Re: Long covid: doctors must assess and investigate patients properly
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.
COVID-19 can leave emboli, pulmonary fibrosis, organ damage and myocarditis in its wake. Many ‘long-haulers’ are struggling at home and still recording symptoms without a diagnosis or prognosis. Their acute COVID experience may have ranged from mild to severe, but they have not felt better after the expected twelve-day average. This heterogenous group are presenting with multiple symptoms: fatigue, headaches, ‘lung burn’, sore throats, chest pains, irritable bowel, night sweats, rashes, brain fog, muscle, bone and joint pains, changing sleep, palpitations, burning skin, dizziness, tingling, tinnitus, difficulty concentrating - the list goes on. Days have turned to weeks, and weeks have turned to months. Will months turn to years, or years to decades?
A subset of ‘chronic COVID-19’ patients do not have familiar organic pathology to explain their symptoms, they know their experience is not imagined, nor secondary to anxiety. Fit individuals walk or exercise, yet, on other days, struggle to climb the stairs or get out of bed. Symptoms flare in the hours or days after trivial physical, emotional, or cognitive effort. Many are still functioning at a fraction of their pre-COVID normal. Others fluctuate between recovery and relapse. Shockingly, some are facing difficulty being believed, or told their symptoms are secondary to anxiety or depression. The Royal College of GPs have produced a short module linking long COVID to anxiety and post-traumatic stress, but many long COVID patients would not be anxious if they felt well. There are calls for a new narrative. Are we on the verge of defining a new disease, or are many of these patients experiencing the reality of 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.
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 mislabeled 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 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.
Competing interests: I have no financial conflict of interest. I have provided expert testimony to NICE on education, information and support for healthcare professionals on ME/CFS and am chair of the CFS/ME education working group (CMRC) I am a member of Forward ME, I am a doctor working for the NHS and a patient with ME/CFS.