Weds 8th November 10pm GMT, 5pm ET
Co-hosts @JemB123 and @CamCruise
What is Myalgic Encephalomyelitis?
Myalgic Encephalomyelitis (M.E.) is an acquired complex neurological disorder affecting multiple systems of the body. Many cases are preceded by a viral infection with onset being usually rapid (acute). However gradual onsets have also been reported. Affected individuals do not recover from the infection and instead experience a wide variety of symptoms including the body’s inability to produce energy at a cellular level.
Energy is needed to fuel all of the body’s internal functions. Cells cannot survive on their own. They need power to stay alive. They need energy to perform functions such as growth, maintaining balance, repair, reproduction, movement, cognitive function and defence. All body organs work through receiving an energy supply. If the energy supply is impaired in any way the body’s organs deteriorate.
When the body receives energy it is converted into Adenosine triphosphate (ATP) which is considered to be the energy currency of life. It is the high-energy molecule that stores the energy we need to do just about everything we do.
Similar to Multiple Sclerosis, patients with Myalgic Encephalomyelitis share many similar pathologies including impaired ATP.
To give an example of the effect on one organ – the brain. Lack of cellular energy will start out by the patient showing symptoms of ‘foggy brain’ which could mean forgetting conversations, poor short term memory, inability to hold conversations, inability to absorb new information, difficulty reading a book or following a film, difficulty finding the right words, intermittent dyslexia, etc. However if energy disruption continues the cumulative effect can induce dementia.
A cardinal symptom of M.E. is referred to in scientific literature as Post Exertional Malaise (PEM). Marked debilitating fatigue and weakness, sickness, cognitive dysfunction and multi symptom flare-up follows any physical or cognitive exertion requiring energy. These flare ups usually follow within 24-72 hours after physical or mental exertion.
Essentially what it means is that any exertion, physical, cognitive or even emotional stress creates a prolonged reaction in the body where a relapse or worsening of all symptoms occur which can last for days, weeks, months or longer. Indeed many people who have pushed far too hard beyond their limits have become bedbound and carer dependent for years.
Most Common Symptoms
The most common symptoms are headaches, bone and muscle pain, swollen lymph nodes, muscle weakness, muscle spasms, seizures, neck pain, vision abnormalities (such as blurred vision), cognitive impairment, photo-sensitivity, noise sensitivity, paresthesia, bladder and bowel dysfunction, vomiting and nausea and sleep dysfunction with many patients experiencing reversed circadian rhythms.. Cardiovascular abnormalities are also commonly reported.
Much like the disease Multiple Sclerosis, people can be affected in different ways from mild to very severe. Very severe cases leave affected individuals bedridden in a dark, noise free room, needing tube feeding and 24 hr care. Severe cases are usually bed or housebound with no basic energy to engage in ordinary simple self care and household activities like showering, washing hair, brushing teeth, making a meal, etc. Milder cases may be able to function at a higher level but energy is very limited and each task involves pacing and prolonged resting to restore enough energy for the next small task.
Myalgic Encephalomyelitis may occur as an outbreak that affects a large group of people (see outbreak at the Royal Free Hospital in 1955) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2425309/
or may only affect an individual (non-epidemically).
The first outbreak of Myalgic Encephalomyelitis was recorded in 1934 but the term Myalgic Encephalomyelitis first appeared in the medical literature in 1956 after the Royal Free Hospital outbreak, when it was named by Dr. Melvin Ramsay.
Myalgic Encephalomyelitis is recognized as a distinct disorder and has been classified as a specific neurological disorder under G.93.3 by the World Health Organization (WHO) since 1969. See here question raised in the European parliament in 2013 calling on all member states to respect the WHO classification of Myalgic Encephalomyelitis.
What is Chronic Fatigue Syndrome?
Many people confuse the term M.E. with C.F.S.
The term CFS was first used in medical literature by the Centre for Disease Control, USA during the 1980s to describe an outbreak of an M.E. type illness in Lake Tahoe. The criteria used for this ‘new’ illness focused only on the fatigue elements of patients symptoms and ignored the encephalitic (inflammation of the brain) features of the disorder. The name trivialised the seriousness of how ill these patients were.
The term CFS was appropriated on this side of the pond and over time became even more broadened to include many people with fatiguing illnesses originating from different causes. M.E. patients began to get swept up under this new ‘term’ – and so began the neglect of a cohort of very seriously ill patients.
The distinction between both illnesses has continued to cause problems for researchers, doctors, governments and patient organisations. Many began to use the terms interchangeably or with the combined acronym ME/CFS, creating a broad disease category that has no official classification.
This emphasis on fatigue unfortunately ‘allowed’ the disease of M.E. to become more and more disappeared and to even be defined by some as a psychiatric illness, thus condemning some very seriously ill patients to a lack of proper diagnosis, lack of appropriate testing, lack of treatment and understanding of the symptoms and more importantly a lack of interest in pursuing biological research for the condition.
However in recent years much of this has changed and there are very reputable scientists now involved worldwide in M.E. research adopting appropriate and more stringent diagnostic criteria on trial participants.
Below is a summary of recent biological research findings in people with M.E.
How is M.E. diagnosed?
There is a myth that M.E. is difficult to diagnose because ‘tests’ don’t show anything wrong with the patient. This is simply not true. Patients with M.E. are often given a diagnosis of CFS, or Post Viral Fatigue or, even worse simply Chronic Fatigue, making it look like they are just ‘tired’ people.
Many worldwide experts in the illness (including Ireland’s Prof Darragh) came together and produced a comprehensive diagnosis criteria called the International Consensus Criteria (2011) – ICC-ME.
The “Myalgic Encephalomyelitis – International Consensus Criteria (ME-ICC)” advocates for removing fatigue as a characteristic symptom and defines the disorder as an acquired neurological disease with complex global dysfunctions. The ME-ICC also defines specific symptom requirements: post-exertional neuroimmune exhaustion, neurological impairments, immune, gastrointestinal, and genitourinary impairments, and energy metabolism impairments.
The pre-runner to the ICC-ME was the Canadian Consensus Criteria (2003). CCC-ME
The Canadian Consensus Criteria defines ME/CFS as an acquired, organic, pathophysiological multi-systemic illness that occurs in both sporadic and epidemic forms and requires core symptoms including post-exertional malaise (PEM) and neurocognitive dysfunction, in contrast to the polythetic approach of the Fukuda case definition below.
The Fukuda et al. (1994) criteria was developed by the CDC in the USA after the outbreak at Lake Tahoe.
This criteria is used to define Chronic Fatigue Syndrome. As Post Exertional Malaise is not a mandatory criteria under Fukuda you can begin to imagine the number of misdiagnosis and confusion that abounds. Research has indicated that individuals with a primary psychiatric illness (e.g. primary Major Depressive Disorder) may be misdiagnosed under the Fukuda criteria due to many overlapping symptoms including fatigue and sleep difficulties.
In the UK however another criteria was developed for and by a group of psychiatrists. This is known as the Oxford Criteria.
This criteria is far less rigorous and may include patients with fatigue as their only symptom. As you can imagine there are a myriad of illness which can have fatigue as a primary symptom, eg MS, Lupus, Fibromyalgia, cancer, heart disease, etc so the possibility for misdiagnosis is very high and the research criteria results in a toxic mix of research subjects with a range of illnesses of different origins.
In July 2016, the Agency for Healthcare, Research and Quality in the USA issued an addendum to it’s Evidence Report recommending the retirement of the Oxford criteria for ME/CFS because it was the least specific of all the definitions and only included six months fatigue as a primary symptom and did not include Post Exertional Malaise which is considered a hallmark of the disease. See Introduction paragraph of this
The good news however is that in recent years there has been huge strides made in the understanding and appropriate categorisation of M.E.
In the USA for example the Institute of Medicine (IOM) produced a comprehensive report back in 2015 called “Beyond Myalgic Encephalomyelitis/chronic fatigue syndrome – Redefining an illness” which concluded “It is clear from the evidence compiled by the committee that ME/CFS is a serious, chronic, complex, and multisystem disease that frequently and dramatically limits the activities of affected patients”. The report goes on to recommend a new diagnostic criteria very similar to the CCC-ME of 2003 mentioned above and lists Post Exertional Malaise as a mandatory criteria for diagnosis.
What do Irish doctors know about ME?
Many Irish doctors know very little about M.E. The illness is not taught in medical schools here. It has virtually been disappeared or conflated with CFS.. There are no consultants specialising in the illness and therefore there is no clear medical care plan pathway for patients.
Many patients regularly report bad experiences where hospital staff have said they’ve either never heard of the illness or else they think that it means you have a ‘mental health’ problem. Most patients end up being referred to a psychiatrist and are told to embark on graded exercise therapy – an approach that causes much harm to M.E. patients who have an inability to produce energy at a cellular level. Just this year the Journal of Health Psychology devoted a complete edition to debunking the myth that Graded Exercise Therapy and Cognitive Behaviour Therapy could have any beneficial impacts on patients with M.E.
It is also very difficult to find a GP who understands the illness or is willing to look up the current research. While they do exist here and there, they are doing so without any support or encouragement from their parent bodies or the HSE.
This inevitably leads to the neglect of people who are extremely ill. Whether the neglect is wilful or accidental is irrelevant in this situation. People are left to cope on their own seeking advice, testing and treatment abroad where they can afford it or left to rot in darkened bedrooms when they can’t. Children also get M.E. and in the UK figures show it is the biggest contributor to school absences.
T1 What are the symptoms of ME?
T2 What are the perceptions of ME among the medical community? Is is under-diagnosed? Under-treated?
T3 Are graded exercise and cognitive behaviour therapy appropriate treatments for ME?
T4 What has been your experience with seeking healthcare for ME?
T5 What’s one thing you learned about ME tonight?