On Severe ME Day we highlight Merryn Crofts' story in the hope that Merryn’s untimely death is not overlooked and the urgent need for proper recognition of, and research into ME is recognised, and ME no longer trivialised.
Merryn
Crofts, pictured, lost her life to Severe Myalgic Encephalomyelitis (ME) in 2017 shortly after
her 21st birthday.
Merryn’s
mother Clare Norton has kindly given me permission to use Merryn’s story and
images. Her daughter Merryn’s
legacy lives on as we reflect on her story and the seriousness of Myalgic Encephalomyelitis
(ME).
Merryn's Story
In a landmark inquest in May 2018 Merryn became the second person in the UK to have Myalgic Encephalomyelitis (ME) listed on a death certificate.
Back in early
2012 tests revealed that at some point Merryn had contracted glandular fever, a
virus which can trigger ME.
Despite
dozens of medical appointments Merryn’s condition deteriorated as she suffered breathing problems,
exhaustion and excruciating hypersensitivity to touch, light, and sound. She was
forced to wear an eye mask, suffered from severe migraines, brain fog,
slurred speech, and persistent infections.
Doctors initially suggested that Merryn was having panic attacks, and her family were later told that she may have conversion disorder, a mental condition formerly known as hysteria. Her family knew that it was not that. Merryn had started to think it was all in her head and the reaction of the medical community made her doubt herself.
Merryn was
eventually diagnosed with ME in the summer of 2012 by a private doctor and she began to receive treatment. Within six months of falling ill she was using a wheelchair, and within a year she was housebound.
On Severe ME
Day we remember Merryn and also honour other people who have lost their lives to this devastating
disease and those who are barely living with it.
There are
many people with ME in Ireland today who suffer from a lack of early diagnosis
and intervention to limit the progression of their illness. International
prevalence rates suggest there are somewhere between 10,000 and 19,000
sufferers here. 25% of those sufferers have Severe/Very Severe ME.
For those thousands there is no objective diagnostic test nor pharmacological treatments.
The pathology of ME is still unknown and there are no agreed therapeutic
management strategies.
These people
are stigmatised, disbelieved with very few able to get medical help to manage
some of their symptoms. Many of these people are children, and teenagers like Merryn was when she was diagnosed with ME.
25% of those
who suffer ME suffer from Severe/Very Severe ME. They suffer so severely they
are bed bound, suffer constant pain, paralysis, sensitivity to light and noise
so severe they lie in dark rooms with no sounds, skin sometimes so painful the
smallest touch can hurt.
These are
just a few of the most awful symptoms that Merryn endured. Stomach problems,
and problems swallowing, meant that Merryn’s weight plummeted to just
five-and-a-half stone. She could take on just 100 calories a day because her
gut was in so much pain, and by 2015 even two teaspoons of nutrients were
intolerable. She was eventually fitted with an intravenous nutrition line but
suffered intestinal failure. The Pathologist said that a post-mortem showed low-grade inflammation of nerve roots. It was suggested that this inflammation could have made Merryn's bowel hypersensitive to processing nutrients.
To address misinformation re Merryn's illness her family, who said it would be impossible to give a true understanding of Merryn’s full story as it is so incredibly complex listed, in no particular order, her most severe ME symptoms:
Intestinal failure and a hypersensitive gut which led to her being fed intravenously
Severe stomach pain
Nerve pain (or neuropathic pain)
Body pain including constant burning, itching, crawling, throbbing feeling
Unpredictable muscle spasms of limbs, head and body
Post Exertional Malaise
Painful swelling of hands, feet and face
Severe cough
Migraine
Head pain
Ear pain
Tinnitus
Dizziness
Eye pain
Visual disturbances
Blackouts
Loss of proprioception
Severe cognitive dysfunction impacting speech, memory, word recall, interpretation, concentration and processing
Muscle dysfunction and weakness
Nausea and vomiting
Periodic paralysis
Swallowing difficulties
Numbness and pins and needles
Loss of temperature control and temperature sensitivity, overheating and shivering
Hypersensitivity to noise, light, touch, sound and movement
Hypoglycaemia
Intolerance to heat and cold
POTS
Sleep disturbance
Urinary and bowel problems requiring catheterisation
Breathing problems and air hunger
Recurrent infections
Merryn's sister Amy described the final three years of her life as horrendous saying that Merryn's hospice doctor likened it to having a heart attack in your stomach. She added that the best advice the family got was from a doctor who told Merryn to do only 50% of whatever she felt she could do, so that she always had energy in reserve, but in her final years Merryn had no energy in reserve, she was always borrowing from the following day.
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"Having severe ME is like being trapped in your own body every single day. There is no rest, you are bed-bound all day every day.
"It snatches the most simple things away from you like being able to wash yourself, even in bed. Being cared for in every way possible. In terrible pain, from everything."
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In a post dedicated to Merryn, on Greg Crowhurst's page Stonebird, Merryn's mum Clare Norton describes her daughter as ‘a girl who loved
people, she was a hugger and a helper, always laughing, singing and dancing
about, a member of a local drama school who wanted to study performing arts and
work in the theatre.’
Clare goes on
to say that ‘Severe ME robbed her [Merryn] of all this in increments as she lost the
ability to walk, then sit up even at a small incline, becoming housebound then
bed bound. Severe photosensitivity meant her curtains were always drawn and she
often had dark glasses on as well, hyperacusis (noise sensitivity) and movement
sensitivity (of herself and others around her) meant she was unable to tolerate
much of any kind of social interaction with-out having myoclonic seizures and
becoming confused and disorientated.’
‘Touch
hypersensitivity meant my huggy girl could no longer give or receive cuddles -
even the weight of a sheet could be agonising.
Then the loss of speech, swallow,
and intestinal failure along with all the pleasure eating brings.
And pain,
pain beyond measure or imagining...and yet through all this hope, enormous
strength of spirit and finding a whole new online world of chronic illness
sufferers like her-self who battled daily but supported each other amazingly -
the collateral beauty.’
After an inquest, the Pathologist pointed out that Merryn had inflammation of the
ganglia – gatekeepers to sensations in the brain.
A
post-mortem into another UK death attributed to ME, Sophia Mirza, 32, in
2006, also found ganglionitis.
Outside
court, Merryn’s family welcomed the inquest conclusion.
They said in
a statement:
“Today’s ruling is proof, as if proof was needed, that ME is a
real, physical disease. It is a devastating and cruel illness that has robbed
us of a beautiful daughter and sister.
We have
never wanted Merryn’s death to be in vain and we hope this inquest conclusion
is a milestone in the way that ME patients are treated from now on.”
Severe/Very
Severe ME
Many people
with Severe/Very Severe ME find it difficult to access dedicated help and
resources and using mainstream help can be hard. The 25% Group offer dedicated
advocacy services that are geared towards the severely affected. See their
website here: - https://25megroup.org/me
According to the 25% Severe ME Group 'ME is a WHO
classified neurological disease with multi-system dysfunction.
It is a
physical disease that, in its more severe forms, is severely to profoundly
disabling.
The most severely
affected have multiple serious symptoms, often not investigated or
under-investigated, that incapacitate people to such a degree that 25% of them
are effectively house bound or bed bound, may use wheelchairs part or full-
time and are barely able to move.
There is no
cure. There is no consistent or universal treatment. The pain of Severe/Very
Severe ME is so extreme that drugs do not touch it and many are forced to take
extremely strong drugs to gain minimal reductions in pain levels. Others have no
pain relief at all due to acute drug sensitivity.
There are a
range of serious physical symptoms, with underlying neuro- immune and other
physiological implications.
Severe ME is
a serious, disabling chronic condition yet the healthcare these patients
receive is ‘seriously inadequate!
Quality of
life tests indicate that severe ME sufferers feel every day significantly the
same as an AIDS patient feels two months before death. 98% of people with Severe ME do not get better. Peterson describes ME as “one of the most
disabling diseases that I care for, far exceeding HIV disease except for the
terminal stages”.
25% of
sufferers with Severe ME describe themselves as bedridden, and 57% have been
either housebound or bedridden for more than six years, illustrating “in
numbers rather than words that morbidity in ME can be substantial, despite the
opinion of many healthcare professionals to the contrary.”
Researchers
have demonstrated numerous abnormalities of the immune, muscular,
cardiovascular, and central nervous systems. The emerging picture is of a
multi-system disease with a strong component of immune and neurological
dysfunction. The World Health Organisation recognises ME as a neurological
illness.
ME describes
an illness characterised by a combination of muscle pain (myalgia), and
neurological and cognitive symptoms such as memory loss and concentration
difficulties (hence ‘encephalomyelitis’). As with any illness, the symptoms and
disability which results will be experienced differently by each individual.
Symptoms can vary in severity and commonly include chronic pain and lack of
stamina/weakness of the muscles and limbs, acute hypersensitivity to stimuli
such as light and noise, cognitive and memory problems, vocal/muscular
limitations, multi-joint pain, and severe migraine type headaches.
Severe ME– Will be able to carry out minimal daily tasks only, face washing, cleaning
teeth, have severe cognitive difficulties and be wheelchair dependent for
mobility. These people are often unable to leave the house except on rare
occasions with severe prolonged after-effect from effort.
Very Severe
ME– Will be unable to mobilise or carry out any daily tasks for themselves and
are in bed for the majority of the time. These people are often unable to
tolerate any noise and are generally extremely sensitive to light.
This means
their physical and mental limitations are very acute. Commonly the person will
require to use a wheelchair to get around, help with transferring from seat to
seat within and out with the home, and may have problems with sitting up, using
their arms and hands for even simple tasks like doing up buttons on clothing,
and have difficulties toileting and bathing themselves. Some very severely
affected patients are unable to do any of these tasks because of very severe
pain and muscle weakness (not due to misuse or under use) and even transient
paralysis – normally down left side. This can leave the person unable even to
swallow, or to turn themselves in bed. – From the 25% Group website.
PENE – Post -Exertional Neuroimmune Exhaustion is the cardinal feature of ME as per the International
Consensus Criteria (ICC) 2011.
This
cardinal feature is ‘a pathological inability to produce sufficient energy on demand
with prominent symptoms primarily in the neuroimmune regions.’ Characteristics
are as follows as per the ICC:
1. Marked,
rapid physical and/or cognitive fatigability in response to exertion, which may
be minimal such as activities of daily living or simple mental tasks, can be
debilitating and cause a relapse.
2.
Postexertional symptom exacerbation: e.g. acute flu‐like symptoms, pain and
worsening of other symptoms.
3.
Postexertional exhaustion may occur immediately after activity or be delayed by
hours or days.
4. Recovery
period is prolonged, usually taking 24hrs or longer. A relapse can last days,
weeks or longer.
5. Low
threshold of physical and mental fatigability (lack of stamina) results in a
substantial reduction in pre‐illness activity level.
Here is an
extensive list of the symptoms of Severe/Very Severe ME: - https://25megroup.org/me/symptoms
See further
pages re The Diagnosis of Severe ME, The Management of Severe ME, The Prognosis
of Severe ME on the 25% ME Group website here: - https://25megroup.org/me
ME is truly devastating for the 25% who have Severe ME, lying in a dark room being tube fed, paralysed with no medical services. They are some of the sickest people receiving the worst healthcare service.
We have never wanted Merryn’s death to be in vain and we hope this inquest conclusion is a milestone in the way that ME patients are treated from now on.”
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| The picture of Merryn in many ways says as much as the words - a wonderful life lost to ME, a disease that so many people in positions of influence still do not really believe exists. |
Many thanks to Clare Norton & family for sharing your Merryn's story many times to raise awareness of the severity of Myalgic Encephalomyelitis (ME) and for allowing us to remember her today on Severe ME Awareness Day 2020.
MD
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