[CFS-L] NICE have paused the publication of the ME/CFS guideline: Sunday Times (full text)

[Dr. Marc-Alexander Fluks]

Source: The Sunday Times
Date: August 22, 2021
Author: Phil Hammond
URL:
https://www.thetimes.co.uk/article/if-we-cant-agree-on-me-weve-got-no-chance-against-long-covid-v7s9hg9dr


If we can't agree on ME, we've got no chance against long Covid
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We need to stop quibbling over guidelines and treat patients on a case
by case basis

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.

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. At our clinic,
we allow young patients to take rest breaks during a 90-minute initial
consultation, and give them time and space to tell us about their
illness and how it has affected their life, what matters most to them
and what they hope to get out of treatment.

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. Many people have been
suffering for months before we see them, and we praise their bravery and
fortitude. School and family support is crucial, and often mum gives up
her job to care for her child. Severely affected children can be
housebound and bedbound.

Most young people with ME/CFS miss substantial amounts of school, or
cannot attend at all, and miss out on social and sporting activities.
They can feel isolated, alone and unbelieved. 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.
These can include severe sleep disturbance, widespread musculoskeletal
pains, headaches, abdominal pains, painful lymph nodes, recurrent sore
throats, cognitive dysfunction and brain fog, temperature dysregulation,
dizziness and postural hypotension, nausea, palpitations and sensitivity
to light, noise and touch.

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. We are experimenting with letting many children catch the
Sars-CoV-2 virus naturally in the Delta wave, in the hope that the
burden of long Covid or ME/CFS that results is not too great. I think
this is unwise and we should at least offer children and parents the
choice of vaccines that have been approved for use in their age group.

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. A nutritious diet - small
amounts and often - rehydration and regular est are important.

Sometimes nothing seems to work, and sometimes those with severe
symptoms make a surprising and complete recovery in time. Some have
milder symptoms but never fully recover and reach a plateau where they
remain for a long time. Others appear to recover but have flare-ups
later. 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.

We all need to grow up, work together and embrace differences of opinion
and strategy. More research and better services are clearly needed. I
have met people with ME/CFS who are desperate for answers and experiment
with low-dose naltrexone, anti-virals, acupuncture, mitochondrial
supplements, nutritional supplements, yoga, meditation, mindfulness,
solution-focused hypnotherapy, the Lightning Process, the Perrin
technique, an anti-inflammatory diet, cold showers and more. We need to
know if any of these work, and in what circumstances. 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.

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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

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