The parents of Merryn, who died of ME in 2017, speak out

Countrygirl

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https://www.manchestereveningnews.c...bed-bound-unimaginable-pain-watching-14474293

'Bed-bound and in unimaginable pain, watching my daughter waste away and die from ME was torture'
Merryn Crofts, of Rochdale, died aged 21 after an agonising six-year fight with the disease




Clare said: “Merryn said she wasn’t going back into hospital. She knew what the consequences were. She lasted three months. It was absolutely torture.”

On the night she died Merryn called her mum into her room.

“She asked if I could call out the district nurse, then she said to me ‘I’ve got to be getting off now mum’,” said Clare.


ME sufferer Merryn Crofts (Image: UGC MEN)
“I went downstairs to wait for the nurse. When we went back she was gone.

“Looking back it was like she was telling me in such a nice way. It’s like her last thought was how can I make this easy for my mum.”

Merryn wrote letters to her family to open after her death.

They took her a year to complete as just typing out a few letters at a time left her exhausted.

During her darkest days shopping-mad Merryn loved to order clothes online, especially Ted Baker outfits, even though she couldn’t wear them and after opening them would leave them in their original packaging with the labels still attached.

After her death her family held a sale, which they dubbed ‘Merryn’s Pop-up Boutique’, which raised £1,200 for the Grenfell Tower appeal.

Merryn’s brain and spinal column was also donated to the Ramsay Research Fund - a charity investigating the causes of ME.

In May an inquest into Merryn’s death is due to be held.


ME sufferer Merryn Crofts (Image: UGC MEN)
Her family hope it will find she died from ME.

If that happens she would become only the second person in the UK to have the illness as their official cause of death, after 32-year-old Sophia Mirza, who died in 2005.

“It would mean so much to Merryn and so much to the ME community to have ME acknowledged as the cause of her death,” said Clare.

“There is still so much we don’t know about the disease. We have to start properly funding research into it and acknowledging it can kill.”

The ME Association campaigns to improve access to care, treatment and research and remove the disease’s stigma.

ME Association honorary medical adviser Charles Shepherd said it was ‘essential’ Merryn’s ‘untimely death is not overlooked’.

He added: “There are many people, even within the medical profession, who continue to think ME is all in the mind. It’s about time we put this myth to bed once and for all.

“It is essential that Merryn’s untimely death is not overlooked and the urgent need for proper recognition of, and research into, ME is recognised.

“Many doctors still don’t know how to diagnose and manage ME, and lack of research means that we still don’t have any effective forms of treatment.

“In our present state of knowledge, we don’t know if ME can kill directly, but there are various consequences of having the illness that can increase the risk of early death.

“How many more people have to suffer before ME merits properly funded biomedical research?”

For more information on ME, visit meassociation.org.uk.
 
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ebethc

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the NIH lists ELEVEN deaths for CFS in 2015.... Other immune illnesses (RA, MS, etc.) have deaths listed in the thousands, and have significantly more funding than CFS.. Documenting number of deaths - including suicides - has a legitimate purpose for increasing awareness & funding for CFS... If I ever euthanize myself, you better believe that I want it documented and for the NIH to be informed.
 

Countrygirl

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Agh! This individual is making really nasty comments again as he has with the previous deaths of ME. he must be the Infernal Trios best friend.

 

Gingergrrl

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Agh! This individual is making really nasty comments again as he has with the previous deaths of ME. he must be the Infernal Trios best friend.
WTF is his problem? Who is this guy and what is his motive for doing this? How do we stop him?
 

Countrygirl

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It is in the Daily Mail today! It is good that it is now in a national daily, though they are emphaisising that it is thought to be a mental health condition by a section of the medical profession.

http://www.dailymail.co.uk/news/art...-weighing-just-six-stone-wasting-away-ME.html


Mother releases pictures of daughter who died aged 21 weighing just six stone after wasting away from neurological disease ME that some experts still do not think is real
  • Merryn Crofts, from Norden in Rochdale, died just days after her 21st birthday
  • She suffered with severe myalgic encephalomyelitis, which is also known as ME
  • Weighed less than six stone, spent last years of her life in pain and bed-bound
  • Family speaking out about her life and death in bid to raise awareness of disease
By Keiligh Baker for MailOnline

Published: 09:11, 2 April 2018 | Updated: 09:12, 2 April 2018



  • A mother has told of her 'torture' at watching her beautiful daughter waste away as she battled a disease some medical professionals refuse to believe exists.

    Merryn Crofts, from Norden in Rochdale, died on May 23 last year, 10 days after her 21st birthday. She weighed less than six stone and had spent the last three years of her life in pain and completely bed-bound.

    She suffered with severe myalgic encephalomyelitis - or ME - a neurological illness which affects up to 17million people worldwide.

    But many think the condition is not real, even within the medical profession.


    +10


    Read more: http://www.dailymail.co.uk/news/art...-six-stone-wasting-away-ME.html#ixzz5BVkx0oeD
    Follow us: @MailOnline on Twitter | DailyMail on Facebook
 
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So very sad. I can only try to imagine what it must have been like for Merryn and her family, knowing how little (or no) understanding there is of ME in this country. The family must have been so desperate. They show such compassion to raise money for others in their darkest hour. Rochdale is just a few miles away from where I live, I'm sending lots of love up the road to them.
 

Cheesus

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“Another just said he didn’t believe in it and that was that.”
I can't stand it when doctors say they don't "believe" in ME. I couldn't give two shits what they believe. Beliefs are what you have when you don't have evidence. It isn't a religion.

If they took the time to just look at the evidence then they would know their beliefs are nonsense.
 

Gingergrrl

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I can't stand it when doctors say they don't "believe" in ME. I couldn't give two shits what they believe. Beliefs are what you have when you don't have evidence. It isn't a religion. If they took the time to just look at the evidence then they would know their beliefs are nonsense.
Agreed and well said @Cheesus. This is not a faith or religion, this is a medical illness. Why do these doctors have to "believe" in ME/CFS or POTS or MCAS, etc. We are in 2018 for God's sake. WTF is wrong with these people?