Why ME/CFS is still so poorly researched and treated | Letters

I’m writing to express my appreciation for George Monbiot’s astute article (‘You Don’t Want to Get Better’: Outdated Treatment of ME/CFS Patients Is a National Scandal, March 12). I have been living with severe fatigue for over three years due to a mild Covid infection. It’s hard to describe what it’s like and unsurprisingly it’s not well understood. In my experience, it is necessary to overcome my instincts to push myself, as a lack of energy results in even more limited endurance over the course of weeks or months.

It should appear to others that I am not constantly exhausted or putting pressure on myself. But when I give in to the instinct to do more, I push myself back into a state of self-perpetuating exhaustion, where my expectations of what I can handle lag behind my dwindling endurance.

I can’t measure how much energy I’ve expended, especially cognitively. And I can’t measure how exhausted I am without reaching a state where actions like reading or talking become difficult, a state from which it is difficult to recover. Every waking moment takes energy, and any overexertion can have consequences for days into the future, making it unclear what the cause and the effect are.

NHS help has been limited to advice on how to walk on my own. I had a disability assessment for universal credit and was struggling to speak at the end of a 40 minute phone call. I was surprised when it turned out that I was suitable for work. I was able to have this finding overturned by the tribunal, but the experience was harrowing and drained my energy for months.

I expect that a physiological cause and treatment will eventually be found, but in the meantime our health and wellbeing systems need to be updated to support people 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 age 15, the views of the medical profession in this article were all too clear in our experience. At the time I was told to ‘get her to school’ – it made her ten times worse. Less than five years ago, the hospital pushed her down the path of ‘exercises and psychological solutions’ – an exercise that checked off the boxes. When the pandemic hit, the first thing we said to each other was that there would be a huge increase in ME/CFS. It has been, but it’s called long Covid. It is our fervent hope that the research now taking place will also look into ME/CFS and help the thousands of people who have had their lives destroyed by this misunderstood condition.
Name and address provided

As an ME/CFS patient who has recovered, I agree with every word of George Monbiot’s article. But he neglected the next step after 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 as we began the process; none of us were depressed. No one knew why sertraline worked. It was later discovered that ME patients cannot get deep sleep, but sertraline gave them that sleep back. No other studies with sertraline appear to have taken place, probably because of the attitude of the medical community.
Cynthia Floud
Haddenham, Buckinghamshire

George Monbiot has written an excellent critique of why the medical profession continues to fail to provide proper care to people with ME/CFS. Although we now have a new directive from the National Institute for Health and Care Excellence (Nice), which recognizes that ME/CFS is a real and debilitating condition, there has been disappointing progress in implementing key recommendations.

Nice recommends that a diagnosis be made three months after the onset of symptoms. But many people wait a year or more for a diagnosis. Very few existing specialist referral services are able to provide the kind of multidisciplinary care that Nice recommends, and services for the 25% of people who are seriously affected are not prioritised.

Access to specialist care in England remains patchy and non-existent in Scotland, Wales and Northern Ireland. Children with ME/CFS are still threatened with inappropriate childcare procedures. For a condition that costs the country approximately £3.5 billion per year and affects at least 250,000 people, government investment in research and management has been abysmal. This neglect, based on what is now discredited science, cannot continue any longer.
Doctor Charles Shepherd
Honorary medical advisor ME Association

I was depressed, but not surprised by the article. I worked as a general practitioner for 34 years until I retired and cared for a number of patients with CFS. Several had switched to my list because their previous GP felt their symptoms were purely psychological. I felt that they had significant physical symptoms of fatigue affecting their health, as well as a psychological response to the impact of this on their daily lives. They often stated clearly that they had gone through a period of prolonged stress, then contracted an unpleasant viral infection, specifically glandular fever, and failed to recover.

One of the few good things to come out of the pandemic is that there is a greater awareness that a viral infection can lead to long-term Covid-19, the symptoms of which are very similar to those of CFS. Research is now being done into long Covid and I sincerely hope it can help people with CFS too.
Dr. Ros Kennedy
Bristol

Because people who have recovered from chronic fatigue (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 ire is the claim that in some patients the physiological response can become dysfunctional and fear, including the belief that they will never recover, fuels this vicious cycle. The interplay between the brain, beliefs, perception and hormonal and neuronal changes affects many bodily functions and may explain the debilitating symptoms. We need scientists to continue researching these conditions. Understanding that this biological disease can be influenced by unconscious expectations can help patients like us get the right help, including 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 paying attention to a patient’s fears and emotions with dismissing the disease as somehow “unreal.” I think such a view is ill-informed and unlikely to be helpful to patients with any disease.
Professor Michael Sharpe
Department of Psychiatry, University of Oxford