[CFS-L] NICE have paused the publication of the ME/CFS guideline: Huffington Post

[Dr. Marc-Alexander Fluks]

Source: Huffington Post
Date: August 18, 2021
Author: Faima Bakar
URL:
https://www.huffingtonpost.co.uk/entry/doctors-disagree-over-me-treatment_uk_611cccd7e4b0c696810328fd


'We are in the dark': Despair for ME patients as doctors can't agree
On Treatment
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NICE was due to publish guidance, but it has been paused due to
backlash.

People with ME, otherwise known as chronic fatigue syndrome, are still
waiting for doctors to agree on the best way to treat the condition. ME,
which stands for myalgic encephalomyelitis, is a little understood
condition characterised by extreme tiredness, muscle and join pain,
brain fog and sleeping problems.

For years, patients and charities have been calling on healthcare
professionals to recognise ME as a medical illness rather than a
psychological problem and the National Institute for Health and Care
Excellence (NICE) was due to publish long-awaited landmark guidance.
However, due to a backlash from other medical groups, NICE has withdrawn
its guidance, which included advising doctors to stop administering a
controversial therapy.

The contested therapy - graded exercise therapy (GET) - includes
increasing exercise bit by bit to build tolerance. But opposers say this
treatment supposes those with ME have symptoms due to being inactive.

The new guidance would also have included advice saying CBT - a
behavioural therapy often used for people with anxiety - is not a cure
for ME, as reported by The Guardian, which saw the recommendations
before it was withdrawn.

Patient groups agree with the NICE recommendations, saying these
therapies have left some patients feeling worse than before. However,
scientists and medical groups say otherwise, arguing that GET and CBT
are the only evidence-based treatments for ME. Several ME charities
including Forward ME, Action for ME, ME Association, Doctors for ME and
ME Research UK said in a joint statement: 'Many medical professionals,
researchers and patient representatives have spent three years
diligently reviewing and assessing the evidence. The document has been
approved by the committee and should be published. 'The document removes
support for therapies driven by outdated views regarding treatment for
ME which are no longer supported by the science. We understand these new
guidelines may take time to become accepted by elements of the medical
community, but they should not be delayed.'

Sonya Chowdhury, from Action for ME, added: 'We are in the dark about
this. The NICE committee has worked hard to produce balanced guidelines
which reflect science and best medical practice. Nobody should be able
to undermine that.'

However, Dr Alastair Miller, a consultant physician in infectious
disease and internal medicine and a former principal medical adviser for
Action for ME, pointed out that 'without CBT and GET, there is nothing'.
He said: 'It is difficult to say where we go from here. The draft
guidelines were predicted to stop the use of GET and limit the use of
CBT, which have served most chronic fatigue syndrome/ME clinicians and
patients well for many years and were endorsed by the Nice guidelines in
2007. Most NHS clinicians use GET and CBT and have done so for a long
time. Importantly, without CBT and GET, there is nothing. No new
therapies or approaches have emerged since 2007, so in practice one
needs to question whether there was ever a requirement to have a new
guideline. If the professional bodies that represent those who care for
these individuals were not prepared to support the guideline, this may
have made Nice think again. It is difficult to say where we go from
here.'

No new date has been given on when the guidance may be published.

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