I was concerned to learn that the Royal College of Physicians maintains educational materials on ME/CFS for postgraduate medical students, given that in 2021 that organisation expressed support for outdated and harmful forms of ‘treatment’ for the condition. Hopefully the RCP has researched and learned more about ME/CFS since then. In any case I’ve put in a query through their website to learn more. Here’s the text of that query:
In the DHSC plan it is suggested that the RCP will produce new or updated materials on ME/CFS for postgraduate students by March 2024. Could you confirm if this is the case and if so, could you provide me with names and contact details of the people who are involved in preparing these materials.
The UK government’s Department for Health and Social Care (DHSC) has published its interim plan for ME/CFS, which is open for consultation until 4 October. Our response refers only to the ‘Attitudes and Education of Medical Professionals’ section of the plan. ME Research UK has published a fantastic response to the ‘Research’ section of the plan:
The ‘Attitudes and Education of Professionals’ section of the DHSC’s interim plan for ME/CFS:
⚬Recognizes the dismissive attitudes to ME/CFS held by many medical professionals, which is welcome.
⚬Seems to recognize that knowledge of ME/CFS should be required for every doctor, in every specialty and in every healthcare setting, which is very welcome.
⚬Under ‘Agreed Actions’, there is a plan for NHS England to develop an e-learning module on ME/CFS, but it is not clear that this training will be mandatory for all doctors. It absolutely must be.
⚬People with ME/CFS want the opportunity to speak with a doctor who specialises in their illness, and the NICE guidelines require this, yet few such doctors exist in the UK. This plan fails to include the creation of a training pathway to produce more of them.
⚬This plan fails to recognize medical harm which results from medical professionals’ poor knowledge of ME/CFS. This harm includes:
PEM is the unique and pathognomonic symptom of ME/CFS, meaning that if a person has PEM they have ME/CFS and vice versa. Some but not all long Covid patients experience PEM; these patients should be investigated for ME/CFS. (Long Covid and ME/CFS are not mutually exclusive; a person can have both.)
PEM is frequently misunderstood, even by healthcare professionals. It is a symptom that is also a collection of symptoms and a specific type of relapse. It is often confused with fatigue or normal post-exertional aches and strains, but PEM is completely unlike anything experienced by healthy people, or even by people with other serious medical conditions.
This video series Post-Exertional Malaise: Defining PEM/PESE, from the Bateman Horne Center, is packed with insights into PEM drawn from the BHC’s years of research and clinical work on the condition. It covers PEM’s definition, what we know about its pathophysiology, how it may be experienced by patients, and its use in research.
The logo of the Oxford University Hospitals NHS Foundation Trust.
A disturbing job advert has come to light which shows that outdated, unscientific and harmful attitudes to ME/CFS are still alive and well in the NHS. The ad, for the Oxford University NHS Foundation Trust, is for a clinical psychologist to divide their time between working with the ME/CFS Service and the Renal and Transplant Medicine service.
ME/CFS is a serious multisystem illness. Research has shown those living with the condition have pathologically abnormal neurological and cardiovascular functioning, immune abnormalities, and reduced capacity for aerobic ATP production. Its unique and pathognomonic symptom is post-exertional malaise (PEM), also called post-exertional symptom exacerbation (PESE). Symptomatically PEM looks like a relapse, triggered by (often apparently mild) physical, cognitive or social exertion or sensory stimulation, with a delay of usually 24-48 hours, and lasting for days, weeks, or longer. Physiologically, PEM is characterized by altered gene expression, a lowered anaerobic threshold, and a reduction in VO2max, which measures the body’s capacity to take in and utilize oxygen.
There is an older view of ME/CFS (or ‘chronic fatigue syndrome’ as it was called) which held that the condition was essentially psychosomatic, caused by ‘false illness beliefs’; essentially, in this view, people with ME/CFS were mentally ill. While scientifically discredited, this view still looms large in the popular imagination, to the detriment of patients, who may face stigma and blame from loved ones, and a lack of understanding from their schools or workplaces.
Shockingly, it seems that these outdated attitudes are still alive and well among the healthcare professionals working at the Oxford University NHS Foundation Trust.
In honour of Severe ME Day (8 August) Dr. Nina Muirhead of Doctors with ME has teamed up with Learna to offer new educational content on severe ME/CFS. 25% of people with ME/CFS have the severe form of the illness. They are profoundly ill and have complex care needs, yet few healthcare professionals receive training on how to help them. The short module allows doctors, nurses and other professionals to increase their knowledge. It is worth 0.5 CPD credits.
Shockingly, most doctors receive no training at all on ME/CFS. As a result, many continue to believe (wrongly) that the condition is minor, self-resolving, psychological in nature, or simply made up. Acting on these beliefs, they dismiss their patients’ very real and very serious symptoms; mistakenly assume the symptoms are due to depression, anxiety or stress; fail to provide prompt diagnosis; and give dangerous advice to exercise and ‘push through’ – advice which is likely to provoke repeated bouts of post-exertional malaise, which in turn is associated with a permanent worsening of illness severity.
This post was updated on 16 July 2023 to say that many of the authors of the JNNP article are psychiatrists – the original version incorrectly stated that all of them are.
The prestigious British Medical Journal (BMJ) has published an article which profoundly misrepresents the state of scientific knowledge on ME/CFS.
The article, ME/CFS: Researchers question credibility of NICE guidance, highlights the views of a group of forty-nine psychiatrists who believe that NICE’s guidance on ME/CFS is flawed. The NICE guidance warns that exercise can be harmful to people with ME/CFS. However the group argue that this does not accurately represent the best scientific evidence.
Exercise: it’s good for nearly everyone, but can be harmful for people with ME/CFS or long Covid. Photo: Cliff Booth/Pexels.(more…)
The Medical Schools Council represents the UK medical schools and shapes the future of medical education in the UK. We’ve reached out to the MSC, urging them to drive forward the development of excellent ME/CFS training for undergraduate medical students, and letting them know about some fantastic experts and resources. Here’s the letter we sent (contact details of individuals have been removed) – we’ll post an update with any response we receive.
Subject: Request for information on the development ME/CFS medical education for undergraduate medical students
Hello,
I’m writing to ask you to share, in detail, what actions the Medical Schools’ Council is taking to ensure the development of excellent training on ME/CFS for undergraduate medical students across the UK.
I recently contacted the GMC (General Medical Council) to raise a concern: their MLA (Medical Licensing Assessment) content map refers to ‘chronic fatigue syndrome’ and not ‘myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)’.
The MLA is an exam that all final-year undergraduate medical students in the UK will have to complete starting in the 2024/2025 academic year. Its purpose is to ensure that all new doctors will share a common base of knowledge and skills. The MLA content map is a list of topics that they will be examined on.
I wrote:
I’m writing to let you know that the term ‘chronic fatigue syndrome’ used in the MLA content map should be replaced by ‘myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)’, as used in the NICE guidance (https://www.nice.org.uk/guidance/ng206). The term ‘chronic fatigue syndrome’ is outdated, is associated with the now-discredited psychogenic theory of the condition, and is considered by the ME patient community to be stigmatizing.
A Graduate Policy Adviser at the GMC replied:
We aren’t making any changes to the MLA content map currently. However, when we next review and update the content map, we will take into account your suggestion. We will be in touch nearer to the time of the review with more information.
I spoke with Sarah Boothby over zoom on 19 May, 2023. Our discussion was wide-ranging, and I’ve cut down and rearranged what was said for length and clarity. Maeve’s story is profoundly upsetting, and discretion is advised.
Maeve Boothby-O’Neil. I requested a photo and received this with the note: “She did not want to be remembered for being ill. She was a writer with a talent for languages.” Photo: Sarah Boothby.
How old was Maeve when she first got ill with ME? How did it affect her life?
Maeve was 12 when we both had the same virus in the spring of 2006. I recovered fully. Maeve slowly developed ME.
She was an A* student. A natural scholar who loved to learn and did not miss school, but she was given a reduced timetable and they asked her to sit out of PE lessons because she would collapse. By the time the diagnosis was confirmed she had left school with three A Levels and five AS Levels.
She could not progress to university but continued to teach herself -Hebrew, Irish, Italian, economics, philosophy, creative writing and everything she could learn about the biomechanisms of ME until the illness became very severe in 2020.
People with ME often face a long and difficult journey to get a diagnosis. Was that the case for Maeve?
Yes. Once she got ill she began seeing a paediatrician, who told her there was nothing wrong with her. That went on for two years. Then we moved two counties to get a diagnosis from an NHS centre of excellence in Bristol, and had to wait nine months for confirmation of the diagnosis.
You moved house in order to receive better medical care for Maeve?
Yes, there was nothing for her where we were. As she became more severe she saw countless healthcare professionals in hospital and in the community after needing more help to live than her mum alone could provide.
Over time Maeve’s ME became very severe. What did life with severe ME look like for her?
She had to rest after every activity. When she got washed, she had to lie down afterwards. Then she’d get dressed, then lie down again. Eat a meal, lie down. She couldn’t see her friends and family. She couldn’t leave the house without somebody to help her into and out of the vehicle. She had to pace medical appointments to avoid PEM. You can’t travel. You only have thirty minutes in a day to do anything.
ME/CFS Medical Education Campaign 