Myalgic Encephalomyelitis (M.E.) Support (Response to "Misleading" BBC Article on M.E.)
Myalgic Encephalomyelitis (M.E.) Support
Original BBC Article (1st June, 2026)
So Myalgic Encephalomyelitis, or M.E. for short, is a chronic, fluctuating neurological disease affecting the brain and spinal cord. It can cause a wide range of symptoms, including problems with thinking and memory, sleep disturbances, pain, sensory abnormalities, muscle weakness, autonomic dysfunction, and varying degrees of physical and cognitive disability.
The condition can be exacerbated following physical, cognitive, or emotional exertion, making everyday activities significantly more difficult and, in some cases, impossible. This worsening of symptoms can leave people with M.E. profoundly debilitated and can substantially limit their ability to participate in work, education, family life, and social activities.
Whilst there are key features commonly associated with the illness, not everyone with M.E. experiences the same symptoms. The severity, combination, and duration of symptoms can vary considerably from person to person and may fluctuate over time.
One charity, The ME Association, estimates that around 404,000 people in the UK have M.E., and another charity, Action for ME, estimates that one in four people with the illness are so severely affected that they are housebound or bedbound.
The issue around language stems from the condition often being conflated with the misdiagnosis of Chronic Fatigue Syndrome.
However, many people with the illness argue that this terminology fails to reflect the neurological nature of Myalgic Encephalomyelitis and places undue emphasis on FATIGUE.
This issue around nomenclature stems from the widespread conflation of Myalgic Encephalomyelitis (M.E.) and Chronic Fatigue Syndrome (CFS).
Whilst the terms are often combined as "ME/CFS", critics of this approach argue that they represent fundamentally different concepts and should not be treated as interchangeable.
From this perspective, Myalgic Encephalomyelitis is a specific neurological disease involving encephalitic and myelitic pathology, historically associated with acute infectious onset and significant neurological impairment.
In contrast, CFS and later syndrome-based criterias were developed around symptom-based clusters, rather than the identification of a specific disease process.
Proponents of this view argue that non-diagnostic frameworks such as SEID were created to redefine Chronic Fatigue Syndrome as a "symptom-based clinical syndrome" and were "not intended to define nor diagnose" Myalgic Encephalomyelitis (also known as Enteroviral Encephalomyelitis).
They contend that these frameworks were designed to identify a "symptom-based cluster of patients" whilst "excluding" those whose symptoms are "explained by recognised medical diseases", including "neurological diagnoses" such as "Enteroviral Encephalomyelitis".
They further argue that historical descriptions of Myalgic Encephalomyelitis, including the work of Byron Hyde and the Nightingale Research Foundation, as well as the 2011 International Consensus Criteria, more closely reflect a "distinct" neurological disease characterised by "objective" neurological CNS dysfunction rather than a "non-diagnosis" based primarily around "profound fatigue".
"FATIGUE" may not even be present in the M.E. patient.
In this interpretation, Myalgic Encephalomyelitis should be recognised as a separate disease entity and not simply regarded as another name for Chronic Fatigue Syndrome.
They argue that historical descriptions of Myalgic Encephalomyelitis more closely reflect a "distinct" neurological disease, than modern "syndrome-based criteria" as reflected within the SEID (ME/CFS) algorithm.
They point to the clinical observations of Dr Melvin Ramsay and Dr. Elizabeth Dowsett, the Nightingale Research Foundation definitions published in 2007 and 2016 under the direction of Dr. Byron Hyde, and the 2011 International Consensus Criteria (ICC) as examples of frameworks that describe a specific disease process rather than a "broad" symptom-based syndrome, leading with "FATIGUE".
Proponents of this view contend that Myalgic Encephalomyelitis, which they regard as synonymous with Enteroviral Encephalomyelitis, is a diagnosable acute-onset neurological disease and should not be conflated with syndrome-based classifications.
They argue that these historical descriptions, outbreak investigations, and clinical case studies are more consistent with a distinct neurological disease entity than with later classifications based primarily on symptom clusters and FATIGUE.
In this interpretation, Myalgic Encephalomyelitis should be recognised as a separate neurological disease and not simply regarded as another name for Chronic Fatigue Syndrome.
They contend that the conflation of M.E. and CFS has obscured the historical understanding of M.E. and contributed to confusion in research, diagnosis, and treatment.
So what causes this condition?
From the perspective that Myalgic Encephalomyelitis represents Enteroviral Encephalomyelitis, the illness is caused by enteroviral infection affecting the central nervous system.
In this interpretation, the name itself describes the nature of the disease: an encephalomyelitis, or disease process involving the brain and spinal cord, associated with enteroviruses.
Enteroviruses are a large group of viruses capable of affecting multiple organ systems, including the nervous system. Whilst many infections are mild or self-limiting, some enteroviral infections are known to cause serious neurological disease and long-term disability.
Historically, outbreaks of illnesses diagnosed as Myalgic Encephalomyelitis have often followed infectious events, and numerous researchers have investigated possible links between enteroviruses and the development of the condition. Proponents of the Enteroviral Encephalomyelitis model argue that these observations are consistent with an infectious neurological disease rather than an unexplained fatigue syndrome.
In this view, the key question is not whether the illness has a biological cause, but rather how enteroviral infection leads to the neurological, cognitive, autonomic, and physical symptoms experienced by people with the disease, and why severity can vary so greatly between individuals.
Research continues into the mechanisms underlying the illness, including the role of the immune system, the nervous system, genetic factors, and the long-term consequences of enteroviral infection. Findings in these areas may help explain differences in disease severity and improve diagnosis and treatment in the future.
If someone suspects they might have Myalgic Encephalomyelitis, are there signs of the condition to watch out for?
As I've said, people with Myalgic Encephalomyelitis can experience a wide range of symptoms, and not everyone will be affected in exactly the same way. However, there are several common features that may indicate the presence of a neurological disease affecting the brain and spinal cord.
Cognitive dysfunction is one of the most frequently reported symptoms. This can include difficulty concentrating, problems recalling words or information, slowed thinking, short-term memory impairment, difficulty processing information, and problems multitasking. Many people describe this as "brain fog".
Sleep disturbances are also common. Some people experience unrefreshing sleep, while others report altered sleep patterns, insomnia, hypersomnia, or waking feeling unwell despite having slept for many hours.
Pain is another common feature and may affect muscles, joints, nerves, or the head. The location and severity of pain can vary significantly between individuals and may fluctuate over time.
Neurological symptoms can include sensory disturbances, increased sensitivity to light, sound, touch, or temperature, balance problems, dizziness, muscle weakness, visual disturbances, and autonomic symptoms such as difficulty remaining upright, abnormal heart rate responses, or problems regulating body temperature.
Many people also find that physical activity, mental effort, or emotional stress can worsen their symptoms and reduce their ability to function. The degree of impairment varies from person to person, with some remaining relatively mobile while others become housebound or bedbound.
If you have been experiencing a combination of neurological symptoms, cognitive difficulties, sleep disruption, pain, and a substantial reduction in your ability to carry out normal daily activities, it is important to discuss these symptoms with your GP or healthcare professional.
Keeping a detailed record of your symptoms, when they occur, and how they affect your day-to-day life can be helpful. This information may assist healthcare professionals in understanding the pattern and severity of your illness and determining what further investigations or assessments may be appropriate.
What does the diagnosis process look like?
Diagnosing Myalgic Encephalomyelitis involves assessing a person's symptoms, medical history, and evidence of neurological disease consistent with Enteroviral Encephalomyelitis. Because the illness can affect multiple body systems, a range of investigations may be considered depending on the individual's presentation.
Testing for enteroviruses may include PCR analysis of blood, cerebrospinal fluid (CSF), throat swabs, or stool samples. Serological investigations such as enterovirus-specific IgM testing and neutralising antibody titres may also be used to assess evidence of enteroviral infection.
Where there is suspicion of central nervous system involvement, a lumbar puncture may be performed to obtain cerebrospinal fluid for analysis, including enterovirus PCR testing.
Neuroimaging may be used to investigate abnormalities affecting the brain. MRI scans can assess structural changes,..
...whilst a Segami Oasis Neurogam hypoperfusion SPECT scan may be used to identify abnormalities in cerebral blood flow that have been reported in patients with the illness.
Where chronic enteroviral infection is suspected, gastrointestinal biopsy samples may be examined for evidence of enteroviral infection within gastrointestinal tissues.
Additional neurological investigations may be appropriate depending on the symptoms present. Electromyography (EMG) and nerve conduction studies (NCS) may be performed where muscle weakness or poliomyelitis-like symptoms are present.
Electroencephalography (EEG) may be used where encephalitic seizures or other abnormal electrical activity of the brain are suspected.
Because the illness can affect different people in different ways, not every patient will require the same investigations. The specific tests performed will depend on the individual's symptoms, clinical findings, and medical history.
The earlier the illness is recognised, the sooner appropriate medical support, symptom management, and specialist assessment can begin.
Is there treatment or even a cure for the condition?
At present, there is no universally accepted cure for Myalgic Encephalomyelitis. Treatment is generally aimed at addressing the underlying disease process where possible, managing symptoms, preventing deterioration, and improving quality of life.
From the perspective that M.E. represents Enteroviral Encephalomyelitis, treatment approaches may include antiviral therapies, immune-modulating treatments, and supportive medical care, although responses can vary considerably between individuals and no single treatment has been shown to be effective for all patients.
Some people experience significant improvement over time and may recover partially or, in some cases, substantially. Others remain ill for many years or decades with varying levels of disability.
Care should be individualised according to a person's symptoms and level of impairment. This may include management of neurological symptoms, sleep disturbances, pain, autonomic dysfunction, gastrointestinal symptoms, cognitive difficulties, and mobility problems.
Many people find it helpful to carefully manage physical, cognitive, and emotional exertion to avoid worsening symptoms. Adjustments at home, in education, or in the workplace, together with mobility aids and other practical support where required, can help reduce the impact of the illness on daily life.
Ongoing research continues to investigate the role of enteroviruses in the disease, the mechanisms responsible for long-term disability, and potential treatments that may improve outcomes for people living with the condition.
How can people get support with Myalgic Encephalomyelitis if they need it?
Living with Myalgic Encephalomyelitis can be extremely challenging, particularly for those experiencing significant neurological, cognitive, or physical disability. Accessing appropriate medical care, practical assistance, and social support can make a substantial difference to quality of life.
People affected by the illness may benefit from support provided by their GP, neurologists, infectious disease specialists, rehabilitation services, occupational therapists, social care services, and other healthcare professionals depending on their individual needs.
Support may also be available through patient organisations, charities, advocacy groups, and online communities, which can provide information, educational resources, practical guidance, and opportunities to connect with others living with the condition.
For those whose illness significantly affects their ability to work, study, travel, or manage everyday activities, additional support may be available through disability services, benefits systems, educational institutions, employers, and local authorities.
There is also a wide range of information available through healthcare providers, research organisations, and patient groups for people seeking to learn more about the condition, current research, and available treatment and management options.
Importantly, people should not feel they have to manage the illness alone. Seeking medical advice and accessing appropriate support services can help individuals and families better navigate the challenges associated with the condition.
If you know someone with Myalgic Encephalomyelitis, there are many ways you can support them. Perhaps the most important is to take the illness seriously and listen to the person's experiences. The condition can be invisible, unpredictable, and profoundly disabling, and many people face misunderstanding about the nature and severity of their symptoms.
Living with a chronic neurological disease can affect every aspect of a person's life, including their education, employment, relationships, independence, and ability to participate in everyday activities. Understanding these challenges and showing patience and compassion can make a significant difference.
Practical support may include helping with shopping, preparing meals, attending medical appointments, childcare, transport, household tasks, paperwork, or other day-to-day responsibilities that may become difficult because of the illness.
It can also be helpful to be flexible with plans and expectations, recognising that symptoms may fluctuate from day to day. Someone may appear relatively well at one time and significantly unwell at another, depending on the severity of their symptoms and the demands placed upon them.
Rather than making assumptions about what a person needs, it is often best to ask what support would be most helpful. Every person's experience of the illness is different, and the most effective support is often tailored to the individual's circumstances and needs.
For people who are severely affected, maintaining social contact, reducing isolation, and ensuring access to appropriate medical and practical support can be just as important as assistance with physical tasks.
This article is dedicated to Jodi Bassett of hfme.org (Patient Advocate and M.E. Patient)
Original BBC Article (1st June, 2026)
What is Myalgic Encephalomyelitis?
So Myalgic Encephalomyelitis, or M.E. for short, is a chronic, fluctuating neurological disease affecting the brain and spinal cord. It can cause a wide range of symptoms, including problems with thinking and memory, sleep disturbances, pain, sensory abnormalities, muscle weakness, autonomic dysfunction, and varying degrees of physical and cognitive disability.
The condition can be exacerbated following physical, cognitive, or emotional exertion, making everyday activities significantly more difficult and, in some cases, impossible. This worsening of symptoms can leave people with M.E. profoundly debilitated and can substantially limit their ability to participate in work, education, family life, and social activities.
Whilst there are key features commonly associated with the illness, not everyone with M.E. experiences the same symptoms. The severity, combination, and duration of symptoms can vary considerably from person to person and may fluctuate over time.
One charity, The ME Association, estimates that around 404,000 people in the UK have M.E., and another charity, Action for ME, estimates that one in four people with the illness are so severely affected that they are housebound or bedbound.
The issue around language stems from the condition often being conflated with the misdiagnosis of Chronic Fatigue Syndrome.
However, many people with the illness argue that this terminology fails to reflect the neurological nature of Myalgic Encephalomyelitis and places undue emphasis on FATIGUE.
This issue around nomenclature stems from the widespread conflation of Myalgic Encephalomyelitis (M.E.) and Chronic Fatigue Syndrome (CFS).
Whilst the terms are often combined as "ME/CFS", critics of this approach argue that they represent fundamentally different concepts and should not be treated as interchangeable.
From this perspective, Myalgic Encephalomyelitis is a specific neurological disease involving encephalitic and myelitic pathology, historically associated with acute infectious onset and significant neurological impairment.
In contrast, CFS and later syndrome-based criterias were developed around symptom-based clusters, rather than the identification of a specific disease process.
Proponents of this view argue that non-diagnostic frameworks such as SEID were created to redefine Chronic Fatigue Syndrome as a "symptom-based clinical syndrome" and were "not intended to define nor diagnose" Myalgic Encephalomyelitis (also known as Enteroviral Encephalomyelitis).
They contend that these frameworks were designed to identify a "symptom-based cluster of patients" whilst "excluding" those whose symptoms are "explained by recognised medical diseases", including "neurological diagnoses" such as "Enteroviral Encephalomyelitis".
They further argue that historical descriptions of Myalgic Encephalomyelitis, including the work of Byron Hyde and the Nightingale Research Foundation, as well as the 2011 International Consensus Criteria, more closely reflect a "distinct" neurological disease characterised by "objective" neurological CNS dysfunction rather than a "non-diagnosis" based primarily around "profound fatigue".
"FATIGUE" may not even be present in the M.E. patient.
In this interpretation, Myalgic Encephalomyelitis should be recognised as a separate disease entity and not simply regarded as another name for Chronic Fatigue Syndrome.
They argue that historical descriptions of Myalgic Encephalomyelitis more closely reflect a "distinct" neurological disease, than modern "syndrome-based criteria" as reflected within the SEID (ME/CFS) algorithm.
They point to the clinical observations of Dr Melvin Ramsay and Dr. Elizabeth Dowsett, the Nightingale Research Foundation definitions published in 2007 and 2016 under the direction of Dr. Byron Hyde, and the 2011 International Consensus Criteria (ICC) as examples of frameworks that describe a specific disease process rather than a "broad" symptom-based syndrome, leading with "FATIGUE".
Proponents of this view contend that Myalgic Encephalomyelitis, which they regard as synonymous with Enteroviral Encephalomyelitis, is a diagnosable acute-onset neurological disease and should not be conflated with syndrome-based classifications.
Supporters of this interpretation highlight features such as "acute" infectious onset, prolonged muscle fatigability, motor weakness, neurological dysfunction, cognitive impairment, autonomic disturbances [Dysautonomia (Autonomic Dysfunction), Postural orthostatic Tachycardia Syndrome (PoTS) or low blood pressure (Orthostatic Hypotension or Neurally Mediated Hypotension)], sensory abnormalities, and prolonged relapse following exertion as characteristic features of the illness.
They argue that these historical descriptions, outbreak investigations, and clinical case studies are more consistent with a distinct neurological disease entity than with later classifications based primarily on symptom clusters and FATIGUE.
In this interpretation, Myalgic Encephalomyelitis should be recognised as a separate neurological disease and not simply regarded as another name for Chronic Fatigue Syndrome.
They contend that the conflation of M.E. and CFS has obscured the historical understanding of M.E. and contributed to confusion in research, diagnosis, and treatment.
So what causes this condition?
From the perspective that Myalgic Encephalomyelitis represents Enteroviral Encephalomyelitis, the illness is caused by enteroviral infection affecting the central nervous system.
In this interpretation, the name itself describes the nature of the disease: an encephalomyelitis, or disease process involving the brain and spinal cord, associated with enteroviruses.
Enteroviruses are a large group of viruses capable of affecting multiple organ systems, including the nervous system. Whilst many infections are mild or self-limiting, some enteroviral infections are known to cause serious neurological disease and long-term disability.
Historically, outbreaks of illnesses diagnosed as Myalgic Encephalomyelitis have often followed infectious events, and numerous researchers have investigated possible links between enteroviruses and the development of the condition. Proponents of the Enteroviral Encephalomyelitis model argue that these observations are consistent with an infectious neurological disease rather than an unexplained fatigue syndrome.
In this view, the key question is not whether the illness has a biological cause, but rather how enteroviral infection leads to the neurological, cognitive, autonomic, and physical symptoms experienced by people with the disease, and why severity can vary so greatly between individuals.
Research continues into the mechanisms underlying the illness, including the role of the immune system, the nervous system, genetic factors, and the long-term consequences of enteroviral infection. Findings in these areas may help explain differences in disease severity and improve diagnosis and treatment in the future.
If someone suspects they might have Myalgic Encephalomyelitis, are there signs of the condition to watch out for?
As I've said, people with Myalgic Encephalomyelitis can experience a wide range of symptoms, and not everyone will be affected in exactly the same way. However, there are several common features that may indicate the presence of a neurological disease affecting the brain and spinal cord.
Cognitive dysfunction is one of the most frequently reported symptoms. This can include difficulty concentrating, problems recalling words or information, slowed thinking, short-term memory impairment, difficulty processing information, and problems multitasking. Many people describe this as "brain fog".
Sleep disturbances are also common. Some people experience unrefreshing sleep, while others report altered sleep patterns, insomnia, hypersomnia, or waking feeling unwell despite having slept for many hours.
Pain is another common feature and may affect muscles, joints, nerves, or the head. The location and severity of pain can vary significantly between individuals and may fluctuate over time.
Neurological symptoms can include sensory disturbances, increased sensitivity to light, sound, touch, or temperature, balance problems, dizziness, muscle weakness, visual disturbances, and autonomic symptoms such as difficulty remaining upright, abnormal heart rate responses, or problems regulating body temperature.
Many people also find that physical activity, mental effort, or emotional stress can worsen their symptoms and reduce their ability to function. The degree of impairment varies from person to person, with some remaining relatively mobile while others become housebound or bedbound.
If you have been experiencing a combination of neurological symptoms, cognitive difficulties, sleep disruption, pain, and a substantial reduction in your ability to carry out normal daily activities, it is important to discuss these symptoms with your GP or healthcare professional.
Keeping a detailed record of your symptoms, when they occur, and how they affect your day-to-day life can be helpful. This information may assist healthcare professionals in understanding the pattern and severity of your illness and determining what further investigations or assessments may be appropriate.
What does the diagnosis process look like?
Diagnosing Myalgic Encephalomyelitis involves assessing a person's symptoms, medical history, and evidence of neurological disease consistent with Enteroviral Encephalomyelitis. Because the illness can affect multiple body systems, a range of investigations may be considered depending on the individual's presentation.
Testing for enteroviruses may include PCR analysis of blood, cerebrospinal fluid (CSF), throat swabs, or stool samples. Serological investigations such as enterovirus-specific IgM testing and neutralising antibody titres may also be used to assess evidence of enteroviral infection.
Where there is suspicion of central nervous system involvement, a lumbar puncture may be performed to obtain cerebrospinal fluid for analysis, including enterovirus PCR testing.
Neuroimaging may be used to investigate abnormalities affecting the brain. MRI scans can assess structural changes,..
...whilst a Segami Oasis Neurogam hypoperfusion SPECT scan may be used to identify abnormalities in cerebral blood flow that have been reported in patients with the illness.
Where chronic enteroviral infection is suspected, gastrointestinal biopsy samples may be examined for evidence of enteroviral infection within gastrointestinal tissues.
Additional neurological investigations may be appropriate depending on the symptoms present. Electromyography (EMG) and nerve conduction studies (NCS) may be performed where muscle weakness or poliomyelitis-like symptoms are present.
Electroencephalography (EEG) may be used where encephalitic seizures or other abnormal electrical activity of the brain are suspected.
Because the illness can affect different people in different ways, not every patient will require the same investigations. The specific tests performed will depend on the individual's symptoms, clinical findings, and medical history.
The earlier the illness is recognised, the sooner appropriate medical support, symptom management, and specialist assessment can begin.
Is there treatment or even a cure for the condition?
At present, there is no universally accepted cure for Myalgic Encephalomyelitis. Treatment is generally aimed at addressing the underlying disease process where possible, managing symptoms, preventing deterioration, and improving quality of life.
From the perspective that M.E. represents Enteroviral Encephalomyelitis, treatment approaches may include antiviral therapies, immune-modulating treatments, and supportive medical care, although responses can vary considerably between individuals and no single treatment has been shown to be effective for all patients.
Some people experience significant improvement over time and may recover partially or, in some cases, substantially. Others remain ill for many years or decades with varying levels of disability.
Care should be individualised according to a person's symptoms and level of impairment. This may include management of neurological symptoms, sleep disturbances, pain, autonomic dysfunction, gastrointestinal symptoms, cognitive difficulties, and mobility problems.
Many people find it helpful to carefully manage physical, cognitive, and emotional exertion to avoid worsening symptoms. Adjustments at home, in education, or in the workplace, together with mobility aids and other practical support where required, can help reduce the impact of the illness on daily life.
Ongoing research continues to investigate the role of enteroviruses in the disease, the mechanisms responsible for long-term disability, and potential treatments that may improve outcomes for people living with the condition.
How can people get support with Myalgic Encephalomyelitis if they need it?
Living with Myalgic Encephalomyelitis can be extremely challenging, particularly for those experiencing significant neurological, cognitive, or physical disability. Accessing appropriate medical care, practical assistance, and social support can make a substantial difference to quality of life.
People affected by the illness may benefit from support provided by their GP, neurologists, infectious disease specialists, rehabilitation services, occupational therapists, social care services, and other healthcare professionals depending on their individual needs.
Support may also be available through patient organisations, charities, advocacy groups, and online communities, which can provide information, educational resources, practical guidance, and opportunities to connect with others living with the condition.
For those whose illness significantly affects their ability to work, study, travel, or manage everyday activities, additional support may be available through disability services, benefits systems, educational institutions, employers, and local authorities.
There is also a wide range of information available through healthcare providers, research organisations, and patient groups for people seeking to learn more about the condition, current research, and available treatment and management options.
Importantly, people should not feel they have to manage the illness alone. Seeking medical advice and accessing appropriate support services can help individuals and families better navigate the challenges associated with the condition.
If you know someone with Myalgic Encephalomyelitis, there are many ways you can support them. Perhaps the most important is to take the illness seriously and listen to the person's experiences. The condition can be invisible, unpredictable, and profoundly disabling, and many people face misunderstanding about the nature and severity of their symptoms.
Living with a chronic neurological disease can affect every aspect of a person's life, including their education, employment, relationships, independence, and ability to participate in everyday activities. Understanding these challenges and showing patience and compassion can make a significant difference.
Practical support may include helping with shopping, preparing meals, attending medical appointments, childcare, transport, household tasks, paperwork, or other day-to-day responsibilities that may become difficult because of the illness.
It can also be helpful to be flexible with plans and expectations, recognising that symptoms may fluctuate from day to day. Someone may appear relatively well at one time and significantly unwell at another, depending on the severity of their symptoms and the demands placed upon them.
Rather than making assumptions about what a person needs, it is often best to ask what support would be most helpful. Every person's experience of the illness is different, and the most effective support is often tailored to the individual's circumstances and needs.
For people who are severely affected, maintaining social contact, reducing isolation, and ensuring access to appropriate medical and practical support can be just as important as assistance with physical tasks.
This article is dedicated to Jodi Bassett of hfme.org (Patient Advocate and M.E. Patient)
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