Saturday 8 August 2020

In Memory of Merryn Crofts

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. 

In a radio interview Merryn's mum Clare described her daughter as a 'live wire' growing up, with a packed social life and a love of drama, but said she 'lost her bounce' when she started to develop symptoms of ME at the age of 15.

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
Head pain
Ear pain
Eye pain
Visual disturbances
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
Intolerance to heat and cold
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. 

"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."

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: -

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: -

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: -

Merryn's mum, Clare and her sister Amy talk about Merryn's illness in a poignant interview with Anne Foster in a BBC Radio 5 interview in 2018 here , and also in another interview here

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. 

“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.”

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.


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