Myalgic Encephalomyelitis (ME) is a complex neurological disease involving profound dysregulation of the central nervous system & immune system, dysfunction of cellular energy metabolism & ion transport & cardiovascular abnormalities, as per the International Consensus Criteria, ICC 2011.
ME is classified as a neurological illness since 1969 by the World Health Organisation (WHO)- ICD G93.3
'An M.E. patient feels effectively the same every day as an AIDS patient
feels two weeks before death.'
|Severe Myalgic Encephalomyelitis (ME)
‘I cannot convey how much the slightest wrong thing can cause unimaginable suﬀering and unnecessary endurance of intolerable levels of pain and other symptom deterioration, due to my profound levels of sensitivity to sound, light, movement, motion, perfume/chemical sensitivity.
The slightest wrong movement, sudden exposure to perfume, light, coughing, talking, clicking, banging or drilling sound, can trigger hours to days of unbearable paralysis, weakened muscles, shaking muscle spasms, intensiﬁed pain, massive headache, a completely blank mind, with every thought lost, just like that.
What is worse is knowing that a little extra awareness or care might make the diﬀerence between hours of paralysis or not: it is the unnecessary impact of small things that causes great dismay.’
~ Greg Crowhurst ~
People with Severe ME make up
approximately 25% of our ME community.
People with Very Severe ME are
approximately 2% of our ME community.
relatively high percentage of people with Severe ME there is very little
understanding of what people with Severe and Very Severe ME go through and
little knowledge of how to safely look after them at home and elsewhere.
ME- unaware medics do not know how to look after people with Severe/Very Severe
ME, and the lack of awareness and education in a hospital or other healthcare
setting can be difficult and dangerous for a person with Severe/Very Severe ME.
don’t know anything about ME because it doesn’t feature on medical school
curricula, it’s not taught to professionals and there’s no directive calling
for adoption and use of important gold standard guidelines like the
International Consensus Criteria (ICC) 2011. There’s no national policy on ME.
knowledge can lead the doctor to adopting a strategy of avoidance, refusing to
accept that they have a duty of care to the patient, and regrettably many
patients with Severe ME suffer near total neglect by their doctors.
‘The main lesson I learnt is that one
needs to be proactively protective of one’s patient, especially against other
professionals, and disbelieving friends and relatives.
For professionals affected by “Furor
Therapeuticus”, i.e., the feeling that one has to do something, it is better to
remember that there is no proven curative treatment, and that they should
perhaps concentrate on the “Do No Harm” element in the Hippocratic Oath.’
~ Dr Nigel Speight ~
Watch Films About Severe ME
from Dialogues for a Neglected Illness (Natalie Boulton & Josh Biggs)
ME can be a very frightening disease, not only for the family and carers of the
severely ill patient, but also for doctors who are unlikely to have any
previous experience of these most severe presentations. Patients can die from
very severe ME and it’s complications, and this is more likely to happen when
their condition is badly managed by ill-informed doctors. It is important that
doctors listen to the patient, or if the patient wishes, to their carers. Specialist help should be available for these
very severe cases.’
shows the brave and sometimes heartrending stories of five ME patients and
their carers, along with input from Dr Nigel Speight, Prof Leonard Jason and
Prof Malcolm Hooper.
the Shadows’ was filmed and edited between 2009 and 2011 by the brother and
mother of a person with ME in the UK. The film shows the devastating
consequences that occur when people with ME are disbelieved and the illness is
lasting relapse occurs when patients are given inappropriate psychological or
behavioural management: management that ignores the reality of this physical
illness and the severe relapse or exacerbation of symptoms that can be caused
by increased physical or mental activity, over exposure to stimuli and by
attitude and very mistaken belief in behavioural and psychological causes,
particularly when ME becomes very severe and chronic, following mismanagement,
is still taught to medical students and healthcare professionals in the UK.
consequence, situations very similar to those shown in the film are taking
place right now in Ireland, in the UK and in other countries.
1 hour film is available to view free of
charge on Vimeo at this link
promo code VOICES at the $3 button)
details and a shorter 30 minute version of the film here
Severe ME Group (UK) was set up to support all who have the severe form of ME
and those who care for them. This includes people who are housebound, bedbound
and dependent on help for physical functions - people who may be tube fed, who
suffer from great pain and multi-sensitivities along with other horrific
Remembrance Day, set up by the 25% Severe ME Group, aims to bring public
attention to the illness for the sake of all those presently suffering from
Severe/Very Severe Myalgic Encephalomyelitis and to remember all those who have
died from ME - ' a day to honour the strength of spirit of all those who have
endured and continue to endure decades
of suffering profound physical dysfunction and yet receive little, or no
recognition or help, but rather continue to experience gross misrepresentation
and misinterpretation of their illness and profound disability.'
ME Group on Facebook
We don’t have official data on how
many people have ME in Ireland or data on how many with Severe ME.
We could make an estimate that there
are 100s of people with Severe ME given the estimated prevalence rates* and
taking into account the approx 25% with Severe ME...which could be somewhere
between 2500 and 4750 possible patients
That’s a lot given that there are no
official guidelines for ME nor HSE notes for Carers of people with ME.
* International Prevalence rates
suggest that there are somewhere between 10,000-19,000 people with ME in
“I am a
ghost in the land of the living – forgotten, ignored and drifting on the edges
of life, whispering my message in the ears of the lucky ones who can
participate in life...I have Myalgic Encephalomyelitis. I call it paralysis,
muscle and cardiac failure, brain injury, a living plague that kills only
slowly, but does kill.”
~ Aylwin (Jennifer) Catchpole~
Person with Severe ME patient
Died in August 2010