Established in 2017, ME Advocates Ireland (MEAI) is an all-volunteer group dedicated to raising awareness and education for the ME community, medical professionals and HSE community services.
To adopt & use the International Consensus Criteria (ICC) - to
include accurate diagnosis
To include ME in all teaching – GPs, Medical, Nursing, Social Care
To train health professionals – all acute and PCCC staff
To design specialist training modules for ME to create GP awareness
To appoint an ME consultant as a national lead for ME
Clinical Care Pathways (Paediatric & Adult)
- THERE IS NO NATIONAL POLiCY ON MYALGIC
absence of clinical guidance on ME, acute and community staff have no lead,
nowhere to turn. It is recommended that a national guidance document for ME
should be developed by the HSE to provide information and guidance regarding
the condition with information in relation to the care and support available
through the HSE to adult s and children.
There is no
recognised set of criteria used by the HSE - In the absence of clinical
criteria on ME, acute and community staff have no lead, nowhere to turn. – It
is recommended that the HSE adopt robust criteria such as the International
Consensus Criteria, 2011.
- THERE IS NO KNOWLEDGE AMONGST GPs
· It is potluck as to the GP’s ‘belief’ of
what ME is, is it organic, does it have a specific pathophysiology, is it
psychological or is ‘the patient’ not-coping with life?
· Many medics do not regard ME as an
. Most have no knowledge of the
pathophysiology of ME, their reference is ’fatigue’.
· Attitudes to service users range from
supportive on a person-centred level to dismissive and blaming for not ‘making
an effort as there’s nothing wrong with you’.
· Standard bloods come back within lab range.
No knowledge of issues with low in range results or too high in range.
· ME appropriate tests are not done, e.g.,
NASA lean test and others mentioned in the International Consensus Primer (ICP).
· GPs have no idea of a referral pathway
to an ME knowledgeable consultant; some ask their patients if they know who to
refer them to.
· Treatment/management of ‘obvious
symptoms’ is not based on an understanding of the pathophysiology of ME.
· No knowledge of the concept of post
exertional neuroimmune exhaustion (PENE) whereby as energy supply decreases the
body’s functions shut down to enable the essential organs of survival to
· GPs seem unaware of the severity of ME
as patients attending a GP are mild or moderate or are those within the more
severe categories who use their ‘one off mind over matter’ energy to get to and
from the surgery, but then experience the exacerbation of symptoms which PENE
triggers for a period of time making the basics of daily life such as food,
fluids and heat pushing the person further into PENE.
· Those at the most severe end of the ME
spectrum, the severely and profoundly ill ‘do not exist’ as they cannot attend
a surgery. House visits are ‘unusual’,
and many GPs have no understanding of the needs of a person with severe/very
severe/profound ME, certainly ME is not seen as a reasonable reason for a house
· GPs seem unaware that the quality of
life of people with ME is the lowest of ANY chronic illness.
· Many GPs believe children ‘can’t get
· Parents with children with moderate ME
are encouraged to push their child into ‘normal’ activities, which, given the
pathophysiology of ME creates a high probability of deterioration.
· GPs refer children to paediatricians in
local hospital groups, where the same lack of knowledge and attitudes referred
to with reference to GPs are found.
· Referrals to the Children’s Hospital
Group raise further issues as the group continues to advocate CBT & GET,
both designed to dismiss and deny the child’s experiences of their body by
requiring them to ‘push through the warning signs as they are unhelpful illness
beliefs’’ which has the potential to cause psychological harm to a child who is
· A further issue arises when school
attendance falls below accepted levels, as neither EWO’s, Social Services or
Tusla understand ME or the potential for causing harm by forcing a child to
attend school when they are struggling to manage the basics of daily life.
· The lack of GP knowledge means that the
‘early’ support system which contextualises the clinical presentation and
defines, through discussion with the child and the family, what is and is not possible in terms of
activity, is absent. This lack of
clinical support and guidance to those in community services leaves a family
and the child without the supports they needs and in fear of the uninformed
judgements being made about them, therefore their problem is increased by both
health and social services rather than them being supported.
· This absence of clinical context
provided by the GP increases the risk of harm, to the child, possibly causing
permanent harm, and lowers the opportunity for remission/recovery which a
child, effectively managed, has a greater chance of achieving than an adult.
· Once a child is of an age to leave
Children’s services, there is no ‘joined up’ service provision or referral
route. Many paediatricians retain their patients beyond the age ‘cut off point’
as there is nowhere to send them.
· For those who are referred to adult
services there is no transfer of files from Paediatric to Adult services. Files are simply closed and stored away so
for those with ME it is like starting the journey, into the unknown, all over
· The risk of poor experiences in
Paediatric services due to having ME can result in caution/fear when entering
Adult services given the lack of knowledge or consistency in acknowledgment
that ME is a WHO classified neurological disorder.
- THERE IS NO KNOWLEDGE ABOUT ME AMONG
· If a person is referred to a consultant,
the common experiences are as with a GP.
· Neurologists, cardiologists, and rheumatologists
etc. largely dismiss the aspects of ME which sit within their specialities as
they do not meet the threshold for intervention according to their clinical
· Without the involvement of a clinician
who understands the complexity of ME as it affects all systems and organs, the
attempts of one speciality or another to address one aspect of a presentation
or ‘a symptom’ can lead to further imbalance or a further experience of
‘nothing to see here’ and dismissal.
often stated response that people with ME are given ‘symptom management’ can
reasonably be stated to be an act of neglect. The ME community is an unusual
one as they have no HSE ‘Lead’ or even anyone with an interest in ME that the
HSE can identify.
· It is hard enough for those assigned to
a disease specific consultant or one knowledgeable about their illness to
overcome the barriers living with disability provides. Having ME adds a further barrier and
inequality, as many have no access to a consultant, and for those that do,
there is no knowledge of the underlying pathophysiology which can be emphasised
to support an application as listed above.
· Access to support in the home, care,
adaptation grants etc all benefit hugely from the support of a consultant, but
for most with ME, this support is unavailable.
· Consultant support for those who cannot
leave their homes is absent.
· Collectively, we have met only two consultants
who ‘speak the language’ of ME and have some grasp of the complexity of the
disorder and the dreadful toll it takes on the life of the individual sufferer
and their families. But they are not ME consultants and have other roles which
takes from there potentially being a knowledgeable ME consultant available
fulltime. With the numbers with ME it is not practical that we continue to do
without ME leads in each CHO.
· How many people with ME avoid hospitals
and acute services as they do not believe the investment of their energy to
attend or be admitted will pay any dividends?
· How many people with ME have experienced
harm and have deteriorated due to an admission?
· Hospitals too often evidences a
dismissive response from staff, a denial of the illness or even any awareness
that it exists and denigration of the person with ME is all too often a
- THERE IS NO TRAINING IN MEDICAL SCHOOLS
- THERE IS NO EDUCATION AMONG MEDICAL
the HSE & Government become sufficiently aware of the harm being done to
adults, and to children and families across the country who are suffering due
to the lack of knowledge of ME?
is an objective framework of standards, based on a sound and quality evidence
base, there can be no accountability.
How can the
HSE hope to address a situation if it does not know what the territory is?
and quantitative data are required for the HSE to understand the complexity of
the current situation re ME.
health departments “worldwide” need to take responsibility for this massive
injustice that has left ME patients without appropriate healthcare, thus
afflicting them with the poorest quality of life than most major diseases (some
of which aren’t nearly as common).
millions of people with ME suffering year after year, decade after decade with
no end in sight. The logical way to highlight a disease is to talk to, and
about those who unequivocally have the disease. There’s absolutely no
substitute for first-hand knowledge.
ME Advocates Ireland (MEAI) are continuously
and steadily working to get the HSE to commit to creating guidelines and
guidance for people with ME in Ireland, for all age groups and all severities,
across all HSE services. By all age groups we mean Adults & Paediatrics; by
all severities we mean those with Mild, Moderate, Severe, Very Severe, &