The latest issue of Private Eye has an article from Dr Phil Hammond on how the experience of treating people with ME/CFS can inform how to best approach those with Long COVID. There are quotes from Dr Muirhead & Dr Marsh. Extracts are shown below.
Initially, (NICE Long COVID definition) listed a short number of associated symptoms (shortness of breath, severe fatigue, brain fog, and heart and lung conditions). Now research in the Lancet journal EClinicalMedicine has listed up to 200 symptoms affecting every bodily system. There are chronic inflammatory, immunological and neurological disorders emerging which, as with ME/CFS we have no idea how to treat.
A virus doesn't distinguish between mind and body, and neither should we. No chronic illness is ever all in the mind or all in the body; they are interwoven.
WITHOUT kindness, understanding and acknowledgement, a treatment is unlikely to work. But a kind and well-meaning professional can still do plenty of damage if research hasn't been carried out to ascertain the risks and benefits of what's on offer.
THE NHS can't cope with 2m face-to-face long Covid assessments so it has a website, optimistically called www.yourcovidrecovery.nhs.uk, whose “Getting Moving Again” section states: “After a period of illness and inactivity, your muscles will be much weaker than normal and you will certainly be less fit than you were. It is important to get back to your previous level Of activity or possibly aim to be more active!” This may be good advice for some, but if you have post-exertional malaise (PEM), this could harm you and send you into relapse.
My GP got it completely right. It was nothing to do with what she did or didn't say, it was the look in her eyes that said believe the horror you must be going through and I believe you are ill and I know you need care.
I was asked to keep increasing my exercise and it made me worse. The people in clinic were genuinely wanting to help but their advice to do an extra 250 steps per week – something I only managed for two weeks – made me the worst I had been for six months.DR NINA MUIRHEAD
It is my belief that appropriate rest initially and subsequent careful pacing can allow recovery in those who can then increase activity later.Dr Ben Marsh, a neuro-disability paediatrician who has ME
However, some people don't recover or improve even when they have been very careful. We don't yet know why. It could be genetic, auto-immune or mitochondrial.
POST-exertional malaise can happen with ME and long Covid. NICE defines it as “the worsening of symptoms that can follow minimal cognitive, physical, emotional or social activity, or activity that could previously be tolerated. Symptoms can typically worsen 12 to 48 hours after activity and last for days or even weeks.” If this has happened to you, try to avoid it by careful planning, plenty of rest and learning
to say no.