Merryn Crofts - media and inquest

Jonathan Edwards said:
Where does that information come from?
Click to expand...

The inquest then heard evidence from Dr Du Plessi, the pathologist who conducted Merryn’s post-mortem.

He said: “The post-mortem identified a number of abnormalities. There was evidence of low grade inflammation in the nerve roots off the spinal cord and in the ganglia. There was an exceptionally low grade level of inflammation in the membranes around the brain, and a marginal increase in inflammation in the brain. This was not enough to be considered encephalitis.

“There was also a destruction of the nerve fibres.

“It is impossible to say how long the inflammation had been there or how severe symptoms are.”

Dr Du Plessi explained how tests that could rule out disorders like EDS or Lyme Disease should have been conducted whilst Merryn was alive, but they would not explain the inflammation she was experiencing.

No evidence was found of an infection, the inquest heard, but this could not be ruled out for several reasons. Merryn’s immune system may not have responded as expected, and no blood samples were taken during the post-mortem due to the poor quality.
Click to expand...

http://www.rochdaleonline.co.uk/new...death-attributed-to-myalgic-encephalomyelitis
 
That all seems a bit vague. It does not sound like anything that would explain her illness to be honest. serve root inflammation usually produces symptoms like sciatica.

Hopefully there may be a proper scientific report drawn up.
 
chrisb said:
Could inflammation of the ganglia cause the parasthesia which were part of Ramsay's criteria?
Click to expand...

Yes, but I think that connection is also too vague to be a reliable pointer. Inflammation of nerve roots, or radiculopathy, is normally easy enough to diagnose clinically on the basis of a specific pattern of physical signs. People with ME in general do not have that pattern.

I think it is worth remembering that the post mortem findings in one person with a type of illness do not necessarily mean that anyone else with a similar type of illness has anything similar. There may be an important clue in this finding but before drawing any conclusions I would like to actually look at the pathology slides.
 
Of course, Merryn isn't the first person to have ganglionitis at post-mortem.

Pathology of Chronic Fatigue Syndrome: Pilot Study of Four Autopsy Cases
, the position may become more clear.
DG O’Donovan1, 2, T Harrower3, S Cader2, LJ Findley2, C Shepherd4, A Chaudhuri2
1Addenbrooke’s Hospital Cambridge UK
2Queen’s Hospital Romford Essex UK
3Royal Devon & Exeter Hospitals UK
4Honorary Medical Advisor to ME Association UK

Chronic Fatigue Syndrome / Myalgic Encephalomyelitis is a disorder characterised by chronic exercise induced fatigue, cognitive dysfunction, sensory disturbances and often pain. The aetiology and pathogenesis are not understood.

We report the post mortem pathology of four cases of CFS diagnosed by specialists.

The causes of death were all unnatural and included: suicidal overdose, renal failure due to lack of food and water, assisted suicide and probable poisoning.

Selected portions of tissue were made available by the various Coroners in the UK and with the assent of the persons in a qualifying relationship.

The cases were 1 male, and 3 female. Ages (years) M32, F32, F43 & F31.

One case showed a vast excess of corpora amylacea in spinal cord and brain of unknown significance but Polyglucosan Body Disease was not supported by clinicopathologial review. No ganglionitis was identified.
One case showed a marked dorsal root ganglionitis and two other cases showed mild excess of lymphocytes with nodules of nageotte in the dorsal root ganglia.

This raises the hypothesis that dysfunction of the sensory and probably also the autonomic nervous system may lead to abnormal neural activity eg hyperalgesia & allodynia rather than anaesthesia and may explain some of the symptoms of CFS / ME such as pain, hypotension, hyperacusis and photophobia. However, the syndrome may be heterogeneous.

Nevertheless, the precise relationship of fatigue, which may be either peripheral or central, to abnormalities in the peripheral nervous system (PNS) needs to be studied.

The differential diagnosis of ganglionitis should be investigated in CFS / ME patients hence Varicella Zoster, Lyme disease, HIV, Sjogren’s disease, paraneoplastic sensory ganglionopathy should be excluded by appropriate history and tests.

Thorough histopathological study of cases coming to autopsy may help to confirm or refute the hypothesis, that CFS is a disease process, and whether the symptomatology may be explained by inflammation of the sensory and autonomic divisions of the PNS.

A specific CFS / ME brain and tissue bank in the UK is proposed.
Click to expand...


It's not exactly a proven pathological finding in all cases, but it warrants further investigation. For example, do these patients represent misdiagnoses, or a subgroup, or something else?
 
A very tragic death for this poor girl and at such a young age. Her family must be devastated but relieved to have Merryn's death attributed directly to ME. I'm so sorry for them all but I too appreciate their story being told. I'm very grateful to hear that she will live in our minds as a true heroine of this dreadful disease, as will all those who have suffered to the end.

God Bless the family. and thank you.
 
I would like to add that when I started with symptoms, I had terrible facial pain and burning mouth. My GP said the nerve endings in my face were inflamed. This settles but is still there. I have all the symptoms of ME but infections cause me to become confused if not dealt with immediately. I also have episcleritis, which is inflammation in my eyes and causes neuropathic pain and light sensitivity.

Constant burning pain all over and tinnitus. The usual flu type symptoms along with all other ME problems.

Inflammation seems to be my worst enemy. TIA with throat infection. E coli and possibly other viruses all causing problems in brain.

I wish I had the answers.
 
ME3 said:
I would like to add that when I started with symptoms, I had terrible facial pain and burning mouth. My GP said the nerve endings in my face were inflamed. This settles but is still there. I have all the symptoms of ME but infections cause me to become confused if not dealt with immediately. I also have episcleritis, which is inflammation in my eyes and causes neuropathic pain and light sensitivity.

Constant burning pain all over and tinnitus. The usual flu type symptoms along with all other ME problems.

Inflammation seems to be my worst enemy. TIA with throat infection. E coli and possibly other viruses all causing problems in brain.

I wish I had the answers.
Click to expand...
Regarding burning mouth:
Burning mouth syndrome and mast cell activation disorder.
https://www.ncbi.nlm.nih.gov/pubmed/21420635
 
Jonathan Edwards said:
serve root inflammation usually produces symptoms like sciatica.
Click to expand...
Severe ME here. Sciatica describes one of my most presistent neurological symptoms. A numb tingling type of pain from the left side of the lower back/buttock, down the left leg, that ends up in the heel. My left side is in general weaker. An EMG/Neurography showed some abnormalities, but not enough to make an Neurologist take action.

With severe ME a numb and painful leg is the least of our problems, this is the kind of things that I suspect many even forget to tell their doctor about.
 
Rain said:
Severe ME here. Sciatica describes one of my most presistent neurological symptoms. A numb tingling type of pain from the left side of the lower back/buttock, down the left leg, that ends up in the heel. My left side is in general weaker. An EMG/Neurography showed some abnormalities, but not enough to make an Neurologist take action.

With severe ME a numb and painful leg is the least of our problems, this is the kind of things that I suspect many even forget to tell their doctor about.
Click to expand...

I get this too. Intermittently, at any rate.
 
Inara said:
Just looked that up...I have this pain you describe, too. Don't know if it's sciatica or something with the disc or whatever.
Click to expand...

Sciatica is something with the disc and a significant proportion of 'healthy' people have it. Symptoms in a single root like this - going down to the heel - are almost certainly sciatica rather than a radiculopathy of more unusual cause.
 
Letters published in New Scientist, in July 2006, in response to:

https://www.newscientist.com/article/dn9342-first-official-uk-death-from-chronic-fatigue-syndrome/

First official UK death from chronic fatigue syndrome

DAILY NEWS
16 June 2006

By Rowan Hooper



https://www.newscientist.com/letter/mg19125620-600-not-sadly-the-first/

Published 26 July 2006

Not, sadly, the first

From Richard Senior

Your news item claims that Sophia Mirza’s death was the first in the UK to be ascribed to chronic fatigue syndrome (24 June, p 7). Untrue. My wife died of CFS in January 2003, in north Wales, and the coroner entered CFS as the cause.


From Sue Waddle, Invest In ME

Following your excellent article on the death of Sophia Mirza from myalgic encephalomyelitis (ME), otherwise known as chronic fatigue syndrome, I have been contacted by a number of people from all over the world to tell me that they know of deaths from ME. I am informed that, …

Glastonbury, Somerset, UK
 
Last edited:
I am saddened to report that whilst searching to confirm the name of Richard Senior's wife, which was Annabel, I find that Richard passed away in 2015.

Obituary on Pages 81-82

https://www.shrewsbury.org.uk/sites...iles/old_salopians/Salopian157_Winter2015.pdf

THE SALOPIAN Issue No. 157 - Winter 2015

(...)

In his later years, Richard set up online self-help groups for people world-wide who suffer from CFS/ME, a muchmisunderstood illness, with a separate group for their carers. This grew out of his caring for his wife, Annabel, who eventually died of her illness, the first official death in the UK from CFS/ME. She died, harrowingly, by starving herself to death at home, ignored by the NHS. Richard went on to counsel CFS/ME sufferers and their carers right up to his last days...

I recall having contact with Richard when he ran a carer's group.

Edited to insert additional content:

https://www.foodsmatter.com/allergy_intolerance/total_food_intolerance/articles/annabel_senior.html


http://www.ncf-net.org/memorial.htm

Annabel Senior, aged 60, died on January 8th after 45 years of CFIDS/ME. Toward the end, she was unable to eat anything due to multiple abreactions. She lasted for nearly 53 days without food, and only gave up water toward the end, because she was too weak to swallow. Annabel was 15 when she became sick and died at age 60. The coroner's report said, ""Death due to Chronic Fatigue Syndrome...1a. Left ventricular failure, 1b. Occlusive coronary artery atheroma." She leaves her constant caregiver and husband, Richard. Annabel lived in Conway Valley, North Wales in the United Kingdom.
 
Last edited:
You must log in or register to reply here.
Back
Top Bottom