Saturday, 27 January 2018

ME Advocates Ireland's Information pack





INFORMATION PACK
ON



The Situation of 
Myalgic Encephalomyelitis (ME) Patients 
in Ireland


May 2021







Quick Summary

·     Worldwide there are millions missing from their previous active lives having acquired Myalgic Encephalomyelitis (M.E.) In Ireland there are an estimated 10,000 to 19,000 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 complex neurological disorder 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 International Consensus Criteria (2011) on M.E. '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.

·     Many people with M.E. are reliant on carers for their basic needs.

·     Deaths among the M.E. population are usually attributed to secondary causes such as cancers, cardiac issues and suicide

·     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 care plan pathways for people with M.E.

·     The ‘treatments’ suggested by the HSE have been demonstrated to be ineffective and to cause harm to people 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.          Most 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) and why is it   
       totally unsuitable for people with M.E.?
8.          Current biological research
9.          How did the HSE get it so wrong?
1           What do Irish doctors know about M.E.?
11         Recommendations


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 symptoms of ‘foggy brain’ which could mean forgetting conversations, poor short-term memory, inability to hold conversations, inability to absorb new information, difficulty reading a book or following a film, difficulty finding the right words, intermittent dyslexia, etc. However, if energy disruption continues unabated, resulting in the lack of production of ATP, research is now showing us that this can lead to conditions like Dementia and Alzheimer's.


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

Marked debilitating fatigue 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 bedbound and carer dependent for years.


2.  Most Common Symptoms 

      The most reported ones are PENE/PEM, 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 ME; 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, Tingling, 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 ME.

 


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/Profound ME is so horrendous, there just aren't words to describe how awful it is - pain, paralysis, cognitive issues, terrible hypersensitivities, profound system dysfunction.

Much like the disease Multiple Sclerosis, people can be affected in different ways. Severe cases often leave affected individuals bedridden, needing tube feeding and 24 hr care. Less severe cases are usually housebound with no basic energy to engage in ordinary simple self-care and household activities like showering, washing hair, brushing teeth, making a meal, etc. Milder cases may be able to function at a higher level, but energy is very limited, and each task involves pacing and prolonged resting to restore enough energy for the next task.

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 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.



3.  What is CFS?
Many people, including doctors, 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 trivialised the seriousness of how ill these patients were and over time led to more and more people, with only 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 MECFS.

Many CFS patients do not fulfil the criteria for ME and similarly many patients with M.E. have received a CFS diagnosis.  

Over decades this conflation of the two illnesses has led to the severe neglect of people with M.E. - people who are suffering horrendous symptoms and who doctors simply see as a patient who has unexplained 'fatigue'. 

The distinction between both illnesses has continued to cause problems for researchers, doctors, governments and patient organisations. Many began to use the terms interchangeably or with the combined acronym ME/CFS, creating a broad disease category that has no official classification.

This emphasis on fatigue unfortunately 'allowed' the disease of M.E. to become more and more disappeared and to be defined by some as a psychiatric illness, thus condemning some very seriously ill patients to a lack of proper diagnosis, lack of appropriate testing, lack of treatment and understanding of the symptoms and more importantly a lack of interest in pursuing biological research for the condition.

However, in recent years much of this has changed and there are very reputable scientists now involved worldwide in M.E. research adopting appropriate and more stringent diagnostic criteria on trial participants.

Below is a summary of recent biological research findings in people with M.E.

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 simply Chronic Fatigue, making it look like they are just 'tired' people. 

Many worldwide experts in the illness (including Ireland’s Prof Darragh) came together and produced comprehensive diagnosis criteria called the International Consensus Criteria (2011) – ICC-ME. See the ICC 2011 here

 

The “Myalgic Encephalomyelitis – International Consensus Criteria (ME-ICC)” advocates for removing fatigue as a characteristic symptom and defines the disorder as an acquired neurological disease with complex global dysfunctions. The ME-ICC also defines specific symptom requirements: post-exertional neuroimmune exhaustion (PENE), neurological impairments, immune, gastrointestinal, and genitourinary impairments, and energy metabolism impairments. 

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

The Canadian Consensus Criteria defines ME/CFS as an acquired, organic, pathophysiological multi-systemic illness that occurs in both sporadic and epidemic forms and requires core symptoms including post-exertional malaise (PEM) and neurocognitive dysfunction, in contrast to the polythetic approach of the Fukuda case definition below. 

The Fukuda et al. (1994) criteria was developed by the CDC in the USA after the outbreak at Lake Tahoe.  

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 for and 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 illness 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 have 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 ME/CFS because it was the least specific of all the definitions and only included six months fatigue as a primary symptom and did not include Post Exertional Neuroimmune Exhaustion (PENE) which is considered a hallmark of the disease. See Introduction paragraph of this https://effectivehealthcare.ahrq.gov/ehc/products/586/2004/chronic-fatigue-report-160728.pdf 

As you can glean from the above, the research criteria used 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. as the distinct neurological indicators of the disease are ignored and excluded.

It is these criteria upon which the HSE diagnostic and treatment guidelines are currently 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-ME of 2003 mentioned above and lists Post Exertional Malaise as a mandatory criterion for diagnosis. It does not list Post Exertional Neuroimmune Exhaustion (PENE) as a mandatory criterion for diagnosis.

5.  How is M.E. diagnosed in Ireland?
The HSE guidelines are a cut and paste edit of the NHS guidelines in the UK which is based on the Oxford Criteria and 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 stories of 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 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 misdiagnosis 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, DID receive an M.E. diagnosis here, as many years ago there were experts in the field here in Ireland including our very own Prof Austin Darragh, RIP who was one of the authors of the ICC-ME of 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 ME?
Prior to April 2017, when M.E. advocates had success getting the HSE to remove inappropriate information on M.E. from their website, if one had googled the words 'HSE and Myalgic Encephalomyelitis' one was brought straight to the HSE information on Chronic Fatigue Syndrome, and 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. 
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 NICE Guidelines on M.E. to be updated. These guidelines will not be ready until late  2021. 

The entire website section on M.E. needs to be re-written (and M.E. separated out from CFS) as soon as possible. The HSE need to put in place appropriate diagnostic criteria and proper care plan pathways for people with M.E. Patients cannot wait until late 2021 for guidelines to be written up.


Urgent Recommendation:

We therefore 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.


Prior to April 2017, when the HSE removed inappropriate information on M.E. from their website, the HSE had recommended standard 'treatments' of psychological interventions and exercise - Cognitive Behaviour Therapy and Graded Exercise Therapy (CBT and GETunder the heading Treatment'. These 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 the condition to psychiatry and physiotherapy. This referral sets up a pathway that is totally inappropriate and can end up blocking appropriate medical investigations and multi symptom management and treatment paths for people with the neurological condition Myalgic Encephalomyelitis.

GET, as a treatment, has been proven to seriously harm and even kill people with M.E. as their bodies do not have the ability to reproduce energy and pushing their bodies beyond safe limits can end up pushing them into a severe case of their illness, often needing 24 hr care, bedbound, doubly incontinent, needing feeding tubes and having multi organ problems and even 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.

CBT as a treatment is not an effective tool. While it may be useful as an adjunct therapy (as with many chronic illnesses) it should not be recommended as a primary treatment. Many people with M.E. cannot get out of their beds or houses and to set them up with therapist appointments which they cannot possibly attend (or causes them severe crashes and relapses) amounts only to cruel and unusual punishment. 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 treatment guidelines is imperative for the safety of people and children with M.E.



7.  What is GET and why is it totally unsuitable for people with ME?
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 ME 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 ME/CFS.

The study 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 the 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 the illness 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, had committed five million pounds to support the research.

There was a great fanfare when the results of the trial were published which showed that 22% of people in the two rehabilitative treatment arms had achieved 'recovery'. Headlines around the world trumpeted the story. 

However, since then the trial has been completely debunked by many scientists around the world. It turns out 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 when 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 calls for its retraction and we can supply all the backup data necessary on demand. For now, we are giving you two links. The first is 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. It 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 the 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 this illness. It is to those people that patients owe a debt of gratitude. Patients all around the world raise funds for research and have found online support through the establishment of many online groups. Below is a link to some of the peer reviewed biological research that exists



As you can see from the above link there are copious amounts of research already carried out that demonstrate 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. Again, we can supply scientific evidence on demand but for now, one example from by Paul L et al is interesting "Demonstration of delayed recovery from fatiguing exercise in chronic fatigue syndrome". 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?
The problem with the HSE is that they simply just copied and pasted the UK NHS guidelines for this illness 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 the UK services. They have also not adopted a formal definition of M.E. which is sufficiently rigid to meet research standards.

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. 



1   What do Irish doctors know about ME?
Many Irish doctors know very little about M.E. save what they had 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 also very difficult to find a GP who understands the illness or is willing to look up the current research. While they do exist here and there, they are doing so without any support or encouragement from their parent bodies or the HSE.

This inevitably leads to the neglect of people who are extremely ill. Whether the neglect is wilful, or accidental is irrelevant in this situation. People are left to cope on their own seeking advice, testing and treatment abroad where they can afford it or left to rot in darkened bedrooms when they can't. Children also get M.E. and in the UK figures show it is the biggest contributor to school absences. 



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 ICC-ME) which is sufficiently rigorous to identify research cohorts

3.             Develop an M.E. policy to include
·      Diagnostic protocols
·      Treatment Options
·      Management Pathways
·      Training programme 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






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, by including participants from all relevant parties, HSE Employees, and Patient/Client & Carer expertise, is to exemplify ‘best practice’ as outlined in the principles of the National Healthcare Charter’.






Compiled on behalf of
ME Advocates Ireland (MEAI)


Updates 

October 2021 - Re NICE Guidelines (UK) 2021

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



The new NICE Guideline (NG206) says that ME is a complex condition where there is no “one size fits all” approach to managing symptoms.

The new NICE guideline recommends a route to earlier diagnosis for those with ME.

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

The new NICE Guideline (NG206) for Myalgic Encephalomyelitis (ME) WHO ICD G93.3 is a small but welcome step.

The new guideline published on October 29th 2021 is only a small attempt to undo the damage done by inaction, ignorance, gaslighting and negligence since 2007.  While the new guideline published is very far from ideal, and there is still a long way to go to provide appropriate guidance and policy development in Ireland, the removal of the most harmful treatment recommendations (GET & CBT) is a significant milestone on the road to proper recognition and treatment for ME. 

It remains to be seen how implementation of the new guideline will work in Ireland as well as the UK and the rest of the world. 

Even well before the release of the new guidance, 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.





Appendix 1

Quick 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 prevalence rate 0.2-0.4% 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



This Information Pack was recently updated in May 2021

2 comments:

  1. 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!

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  2. Thanks Greg, for your very valid comments. We will take your suggestions on board, and make changes to the document.
    The MEAI team

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