Merryn Crofts - media and inquest

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?

 

I don't know, but could it be that it's just mentioned on some certificates?

 

I think we'd need some expert opinion to clarify, perhaps?

 

I guess it would depend on whether there was an inquest or not.

It would probably also depend on the coroner. Some being aware that ME is a physical, multi system disorder and so prepared to put that on the certificate. Perhaps others don't believe it is a real disease and therefore don't think it's worth mentioning.

 

Yes I would like to know regarding scans. Given scans can detect inflammation in other areas? If it were possible it Would have big implications for research and research of urgency I would say. I hope it's not the case that it's just cost preventing imaging on larger, alive numbers.

Much respect, sympathy and thanks to the beautiful family for their doing this for merryn and the community. RIP Merryn.


It's good that Merryns difficulties were recognised here but looking at the care she was Getting and medics/tests involved it would have been shocking to suggest her severe issues weren't caused by the ME.

In other cases it's not always been so , you may remember Lois Owen who died in about 2010 due to starvation caused pneumonia aged under 30 I think. She was three stone, her GP testified that they'd agree she was too weak for hospital admission so she hadn't got tube feeding she probably needed although not eating, yet bizarrely IMO there was no blame appointed for that decision plus her past history of anorexia was brought up my others Drs involved, which looked suspect. Her family says she could hardly whisper which is entirely in line to struggling to eat with ME and people who knew her on Facebook said it was ME not anorexia.

 

I wouldn't get excited by the report of ganglionitis. It does not explain much,if anything specific, in relation to ME. If it was a causal feature of even a few percent of people with ME then I think we would have stuff in the textbooks about specific neurological signs - and we don't. The nervous system reports our interaction with the outside world remarkably reliably and in great detail. That means that it also reports when it is malfunctioning very reliably and in great detail. Ganglionitis sufficient to cause significant symptoms would come with objective signs on neurological examination. Very mild ganglions might not,but then it wouldn't cause any serious symptoms either.

I am pretty sure this is a red herrings I don't think it has any relevance to NICE guidelines. It might turn out to be indirect evidence for some underlying problem that causes symptoms in smoother way and therefore be worth research studies, but that is a different matter.

 

Could they be the result of a complication of the illness, rather than a cause? I'm also curious if the patients had Sjogren's instead of/as well, as DRGs seem to be present in some complications of that illness too.

 

From this discussion a few years ago it seems DRG is scannable for by MRI

https://www.talkhealthpartnership.com/forum/viewtopic.php?f=493&t=4600

Re: dorsal root ganglionitis
by Dr Charles Shepherd on Wed Aug 14, 2013 4:49 pm

This finding (ie dorsal root ganglionitis/DRG) is not indicative of a massive infection in the body

DRG is also found in Sjogren's Syndrome (not recognised as an infective condition) where it has been linked to what is called a peripheral neuropathy

And it could well be that this link is relevant to DRG in ME/CFS - because the dorsal root ganglion is a bundle of nerve cells lying outside the spinal cord (but connected to it) where information about sensation is collected, processed and then transmitted.

Inflammation in the DRG could therefore upset the way in which sensations (pain) are being dealt with leading to symptoms such as paraesthesiae (pins and needles, .loss of sensation, or painful sensations.
Dr Charles Shepherd
MB BS, Honorary Medical Adviser, ME Association

Dr Charles Shepherd
Posts: 215
Joined: Wed Aug 07, 2013 11:30 am

Re: dorsal root ganglionitis
by Bluebottle on Wed Aug 14, 2013 4:52 pm

Thank you for your extensive reply.

Is there a test for this on a living person please?
Bluebottle
Posts: 36
Joined: Fri Aug 02, 2013 2:36 pm

Re: dorsal root ganglionitis
by Dr Charles Shepherd on Wed Aug 14, 2013 5:00 pm

You can look at dorsal columns with MRI:

http://jnnp.bmj.com/content/71/4/488.full

but this has not been done in ME/CFS

 

Sjogrens is mentioned in above and I believe the DRG stuff in both illness was suggested as some of reason as to why studying CFS and sjogrens together, if you remember the MRC funded study, was a good idea.

 

Yes see post above

 

http://www.meassociation.org.uk/research/current-research/pathology-of-cfs/

Pathology of Chronic Fatigue Syndrome: Pilot Study of Four Autopsy Cases

International Science Symposium 3-4 – Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Queensland, Australia: Population Health and Neuroimmunology Unit, Bond University.

December 2010

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 The 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 e.g. 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.

 

Assuming a thorough neurological examination has been carried out.

What percentage of ME patients are currently referred to neurologists?

How might that percentage change as MUS, PPS and IAPT services are rolled out?



Meanwhile KCL still has this article (which pre-dates 2004) up on its website:

https://www.kcl.ac.uk/ioppn/depts/pm/research/cfs/patients/physiology.aspx

Mary Burgess PhD - based on the work of Pauline Powell

Information for patients
Physiological aspects of CFS

Introduction
Changes in Muscle Function
Changes in the Cardio-Vascular System
Regulation of body temperature
Reduced calcium levels
Reduced tolerance to activity or exercise
Changes in the nervous system
Changes in mental functioning
Alteration of the biological clocks
Disturbance of the sleep-wake rhythm in CFS
Disturbance of cortisol production
Anxiety and Stress
Life Stress and Low Mood
Conclusions

"...As we said there is good evidence to show that all of the above effects are reversible by a programme of gradual physical rehabilitation."

 

A neurological examination is a routine for any hospital specialist faced with relevant symptoms, not just neurologists. Thousands upon thousands of PWME will see such specialists and if there was clinical evidence of radiculopathy it would have got written in the textbooks by now. It is written in the books for Sjogren's despite the fact that it is actually pretty rare even in Sjogren's.

 

If KCL has learned little else in 14 years, at least it's found its way to a spell checker.

In 2004, that article had read:

"Worrying about problems can disturb sleep at night, which can then
lead to sleeping later the following day and contribute to developing a
poor sleep pattern.

"working on low mood is thus also a vital part of recovery

"As we said there is nowgood evidence to show that all of the above
effects are reversoble by a programme of gradual physical rehabiliation.
Learning to spot and deal with sources of stress is also important.
Lastly, not worrying too much about symptoms is probably crucial The more
one worries about a symptom, the more one focuuses on it, and the more
stress this generates, which in turn worsenes the symptom."

 

Links to further reporting:

https://www.thesun.co.uk/news/6336317/merryn-crofts-myalgic-encephalomyelitis-death-actress/

http://www.dailymail.co.uk/news/art...-killed-rules-coroner-say-condition-mind.html

The Daily Mail has run an article in its print edition today on p. 37.

 

Merryn 's family are amazing. Their quotes are always excellent and describe the disease so well. It most be so hard for them.

Kudos too to the journalists and editors for some very good articles.