'We Are In The Dark': Despair For ME Patients As Doctors Can't Agree On Treatment

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However, due to a backlash from other medical groups, NICE has withdrawn its guidance, which included advising doctors to stop administering a controversial therapy.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people with anxiety – is not a cure for ME, as reported by The Guardian, which saw the recommendations before it was withdrawn.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.

The Nice guidance included advice saying CBT isn't curative of ME
RichLegg via Getty Images
The Nice guidance included advice saying CBT isn't curative of 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“The document removes support for therapies driven by outdated views regarding treatment for ME which are no longer supported by the science.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.