INFORMATION PACK
The Situation of
Myalgic
Encephalomyelitis (ME) Patients in Ireland
2024
Summary
· Worldwide there are millions missing
from their previous active lives having acquired Myalgic Encephalomyelitis
(M.E.) In Ireland in 2024, there are an estimated 10,000 to 21,000 people
living with M.E. [1] These figures are extrapolations based on a comparison of prevalence rates worldwide as 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, i.e. the International Consensus Criteria - M.E. 2011. 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 an
acquired chronic neurological illness 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 about M.E.
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.
· Life expectancy is shortened as
deterioration becomes cumulative.
· There are
NO M.E. specialist hospital consultants in Ireland.
· The HSE
have failed abysmally to adopt and put in place appropriate diagnostic criteria and proper specialist care plan pathways for people with M.E. and Severe M.E.
· The ‘treatments’ suggested by the HSE have been demonstrated to be
ineffective and to cause harm to adults and children with M.E.
· 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. How is M.E. diagnosed?
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. How did the HSE get it so wrong?
10. What do Irish doctors know about M.E.?
11. Recommendations
12. Commitment
1. What is ME?
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 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.
Similar to Multiple Sclerosis, patients with Myalgic
Encephalomyelitis share many similar pathologies including impaired ATP.
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 symptoms 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), is a
cardinal symptom of people with 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)
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.
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.
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 by others); and 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 it is - pain, paralysis, cognitive issues, multiple hypersensitivities, profound system dysfunction, malnutrition, and many more horrenduous symptoms.
Much like the disease Multiple Sclerosis, people can be affected in
different ways. 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 very limited, and
each task involves pacing and prolonged resting to restore enough energy for
the next task.
3. What is CFS?
Many people, including healthcare professionals, confuse the term M.E. with C.F.S.
(Chronic Fatigue Syndrome).
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) features of the disorder. 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, to get a
diagnosis of CFS. And so, began the confusion between M.E. and CFS leading to a
commonly used hybrid term ME/CFS.
Many CFS patients do not fulfil the criteria for M.E. and similarly many
patients with M.E. have received a CFS diagnosis.
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 horrendous 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) advocate for the adoption and use of the Myalgic Encephalomyelitis (M.E.) label. We call for the separation of ‘M.E.’ from ‘CFS’.
We do not recognize CFS as per Fukuda, M.E./CFS as per the Canadian Consensus Criteria (CCC), or SEID (NAM) as an accurate diagnosis for M.E. and believe that the quagmire of the above mentioned criteria and other 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 both, i.e. 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, or advocate for their usage;
- we recognise that the CFS/M.E. label is mostly used by the psych cabal and associates who have caused so many issues around M.E. for decades;
- 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.
More here
The problem with 'Fatigue'
The emphasis on fatigue unfortunately 'allowed' M.E. to become more and more disappeared and to 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.
4. 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 ‘Chronic Fatigue’, making it look like patients are just 'tired' people.
Many worldwide experts (including Ireland’s Prof Austin Darragh)
came together and produced comprehensive diagnostic criteria called the Myalgic Encephalomyelitis International Consensus Criteria (2011) – ICC-M.E. Please see the ICC 2011 here.
The “Myalgic Encephalomyelitis – International Consensus Criteria
(M.E. ICC)” advocates for removing fatigue as a characteristic symptom and
defines the disorder as an acquired neurological disease with complex global dysfunctions.
The M.E. ICC also defines specific symptom requirements: post-exertional
neuroimmune exhaustion (PENE), neurological impairments, immune, gastrointestinal, and
genitourinary impairments, and energy metabolism impairments.
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
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.
The Fukuda et al. (1994) criteria was developed by the CDC in the USA
after the outbreak at Lake Tahoe.
https://www.cdc.gov/cfs/case-definition/1994.html
These criteria are used to define Chronic Fatigue Syndrome. As Post
Exertional Neuroimmune Exhaustion (PENE) 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.
In the UK however, other criteria were developed by a group of
psychiatrists - called the Oxford Criteria.
These criteria are far less rigorous and may include patients with fatigue
as their only symptom. As you can imagine 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 toxic mix of patients with a range of
illnesses.
The Oxford criteria is not used anywhere else in the world and yet
the HSE previously adopted them straight from the UK as if they are the best way to
diagnose people with M.E.
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) which is considered a hallmark of M.E.
Please see
Introduction paragraph of the following: https://effectivehealthcare.ahrq.gov/ehc/products/586/2004/chronic-fatigue-report-160728.pdf
As you can glean from the above, the research criteria used for M.E. can vary
enormously from country to country and medical discipline to medical
discipline. The Oxford criteria developed by the UK psychiatrists is unfit for
use and cannot be reliably extrapolated to people with M.E. because the distinct
neurological indicators of the disease are ignored and excluded.
What is the problem in Ireland?
It is these criteria upon which the HSE diagnostic and treatment guidelines have been based.
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 new diagnostic criteria very similar to the CCC of 2003 mentioned above and lists Post Exertional Malaise as a mandatory
criterion for diagnosis. Howevere, it does not list
5. How is M.E. diagnosed in Ireland?
The HSE guidelines used anywhere within the HSE are a cut and paste edit of the NHS guidelines in the UK
which is based on the Oxford Criteria and problematically does not require Post Exertional Neuroimmune Exhaustion (PENE) as a mandatory diagnostic symptom.
How can a condition that has PENE as
a CARDINAL SYMPTOM not require the same symptom to be present for
diagnosis?
Given the feedback from ME patients it seems pretty clear that people get an 'ME/CFS' diagnosis here based loosely on the Oxford criteria which focuses
primarily on fatigue which has lasted for more than six months, and one of a
selection of other symptoms which are generic to many other conditions. This
‘criteria’ means that the other common and more serious symptoms of M.E. often get ignored or
disregarded, or are treated as separate conditions with no one looking at the
whole system and the whole illness. One can only imagine the number of misdiagnoses that this is creating.
Patients
with M.E. are often met with dismissal and denial of their condition due to the
lack of knowledge within the HSE.
Some patients however, particularly those who have the illness much
longer, received an M.E. diagnosis when there were
experts in the field here in Ireland, including our very own Professor Austin
Darragh, (RIP) who was one of the authors of the M.E. ICC in 2011.
Unfortunately, that expertise no longer exists and has been allowed to
disappear as experts here retired or passed away and were not replaced. M.E.,
for example, no longer features in education in medical schools.
6. What does the HSE say about M.E.?
Prior to April 2017, when members of ME Advocates Ireland (MEAI) and other M.E. patients had success getting the HSE to remove inappropriate information on M.E. from their website, if someone had searched for information on the HSE website with the words 'Myalgic Encephalomyelitis' or M.E.’ they were brought straight to the HSE information on Chronic Fatigue Syndrome.
The website at the time conflated the two conditions claiming that
doctors 'preferred' to use the term ‘CFS’ as opposed to M.E.
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 educated about M.E. so don’t know how to manage M.E. There are no guidelines, no policy, no specialist healthcare pathways .
The HSE website has never been updated despite the HSE now having relevant appropriate information on M.E. The website remains blank while the HSE wait for HSE Clinical Guidelines on M.E. to be created and published. There is currently an HSE project being put together to develop Irish ME clinical guidelines under the HSE CCO, Colm Henry.
Urgent
Recommendation:
We recommend that the HSE immediately addresses the fact that the section on M.E. on their website is blank, and that they need to add relevant and appropriate guidelines about M.E. to their website as per the International Consensus Criteria (ICC-ME 2011) and with reference to the ever-growing wealth of contemporary international biomedical research which supports appropriate management pathways.
7. What is Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy?
Prior to April 2017, when the HSE removed inappropriate information relating to M.E. from their website, the HSE had inappropriately recommended standard
'treatments' of psychological interventions and exercise - Cognitive Behaviour Therapy and Graded Exercise Therapy (CBT
and GET) under the heading Treatment'.
These two treatments have been proven to be both ineffectual and
harmful to people with M.E.
The current default position of many doctors is to
refer those diagnosed with M.E. to psychiatry and inappropriate physiotherapy. These referrals set up a pathway that is totally inappropriate and which blocks much needed medical investigations, multi symptom management and correct treatment paths for people with Myalgic
Encephalomyelitis.
GET, as a treatment, has been proven to seriously harm and even kill
people with M.E. as patients' bodies do not have the ability to reproduce energy so pushing their bodies beyond safe limits can end up pushing patients into a
severe case of their illness, with some patients requiring 24 hr care, confined to bed, doubly
incontinent, tubetube and having multi organ problems, and deterioration that can lead to death.
Other health agencies around the world have removed GET as a
treatment on the basis that it is firstly ineffective and secondly likely to
cause harm.
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.”
The second link below is to an article published on April 4th, 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”.
8. Current biological research
The myth that M.E. is a self-perpetuating condition continues to this
day in some quarters thanks to the control that a cabal of UK psychiatrists
have of the Science Media Centre in the U.K. The SMC controls virtually all the media message relating to M.E.
However, thanks to a growing number of exceptional scientists, M.E.
medical experts and patient advocates who have researched and delved into the
biological dysfunctions caused by M.E., we are closer than ever to finding out
the pathology of M.E.
It is to those researchers that patients owe a debt
of gratitude. Patients all around the world raise funds for biological research.
Peer reviewed biological research and articles about M.E.
Summary of significant findings in research into M.E. https://m.box.com/shared_item/https%3A%2F%2Fapp.box.com%2Fs%2F9s4coexxtys5bnz33i6gvqqygu67ex5o
More about research and studies included here
And a list of scientific articles about M.E. and Long Covid from 2024 dating back to the 1950s here
As you can see from the above linked information regarding research there are copious amounts of biological research
already carried out, some of which demonstrates that people with M.E. are harmed by
exercise and therefore to provide this as a treatment is to compound that harm
and possibly drive them into a situation of total and long-term severe
disability.
Scientific evidence from by Paul L et al demonstrates delayed
recovery from fatiguing exercise. It should
be noted that this paper was published almost 20 years ago.
https://www.ncbi.nlm.nih.gov/pubmed/10209352
9. How did the HSE get it so wrong and continue to get it so wrong?
The problem with the HSE is that they simply just copied and pasted the
UK NHS guidelines for M.E. without any reference to the ever-growing
wealth of contemporary international research which supports a very different
management pathway than that of the majority of UK services.
The HSE completely ignores the many thousand peer
reviewed scientific papers that show the biological issues involved in M.E.
Indeed, the HSE appears to ignore the fact that it is a neurological
disorder listed under the WHO G93.3.
The HSE have failed to ensure that its staff in acute and community
settings are sufficiently educated and aware of the illness, and that patients can present
from mild to severely disabled. Because of this failure, patients often
experience ignorance of the condition or dismissal of the seriousness of their
disability – indeed many patients are pressurised into agreeing to
psychological interventions or to a physiotherapy regime undertaken by those
not familiar with the disastrous consequences of PENE with a serious worsening
of all symptoms.
10. What do Irish doctors know about ME?
Many Irish doctors know very little about M.E. save what they may have read on
the HSE website prior to April 2017.
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.
There are no clinical leads in healthcare services.
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. For an illness that has been categorised by
the WHO as neurological this is beyond disgraceful.
It is very difficult to find a GP who understands M.E. or is
willing to look up the current research. While ME-aware GPs do exist here and there,
they are managing M.E. without any support or encouragement from their parent bodies
or the HSE.
This inevitably leads to the neglect of people who are extremely ill and debilitated.
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.
11. Recommendations
1. Ensure that the harmful recommendations
of CBT and GET are removed as treatment options from all HSE guidelines
2.
Adopt an accepted internationally
recognised set of diagnostic criteria (this group recommends the ME ICC) which
is sufficiently rigorous to identify research cohorts
3.
Develop an M.E. policy to include:
·
Diagnostic Protocols
·
Treatment Options
·
Management Pathways
·
Training Programmes for existing and
new HSE personnel involved in all potential aspects of patient care e.g. acute personnel, community personnel, primary care personnel, hospital personnel,
education personnel, social workers, etc
4.
The advertisement and appointment of
a consultant with extensive experience of innovative practice in M.E., who will
guide and inform the development of the HSE’s M.E. practice in Ireland in line
with the adopted International diagnostic criteria. Such practice to include
informing all relevant groups of people responsible for ensuring that a person
with M.E. is supported and managed in the most constructive and positive way
possible
5.
HSE website information to be in line
with the policy and adopted diagnostic criteria
6. We call for the withdrawal of psychiatry from front line involvement in M.E. and an end to default psych referrals by GPs and doctors/healthcare providers in hospitals and other care settings.
7. We call for funding for much more biomedical research into M.E.
12. Commitment
We require a statement from the CEO of the HSE to ‘kickstart’ policy which directs:
an innovative project to address an existing need amongst a patient cohort which the HSE has identified as urgent and in which the process of
creating a policy for Myalgic Encephalomyelitis (M.E.),and Severe M.E., by including participants from
all relevant parties, i.e., HSE employees, Patient & Carer
expertise, Clinical expertise, Patient-Advocate Representative expertise and others to exemplify ‘best practice’ as outlined in the principles of the 'National Healthcare Charter’.
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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
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 0.2 - 0.4% of population. (0.4% is used in the International Consensus Critera)
[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
Thank you so much for this overview, it is an extremely well written and informative summary. The situation in Ireland seems dire. Just a couple of observations, the daily reality of people with Severe ME is much worse than not having the “basic energy” to engage in daily tasks, while that of people with Very Severe ME is so horrendous, there just aren’t the words to describe how awful it is, the pain, the paralysis, the cognitive issues, the terrible hypersensitivities, the profound system dysfunction. Another issue is that PENE , Post Exertional Neuro-immune Exhaustion might be a more accurate, less loaded term than PEM. I don’t think you specifically call for the separation of ME from CFS, in your recommendations, neither do you call specifically for the withdrawal of psychiatry from front line involvement. That might be worth adding. What definitely needs adding, in my opinion, is the prefix “biomedical” to Recommendation 3, otherwise the door is still potentially left open to wrong psychosocial input. Thank you, once again, for producing this important document!
ReplyDeleteThanks Greg, for your very valid comments. We will take your suggestions on board, and make changes to the document.
ReplyDeleteThe MEAI team