are suffering from ME/CFS.
However, not all long COVID patients fit the diagnostic criteria for ME/CFS and worse, there is widespread ignorance that ME/CFS is psychological, such that many who are anxious and depressed at this stage could be mislabelled as having ME/CFS.
Do long COVID and ME/CFS patients think they have the same disease?
There are reservations on both sides. Long COVID patients do not want their disease to be misjudged, underestimated, or ignored.
Healthcare professionals with long COVID seem the most reticent that long COVID and ME/CFS are conflated. This is particularly the case for those who were taught the outdated biopsychosocial narrative for ME/CFS, they know exercise and psychotherapy are not the answer.
ME/CFS patients think their lived experience of real, debilitating, chronic, complex disease could be a great source of support. After a diagnosis ME/CFS and long COVID patients all require appropriate support from their GP, employer, family and friends. They need regular review and may develop other comorbidities.
This debate has implications for guidelines, funding, government, policy and practice. Many healthcare professionals with long COVID have struggled to resume full time work. These reports are the tip of the iceberg, patients who ignore symptoms and push through may get worse.
The peak of bedbound and housebound patients could hit at around 2-5 years, others may deteriorate over decades. The mean duration of ME/CFS in children and young people is five years but in adults as few as 5% are estimated to make a full recovery.
Early intervention
Early advice to rest has been shown to reduce the future burden on work rehabilitation and medical retirement. ME/CFS is already estimated to cost the UK economy £3.3 billion per year, can we afford to add thousands of long COVID patients to the millions already missing?
When long COVID patients report that the harder they push to get better, the more their bodies fail them, we must listen and take note. Fatigue, pain, sleep disturbance and brain fog are debilitating and have a major impact on quality of life.
Exercise has the potential to exacerbate symptoms and may inhibit cellular energy delivery. NICE has wisely advised caution against using graded exercise therapy for post COVID patients.
Objective assessments for orthostatic intolerance, neuroinflammation, altered cellular bioenergetics, grip strength and cardiopulmonary exercise testing (CPET) should be part of rehabilitation assessment. Repeat CPET may indicate if exercise is making patients better, or worse.
Long COVID and ME/CFS are complex and heterogeneous. Both need greater recognition and research. The worst outcome would be to ignore or dismiss both. There is a pressing need for better education so that we can take the right approach and avoid causing patients harm.
The ME Association
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