Monday 7 August 2023

Severe ME Understanding and Remembrance Day August 8th 2023 - We remember Merryn




In Memory of Merryn Crofts





On Severe ME Remembrance 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.


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. 

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. 

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


It is difficult to comprehend how one person could suffer and endure so many horrenduous severe symptoms. 

Linda Crowhurst, who suffers daily from very severe ME describes severe ME - 

"It is more than torment, more than torture. It is almost completely incomprehensible in its agony it is so vast, so punishing, so pure, so bleak, so empty of life and full of sensations that are beyond endurance." -  

On Severe ME Remembrance & Understanding Day we remember Merryn and put a focus on Severe ME. Please see our full blog post where you can read more about Merryn's story via this link.






‘We remember them with sadness that they are no longer here with us
We remember them with frustration that they were not helped
We remember them with anger that they are gone
For we remember
All the hurt
All the denial
All the extremity of pain
All the neglect
All the harm
All the harrowing moments
All the suffering
All the grief
And we weep with gratitude
For their precious lives
For their tremendous personal strength
For their utmost conviction
For their forthrightness in speaking out
For their passion in life
For their compassion to others
In a hostile, empty world.
We remember and give thanks
For who they were
And who they will always be
In our hearts’

~ by Greg Crowhurst~

Thanks to Merryn's mum Clare and to Merryn's family for the information you have shared about Merryn. 

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