“The Tangled Story of ME/CFS: Confusion, Denigration and Ignorance” is the final video for “Dialogues for a Neglected Illness”, a project that received a Wellcome Public Engagement Fund Award 2018/21. Following the history of ME from its epidemic beginnings, it looks at issues that contributed to the ‘fundamental systemic injustice’ described by Valerie Eliot Smith, a barrister.

A cognitive-behavioural model came to dominate UK research funding for ME/CFS and medical education, causing much of the medical profession to abandon medical treatments for patients. Many patients deteriorated, some becoming severely ill for decades. It was left to sick, citizen scientists to risk their health as they exposed deeply flawed psychological/behavioural research, before attracting the attention of concerned international professionals. Searching for truth they confronted entrenched university research systems driven by competition for funding, personal ambition and institutional self-promotion.

The deep-rooted problems alluded to in the NICE Guideline 2021 must now be addressed.

Watch the film: https://www.dialogues-mecfs.co.uk/films/the-tangled-story-of-me-cfs/

As far back as 1750 Sir Richard Manningham reported on a syndrome referred to as ‘Little Fever’.  This appears to have had similar symptoms to ME. The Lancet and British Medical Journal suggested that Florence Nightingale and Charles Darwin both suffered from the disease: https://solvecfs.org/did-darwin-have-M.E.cfs/

In 1955 the Royal Free Hospital outbreak affected 292 staff members forcing the hospital to close for 6 months. Dr Melvin Ramsay attended on the patients and the term benign Myalgic Encephalomyelitis was introduced in an editorial in the Lancet the following year. https://www.M.E.-international.org/uploads/1/2/7/6/127602984/acheson_1956_lancet_editorial_transcript.pdf

The WHO classifies myalgic encephalomyelitis as a neurological disease in ICD 10 under ‘Diseases of the nervous system’ at G93.3 under the parent ‘Post Viral Fatigue Syndrome’ and in ICD 11 under ‘Other disorders of the nervous system’ at 8E48 as an inclusion to ‘Post Viral Fatigue Syndrome’ with chronic fatigue syndrome but not as CFS/ME or ME/CFS.

The key diagnostic symptoms are:

• Post-exertional malaise or symptom exacerbation with a prolonged recovery period, usually 24 hours or longer.  This is the cardinal diagnostic feature of ME.
• Marked physical or cognitive fatiguability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks. This is due to a pathological inability to produce sufficient energy on demand.
• Cognitive dysfunction including problems with short-term working memory,  attention span, information processing.
• Orthostatic intolerance and autonomic nervous system dysfunction including dizziness, palpitations and fainting, in some cases postural orthostatic tachycardia syndrome (PoTS).
• Pain, which can involve muscles, nerves, joints and headaches
• Unrefreshing sleep, insomnia or prolonged sleep (hypersomnia), sleep reversal
• Ongoing flu-like symptoms including sore throats, tender glands, poor temperature control.

Other symptoms may include drug and chemical sensitivities and hypersensitivities, problems with balance, sensory disturbances – including ’pins and needles’ (paraesthesiae), intolerance to bright light (photophobia) and sound (hyperacusis), alcohol intolerance and irritable bowel type symptoms.

People with severe or very severe ME may experience serious neurological symptoms including visual disturbances, blackouts, loss of speech or swallowing – which may necessitate tube feeding.

Children usually have a symptom profile that is similar to adults, but are particularly prone to abdominal pain, nausea, and variations in appetite – which can lead to weight gain or weight loss.

Symptoms often fluctuate throughout the day and from day to day but the overall result is a substantial reduction in both physical and cognitive activity levels..

https://www.meaction.net/2019/11/14/demystifying-the-diagnostic-criteria/#Criteria_Comparison_Chart gives a good outline. 

A high proportion of cases follow straight on from a viral illness. ME can also be triggered by other immune system stressors such as vaccinations.

Prognosis and outlook is variable.  Many people will make some degree of improvement over time but then stabilise at a significantly lower level of functioning than normal. Sustained recovery is more likely to occur in children than adults, where it is unusual, although some children do not improve and may deteriorate. A significant number, possibly around 25%, are severely or very severely affected, and require 24-hour care.  The huge impact of this disease on the quality of life is felt by sufferers, their carers and the whole family unit.

Diagnosis is mainly based on taking a careful clinical history together with a full physical examination. Blood tests and other investigations are carried out to exclude other conditions that can present with ME like symptoms, but cannot be used to diagnose ME. Doctors should be aiming to confirm a diagnosis in straightforward cases within three months of onset of symptoms. The MEA has an information leaflet covering Early and Accurate Diagnosis: https://meassociation.org.uk/download/79019/

ME affects all age groups, including children and adolescents – where it is one of the commonest causes of long-term sickness absence from school. The onset is most common between the early twenties and mid forties with women tending to be more susceptible.  In children, the commonest age of onset is in the early teenage years but children as young as 5 can be affected. ME affects all social classes and ethnic groups.

An estimated 250,000 people in the UK and around 17 million world-wide.  ME is commonly referred to as ME/CFS or CFS/ME (chronic fatigue syndrome) by doctors and ME may not be the same as either.

The most recent (2014-2015) report from 2020Health (Counting the Cost) estimated the annual cost to be £3.3 billion:

https://meassociation.org.uk/wp-content/uploads/2020Health-Counting-the-Cost-Sept-2017.pdf

Pacing is a flexible form of activity and energy management that most people report to be both helpful and safe.  At present, there is no effective drug treatment for ME. However, over-the-counter and prescribed drugs can sometimes be helpful in the management of symptoms such as pain, sleep disturbance and autonomic symptoms.  People with ME should also be made aware of useful self-help strategies for symptom control and the importance of good nutrition.  The draft for the new NICE guideline on ME/CFS proposes to no longer recommend CBT (cognitive behavioural therapy) or GET (graded exercise therapy) as treatments for ME.

The £3.2 million Decode-ME genetic study seeks to uncover the biological roots of the disease, recruiting 30,000 people with an ME diagnosis, with results due to be published in late 2022 https://www.decodeme.org.uk

AfME, ME Research UK and the MEA were all involved in setting up the ME Biobank which collects blood samples from people with ME and makes them available to research groups.  Website  https://cureme.Ishtm.ac.uk/the-uk-mecfs-biobank/

A survey to assess the top 10 research priorities from the perspective of clinicians, patients and carers is the Priority Setting Partnership, funded by the NHIR and Scottish Government. Many charities commission their own research detailed on their websites.

Forward-ME is a sector-wide alliance that facilitates sharing, promoting and communicating:

• Research & Application – the studies and science that may advance the understanding of the cause and development (aetiology and pathogenesis) of M.E., ultimately leading to management techniques and a treatment to improve the quality of life of patients suffering from M.E.
• Support & Care – the best management for patients, families and carers to reduce suffering, enhance chances of improvement/recovery and cope with the challenges of M.E.
• Advocacy & Education – creating a clear understanding of M.E. amongst the medical profession, media and government with a view to speedy and accurate diagnosis, prevention, management and, in time, a cure.