We need to stop quibbling over guidelines and treat patients on a case by case basis
Dr Charles Shepherd comments on the article:
“There are many parts of this article from Dr Phil Hammond, whom I know is a kind, caring and supportive clinician, that I would agree with. The most important quote comes right at the end and is a statement in support of the final draft guideline. It demolishes the claim that secondary care services are either unable or unwilling to work with the new NICE guideline.”
Dr Phil Hammond:
“We all need to grow up, work together and embrace differences of opinion and strategy. More research and better services are clearly needed… Let’s start by publishing the NICE guidance, even if we don’t all agree on all of it.
“What we do agree on is that this is a real, deeply unpleasant physical illness that blights the lives of many, and long Covid makes better research and treatments an urgent priority.”
Introduction
The publication of guidelines by the National Institute of Health and Care Excellence (NICE) should be a time of hope, and perhaps excitement. We need to know what the best available treatments for any disease are based on meticulous analysis of the evidence from trials and patient testimonies.
The most recent guidance for ME/CFS — myalgic encephalomyelitis and chronic fatigue syndrome, my medical specialism — was published 14 years ago.
We were due an update last week. It should have been timely — not just for the 250,000 people in the UK suffering the illness, but the million people with the disabling and strikingly similar symptoms of long Covid.
Alas, NICE paused publication, explaining it had “not been able to produce a guideline that is supported by all”. This suggests patients and professionals don’t all agree. So what next?
I have worked with young people (19 and under) with ME/CFS for a decade. ME/CFS has been marginalised, dismissed, under-resourced and under-researched. For a condition that can cause more disability and distress than any other physical illness, it seems extraordinary that we do not yet have a definitive diagnostic test nor proven drug treatments.
There are no known cures, but all hope is not lost. Some of my patients make a recovery. However, some children and more adults don’t recover, and are poorly served by science and the NHS.
Extracts
So how do you manage a specialist service in the face of such uncertainty? In such a poorly understood condition, the best approach is to tailor support and rehabilitation to the individual…
We admit there is much we don’t know, while acknowledging their condition is real and unpleasant, which the WHO, controversially to some, classifies as a neurological disorder…
Unsurprisingly, about a third of young people we see suffer from significant anxiety or depression. Psychological distress is not the cause of their condition, but it is too often the consequence. Many find the psychological support we offer them extremely helpful, even if it is not a cure…
Many, but not all, of the young people we see describe a viral infection, or series of infections, as the trigger. They develop long-term debilitating and persistent fatigue, and a host of other unpleasant symptoms and signs that makes a single label inadequate…
We’ve known for years that viruses such as Epstein-Barr, which causes glandular fever, can cause long-term disability in susceptible children and adults…
In the absence of proven drug treatments, we try to restore routine into young people’s lives, not always successfully. The key is to try to establish a regular sleep pattern and to try not to do too much activity that tips you into post-exertional malaise…
With such a heterogenous group in terms of cause, severity and recovery, it’s difficult for Nice to come up with guidelines that capture all this variety and a one-size-fits-all treatment plan. So let’s just admit and accept that…
“Graded exercise therapy” — one of Nice’s sticking points — as described by some patients may sound awful, but it’s not something I recognise. The use of cognitive behavioural therapy was also a dividing issue, but, likewise, psychologists help some young people hugely.”
Dr Phil Hammond
We all need to grow up, work together and embrace differences of opinion and strategy. More research and better services are clearly needed… Let’s start by publishing the Nice guidance, even if we don’t all agree on all of it. What we do agree on is that this is a real, deeply unpleasant physical illness that blights the lives of many, and long Covid makes better research and treatments an urgent priority.
Dr Phil Hammond is an NHS associate specialist in paediatric ME and CFS. His analysis of the pandemic, Dr Hammond’s Covid Casebook, is published by Private Eye books. Dr Phil’s Bedside Manner starts on Radio 4 on Thursday.