Merryn Crofts - media and inquest

Arnie Pye said:
Has the BBC ever done anything like this before? Or have they always toed the BPS line?
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I've read somewhere that they did a big documentary some decades ago but there was a terrible backlash from the BPS-crew, and since then there hasn't been anything similar. Can't remember the name of the show it was on though. From recently I remember a piece being prepared that would be critical of PACE among other things, but that was cancelled after someone intervened. @Jonathan Edwards and @Russell Fleming should know a bit more about that.
 
I remember seeing a documentary some years ago. Could have been BBC, might not.

It was really good. One case couldn't be on camera as social services were involved, so instead they showed the changing season from her bedroom window when her family were speaking.

There was a young, pre-teen girl,already a cancer survivor who went voluntarily into SW's unit. The family didn't realize until they tried to visit that it was a locked ward and visits were strictly controlled/limited. She came out worse than she went in.

It was very good. I watched in tears, turned to my husband and said " surely, now things will change, now people know". Nope.

ETA - just realized how negative that sounded. That was then, this is now. I am very grateful to the Croft family for being so generous in sharing their experiences. Maybe this time....social media & all that.
 
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May 7th-13th is M.E Awareness Week 2018. Clare Norton is the mother of Merryn Crofts, who sadly passed away from terminal M.E at the age of 21. Today, Clare talks to us about Merryn’s Legacy, and her personal campaign to raise awareness of the condition.

Thanks for sharing your story with us, Clare. Would you like to introduce yourself and tell us a bit about your daughter Merryn?

I’m Clare and mum to Amy aged 24, Merryn who died aged 21 and Lara who died aged 8 days old.

Merryn was always a really loving and loveable child. She was a bundle of fun and mischief, stubborn, loyal caring and she loved her hugs no matter how old she was.

She was a beautiful soul who always thought of others and would do anything to help if she could. Even when she was so very ill she continued supporting other chronic illness sufferers online.

When she was told her condition was terminal her main thoughts were of her family and loved ones. She wrote us a letter to be opened after she died, it took her over a year to write as she could only type a few words at a time on her phone.

That is the kind of person she was.
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https://community.scope.org.uk/discussion/44058/losing-my-young-adult-daughter-to-m-e
 
Young drama student Merryn Crofts killed by M.E, landmark inquest hears today.

ME Association press officer John Siddle reports from Rochdale Coroners Court ______________________

A devastating disease that some experts insist is all in the mind led to the death of a young drama student, a landmark inquest today ruled.

Merryn Crofts, 21, weighed less than six stone and had spent the last three years of her life totally bed-bound with severe ME - an incurable condition that affects 250,000 people in the UK.

The youngster was unable to take more than two teaspoons of food before suffering immense gut pain and vomiting, a coroner was told.

Merryn, from Rochdale, today became only the second person in the UK to have ME - myalgic encephalomyelitis - listed on a death certificate.
Despite being classed as a real neurological disease, many think the condition is not real - even within the medical profession.
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Copy and paste this URL to see the long Facebook post from the ME Association
Code: 
https://www.facebook.com/meassociation/posts/1734001159990868



Facebook post from Merryn's family which shares the same MEA post.
 
Pathologist Daniel DuPlessis said that a post-mortem showed low-grade inflammation of nerve roots. It was suggested that this inflammation could have made her bowel hypersensitive to processing nutrients.

Dr DuPlessis pointed out that Merryn had inflammation of the ganglia - gatekeepers to sensations in the brain. A post-mortem into the only other UK death attributed to ME, Sophia Mirza, 32, in 2006, also found ganglionitis.

ME expert at Salford Royal hospital, Dr Annice Mukherjee, said she was convinced that the illness was responsible for triggering Merryn's intestinal failure.
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This seems to be tremendously validating. I feel very grateful to Merryn's family for allowing the post mortem and for advocating so well, and to the medical staff who testified and the Coroner.

ME Association press officer John Siddle reports from Rochdale Coroners Court
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I thought John Siddle did a very nice job with the report.

Outside court, the 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.
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I hope so too.
 
MeSci said:
Hopefully it will be printed elsewhere, for those of us who aren't on Facebook.
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You can see the report from the link Andy posted.



I can read it even though I don't have a Facebook account. A box pops up asking you to sign in or join, but there is an option to click on "Not Now" on that box which makes it go away (although it has a tendency to pop up quite often).
 
I found this photo of Merryn Crofts taken (I presume) before she became ill.

Just heartbreaking.

Bill


sei_5564273.jpg
 
Two more links :

https://www.mirror.co.uk/news/uk-news/young-woman-bed-bound-three-12559425

A devastating disease that some insist is all in the mind led to the death of a young drama student, an inquest today ruled.

Merryn Crofts, 21, weighed less than six stone and spent the last three years of her life totally bed-bound with severe ME - an incurable condition that affects 250,000 people in the UK.

The youngster was unable to take more than two teaspoons of food before suffering immense gut pain and vomiting, a coroner was told.

Merryn, from Rochdale, Greater Manchester. today became only the second person in the UK to have ME - myalgic encephalomyelitis - listed on a death certificate.

Despite being classed as a real neurological disease, many think the condition is not real - some even within the medical profession.
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Article continues at link above...

https://www.manchestereveningnews.c...ter-news/young-woman-who-spent-years-14678759

A brave young woman who spent years battling ME died as a result of the illness, an inquest has heard.

Student Merryn Crofts died of severe malnutrition caused by the withdrawal of life support nutrition - a condition which was caused by her myalgic encephalomyelitis (ME).

It is only the second time such a conclusion has ever been made in the UK, according to the ME Association.

Merryn’s family hope more will now be done to help the 250,000 people across the UK affected by the ‘devastating and cruel illness’ - which some people refuse to believe exists.

A coroner concluded on Friday that Merryn’s long-standing condition contributed to her death.

“That was the underlying cause that led to everything,” coroner Catherine McKenna said.
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Article continues at link above ...
 
I don’t believe she’s the first to have died of this disease. Others were just not recorded, As the diagnosis is unknown to medical examiners.

I spoke with Richard then Konneysberg a few years ago, and he mentioned that s young man he worked with who had dropped weight to starvation level and who was unable to absorb nutrition due to M.E. The hospital had sent him home, saying that he had anorexia and was vuntarily starving himself. Rich found an M.D. who would work with him, and told him to get the young man started on a PIC line So he would not die.

That was the correct course of action, and he improved. Once the young man (I never learned his name of course, confidentiality and all that) was a little better, he started on the methylation protocol developed by RVK and Dr. Enlander. Rich also stated that there were cases that he found too late, and who died. It did not occur to me to ask what cause of death was listed.
 
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