I would like to thank a few amazing women who created
this comprehensive document
Compiled on behalf of The #MillionsMissingDublin Event Campaign
about the situation of people living with M.E. in Ireland.
Thank you for creating it and for sharing it.
For more about the event, stories and other links on the Event page
We would like to ask all our families, friends and acquaintances to support the protest
on the 11th May at Government Buildings, Dublin.
Many of us are too ill to be there ourselves.
We need your support.
Thank you!
For a PDF leaflet of this document, please contact Corina.
this comprehensive document
 |
INFORMATION
PACK
FOR TD’s,
HSE and other interested parties
The
situation of
Myalgic
Encephalomyelitis
patients
in Ireland 2017
#MillionsMissingDublin
event
Leinster
House,
May 11th
2017
11.00am to
3.00pm
Quick Summary
·
Worldwide there are Millions Missing
from their previous active lives having acquired Myalgic Encephalomyelitis
(M.E.)
· In Ireland
there is estimated to be some 14,000[1] people
living with M.E.
· 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 Malaise (PEM) is the
cardinal symptom of M.E. 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 a permanent, non-recoverable
relapse
·
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 even
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 put in place proper diagnostic criteria and proper
care plan pathways for people with M.E.
· The
current ‘treatments’ listed on the HSE website 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?
10.
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 infection and
instead experience a wide variety of symptoms including the body’s inability to
produce energy.
Energy is needed to fuel the body’s internal functions. Cells cannot
survive on their own. They need power to stay alive. They need energy to
perform functions such as growth, maintaining balance, repair, reproduction,
movement, cognitive function and defence. All 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 deteriorate.
When the body receives energy it is converted into Adenosine
triphosphate (ATP) which is
considered to be the energy currency of life. It is the high-energy molecule
that stores the energy we need to do just about everything we do.
Similar to Multiple Sclerosis, patients with Myalgic
Encephalomyelitis share many similar pathologies including impaired ATP.
To give an example of the effect on one organ - the brain. Lack of
cellular energy will start out by the patient showing symptoms of ‘foggy brain’
which could mean forgetting conversations, poor short term memory, inability to
hold conversations, inability to absorb new information, difficulty reading a
book or following a film, difficulty finding the right words, intermittent
dyslexia, etc. However if energy disruption continues one will end up with
dementia.
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 in literature as Post Exertional Malaise (PEM), 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
There is a myriad of symptoms attached to M.E. The most reported ones
are headaches, bone and muscle pain, swollen lymph nodes, muscle weakness,
muscle spasms, seizures, neck pain, vision abnormalities (such as blurred
vision), cognitive impairment, photo-sensitivity, noise sensitivity, paresthesia,
bladder and bowel dysfunction and sleep dysfunction. Cardiovascular
abnormalities are also commonly reported.
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 a comprehensive diagnosis criteria called the
International Consensus Criteria (2011) – ICC-ME.
http://www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf
The “Myalgic Encephalomyelitis – International Consensus Criteria
(ME-ICC)” advocates for removing fatigue as a characteristic symptom and
defines the disorder as an acquired neurological disease with complex global dysfunctions.
The ME-ICC also defines specific symptom requirements: post-exertional
neuroimmune exhaustion, neurological impairments, immune, gastrointestinal, and
genitourinary impairments, and energy metabolism impairments.
The pre-runner to the ICC-ME was the Canadian Consensus Criteria
(2003). CCC-ME
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
This criteria is used to define Chronic Fatigue Syndrome. As Post
Exertional Malaise is not a mandatory criteria under Fukuda you can begin to
imagine the number of misdiagnosis and confusion that abounds. Research
has indicated that individuals with a primary psychiatric illness (e.g. primary
Major Depressive Disorder) may be misdiagnosed under the Fukuda criteria due to
many overlapping symptoms including fatigue and sleep difficulties.
In the UK however another criteria was developed for and by a group of
psychiatrists - called the Oxford Criteria.
This criteria is far less rigorous and may include patients with fatigue
as their only symptom. As you can imagine there are a myriad of illness which
can have fatigue as a primary symptom, eg MS, Lupus, Fibromyalgia, cancer,
heart disease, etc so the possibility for misdiagnosis is very high and the
research criteria 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 it’s Evidence Report recommending the retirement of the Oxford
criteria for ME/CFS because it was the least specific of all the definitions
and only included six months fatigue as a primary symptom and did not include
Post Exertional Malaise which is considered a hallmark of the disease. See
Introduction paragraph of this 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 this
criteria upon which the HSE diagnostic and treatment guidelines are 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 a new diagnostic criteria very similar to the CCC-ME
of 2003 mentioned above and lists Post Exertional Malaise as a mandatory
criteria for diagnosis.
5. How is M.E. diagnosed in Ireland?
The HSE website is 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
Malaise as a mandatory diagnostic symptom. How can a condition that has PEM 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?
If one googles the words 'HSE and Myalgic Encephalomyelitis' one is
brought straight to the HSE information on Chronic Fatigue Syndrome. Go on. Try
it.
The website then goes on to conflate the two conditions claiming that
doctors 'prefer' to use the term CFS as opposed to M.E. This may well be the
case of course as 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 entire website section needs to be re-written (and M.E. separated
out from CFS) as it is riddled with inaccuracies and lacks any scientific
basis. However we recognise that this may take some time so, as a starting
point, the #MillionsMissing campaign want to immediately remove the current
harm being caused to M.E. patients as a result of HSE treatment
recommendations.
Urgent
Recommendation:
We therefore
recommend that the HSE immediately addresses the following interim change on
their website about M.E.:
Under the heading ‘Treatment’ the HSE currently recommend standard
'treatments' of psychological interventions and exercise - Cognitive Behaviour Therapy and Graded Exercise Therapy (CBT
and GET). 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 of 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 removal 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 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 just 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 of
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 website information completely ignores the many thousand peer
reviewed scientific papers that show the biological issues involved in M.E.
Indeed the website 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 aware of the illness and that patients can present
from mild to severely disabled. As a result 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 PEM 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 read on
the HSE website. The illness is not taught in medical schools here. It has
virtually been disappeared or conflated with CFS.. There are no consultants
specialising in the illness and therefore there is no clear medical care plan
pathway for patients.
Many patients regularly report bad experiences where hospital staff have
said they've either never heard of the illness or else they think that it means
you have a ‘mental health’ problem. 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
The #MillionsMissing campaign requires the establishment of a
Myalgic Encephalomyelitis (ME) Working Group with immediate effect.
The purpose of the M.E. Working Group will be to (not a definitive list):
1.
Ensure that the harmful recommendations
of CBT and GET are removed as treatment options from the HSE website (see above
urgent recommendation)
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
M.E.
Working Group membership
This M.E. Working Group should include representation from the
following (this is not a definitive list):
·
HSE Acute service professionals
· HSE
community practitioners
· Education
service
· Recognised
international ME experts
· Those who
have lived with and researched ME as sufferers and Carers
·
Relevant patient organisations
Commitment:
We require a statement from the CEO of the HSE to ‘kickstart’
Policy which directs this to be:
‘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
The #MillionsMissingDublin Event Campaign
Appendix 1
Quick Glossary
M.E. Myalgic
Encephalomyelitis
CFS Chronic
Fatigue Syndrome
WHO World
Health Organisation
CBT Cognitive
Behaviour Therapy
GET Graded
Exercise Therapy
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
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