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
Myalgic Encephalomyelitis (ME) is one
of the most disabling diseases there is. The level of disability can exceed that in Polio, MS, advanced HIV, and
other serious illnesses, including the effects of chemotherapy.
It is hard for
anyone to understand the horrors of living with Myalgic Encephalomyelitis (ME).
Finding a way to enable the ME - unaware to get a glimpse of the conversation
they need to enter into to learn about Severe ME is vital. It is very important to raise awareness amongst both health professionals and society about this group who just don’t exist in the consciousness & experience of those they need knowledgeable, guided & appropriate care from.
'An M.E. patient feels effectively the same every day as an AIDS patient
feels two weeks before death.'
%20(1).jpg) |
| Severe Myalgic Encephalomyelitis (ME) |
People with Severe Myalgic Encephalomyelitis
require unique care due to the tendency for the illness to be exacerbated by
everyday stimuli such as light, noise and movement.
They are often too ill to use a wheelchair
or can only do so to a very limited degree. Many need to spend their time lying
flat in silence and darkness to avoid deterioration. Some are tube-fed, incontinent, unable to
communicate, allergic to medications, and unable to move.
For people with Very Severe ME
'resting' implies 'complete incapacitation’ which means that inactivity is the
only option. Those severely ill are often incapacitated because it is
physically impossible for them to do anything else. Lying down in a dark room in silence and with
absolute zero sensory input, with absolute zero physical movement or cognitive
activity. Clothing and bed linen must be comfortable but sometimes no clothing
is preferred and particular materials for bed linen essential. The room must
have a very moderate temperature; not too hot or too cold.
Greg Crowhurst produced and published
a public visual document of very severe ME in 2007, showing his wife Linda speaking of
her condition and showing her neurological symptoms. Linda is now bedbound
barely able to move and unable to feed herself. (Please note that you may need
to mute the volume because there are very loud adverts shown ahead of the film)
See the film 'Hope For A Better Moment' which features Linda via this link
Severe/Very Severe ME equals severe
illness and multi-system dysfunction.
Those with very severe Myalgic
Encephalomyelitis (ME) experience profound levels of suffering and extreme
symptoms, which can be life-threatening. Life may be reduced to basic survival,
struggling moment by moment while enduring extreme pain.
For some
there is no let up to the high intensity of their symptoms and their needs are
diverse and complex.
As well as
the Symptoms of ME already listed in a previous post Common Symptoms of Severe
ME include:
PENE - Post Exertional Neuro-immune Exhaustion
Pain (muscle, nerve, joint)
Weakness
Paralysis (partial or full body)
Spasms (muscles inc throat)
Severe Digestive problems
Dehydration
Minimal to zero energy levels, resulting in the patient being housebound or bedridden
Severe generalised continuous throbbing, burning & stabbing pain
Severe continuous headache
Hyperaesthesia/extreme sensitivity to touch
Abdominal pain, worse after food, this may be so severe as to interfere with nutrition
Problems with eating and drinking, chewing and swallowing, this can be due to either general weakness or actual dysphagia, and this may necessitate tube feeding
Vomiting
Food Allergies
Sleep disturbance, possible hypersomnolence or difficulty sleeping on account of pain and headache (insomnia)
Major problems with cognition, concentration and short-term memory
Extreme sensitivity to light and sound
Multiple chemical sensitivities
Persistent sore throats
Aphonia
Myoclonic jerks
Incontinence
Cardiac problems
Compromised immune system
Fainting
Dysautonomia
Intolerant to light/sound/smell/movement/touch – profoundly hypersensitive to everything
Cognitive problems
Dystonia
No energy - Ability to make energy at cell level is lost
Pins and needles
Numbness
Feeling ill
Extreme discomfort
Temperature Dysregulation
Immobile - No Possible movement
Absolute pain
Profoundly hypersensitive even to fabrics, e.g. clothes and bed linen
Helpless
Blank mind
Look asleep but totally aware and conscious
Everything is out of reach
Completely unable to communicate
Cannot sit up/stand/move or walk due to orthostatic intolerance
Dizziness & balance problems
Struggle to breath
Light hurts and noise damages
Stroke-like experiences
Smells set the person back and they can feel so unwell just from someone’s perfume
Zero energy to function
A fog of inability
Impaired consciousness
Blackouts and coma-like states
And the list goes on, it is limitless. ME can cause dysfunction in all the major systems - neurological, immune, endocrine, cardiovascular, musculoskeletal, gastrointestinal, respiratory, and genito-urinary, which is why people with Myalgic Encephalomyelitis have so many symptoms.
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’.
The symptoms
experienced by someone with Severe/Very Severe ME can be unimaginable - the
level of highly tormenting hypersensitivities to ordinary things are both
distressing and attacking, adding to the difficulty of getting safe,
supportive, and experienced care.
The sheer
severity of suffering experienced by patients with the above symptoms can
actually be worse than that suffered by patients with other chronic conditions
such as multiple sclerosis and cancer.
The extreme severity
of the person with severe ME can be a trigger to disbelief, as the doctor may
find it difficult to accept that the patient not only has to lie in a darkened
room but has to wear eye protection in addition.
The
abdominal pain may be so severe as to interfere with nutrition, an issue which
has been responsible for some fatalities.
‘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 ~
Issues of
Noise, Light,Touch, Chemical & Movement Sensitivity in Severe/ Very Severe
ME that carers and others need to be aware of in Notes from Greg Crowhurst
How do
people with Myalgic Encephalomyelitis become so extremely ill?
Some people
with Severe Myalgic Encephalomyelitis (ME) may have been severely affected from
the first day of the illness. In other cases a 'milder' form of Myalgic
Encephalomyelitis (ME) may worsen and become severe. In some people the
severity increases over time. The progress of the disease is unpredictable, and
few recover fully.
Some people in
the mild or moderate categories have been treated so badly by medics and
mismanaged to the point that they deteriorate and drop to a very severe level
of ME.
People with Severe ME make up
approximately 25% of our ME community.
People with Very Severe ME are
approximately 2% of our ME community.
Challenges
for the person with Severe ME when faced with an ME/Severe ME-Unaware/Uninformed
Doctor
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
‘'Wasteland'’
is a film by Greg Crowhurst which visually documents his wife Linda's very
severe ME. (Please note that you may need to mute the volume because there are
very loud adverts shown ahead of the film)
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 first film
is an introduction to the more severe end of the spectrum of ME and the second
film gives a more detailed look at very severe ME
‘Voices from
the Shadows’, a very informative and educational piece, is a film about Severe
ME that is available online and on dvd.
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
Supports
online
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 website https://25megroup.org/
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
We remember Aylwin Catchpole
Aylwin suffered from ME for more than 20 years, please see more about her here
“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
See post for information about caring for someone with Severe ME here, here & here
Further Reading
Adrenal Issues in ME here
Oesophageal Spasms in ME here
Excessive Thirst in ME here
Visual Disturbances in ME here
Malnutrition in Severe ME here
Disclaimer: The information in this post is for general information purposes only. While we endeavour to keep the information up to date and correct, we make no representations or warranties of any kind, express or implied, about the completeness, accuracy, reliability, suitability or availability with respect to the post or the information, products, services, etc contained in the post for any purpose. Any reliance you place on such information is therefore strictly at your own risk.The suitability of any solution is totally dependent on the individual. It is strongly recommended to seek professional advice and assistance through other avenues, depending on your query or need for support, for example, your doctor(s), via Citizens Information, Your Local HSE Office, Revenue or other.
%20(1).jpg)
No comments:
Post a Comment