Merryn's offical cause of death: ME with inflammation of the ganglia

Countrygirl

Senior Member
Messages
5,166
Likes
26,901
Location
UK
https://www.facebook.com/meassociation/posts/1734001159990868

The results of Merryn's inquest have just been announced by the MEA, and if you are a member of Facebook, you can C&P the above link to read the whole article.

There is just one correction: the MEA claims this is the second occasion where a person has had ME recorded as the cause of death whereas it is the third to my knowledge. My friend The Rev. John Langham who suffered at the hands of his disbelieving GP also had ME listed as cause of death iin 2000/1.


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.

Merryn's mum, Clare Norton, sobbed as she told Rochdale Coroner's Court how her "beautiful" and "energetic" daughter was left wheelchair-bound and reliant on tube feeding.
Despite dozens of medical appointments - including mental health checks for panic attacks - Merryn's condition deteriorated as she suffered breathing problems, exhaustion and excruciating hypersensitivity to touch, light and sound.

She was eventually diagnosed with ME in the summer of 2012.

Stomach problems, and problems swallowing, meant that her weight plummeted to just five-and-a-half stone.

Coroner Katherine McKenna was told that Merryn could take on just 100 calories a day because her gut was in so much pain, and that, by 2015, even two teaspoons of nutrients were intolerable.

Merryn was eventually fitted with an intravenous nutrition line but suffered intestinal failure and was given a terminal diagnosis in 2016..
She died on May 23, 2017, just days after her 21st birthday.

Mrs McKenna today concluded her cause of death as starvation caused by a withdrawal of supportive nutriition, caused by ME. She described Merryn as someone who "bore her suffering with dignity and good grace".

She said: "Merryn had suffered with ME since 2012 which caused severe fatigue, gastointestinal failure, chronic pain, global hypersensitivity, loss of mobility and function.

"Despite extensive investigations no reason for her gastrointestinal failure which led to her reliance on supportive nutriton was found and most likely it was caused by her ME."
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
 

dreampop

Senior Member
Messages
296
Likes
700
Pretty interesting, I wonder how easy/difficult this is to diagnosis. I mean, she must've had an MRI, right? Autoimmune autonomic ganglionopathy seems like it's not diagnosed by MRI, and only 50% of blood tests for the anti-body are effective (GI dysmotility is a key symptom of that illness, which this patient, unfortunately, had). How does one know if their ganglia is inflammed? Doesn't seem as simple as it sounds at first.

I can't help but feel inclined towards autonomic, peripheral neurologic illness based on the symptoms that we see to share, their extremeness, and their varying nature at times. @Cort had a blog recently about dorsal ganglia pressure causing a radiculopathy in some fibromyalgia patients. There is inflammation in the brain stem which receives input from the ganglia. And there is heightened faituge responses to peripheral metabolites. I wonder if this area is overlooked because of the difficulty in researching it and probably because we don't fully understand how to contextualize a problem there if it's not inflammation or structural. And even 'there' doesn't mean much, there are a lot of different parts to the system.
 
Last edited:

ukxmrv

Senior Member
Messages
4,413
Likes
4,624
Location
London
Pretty interesting, I wonder how easy/difficult this is to diagnosis. I mean, she must've had an MRI, right? Autoimmune autonomic ganglionopathy seems like it's not diagnosed by MRI, and only 50% of blood tests for the anti-body are effective (GI dysmotility is a key symptom of that illness, which this patient, unfortunately, had). How does one know if their ganglia is inflammed? Doesn't seem as simple as it sounds at first.
The last time I asked (and I think it was a doctor from the UK Biobank I was talking to) it could only be diagnosed on autopsy as Merryn's was.