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 ~
Measuring and Tracking Symptoms in Severe ME
See our information re measuring and tracking symptoms here
People with Severe ME make up approximately 25% of our ME community.
People with Very Severe ME are approximately 2% of our ME community.
Despite the 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.
Most medics, 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.
Most medics 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.
Lack of 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 ~
More Must Watch Films About Severe ME
Two films from Dialogues for a Neglected Illness (Natalie Boulton & Josh Biggs)
‘Very severe 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.’
The film 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.
‘Voices From 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 misunderstood.
Severe and 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 further infections.
An incorrect 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.
As a consequence, situations very similar to those shown in the film are taking place right now in Ireland, in the UK and in other countries.
The original 1 hour film is available to view free of charge on Vimeo at this link
(enter the promo code VOICES at the $3 button)
See other details and a shorter 30 minute version of the film here
The 25% 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 disabling symptoms.
Severe ME 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.'
25% Severe 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 Ireland
“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
Caring for Someone with Severe ME
Caring for Someone with Severe ME
Managing Severe ME
In order for family carers, agency carers, doctors and other healthcare staff to manage Severe ME they would be required to know about Severe ME, in particular they would need to know details of the the complexities that separate Severe ME from less disabling severities in ME; they would need to recognise the distinctions between the illness as suffered by someone with mild or moderate ME and know that those with severe ME suffer a completely different condition, i.e., an horrendous life limiting condition that sees some patients permanently confined to bed, tube fed, suffering various hyper sensitivities, and post exertion crisis in response to the smallest movement, or to someone being near them trying to support them here
Much thanks to Linda Crowhurst and Greg Crowhurst for content and advice re Severe ME
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