Guardian: The NHS must learn from its mistakes with other post-viral conditions such as ME/CFS – more research is vital

The Guardian, George Monbiot, 21 January 2021

George Monbiot spoke with Dr Charles Shepherd (Hon. Medical Adviser to the ME Association) before publishing a very good article (below) about the lessons that should be learnt from ME/CFS for those now suffering from Post or Long-Covid.

Guardian Opinion

We’re about to see a wave of long Covid. When will ministers take it seriously?

Extracts:

George Monbiot

Long Covid is shorthand for a range of conditions. Some scientists divide them into three broad categories, others into four. Of these, one seems to ring a bell.

It’s a cluster of symptoms that bear a strong similarity to myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS).

This is a devastating condition that affects roughly a quarter of a million people in the UK, and is often caused, like long Covid, by viral infection.

Among the common symptoms of ME/CFS are extreme fatigue that is not relieved by rest, and “post-exertional malaise”: even mild physical or mental effort can make patients extremely unwell.

Many sufferers are confined to their home or even their bed, with their working life, social life and family life truncated. There is, so far, no diagnostic test and no cure.

“A study published in the journal Plos One found that, of the 20 conditions it assessed, including lung cancer, stroke, MS and schizophrenia, patients with ME/CFS reported the lowest health-related quality of life.”

Yet ME/CFS has been disgracefully neglected by science and medicine. A paper published in the British Medical Journal in 1970, and widely reported in the press, set the tone for scientific inquiry across much of the following 50 years.

It dismissed outbreaks of the disease as either “mass hysteria” or misdiagnosis. The researchers failed to assess a single patient or interview a single doctor. Their conclusions were largely based on one observation: that the syndrome affected more women than men. Therefore, they reasoned, it was likely to be psychosomatic.

In other words, this wasn’t science but misogyny. In the 1990s, the condition was characterised by some doctors as a “belief” and a “pseudo-disease”. Patients were dismissed in the media as malingerers, their illness characterised as “yuppie flu”.

A Post-Viral Tsunami

A recent study shows that diseases mostly afflicting women tend to receive less funding than those mostly affecting men.

Scientific effort is also, to a large extent, a function of the effectiveness of patients’ campaigns. One of the cruel paradoxes of the condition is that the extreme fatigue it causes undermines patients’ ability to mobilise for better treatment.

A study by the ME Association reveals that over 10 years, only £10m was spent in the UK on researching this syndrome: £40 per patient. By comparison, epilepsy research received £200 per patient, rheumatoid arthritis £320, and multiple sclerosis £800. 

Even today, some doctors refuse to believe sufferers, dismiss their symptoms or prescribe disproven and harmful treatments.

For some sufferers, the condition is a “living death”. The testimony of people who have written to me is heartbreaking.

“Ill for over 15 years now and have lost marriage, career, friends.”

“Ended up bedridden age 22 and have been tube-fed with care from 2004 until present day.”

“My son has been in bed for 10 years.”

“My dad’s 30- year-long struggle … has robbed him of what should have been the best years of his life.”

“The worst thing was being sent to a psychiatrist because I wasn’t believed.”

“My mother was regularly told she was mad, barmy, not in her right mind.”

“Every doctor’s appointment is a battle.”

“The fight for benefits was harrowing and nearly broke me.”

“Nobody could’ve prepared me for the lack of interest, the abuse and neglect from the medical, scientific and political world.”

Now many thousands more could be afflicted, in what one professor of medicine calls “a post-viral tsunami”.

Some things are improving…

Some things are improving. The government has funded a big genetics study called DecodeME. It needs 20,000 participants. The health standards body, NICE, has updated its clinical guidelines.

If one good thing emerges from this pandemic, it could be more recognition and funding for people with ME/CFS.

This must begin – and it’s amazing that in 2021, it still needs to be said – with doctors listening to patients and taking them seriously. Treatments should be based on empirical findings rather than old, discredited ideas.

The NHS is now setting up specialist clinics to treat long Covid. But already, apparent mistakes are being made. Without the necessary caveats, the NHS recommends steadily increasing levels of exercise for people suffering from post-Covid fatigue.

But as ME/CFS patients with post-exertional malaise know, this prescription, though it sounds intuitive, could be highly damaging.

“We need massive research programmes into both long Covid and ME/CFS, coupled with better information for doctors. But above all, we need something that currently seems a long way off. A government that gives a damn.”

George Monbiot

The ME Association

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