ME Advocates Ireland’s Information Pack

INFORMATION PACK

The Situation of 
Myalgic Encephalomyelitis (ME) Patients in Ireland

2026

Summary

Worldwide there are millions missing from their previous active lives having acquired Myalgic Encephalomyelitis (M.E.).

In Ireland in 2026, there are an estimated 53,400 to 106,800 people living with M.E. [1] These figures are extrapolations based on a comparison of prevalence rates worldwide (1-2%). There is no official collation of data on prevalence here in Ireland. 

However, caution is urged with these figures as the diagnosis of M.E. is not always made using the best clinical evidence available. The criteria for a diagnosis of Chronic Fatigue Syndrome (CFS) for example is less strict and there are concerns that the numbers of true M.E. patients may be over-estimated as a result.

·    M.E. is a serious long-term neurological condition affecting multiple systems of the body. The body’s ability to generate and produce energy at a cellular level is seriously impaired meaning systems and organs cannot function properly causing progressive systemic deterioration.

Post Exertional Neuroimmune Exhaustion (PENE) is the cardinal symptom of M.E. 

According to the Myalgic Encephalomyelitis International Consensus Criteria (2011) 'this cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions.'  

Essentially any action whether physical, cognitive, emotional, social etc drains available energy and if the ability to replace this energy is impaired this can lead to a worsening of all symptoms which can last for days, weeks or months – even causing permanent, non-recoverable systemic damage.

·    Important Facts 

      Many people with M.E. are reliant on carers for their basic needs, especially those with Severe M.E.

·     Deaths among the M.E. population are usually attributed to secondary causes such as cancers, cardiac issues and suicide, but death can also happen as a result of malnutrition.

·     There are NO M.E. specialist hospital consultants in Ireland.

·     There is currently no national clinical guideline for ME in Ireland. There is  no specialist care pathways for people with M.E. and Severe M.E.

      There is currently no knowledge among health and social care professionals.

      There is currently no education or training for health and socail care professionals.

·     There is no factual collation of data on numbers with the condition here in Ireland.

·      The Royal Academy of Medicine in Ireland concluded in a published paper on M.E. in Sept 2010 [2] “There is a need for further education of the medical progression on this debilitating condition and there is clearly a need for further research into treatment which directly impacts upon the quality of sufferers”.

Contents

1.         What is M.E.?

2.         Cardinal feature & common symptoms

3.         What is CFS?

4.         Problems with Diagnosis

5.         How is M.E. diagnosed in Ireland?

6.         What does the HSE say about M.E.?

7.         What is Graded Exercise Therapy (GET) 

   & why is it unsuitable for people with M.E.?

8.         Current biological research

9.         What do Irish doctors know about M.E.?

1o.       Recommendations  

11.       Commitment  

 

 

1 What is ME?

Myalgic Encephalomyelitis (M.E.) is an acquired complex neurological condition 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 initial infection but instead go on to develop a wide variety of symptoms including the body’s inability to produce enough energy to function.

Energy is needed to fuel the body’s internal functions. Cells cannot survive on their own. They need energy to stay alive. They need energy to perform functions such as growth, maintaining balance, repair, reproduction, movement, cognitive function and defence. All living organisms must obtain and use energy to live.

All body organs work through receiving an energy supply. If the energy supply is impaired in any way the body’s organs will deteriorate over time.

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.

People with Myalgic Encephalomyelitis share similar pathologies to Multiple Sclerosis (MS) including impaired ATP.

http://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-11-205

Let us give an example of the effect of lack of ATP production on one vital organ - the brain. Lack of cellular energy causing poor production of ATP will start out by the patient showing cognitive issues 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. 

M.E. is a multi-system illness, negatively impacting on all systems of the body.

Marked debilitating exhaustion and weakness, sickness, cognitive dysfunction and symptom flare-up follows any physical or cognitive exertion requiring energy. This aspect of M.E., referred to as Post Exertional Neuroimmune Exhaustion (PENE), or as Post Exertional Malaise (PEM), is a cardinal symptom of M.E. 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 confined to bed and carer dependent for years.

Myalgic Encephalomyelitis may occur as an outbreak that affects a large group of people (epidemically) 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2425309/

Or it 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 when it was named by Dr. Melvin Ramsay. 

http://www.cfids-me.org/ramsay86.html

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.

http://www.europarl.europa.eu/sides/getDoc.do?pubRef=-//EP//TEXT+WQ+E-2013-003090+0+DOC+XML+V0//EN&language=lt

2 Cardinal Feature & Common Symptoms 

      The cardinal feature of M.E. is Post Exertional Neuroimmune Exhaustion - PENE as per the ICC, (often referred to as PEM or PESE by others). Along with PENE the most common symptoms as per feedback from the M.E. community are: 

     No energy, muscle weakness, pain: can be partial or all over body pain (chronic nerve pain, crushing pain, global wide-spread pain, muscle pain, joint pain, jolts of pain, painful feet, glandular pain, stabbing pain, sharp pain, aching, skin pain, head pain, neck pain, eye pain), cognitive dysfunction (an inability to follow conversation, lack of ability to process information, loss of ability to plan, loss of ability to think, loss of memory, forgetfulness, loss of speech, forgetting names, not recognising faces, word loss, inability to understand, difficulty retaining information, difficulty concentrating), paralysis -total or partial especially in those with Severe/Very Severe /Profound M.E.; severe headaches, migraine, tinnitus, restless legs, compromised immune system & repeated infections, extreme exhaustion, sleep difficulties: insomnia, sleep disruption, unrefreshing sleep, sleep apnoea, no restful sleep; multiple sensitivities: - hyperacusis (noise sensitivity), photophobia (light sensitivity), hypersensitivity to smells, drug sensitivity, hyperesthesia (touch sensitivity), movement sensitivity, motion sensitivity, visual disturbance (staring, inability to focus, poor spatial recognition, fuzzy/ blurred vision, double letter vision, tunnel vision), swollen glands, dizziness, vertigo, light-headedness, low and/or high blood pressure, heart issues (palpitations, cardiomyopathy, bradycardia, tachycardia; temperature control problems/ dysregulation (too hot or cold) and temperature fluctuations, heat intolerance, cold intolerance, sensory overload, severe sensory issues, orthostatic intolerance, POTS, dysautonomia, dystonia, loss of balance, poor/loss of co-ordination, Raynaud’s phenomenon (poor circulation in fingers and toes), sore throat, hoarseness, endocrine dysfunction, TMJ, trigeminal neuralgia, occipital neuralgia, chest pain, inflammation, breathing difficulty, air hunger, pins and needles, pingling, peripheral neuropathy, tremor, muscle spasms (shaking), muscle twitching, violent, uncontrollable ‘tics’ in limbs, lack of strength, nausea, vomiting, gastric issues, swallowing difficulties, choking, acid reflux, IBS, gut and bowel issues, food allergy, food sensitivity, malabsorption issues, allergies (multiple), oxygen depletion, numbness, inability to hold things, inability to lift things, loss of touch, loss of taste, no strength, lack of stamina, severe thirst, dehydration, flu-like symptoms, chronic infections, slow recovery from colds/flu, fevers, bladder and bowel dysfunction....

The danger is that the long list of symptoms above can still, unintentionally, underplay their severity and seriousness, the totally disabling nature and the individual intensity of each one, which together add up to a physical nightmare of indescribable proportion for a person with M.E. and more especially in Severe M.E.

 

The daily reality of people living with Severe M.E. is much worse than not having the 'basic energy' to engage in daily tasks, while that of people with Very Severe/Profound M.E. is so horrendous, there just aren't words to describe how awful the disease is - pain, paralysis, cognitive issues, multiple hypersensitivities, profound system dysfunction, malnutrition, and many more life limiting symptoms.

Much like the disease Multiple Sclerosis, people can be affected in different ways and experience different severities. Severe cases often leave affected individuals confined to bed, needing tube feeding and 24 hour care. Less severe cases are usually confined to their home living without the 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 always very limited, and any task involves pacing and prolonged resting to restore enough energy for the next task.

3  What is CFS?

Many people, including healthcare professionals, use the terms M.E. (Myalgic Encephalomyelitis) and CFS (Chronic Fatigue Syndrome) interchangeably, or use the hybrid term M.E./CFS to describe the same condition.  Some patients, clinicians, and researchers prefer one term over the other.

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 on the fatigue elements of patients' symptoms and ignored the encephalitic (inflammation of the brain) and other serious features of the disease. 

The name 'CFS' trivialised the seriousness of how ill these patients were and over time led to more and more people, with fatigue as their primary symptom receiving a diagnosis of 'CFS'. And so, began the confusion between M.E. and CFS leading to a commonly used hybrid term ME/CFS.

Unfortunately, many CFS patients do not fulfil the criteria for M.E., and many patients with M.E. have received a CFS diagnosis that does not accurately reflect the nature or complexity of their condition, nor distinguish them from the broader CFS patient population.

Over decades this conflation of the two illnesses has led to underfunding for research, lack of research, lack of education about M.E. and Severe M.E., resulting in the neglect of people with M.E., people who are suffering horrendously debilitating symptoms and whose doctors only see a patient who has unexplained 'fatigue'. 

The distinction between M.E. and CFS has continued to cause problems for researchers, doctors, governments, health agencies 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. There is no disease classified as ME/CFS.

ME Advocates Ireland (MEAI) use the Myalgic Encephalomyelitis (M.E.) label.

We do not use 'CFS' as per Fukuda, 'M.E./CFS' as per the Canadian Consensus Criteria (CCC), or 'SEID' (NAM) as a name for M.E. We acknowledge that the mixed soup of various criteria available worldwide has led to confusion, lack of healthcare and treatment, and lack of sufficient research on M.E., however,

• we acknowledge that people with M.E. or CFS in Ireland have been diagnosed with either the M.E. or CFS label or with the hybrid M.E./CFS;

• we acknowledge that others in Ireland and elsewhere use the CFS and M.E./CFS labels and we do not wish to withhold support from those who have been given a diagnosis of CFS, or M.E./CFS;

• we appreciate that the CFS label is used to refer to M.E. in general in other countries but are unsure if those that are diagnosed with CFS are actually receiving appropriate treatment;

• we recognise that the CFS or M.E./CFS label is used throughout international research but again are not sure what patients are being identified for research purposes and on what criteria their diagnosis is based;

• we acknowledge that conflated labels such as M.E./CFS and CFS/M.E. are used by others though we do not use them;

• we recognise that the CFS/M.E. label has been promoted largely by advocates of the psychosomatic model and their associates, whose approach has shaped policy, research, and clinical practice in ways that many patients and clinicians believe have hindered progress in understanding and treating M.E.;

• we recognise that it is critical that there is more biomedical research to further investigate and validate our understanding of M.E. and to increase knowledge of the different sub-groups of M.E.

The problem with 'Fatigue'

Both the Oxford and Fukuda criteria have been criticised because neither requires post-exertional malaise (PEM), which is now widely regarded as a core feature of M.E.

Their emphasis on “fatigue” has, unfortunately, enabled Myalgic Encephalomyelitis (M.E.) to become progressively obscured - frequently conflated with Chronic Fatigue Syndrome (CFS) and, in some cases, framed as a psychiatric condition. 

This mischaracterisation has had serious consequences. Many patients with severe, underlying physiological illness have been denied proper recognition of their disease, resulting in inadequate diagnosis, insufficient testing, inappropriate or absent treatment, and widespread misunderstanding of both symptom complexity and disease severity. 

Most critically, this framing has contributed to a persistent lack of interest and investment in rigorous biological research into the condition.

4  Problems with Diagnosis  

There is a myth that M.E. is difficult to diagnose because 'tests' don't show anything wrong with the patient. 

People with M.E. are often given a diagnosis of 'CFS', or 'Post Viral Fatigue Syndrome' or ‘Chronic Fatigue’, making it look like they are just 'tired' people and dismissing the seriousness of the disease. 

The multitude of diagnostic criteria developed for M.E. and CFS has created a confusing and often inconsistent diagnostic landscape, leading to misclassification of patients, difficulties in clinical care, and research findings that are frequently difficult to interpret or compare.

The history of diagnostic criteria illustrates the challenge of defining a complex illness for which no definitive biomarker yet exists.

Understanding the Different Diagnostic Criteria for M.E. and CFS

NICE ng 206 (2021)*

The 2021 NICE guideline is a major milestone because it marks a significant shift away from the Oxford model and towards recognition of post-exertional malaise (PEM) as a core feature of the illness. For many patients and clinicians, the NICE 2021 guideline represents an important step forward because it aligns more closely with contemporary understanding of M.E. as a serious, chronic, multisystem illness while moving away from earlier fatigue-based definitions that have been criticised for being overly broad.

In October 2021, the UK's National Institute for Health and Care Excellence (NICE) published a revised guideline for the diagnosis and management of ME/CFS. The guideline followed an extensive review of the scientific evidence and consultation with clinicians, researchers, and patient groups.

The 2021 guideline represented a significant departure from previous approaches to the illness. Most notably, it recognised post-exertional malaise (PEM) as a core diagnostic feature and concluded that Graded Exercise Therapy (GET) should not be offered as a treatment for ME/CFS. NICE also clarified that Cognitive Behavioural Therapy (CBT) should not be presented as a cure or treatment for the underlying disease but may be offered as supportive therapy to help patients manage the impact of living with a chronic illness.

*NICE ng 206 (2021) is not itself a diagnostic criterion like ICC, CCC. Fukuda or Oxford. It is a clinical guideline that contains diagnostic requirements. It belongs in the this section but occupies a slightly different category.

International Consensus Criteria (2011)

The “Myalgic Encephalomyelitis – International Consensus Criteria (M.E. ICC)” advocates for removing fatigue as a characteristic symptom and defines the disease as an acquired neurological disease with complex global dysfunctions. 

The M.E. ICC also defines specific symptom requirements: the cardinal feature post-exertional neuroimmune exhaustion (PENE), and neurological impairments, immune, gastrointestinal, and genitourinary impairments, and energy metabolism impairments. 

Many worldwide experts, including Ireland’s Prof Austin Darragh, came together and produced the comprehensive Myalgic Encephalomyelitis International Consensus Criteria (2011) – ICC-M.E. for diagnosis, treatment and management of M.E. 

Please see the ICC 2011 here.

Canadian Consensus Criteria (2003)

The pre-runner to the ICC M.E. was the Canadian Consensus Criteria (2003). CCC M.E.
http://www.ahmf.org/me_cfs_overview.pdf 

The Canadian Consensus Criteria define M.E. 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. 

Fukuda (1993)

The Fukuda criteria was developed by the CDC in the USA after an outbreak at Lake Tahoe.  

https://www.cdc.gov/cfs/case-definition/1994.html 

These criteria became the most widely used research definition internationally for many years. They required chronic fatigue plus at least four of eight specified symptoms, but notably did not require post-exertional malaise. These criteria are used to define Chronic Fatigue Syndrome. 

As Post Exertional Neuroimmune Exhaustion (PENE), also referred to as Post Exertional Malaise (PEM), is not a mandatory criterion 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. 

Oxford (1991)

In the UK, the Oxford criteria for chronic fatigue syndrome (CFS) were developed by a research group led primarily by psychiatrists. The criteria have since been widely criticised for being overly broad and for failing to distinguish adequately between M.E. and other causes of chronic fatigue.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1293107/pdf/jrsocmed00127-0072.pdf

These criteria are far less rigorous and may include patients with fatigue as their only symptom - they defined CFS broadly, requiring mainly unexplained, disabling fatigue of at least six months' duration.

There are a myriad of illnesses which can have fatigue as a primary symptom, e.g. MS, Lupus, Fibromyalgia, cancer, heart disease, etc, so the possibility for misdiagnosis is very high and the research criteria used results in a mix of patients with a range of illnesses. 

The Oxford criteria, developed in the UK in 1991, defined chronic fatigue syndrome so broadly that many researchers and patient organisations argued they failed to distinguish ME from other causes of chronic fatigue. Although these criteria have since been largely abandoned in favour of definitions that require post-exertional malaise, they exerted a significant influence on clinical practice and policy in both the UK and Ireland, including earlier HSE guidance.

To further explain how this criteria is viewed by international experts, in July 2016, the Agency for Healthcare, Research and Quality in the USA issued an addendum to its Evidence Report recommending the retirement of the Oxford criteria for M.E./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 Neuroimmune Exhaustion (PENE), also referred to as PEM, which is considered a hallmark of M.E. 

Please see Introduction paragraph:

https://effectivehealthcare.ahrq.gov/ehc/products/586/2004/chronic-fatigue-report-160728.pdf 

Other Criteria which have also raised concerns are: 

Holmes (1988) were considered too restrictive and complex, requiring a large number of symptoms and, in some cases, specific physical signs or laboratory abnormalities. As a result, many genuine patients did not meet the criteria, limiting their usefulness in both research and clinical practice.

Institute of Medicine (2015) (IOM; now National Academy of Medicine) criteria, introduced the term "Systemic Exertion Intolerance Disease" (SEID). The IOM criteria (later called SEID criteria) were praised for making post-exertional malaise (PEM) a core requirement, but critics argued that they were too broad and could potentially include patients with other illnesses. Some also objected to replacing M.E. with the term "Systemic Exertion Intolerance Disease (SEID)," which was never widely adopted.

5  How is M.E. diagnosed in Ireland?

Historically, HSE guidance on M.E. drew heavily on guidance developed in the UK. As a result, diagnostic approaches used in Ireland have been influenced by case definitions such as the Oxford criteria, which have been the subject of significant debate and criticism within the international ME community.

One of the principal criticisms of the Oxford criteria is that they do not require the presence of post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), as described in some case definitions as a mandatory diagnostic feature. This is particularly controversial because PEM/PENE is regarded by many clinicians, researchers, and patient organisations as the hallmark symptom of M.E.

The absence of a requirement for PEM/PENE has raised concerns that broad fatigue-based criteria may identify a heterogeneous patient population, potentially including individuals with a variety of different conditions. Patients and advocates have argued that this can lead to inconsistent diagnosis, difficulties in research, and an under-recognition of the distinctive features of M.E.

Many patients report receiving an M.E. or CFS or ME/CFS diagnosis based primarily on the presence of chronic fatigue and a selection of non-specific symptoms. As a result, some of the more characteristic and disabling features of M.E. may be overlooked, attributed to separate conditions, or considered in isolation rather than as part of a complex multisystem illness. This has led to concerns about the potential for both misdiagnosis and delayed diagnosis.

Patients with M.E. have also reported encountering limited awareness and understanding of the illness within parts of the healthcare system, which can contribute to difficulties in obtaining appropriate diagnosis, support, and management.

Ireland was once fortunate to have clinicians and researchers with recognised expertise in M.E., including Austin Darragh, who contributed to the development of the International Consensus Criteria (ICC) in 2011. However, much of this expertise has been lost through retirement and the passing of key individuals, without a corresponding development of specialist services or training pathways.

As a consequence, concerns remain regarding the availability of specialist knowledge, clinical education, and diagnostic expertise in M.E. within Ireland today - patients and advocates have expressed concern that M.E. receives limited coverage in undergraduate and postgraduate medical education.

6  What does the HSE say about M.E.?

Prior to April 2017, searches on the HSE website for "Myalgic Encephalomyelitis" (M.E.) directed users to information on Chronic Fatigue Syndrome (CFS). At that time, the website treated the terms M.E. and CFS as broadly synonymous.

This approach reflected a wider historical tendency within healthcare systems to group M.E. and CFS together under a single diagnostic label, despite ongoing debate regarding the relationship between the two conditions and the criteria used to define them.

Patients and advocates have expressed concern that M.E. has received limited attention within medical education and clinical training in Ireland. As a result, many healthcare professionals may have had little exposure to the illness during their training and may be unfamiliar with contemporary diagnostic criteria and management approaches.

Concerns have also been raised regarding the lack of dedicated specialist services, clinical pathways, and national guidance for people with M.E. in Ireland. This has contributed to significant variation in clinical practice and in patients' experiences of diagnosis and care.

There are, however, signs of progress. Work is currently underway within the HSE to develop Irish clinical guidelines for M.E., under the leadership of the Chief Clinical Officer, Colm Henry. Patients and advocates hope that this process will lead to improved recognition of M.E. and more consistent standards of diagnosis, treatment, and support across the healthcare system.

Prior to April 2017, if someone had searched for information on the HSE website with the words 'Myalgic Encephalomyelitis' or M.E.’ they were brought straight to information about Chronic Fatigue Syndrome. The website at the time conflated the two conditions.

M.E. is not taught in our medical schools and many doctors are not aware of its existence or the fact that it is a distinct illness listed under neurological conditions in the WHO classifications, completely separate from the entity CFS. 

Those medical professionals who are aware of M.E. have not been trained about M.E. so don’t know how to manage it. There are no guidelines, no policy, no specialist healthcare pathways .

There is currently an HSE project developing national clinical guidelines for M.E. under the HSE CCO, Colm Henry.

7 What is Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy?

Prior to April 2017, the HSE website included recommendations for Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) as treatments for M.E. These recommendations reflected approaches that were widely promoted in the UK and elsewhere for many years.

However, both interventions have become increasingly controversial, particularly in relation to people with Myalgic Encephalomyelitis (M.E.). Patient surveys and clinical experience have consistently reported that programmes based on increasing activity levels can lead to worsening symptoms in some patients, particularly those who experience post-exertional malaise (PEM), the hallmark feature of M.E.

Graded Exercise Therapy is based on the premise that patients can gradually increase their activity and exercise levels over time. Critics argue that this approach does not adequately account for the abnormal physiological response to exertion experienced by people with M.E. As a result, some patients report significant deterioration in their health following exercise-based programmes, including increased disability and loss of function.

These concerns contributed to a major review of the evidence by the UK's National Institute for Health and Care Excellence (NICE). In its 2021 guideline, NICE concluded that Graded Exercise Therapy should not be offered as a treatment for ME/CFS and explicitly advised against programmes based on fixed incremental increases in activity or exercise.

Similarly, NICE states that Cognitive Behavioural Therapy (CBT) should not be offered as a cure or treatment for the underlying illness. While CBT may be helpful for some individuals as a supportive therapy to assist with coping, adjustment, or managing the psychological impact of living with a chronic illness, it does not address the underlying disease process of M.E.

Many people with M.E. experience severe functional limitations that make attendance at regular appointments difficult or impossible. For those who are housebound or bedbound, healthcare services should be delivered in a manner that accommodates their illness and energy limitations. Any psychological support offered should be patient-centred, optional, and based on individual need rather than assumptions about the nature of the illness.

As understanding of M.E. has evolved, there has been growing recognition that management should focus on symptom relief, energy management, prevention of post-exertional symptom exacerbation, and appropriate medical support, rather than exercise-based rehabilitation programmes.

Graded exercise therapy (GET) and cognitive behavioural therapy (CBT) must not be offered as treatments for M.E. as per NICE Guidelines Oct 2021. 

CBT as a treatment is not an effective tool. While it may be useful as an adjunct therapy (as with many other chronic illnesses) it should not be recommended as a primary treatment.

Many people with M.E. cannot get out of their beds or homes and to set them up with therapist appointments which they cannot possibly attend (or cause them severe crashes and relapses) amounts only to cruelty. If patients want to have psychological therapy to help them cope with their illness, then that should be their choice and something that they request for themselves, as is the case with any other illness. 

The avoidance of future recommendations of these two treatments, GET and CBT, is imperative for the safety of adults and children with M.E.

7.   More about the harms of Graded Exercise Therapy (GET)

GET means Graded Exercise Therapy, the principle of which is for the patient to increase their exercise over time even if they feel very unwell from doing so. The principle behind prescribing GET for those with M.E. is an underlying belief that the ongoing symptoms are due to false illness beliefs and deconditioning. 

Graded Exercise Therapy became underpinned by the NHS after a large trial was conducted in the UK to establish whether CBT and GET were effective treatments for M.E. The trial was known as the PACE Trial. The authors were among a prominent group of British mental health professionals, and their associates, who had long argued that the devastating symptoms of M.E. were caused by false illness beliefs and severe physical deconditioning.

They recognized that many people experienced an acute viral infection or other illness as an initial trigger. However, they believed that a syndrome was perpetuated by patients’ “unhelpful” and “dysfunctional” notion in that they continued to believe they suffered from an organic disease and that exertion would make them worse. According to these psychiatry ‘experts’, patients ‘decisions’ to remain sedentary for prolonged periods led to muscle atrophy and other negative systemic physiological impacts, which then caused even more fatigue and other symptoms in a self-perpetuating cycle.

Biological studies however have shown that M.E. is characterized by immunological and neurological dysfunctions, and many academic and government scientists say that the search for organic causes, diagnostic tests and drug interventions is paramount. 

In contrast, the British mental health experts focused on non-pharmacological rehabilitative therapies, aimed at improving patients’ physical capacities and altering their perceptions of their condition through behavioural and psychological approaches. The PACE trial was designed to be a definitive test of two such treatments they had pioneered to help patients recover and get back to work. British government agencies, eager to stem health and disability costs related to the illness, committed five million pounds to support the research.

There was a great fanfare among the psych cabal and their associates when the results of the trial were published and showed that 22% of people in the two rehabilitative treatment arms had achieved 'recovery'.

However, since then the trial has been completely debunked by many scientists around the world. It was revealed that the Principal Investigators of the trial had altered the primary outcomes in their original 'recovery' protocols halfway through the trial so much so that 13% of the trial participants could have simultaneously qualified as being disabled enough to enter the trial and recovered after the trial.

Suffice to say that applying the original recovery outcomes of the trial had a null effect. Despite that, however, the authors (who had considerable influence and power in media, government, insurance companies and the UK establishment) were able to control the media message and perpetuate the myth that the illness was fundamentally perpetuated by unhelpful illness beliefs.

There is much written about this trial and the calls for its retraction. We are providing two links. The first is a link to a recently published peer reviewed article which concludes:

“The claim that patients can recover as a result of CBT and GET is not justified by the data, and is highly misleading to clinicians and patients considering these treatments.”

http://www.tandfonline.com/doi/full/10.1080/21641846.2017.1259724

The second link below is to an article published on April 4^th, 2017 which explains, in an easy to understand way, the flaws of the PACE Trial and why it has been so damaging for people with M.E. The article concludes:

“Studies like the PACE Trial can have a strong impact on patient care, and flawed studies can result in harm to patients. Conventional peer review is obviously not enough; the effective peer review in this case came after publication. Numerous flaws were found that should have been addressed before publication. Critics called for the study to be retracted; so far it hasn’t been. This unfortunate episode can serve as a wake-up call and it points out the value of freely sharing raw data with other researchers. Good scientists want to know if they are wrong. They want to have their work scrutinized and should be willing to share their data without the requesters having to resort to a court order”.

https://sciencebasedmedicine.org/treating-chronic-fatigue-syndrome-with-cognitive-behavioral-therapy-and-graded-exercise-therapy-how-the-pace-trial-got-it-wrong/

8 Current biological research

The view that M.E. is primarily a self-perpetuating or psychosocial condition continues to influence discussion of the illness in some quarters. For many years, this perspective received significant attention in parts of the medical, academic, and media communities, particularly in the UK, contributing to ongoing debate about the nature and management of M.E.

At the same time, a growing body of biomedical research has identified abnormalities across multiple physiological systems, including the immune, neurological, autonomic, metabolic, and cardiovascular systems. Thanks to the dedication of researchers, clinicians, and patient advocates around the world, our understanding of the biological basis of M.E. has advanced considerably, bringing us closer to a fuller understanding of the disease mechanisms involved.

Patients owe a great deal to those scientists and clinicians who have pursued rigorous biomedical research despite limited funding and considerable challenges. Indeed, patient communities and charities worldwide have played an important role in supporting and funding research efforts aimed at improving diagnosis, understanding the underlying pathology, and ultimately developing effective treatments for M.E.

Summary of significant findings in research into M.E. (updated March 2025)

 

Colleen Steckel (US) is tracking research publications that are most likely to apply to Myalgic Encephalomyelitis (ME) patients. Those are studies using patient selection based on the International Consensus Criteria (ME-ICC) and/or the Canadian Consensus Criteria (ME/CFS-CCC).

ME-ICC research - patients in this research fit the International Consensus Criteria and possibly other criteria: 

https://drive.google.com/file/d/1YxFB3LBb3FODLYmjtFQqW0WCzHKFP7GE/view

 

ME/CFS-CCC research - patients in this research fit the Canadian Consensus Criteria and possibly other criteria: 

 

https://drive.google.com/file/d/19dby_OY_wRuZoL6YxTRifiQxsjO7iPJ8/view?pli=1

Both lists have been updated and are current as of March 11, 2025. These lists may not include every paper written. 

Our thanks to Colleen Steckel who regularly updates research lists and makes them available via her own blog 'View from the Trenches'.

 

C

More about research and studies included here 

9  What do Irish doctors know about ME?

Despite growing international recognition of Myalgic Encephalomyelitis (M.E.) as a serious, complex, multisystem disease, awareness and understanding of the illness within the Irish healthcare system remain limited.

Historically, many healthcare professionals in Ireland have had little formal education or training in M.E. As a result, knowledge of the illness, its diagnostic criteria, and its management can vary considerably between clinicians. Patients frequently report difficulties finding healthcare professionals with experience or expertise in M.E., leading to delays in diagnosis and inconsistencies in care.

Ireland currently lacks dedicated specialist services for M.E., as well as clearly defined clinical pathways, specialist consultants, and clinical leadership structures within the healthcare system. Consequently, patients often struggle to access coordinated care and support for what can be a profoundly disabling condition.

Patient experiences also highlight ongoing challenges in healthcare settings. Many report encountering healthcare professionals who are unfamiliar with M.E. or who have limited understanding of its clinical presentation. Such experiences can leave patients feeling misunderstood and may contribute to delays in appropriate assessment, management, and support.

While a number of GPs have developed expertise in M.E. and provide excellent care to their patients, they often do so without access to specialist referral pathways, national clinical guidelines, or dedicated support services. This places significant pressure on both patients and primary care practitioners.

The consequences of these gaps in knowledge and services can be substantial. People with M.E., particularly those with severe disease, may experience prolonged periods without appropriate medical support, symptom management, rehabilitation planning, or social care assistance. Some patients seek expertise abroad where resources permit, while others remain largely unsupported within the healthcare system.

M.E. affects both adults and children and can have a profound impact on education, employment, family life, and quality of life. The development of HSE national clinical guidelines, improved professional education, specialist services, and clear care pathways therefore represents an important opportunity to improve outcomes for patients and ensure that people living with M.E. receive the recognition, understanding, care, and support they deserve.

10  Recommendations

ME Advocates Ireland (MEAI) calls for a coordinated national response to Myalgic Encephalomyelitis (M.E.) that reflects current scientific understanding of the illness and addresses the significant unmet needs of patients and families.

1. Develop and Implement National Clinical Guidelines

• Publish evidence-based Irish clinical guidelines for M.E. informed by current international best practice.
• Ensure that post-exertional neuro-immune exhaustion (PENE), also referred to as post-exertional malaise (PEM), is recognised as a core diagnostic feature.
• Provide clear guidance on diagnosis, symptom management, severe M.E., paediatric M.E., and hospital care.

2. Establish Specialist Clinical Services

• Develop specialist multidisciplinary M.E. services for adults and children.
• Ensure access to specialist assessment, diagnosis, symptom management, rehabilitation support, and social care.
• Provide outreach and home-based services for housebound and bedbound patients.

3. Improve Medical Education and Professional Training

• Incorporate M.E. into undergraduate and postgraduate medical education.
• Provide continuing professional development (CPD) training for GPs, consultants, nurses, allied health professionals, and emergency department staff.
• Promote awareness of the latest biomedical research and clinical guidance.

4. Create Clear Care Pathways

• Establish nationally agreed referral and care pathways for suspected and confirmed M.E.
• Improve coordination between primary care, hospital services, disability services, and community supports.
• Ensure patients can access appropriate investigations and specialist referrals when required.

5. Improve Care for Severe and Very Severe M.E.

• Develop specific protocols for the assessment and management of severe and very severe M.E.
• Ensure healthcare professionals understand the risks associated with sensory overload, orthostatic intolerance, malnutrition, and post-exertional deterioration.
• Provide access to home visits and community-based care where necessary.

6. End Outdated and Harmful Practices

• Ensure that Graded Exercise Therapy (GET) is not offered as a treatment for M.E.
• Recognise that Cognitive Behavioural Therapy (CBT) may be helpful as supportive therapy for some patients but should not be presented as a cure or treatment for the underlying disease.
• Promote energy management and pacing approaches that respect the limits imposed by post-exertional malaise.

7. Support Biomedical Research

• Increase investment in biomedical research into the causes, mechanisms, diagnosis, and treatment of M.E.
• Encourage Irish participation in international research collaborations.
• Support the development of biomarkers and objective diagnostic tools.

8. Improve Data Collection and Epidemiology

• Establish national data collection on M.E. prevalence, severity, outcomes, and service use.
• Improve understanding of the impact of M.E. on education, employment, disability, and healthcare utilisation.

9. Recognise the Needs of Children and Young People

• Ensure timely diagnosis and support for children with M.E.
• Develop appropriate educational supports and accommodations.
• Provide specialist paediatric services and family-centred care.

10. Involve Patients in Policy and Service Development

• Ensure meaningful involvement of people with M.E. and patient organisations in the design of services, guidelines, research priorities, and policy development.
• Adopt a partnership approach that recognises the expertise gained through lived experience.

11. Develop a National M.E. Strategy

• Create a national framework for M.E. that brings together healthcare, education, social protection, disability services, and research.
• Set measurable targets for improving diagnosis, care, education, and patient outcomes.
• Report publicly on progress and implementation.

Updates 

NICE Guidelines (UK) October 29th, 2021

The UK National Institute for Health and Care Excellence (NICE) has on 29th October 2021, published a new guideline (NG206) for diagnosis and management of Myalgic Encephalomyelitis (M.E.). This replaces the dangerously flawed guideline published in 2007.

Important Inclusions

• The NICE Guideline 2021 (NG206) states that M.E. is a complex condition where there is no “one size fits all” approach to managing symptoms.

• The NICE Guideline 2021 (NG206) recommends a route to earlier diagnosis for those with M.E.

• Graded exercise therapy (GET) and cognitive behavioural therapy (CBT) cannot now be offered as treatments for M.E. The new guidelines echo the longstanding views of many people with M.E, their carers and families.

Crucial Points 

The revised guideline, the NICE Guideline 2021 (NG206) for Myalgic Encephalomyelitis (ME) published on October 29th 2021 is a small but welcome step.

The revised guideline is only a very small attempt to undo the damage done by inaction, ignorance, gaslighting and negligence since 2007.  

The removal of the most harmful treatment recommendations (GET & CBT) is a significant milestone. However, the revised guideline is very far from ideal. There is still a long way to go to provide complete and appropriate guidelines and policy development for M.E. and particularly for Severe M.E., which would include information about specialist care for Severe M.E. including care and special accommodations for malnutrition, and other serious aspects of Severe ME, and a line on the dangers and inappropriateness of all behavioural therapies. 

It remains to be seen how implementation of the NICE Guideline 2021 will work in the UK.

Even well before the release of the new guidlines, worrying evidence emerged about how GET, now removed, was already being repurposed by certain quarters (psych) in treating patients at clinics in the UK and the new label that is being used is Graded Activity Management (GAM). 

Even more worrying is the response by some stakeholders, i.e. the Royal Colleges, who, immediately following the publication of the new NICE Guidelines, indicated that they do not agree with the new guideline and will continue to promote their own brand of exercise and cbt treatments.

October 2021

Appendix 1

Glossary

M.E.                                                    Myalgic Encephalomyelitis

CFS                                                    Chronic Fatigue Syndrome

WHO                                                  World Health Organisation

CBT                                                    Cognitive Behaviour Therapy

GET                                                    Graded Exercise Therapy
PENE                                                  Post Exertional Neuroimmune Exhaustion

PEM                                                    Post Exertional Malaise

HSE                                                    Health Services Executive

ICC-ME                                              International Consensus Criteria for ME

CCC-ME                                            Canadian Consensus Criteria for ME

CDC                                                   Centres for Disease Control & Prevention, USA

AHRQ                                                Agency for Healthcare Research & Quality, USA

IOM                                                    Institute of Medicine, USA

NHS                                                   National Health Service, UK

                       

[1] Based on figures extrapolated from data in other countries, and using the international prevalence rate 1-2% of population. 

[2] A National cross-sectional survey of diagnosed sufferers of Myalgic Encephalomyelitis/chronic fatigue syndrome: pathways to diagnosis, changes in quality of life and service provision, C. Comiskey, F. Larkan, Sept 2016

Please contact ME Advocates Ireland (MEAI) by email if you have any queries at info@meadvocatesireland.com

This page was updated in January 2026