Merryn Crofts death ruled to be from ME by inquest

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.

 

There was an exceptionally low grade level of inflammation in the membranes around the brain,

I think this is important.

 

I wonder if there could be any connection to this paper @Andy linked: https://www.s4me.info/threads/intes...e-against-infection-2018-irazoqui-et-al.4189/

It is known that Herpes Variella Zoster can cause ganglionitis (-> shingles). What about the possibility of low-level chronic HVZs "working" on the "nerves"?
Of course, the are other explanations.

 

Of course, Merryn isn't the first person to have ganglionitis at post-mortem.

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.

 

Don't bother watching that video - it says that most people get better! The article's good though.

 

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.

 

Regarding burning mouth:
Burning mouth syndrome and mast cell activation disorder.
https://www.ncbi.nlm.nih.gov/pubmed/21420635

 

I'm so glad for Merryn's parents and family that they have got this vindication for the cause of her grievous suffering and tragic death. It's a drop in the ocean of their loss and trauma, but it's something.

 

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.

 

I get this too. Intermittently, at any rate.

 

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.

 

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

 

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.

 

Do these P.M. findings and the Coroner's decision have implications for the NICE review?

A sufferer who has, sadly, died is shown to have had a disease which could reasonably account for at least some of the symptoms of at least some, but probably many patients.

There is, I presume, no known process by which CBT or GET could have a remedial effect on inflammation of the ganglia.

Is it not now going to be necessary to either rule in, or rule out, ganglionitis? Should it be possible to detect this condition with scans? If not should a specific set of observations be defined to make the diagnosis, and what then is the position with regard to treatment?

 

Just came across this request (have not looked at the contents):
Mentions of postviral fatigue syndrome (benign myalgic encephalomyelitis), deaths registered in England and Wales, 2001 to 2016
Release date:
18 May 2018

Reference number:
008461

Summary of request

This table presents the number of deaths that mentioned postviral fatigue syndrome (benign myalgic encephalomyelitis) on the death certificate, either as the underlying cause of death or as a contributory factor. Figures are based on deaths registered in England and Wales between 2001 and 2016.

Download associated with request

• Mentions of postviral fatigue syndrome (benign myalgic encephalomyelitis), deaths registered in England and Wales, 2001 to 2016 (59.4 kB xls)

 

That lists 88 in 15 years! That's a little under six deaths per year. That's not huge, but it's still way more than we thought!

 

Could be suicides?

 

But would that still be included on the death certificate? Wouldn't they just write 'suicide', rather than 'suicide because the patient had ME'? I may be wrong, but I don't feel like coroners would comment on the reasons behind a suicide.

Besides, I feel like I've seen something about suicide rates that puts it higher than six per year?