I am writing to express my appreciation for George Monbiot’s insightful article (‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal, 12 March). I have been living with severe fatigue for over three years after a mild Covid infection. It’s hard to describe what it’s like and it’s not surprising that it’s not well understood. My experience is that it is necessary to overcome my instincts to push myself, as the depletion of energy results in even more limited stamina over weeks or months.
It must appear to others that I am not constantly exhausted or pushing myself. But if I give in to the urge to do more, I push myself back into a state of self-perpetuating exhaustion, where my expectation of what I can accomplish lags behind my dwindling stamina.
I can’t measure how much energy I used, especially cognitively. And I cannot measure how exhausted I am without reaching a state where actions such as reading or speaking become difficult, a state from which it is difficult to recover. All wake-up time uses energy, and any overexertion can have consequences days into the future, making it unclear about cause and effect.
NHS help is limited to advice on how to pace myself. I had a work capacity assessment for universal credit and was struggling to speak at the end of a 40 minute call. I was amazed when I was found fit for work. I was able to have this finding overturned by the tribunal, but the experience was harrowing and sapped my energy for months.
I expect a physiological cause and treatment will eventually be found, but in the meantime our health and welfare systems need to be updated to support those living with chronic fatigue.
Ewen Tanner
Yeaveley, Derbyshire
As the mother of a 33-year-old woman who has had ME/CFS since contracting a virus at 15, the attitudes of the medical profession in this article were all too apparent in our experience. At the time I was told to get her into school – it made her 10 times worse. As little as five years ago, she was pushed down the path of “exercise and psychological solutions” by the hospital – a boxing exercise. When the pandemic hit, the first thing we told each other was that there would be a huge increase in ME/CFS. There was, but it’s been called Covid for a long time. It is our fervent hope that the research taking place will also look into ME/CFS and help the thousands of people who have had their lives ruined by this misunderstood condition.
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As a recovered ME/CFS patient, I agree with every word of George Monbiot’s article. But he omitted the next step to a correct diagnosis: effective treatment. I recovered by taking sertraline (an antidepressant) as part of a small 1990 trial at the Royal Free Hospital in London. Our mental states were assessed when we entered the trial; neither of us was depressed. No one knew why sertraline worked. Later it was found that ME patients cannot get deep sleep, but sertraline gave them back that sleep. No other trials with sertraline appear to have taken place, presumably because of the medical establishment’s attitude.
Cynthia Floud
Haddenham, Buckinghamshire
George Monbiot has written an excellent critique of why the medical profession continues to fail to provide proper care for people with ME/CFS. Although we now have a new guideline of the National Institute for Health and Care Excellence (Nice) which recognizes ME/CFS is a real and disabling condition, there has been disappointing progress in implementing the most important recommendations.
Nice recommends that a diagnosis should be made at three months from the onset of symptoms. But many people wait a year or more for a diagnosis. Very few existing specialist referral services are able to offer the type of multidisciplinary care recommended by Nice, and services for the 25% of people who are severely affected are not prioritised.
Access to specialist care in England remains unclear and non-existent in Scotland, Wales and Northern Ireland. Children with ME/CFS continue to be threatened with inappropriate childcare proceedings. For a condition that costs the country approx £3.5 billion a year and affecting at least 250,000 people, the government’s investment in research and management has been pitiful. This neglect, based on what is now discredited science, can no longer continue.
Dr Charles Shepherd
Honorary Medical Adviser, ME Association
I was depressed but not surprised by the article. I worked as a GP for 34 years until I retired and looked after a number of patients with CFS. Several switched to my list because their previous GP felt their symptoms were purely psychological. I felt that they had significant physical symptoms of fatigue that affected their health, as well as a psychological response to the impact of this on their daily lives. They often gave a clear history of being under a period of prolonged past stress, when they contracted an unpleasant viral infection, especially glandular fever, and were unable to recover.
One of the few good things that has come out of the pandemic is that there is a greater awareness that a viral infection can lead to prolonged Covid, the symptoms of which are very similar to CFS. There is research going on now about long covid and I sincerely hope that it can also help people with CFS.
Dr Ros Kennedy
Bristol
If people who have recovered from chronic fatigue conditions (ME in one case and long Covid in the other), we share George Monbiot’s frustration. Yet he demonstrates his own lack of understanding by lashing out at a school of thought supported by scientists who believe the condition is a complex interplay between the biological and the psychological.
The target of most of his anger is the claim that, for some patients, the physiological response can become dysfunctional and fear, including the belief that they will never recover, drives this vicious cycle. The interplay between the brain, beliefs, perception and hormonal and neuronal changes affects many body functions, and can be responsible for the debilitating symptoms. We need scientists to keep investigating these conditions. An appreciation that this biological disease can be influenced by unconscious expectations can help patients like us get the right help, which includes appropriate psychological strategies.
Fiona Symington Oxford
Paul Garner Emeritus Professor of Infectious Diseases, Liverpool School of Tropical Medicine
George Monbiot seems to confuse the doctor attending to a patient’s fears and emotions with dismissing their illness as somehow “unreal”. I suggest that such a view is ill-informed and likely to be unhelpful to patients with any disease.
Prof. Michael Sharpe
Department of Psychiatry, University of Oxford
