The DecodeME Genetics Study: Letters to The Times

The Times Letters to the Editor, 25 and 26 June 2020.

Times letters: Research into chronic fatigue syndrome

WRITE TO LETTERS@THETIMES.CO.UK Thursday June 25 2020, 12.01am.

“Sir, It is excellent news that £3.2 million is now being put towards a project by British scientists to try to understand ME, otherwise known as chronic fatigue syndrome (“Search for genetic clues to ME”, Jun 23).

“When I was health secretary I met families devastated by the onset of a disease that was sometimes dismissed as being a fabrication. It is to the credit of Dame Sally Davies, who was then the chief medical officer, that she took the concerns of such families seriously and started a process that led to this announcement.

“This reminds me that in medicine and science it is often as important to be honest about what you don’t know as it is to be certain of what you do know — something that is extremely relevant as we fight a novel coronavirus.”

Jeremy Hunt, MP
Chairman, health select committee; health secretary 2012-18

“Sir, Having worked 30 years ago to get a child with ME released from a locked psychiatric unit where he had been consigned as a ward of court, I had hoped that this cruel treatment had been outlawed long ago.

“How shocking that it still goes on. From personal experience I know the agony of being the parent of a child with ME, so to intensify a family’s suffering by accusing them of child abuse (report, Jun 24) is inexcusable.

“This illness should never have been the province of psychiatrists, and “graded exercise”, the treatment offered by them, usually exacerbates the fatigue.”

Esther Rantzen
London NW3

“Sir, As someone who has been severely disabled by ME for nearly 30 years I welcome your positive coverage of this illness or group of illnesses.

“However, your leading article (“Chronic Condition”, Jun 24) was somewhat misleading in stating “as recently as 2011 the NHS was recommending that ME be treated with cognitive behavioural therapy (CBT) and exercise, thereby adding to the distress of sufferers by implicitly suggesting that it was a form of mental illness.”

“Unfortunately the NHS is still recommending these treatments, despite the mounting evidence that they do not work and may be harmful.

“The relevant guideline from the National Institute for Health and Care Excellence is being reviewed but the outcome remains uncertain.

“For me, the most distressing aspect of the CBT model of ME is that, with no reliable corroborating evidence, it instructs doctors and therapists to treat patients as though their illness is reversible by their own efforts.

“However an illness is classified, that is a cruel way to treat any patient if it is not true, particularly if the illness is made worse by exertion, as is the case with ME.”

Robert Saunders
Balcombe, W Sussex

“Sir, As the parent of an ME sufferer I was shocked by the comment at the end of Sean O’Neill’s article from the Royal College of Paediatrics and Child Health endorsing graded exercise therapy.

“There is a vast body of scientific evidence that shows that biological (specifically autonomic) dysfunction in ME precludes the use of exercise as a curative strategy.

“This is in addition to many years during which ME sufferers have protested in vain that graded exercise has bitterly exacerbated their symptoms, even to the extent that many have become bedridden, unable to tolerate noise, light or touch, and in constant pain.

“Only when the medical profession understands this, and removes graded exercise therapy from the Nice guidelines altogether, can ME patients hope to experience some understanding of their condition.”

Kathy Goodchild
St Albans

Times letters: Treatment for ME

WRITE TO LETTERS@THETIMES.CO.UK Friday June 26 2020, 12.01am.

Sir, I am glad there is to be more research into ME, a condition that has blighted my life, but am concerned that a lot of people want graded exercise therapy (GET) to be discontinued as a treatment (letters, Jun 25).

“I finally gained access to treatment in 2016, 15 years after the onset of symptoms. This treatment was primarily GET: within weeks I felt healthier and was sleeping better.

“Since treatment I have got myself to the point where I am able to work full-time for the first time in my life. That has the knock-on effect of solving my financial worries, thus further improving my health.

“Campaigning on ME is dominated by patient groups made up of people who did not respond well to treatment. Those, like me, who improve do not form groups, we move on with our lives.

“It horrifies me that someone else in my position might be denied the help they need because it does not work for everyone.”

Helen Nicholls
Woodford Green, Essex

“Sir, The announcement of £3.2 milion of funding for a genetic study into ME is a massive step forward but until there is proper recognition among healthcare professionals that ME is physiological not psychological, and that graded exercise is harmful, those living with ME will continue to suffer at the hands of some well-meaning healthcare professionals.”

Carol Monaghan, MP (SNP)
Chairwoman, all-party parliamentary group on ME
The DecodeME Study is scheduled to begin in September, with recruitment of participants from March 2021. Anyone with ME/CFS aged 16 years or over who wants to take part can register their interest now by visiting: www.decodeme.org.uk.

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