Blog
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Children with severe ME/CFS taken into custody
World-renowned paediatric ME/CFS specialist Dr Nigel Speight discusses a disturbing scenario: severely ill young people with ME/CFS and their families are persecuted by the healthcare professionals. This is a difficult video to watch, but it is incredibly important.
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Malnutrition and ME/CFS: the NHS is still getting it wrong.
This article was updated 13 February 2024.
It’s happening again.
The young woman was so weak she could barely tap out a few words from her hospital bed, but she wanted to let the outside world know what was happening to her. The doctors had decided to take away her NG tube. They’d decided her problems were psychological and she “needed to try eating a little food”.
This young woman does not suffer from anorexia nervosa. She has ME, a serious neuro-immune condition which has left her profoundly ill. She desperately wants to eat but she is too ill to hold down food; all she can manage is to swallow a bit of water each day. Without the NG tube she will starve.
This happens every few months or so. Last year it was 25-year-old Alice Barrett; Barrett’s severe ME left her able to swallow only a small amount of liquid food each day, so she became malnourished and needed tube feeding. Her family did everything they could to convince the hospital to provide the life-saving treatment, but their arguments fell on deaf ears. Undeterred, the family set up a petition which received over 10,000 signatures. There was a social media campaign and articles in the local press. This story has a happy ending: the publicity worked, and Alice was given a life-saving NG tube. But families shouldn’t have to campaign for their loved ones to receive medical treatment.
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Learn About ME essay competition for medical students studying in Scotland
Medical students studying in Scotland are invited to take part in the Learn About ME essay competition! The winner will receive £250, and the winning essay may be published in The Journal of the Royal College of Physicians of Edinburgh. To enter, students must:
• Complete the free one-hour CPD course on ME/CFS by Dr. Nina Muirhead, available at https://www.studyprn.com/p/chronic-fatigue-syndrome.
• Write an essay on the theme: “What is your most important learning point about ME/CFS?” with a maximum length of 500 words.
Full details of the competition at Action for ME.
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Might the NHS finally remove the harmful and outdated information on ME/CFS from its website?
NHS logo. The NHS website information page on ME/CFS has so many problems, it’s hard to know where to start. The overall picture it gives of the illness is trivialising – for instance it lists the main symptom as “extreme tiredness”, which is not an accurate reflection of this serious multisystem illness characterised by a profound lack of energy and intolerance to any and all forms of exertion. The phrase “you may find it very hard to do daily activities” does not do justice to a condition where 100% of sufferers are unable to keep up with the activities they did before they were ill, 75% are unable to work or attend school, and 25% are dependent on care. Even worse, cognitive behavioural therapy (CBT) is wrongly listed as a treatment, in direct contradiction to the NICE guidelines, giving the false impression that ME/CFS is a psychological illness.
The NHS website is trusted by both healthcare professionals and the wider public, so unfortunately these egregious mistakes have a big impact. I wrote to the NHS website team about this, and got this brief reply:
“Thank you for the feedback on the topic. We are hoping to review the content you are referring to within the next six weeks as the date of the next review has been bought forward. Kind Regards, The NHS Website Team”
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A mother of a child with severe ME/CFS describes troubling experiences of medical harm and accusations of abuse in healthcare settings
Children with severe ME/CFS and their families all too often face misunderstanding and accusations of abuse in healthcare settings. There is little awareness of these experiences, in part because many families are understandably unwilling to share their stories. I’m very grateful to Tina Rodwell, who is a full-time carer for her son Angus, for sharing hers.
. I’d like to highlight several points in Tina’s story which sadly are not unique, but form a pattern which advocates see repeated over and over:
- The doctors involved had little knowledge of ME/CFS, or they had out-dated knowledge.
- When the MRI scan came back normal the consultant neurologist jumped to the conclusion that there was nothing physically wrong with Angus, and that his mother was somehow the problem.
- Once one doctor had decided that the illness was ‘not real’ and that the mother was untrustworthy, every subsequent doctor looked at Angus and Tina through this lens.
- Acting without Tina’s knowledge or permission, a clinician had Angus do strenuous physical exercise. This clinician was unaware that exercise can be dangerous for people with ME/CFS. The exercise prompted a very serious relapse.
- Because doctors did not recognise the seriousness of Angus’s illness, the school considered him to be ‘truant’ and a school attendance officer got involved. Tina was lucky that the attendance officer was familiar with ME/CFS; if not for this stroke of luck the family might have faced a referral to Social Services.
- Tina advocated for her child and protected him from harmful treatments. Because of this, doctors concluded that she was fabricating her son’s illness.
- Tina moved Angus to a different hospital, but the accusation of fabricated or induced illness (FII) followed them.
Tina has made it clear to me that she doesn’t want medical professionals to feel blamed or attacked by her story. She wants them to listen and understand, and find ways for clinicians and families to work together to provide better care for kids like Angus going forward.
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The Royal College of Psychiatrists promotes dangerous ‘treatments’ for children with ME/CFS
The logo of the Royal College of Psychiatrists. Update 07/11/2023: the webpage has been taken down!
The Royal College of Psychiatrists, through their website, recommends that children with ME/CFS should receive graded exercise therapy (GET) and gradually increase their activity. Although the website claims “this is not advice,” in fact it very clearly is advice, and is likely to be taken as such by patients, their families, and by healthcare professionals.
GET is no longer recommended for people with ME/CFS because it can provoke post-exertional malaise (PEM), a form of relapse which can last for days, weeks or months, and in some cases can become permanent.
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Quick note: query submitted to the Royal College of Physicians
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:
To whom it may concern,
I was very interested to read in the government’s plan on ME/CFS (https://www.gov.uk/government/consultations/improving-the-experiences-of-people-with-mecfs-interim-delivery-plan/my-full-reality-the-interim-delivery-plan-on-mecfs) that the Royal Society of Physicians has a role in developing training for postgraduate students. Would you please tell me what educational materials relating to ME/CFS the RCP currently maintains, and send me copies of the educational materials and all other relevant documents, such as reading lists or syllabuses.
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.
Sincerely,
Katie Johnstone
ME/CFS Medical Education Campaign
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Response to the government’s interim plan for ME/CFS
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:
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New video series brings clarity to ME/CFS and long Covid’s frequently-misunderstood symptom: post-exertional malaise (PEM) aka post-exertional symptom exacerbation (PESE)
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.
Watch the video series on Youtube.
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Job advert shows that NHS trust flouts NICE guidance
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.
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ME/CFS Medical Education Campaign 