Autopsy findings: Summary of discussions

Marylib

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@Pyrrhus - thanks for this thread. I imagine there are various stories scattered through the forum over the years. It's such a fine line in terms of discouragement and encouragement, but so many are already gone - the famous ME Day founder was someone who took his own life and I am quite sure he would be happy to know that someone is gathering these threads together. The issue of case definition and the IOM criteria was so hotly debated and what came of it? The Canadian Criteria was what people wanted to remain for research rather than spend the paltry $1 million USD on yet another criteria. But the situation is as yet so dire, I think those who participated in the IOM criteria just wanted something as proof. It's all about money - it's always money.
 

Countrygirl

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On 18th June 1995, Consultant Radiologist Dr Eric Booth died from ME/CFS aged 48 years, having had ME/CFS for 16 years. Four years before he died, Booth wrote: “I have been very seriously ill for the last five years, being totally bedridden (but) am unable to convey this to my medical colleagues. I have come to believe that physicians suffer from compassion fatigue” (BMJ 28 October 1995:311). The autopsy findings were disturbing but were suppressed; Booth’s next of kin was warned by the Official Solicitor that action would be taken against her if she divulged the post‐mortem findings, to the extent that she was reduced to a state of chronic fear.
 
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Countrygirl

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On 13th December 1988 Brynmor John MP died from ME/CFS. His experience of the illness was all too familiar: ‘Though there is only a slight gradient from our house to the main road, it could have been the North face of the Eiger. I just could not get up it’. He found himself unable to dress; the slightest exertion exhausted him and it took days to regain his strength.

He was irritated by the profusion of psychiatric comment and was trying to ensure better understanding of ME/CFS (Perspectives, Summer 1991:28‐30). Brynmor John suddenly collapsed and died as he was leaving the House of Commons gym after having been advised to exercise back to fitness. In 1992, Professor Hugh Fudenberg from South Carolina (a pioneer of clinical immunology and one of the most distinguished minds in the field, being awarded The Medal of the Institut Pasteur at the age of 32; he was also a Nobel Prize nominee) stated that there is “a greater death rate than normals in the same age range” (The Clinical and Scientific Basis of Myalgic Encephalomyelitis Chronic Fatigue Syndrome: ed. BM Hyde, published by The Nightingale Research Foundation, Ottawa, Canada, 1992: page 644). This was corroborated 14 years later by Professor Leonard Jason et al, who found that the three most prevalent causes of death in ME/CFS patients were heart failure, suicide and cancer and that the age of death is considerably younger than in the general population (Health Care Women Int 2006:27(2):615‐626).
 

Countrygirl

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Alison Hunter, severe ME patient, from Australia died in 1996. Here death certificate stated the cause of death as “Severe progressive ME”. She was just 19 years old.

The pathologist’s report confirmed that she had severe oedema of the heart, liver and brain. She had also suffered severe ulceration to her throat, seizures, paralysis, other neurological symptoms, and gastrointestinal paresis with failure of the gut and bowel.

James Ibister, Head of Haematology at Royal North Shore Hospital, Sydney, said: “To be honest, I felt helpless towards the end. On many occasions I was extremely embarrassed about the way she was treated by the system. A lot of terrible things Alison went through were doctors projecting their own fears and inadequacies. How anyone could not think she had a major medical illness was beyond me”.

Alison, he said, suffered “terrible physical distress compounded by insults and inhumanity” (www.ahmf.org).

In 1998, an ME/CFS sufferer wrote: “I’ve had ME for nearly five years, 18 months of which were a living hell. The physical suffering (inability to walk unaided, chew, swallow, breathe properly, hold my head up, hands which became spastic) was bad enough, but the brain symptoms were at times unbearable – my brain exploding with stimulus until I thought I’d gone mad (and) the room spun like I was drunk, making me feel physically sick. The bed felt like it was moving. I had explosions of light before my eyes. Worst of all were the ‘seizures’, which felt like I was having a stroke – pins and needles on my head and face, drooping muscles around my mouth, my head would start to tip backwards, absolutely terrifying. I live alone, yet have been refused home care, disability living allowance or any form of medical advice. The public need to be shocked by seeing the severely affected, those being tube fed, shaking, uncontrollable, paralysis, unable to hold up their head, speak, see, control bowel movements. The myth that ME is never fatal must be dismissed. I know of several people who have died of the complications ME can bring” (Perspectives, September 1998:26)
 

Countrygirl

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UK Coroners are now providing incontrovertible evidence that ME/CFS can lead to death. The UK authorities keep no statistics, so the actual number of deaths from ME/CFS remains unknown.

In 1992, a 30 year old woman in the UK who had suffered from ME/CFS for five years committed suicide; the post‐mortem study (using polymerase chain reaction) showed enteroviral sequences in samples from her muscle, heart, the hypothalamus and the brain stem. No enteroviral sequences were detected in any of the control tissues. The researchers stated: “The findings further support the possibility that hypothalamic dysfunction exists in the pathogenesis of (ME)CFS (and) they suggest that the chronic fatigue syndrome may be mediated by enterovirus infection and that persistent symptoms may reflect persistence in affected organs” (McGarry et al. Ann Intern Med: 1994:120:11: 972‐3).

In 1998, there was the well‐reported case of Joanna Butler, a young woman aged 24 from Leamington Spa, Warwickshire, who was severely affected by and died from ME/CFS. She was nursed at home by her parents and was bed‐bound for the last two years of her life and required tube‐feeding. Although she died of ME/CFS, her parents were suspected of having caused her death by administering too high a dose of a medically‐prescribed morphine‐related compound, and the local paper (Courier) reported that the

Warwickshire County Coroner (Michael Coker) ordered a police investigation. This investigation cleared them of blame but they were hounded to such an extent that they were forced to move away from the area (see the press reports in The Observer, 19th March 1998: “Tragic death of young ME victim” and the reports in the local paper, including the Courier, which carried a report on the ‘many who die each year’ of ME). 17 In January 2003 the wife of Richard Senior died of ME/CFS; the North Wales Coroner entered CFS as the cause of death on the death certificate.

On 4th July 2005 Casey Fero died of ME/CFS at the age of 23 in the US. The autopsy showed viral infection of the heart muscle. The pathologist was shocked at the state of Casey’s heart, which showed fibrosis indicating the presence of a long‐standing infection.

In November 2005 Sophia Mirza died of ME/CFS in the UK and the death certificate of 19th June 2006 gives CFS as the cause of death, with acute renal failure. Another UK death from ME/CFS occurred in May 2008 when a severely affected and courageous woman died in the North of England; her death certificate gives “Myalgic encephalomyelitis” as the cause of death. Evidence from autopsies of people who have died from ME/CFS is chilling.

In Sophia Mirza’s case (a 32 year old woman sectioned by psychiatrists who alleged that she was suffering from a mental disorder so she was kept in a locked ward and, according to her mother’s evidence, denied basic care), there was evidence of severe inflammation throughout 75% of her spinal cord.

This was one of three such autopsies spoken about by Dr Abhijit Chaudhuri at the Royal Society of Medicine meeting on 11th July 2009).

A 2005 autopsy in the US showed oedema of the lower limbs; the alveolar spaces of the lungs were filled with inflammatory cells and there were small emboli scattered throughout the arteries; there was marked congestion of the liver and spleen; the bowel was ischaemic; there was mild inflammation of the kidneys; there was also evidence of rhabdomyolysis (the breakdown of muscle fibres resulting in the release of muscle fibre contents into the circulation, some of which are toxic to the kidney); the bladder showed a hyperplastic epithelium; the thyroid showed colloid filled follicles, with scattered dystrophic calcifications and calcification of the small arterial walls; the right occipital lobe of the brain showed areas of degeneration and degenerated astrocytes, and the white matter surrounding this defect appeared puckered. The Medical Director of The National CFIDS Foundation (chronic fatigue immune dysfunction, a commonly‐used US term for ME/CFS), Dr Alan Cocchetto, commented: “Every time you look closely at someone with this disease, you see immense suffering. There appears to be no limit as to the human toll that this disease is capable of exerting on patients” (http://www.ncf‐net.org/forum/Autopsy.htm).
 
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Countrygirl

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A few weeks ago, a young woman of 27 who lives quite close to me died of severe ME. She died because the local hospital is hostile and abusive to ME patients.

She required a feeding tube and was taken to the hospital by her mother. The doctors were dismissive and rude which is their usual behaviour to anyone with ME.

A ME consultant traveled hundreds of miles to the hospital to try to reason with the doctors but they were dismissive of the consultant.

The young woman was taken home by her mother. The consultant write to the CEO of the hospital saying they would be responsible for a death if they did not fit an appropriate tube. The CEO never bothered to reply.

Despite how serious the situation was by this point, the hospital did not want to fit the appropriate feeding tube to save her life. The patient also felt she could no longer tolerate the abuse of the hospital.

She died at the beginning of October at home with her mother.
 
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Countrygirl

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About two years ago, another woman was admitted into hospital in Wales.

The hospital believes that ME is a psychiatric illness.

While confined to bed, she would be regularly visited by a psychiatrist who concentrated on trying to make her confess some reason from her life that made her confine herself to bed. Life in the hospital was miserable and totally unsuitable for a patient with ME.

She, too, required a feeding tube but was denied one. Eventually, when she sent home, she became totally unable to eat or swallow. She was cared for by her elderly parents until she died a few months later which was earlier this year. Sadly, there has been no autopsy report.
 

SWAlexander

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About two years ago, another woman was admitted into hospital in Wales.
Life in the hospital was miserable and totally unsuitable for a patient with ME.
Sadly, there has been no autopsy report.
Reading this I conclude there is still too much cruelty in this world. To find this behavior among med professionals in these days explains to me (again) why more people are sick instead of living a happy and good life.
One other conclusion I draw from such inhumanity is, that sick people still belong to the cast aside and unwonted who would taint the name of politicians and democratic politics.
The sad part is that too many medical professionals, who supposed to care and save human lives, are among and more concerned about their status then the ill. What has really changed in the last 80 years? What are we - collateral damage of a status driven solipsistic society?
Sorry, I am very angry at the moment.
 
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Second star to the right ...
OH, God ...... I didn't think I could feel much worse, but wow. Just ..... wow ....

On the gratitude side (and sometimes it's hard to find one), it makes me feel less uncomfortable about my abiding fear and loathing for Drs, generally. I'm sure there are exceptions, but I haven't been that lucky lately.

And by lately, I mean mostly forever.

Thank you @Pyrrhus and @Countrygirl and @SWAlexander
 
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Second star to the right ...
It's all about money - it's always money.
Almost without exception. And power. What greater power than to deny someone a decent life, or even life itself?
Maybe we should commission someone to read them out into a video and we can publish it or send it to news channels to raise awareness.
Would do absolutely no good.


PS, @GlassCannonLife .... dont mean to be a bummer, but given the masses of personal stories, YouTubes, research, testimonials from Drs who've suffered from ME, witnessings from devastated caregivers, heartbreaking pleas from families watching their child/husband/wife/sibling fade into grey from the lively, bright light they once had been .... after all this, the mass of the medical community is still clinging to their convenient and largely remunerative little fairy-tale that it's all in our silly little twisted heads and curable with large, often unconscionable, doses of anti-d's, anti-depressants, anti-psych meds. So I dont think much, other than time and the development of a treatment protocol that holds out the promise of lavish financial rewards for them, is going to shift them off their deadly perches.
 
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In my big circle of friends, US and Germany, the arrogance and incompetence of the white coats is well known
It's disconcerting to know that this is rife in Germany as well, and probably even harder to deal with on your own since they've locked down all supps, vits, etc, so getting any of them, or getting them in meaningful treatment amounts, is virtually impossible without a prescription.

Or at least, that's the way it was a few years ago. Hopefully, things have changed ....


Thank you for your reassurance re my not being a bummer. Sometimes I feel like the Grim Poster ....
 

Pyrrhus

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Alison Hunter, severe ME patient, from Australia died in 1996. Here death certificate stated the cause of death as “Severe progressive ME”. She was just 19 years old.

The pathologist’s report confirmed that she had severe oedema of the heart, liver and brain. She had also suffered severe ulceration to her throat, seizures, paralysis, other neurological symptoms, and gastrointestinal paresis with failure of the gut and bowel.
Here is the autopsy report for Alison Hunter:

Coxiella burnetii dormancy in a fatal ten-year multisystem dysfunctional illness: case report (Sukocheva et al., 2016)
https://pubmed.ncbi.nlm.nih.gov/27091026/
Comprehensive neuropathological assessment at the time of autopsy had not revealed gross or microscopic abnormalities. The aim was to extend detailed studies with the post-mortem samples and identify possible factors driving severe disturbance of homeostasis and organ dysfunction exhibited by the course of the patient's ten-year illness. [...] Immuno-staining analysis for astrocyte cytoskeleton proteins using glial fibrillary acidic protein (GFAP) antibodies showed a reactive morphology. Coxiella antigens were demonstrated in GFAP immuno-positive grey and white matter astrocytes.
 

lenora

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@Pyrrhus....how sad and only 19 years of age.

I read many of the abstracts.....and it certainly ties in with her visit to a farm, as well as another case where a farmer developed Q.

More and more we're coming to the understanding that viruses can be dangerous. In the end, it would seem that some bodies are just more susceptible than others. I don't even recall that there was an outbreak of Q in Birmingham....I wonder if others were affected?

On our national news the other evening, it was stated that climate change is going to contribute to more and more rogue viruses. We'd better be prepared if this proves to be true. I wish my daughters took it all more seriously. Thanks for the info. Yours, Lenora.
 

Pyrrhus

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it certainly ties in with her visit to a farm, as well as another case where a farmer developed Q.

More and more we're coming to the understanding that viruses can be dangerous.
What's particularly sad is that Q Fever is caused by bacteria (Coxiella Burnetii), not by a virus.

So, in theory, antibiotics could have helped her...
 

SWAlexander

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Many bacteria like Coxiella Burnetii have not been detected because no tests were ordered or only looked for viruses.

Example: Corynebacterium (different kinds)
Diphtheria is a serious infection caused by strains of bacteria called Corynebacterium diphtheriae that make a toxin (poison). It can lead to difficulty breathing, heart failure, paralysis, and even death.

In my case, 3 1/2 weeks after surgery Lumbar spinal hardware infection, Corynebacterium was accidentally discovered.
Hospital lab report data 4/7/16
Body fluid back lumbar spine superficial GS/CX:
very rare growth: bacteremia:
Staph epidermidis and Peptostreptococcus, Peptostreptococcus,
one colony Staph caprae,
Corynebacterium species,”
 

lenora

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What's particularly sad is that Q Fever is caused by bacteria (Coxiella Burnetii), not by a virus.

So, in theory, antibiotics could have helped her...
What's particularly sad is that Q Fever is caused by bacteria (Coxiella Burnetii), not by a virus.

So, in theory, antibiotics could have helped her...

Oh, that is especially sad. I didn't realize it was a bacterial infection and yes, antibiotics could have most likely saved her life. How many were affected in Birmingham....and were properly diagnosed, I wonder.

My childrens' generation was brought up with none of the viruses and bacteria that we commonly knew about. Unfortunately this has led to what I refer to as "magical thinking" on their part. Nothing is serious....but perhaps COVID has taught at least one good lesson, and one hopes they'll remember it. There are many things in nature that we don't commonly have to understand....they occur. Thanks for the correction. Yours, Lenora.
 

SWAlexander

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Sepsis - lactic acid - tissue hypoxia
ATP
(Adenosine triphosphate) an be seen as a universal energy source that is required in many vital cellular functions.

Increased blood lactate levels: a marker of...?
Since Meakins in 1927 described the relationship between increased blood lactate levels and the presence of oxygen debt (tissue hypoxia) in patients with circulatory shock [1], lactate levels have been used to diagnose and monitor the treatment of these patients.
However, as lactate is a normal (end) product of metabolism the relationship between increased lactate levels in patients and shock could be much more complicated. In the current paper we discuss the metabolism of lactate and its clinical implications.
https://acutecaretesting.org/en/articles/increased-blood-lactate-levels-a-marker-of
 
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