Monday 8 August 2022

Severe ME Understanding and Remembrance Day August 8th 2022 - 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
  • 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

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 or here: -  ME Advocates Ireland (MEAI): Remembering Merryn Crofts






‘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 and for highlighting severe ME. Thanks also for allowing us to share Merryn's story.


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