Mortality of ME

Statue of an angel kneeling, with her hands outstretched on her knees.
Understanding Mortality Risks in Myalgic Encephalomyelitis (ME)

Page 1 of the ME International Consensus Primer (ICP) explains the underlying biology of ME that can contribute to the risk of death caused by ME.

Pathophysiology: Profound dysfunction/dysregulation of the neurological control system results in faulty communication and interaction between the CNS and major body systems, notably the immune and endocrine systems, dysfunction of cellular energy metabolism and ion transport, and cardiac impairments.

Cardinal symptom: a pathological low threshold of fatigability that is characterized by an inability to produce sufficient energy on demand.”

RISKS

  • Cancer – increased risk from the immune system dysfunction
  • Cardiac – abnormalities in cardiac function caused by ME
  • Malnutrition – in Severe ME, patients lose the ability to ingest sufficient calories.
  • Suicide – severely diminished quality of life with inadequate medical/social support

ADDRESSING MALNUTRITION

Levensbedreigende ondervoeding bij zeer ernstige ME/cvs
Baxter, Speight & Weir (UK) – 14 April 2021

“Some of the most severely affected ME patients experience serious difficulties in maintaining adequate nutrition and hydration and will require feeding enterally. There are a variety of mechanisms whereby nutritional difficulties arise and they are not uncommon in the most severe cases of ME/CFS. Perhaps the commonest is that the patient is just so debilitated that the sheer effort of eating and drinking is too much for them [1]. 

Another potential mechanism is that there are genuine difficulties with swallowing [2]; the causes for this are currently unclear. 

Finally, there may be problems lower down the alimentary tract such as gastroparesis, or features of malabsorption, with the additional possibility of Mast Cell Activation Disorder (MCAD). In these latter instances, enteral tube feeding may fail and recourse to Total Parenteral Nutrition (TPN) may be necessary. A lack of awareness by healthcare professionals of this problem may constitute a barrier to the patient receiving timely artificial nutrition (AN).”

RESEARCH

Mortality in Patients with ME and CFS
McManimen, Devendorf, Brown, Moore & Jason (US) – 12 October 2016
Study points to earlier mortality:  “The findings suggest patients in this sample are at a significantly increased risk of earlier all-cause (M = 55.9 years) and cardiovascular-related (M = 58.8 years) mortality, and they had a directionally lower mean age of death for suicide (M = 41.3 years) and cancer (M =66.3 years) compared to the overall U.S. population [M = 73.5 (all-cause), 77.7 (cardiovascular), 47.4 (suicide), and 71.1 (cancer) years of age].”

Risk factors for suicidal ideation in a chronic illness
Elliott & Jason (US) – 14 October 2022
“This study presents a set of risk and protective factors for suicidal ideation in people with ME/CFS. Many of the risk factors are potentially modifiable, such as sleep disruption and social stigma.”

CASE STUDIES

Merryn Crofts (21)
Inquest Ruling: Young drama student Merryn Crofts killed by M.E. – 18 May 2018

“Mrs McKenna today concluded her cause of death as starvation caused by a withdrawal of supportive nutrition, caused by M.E. She described Merryn as someone who “bore her suffering with dignity and good grace”.  “She died on May 23, 2017, just days after her 21st birthday.”

“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. A post-mortem into the only other UK death attributed to ME, Sophia Mirza, 32, in 2006, also found ganglionitis.”

Sophia Mirza (32)
The Inquest into the death of Sophia Mirza – 13 June 2006
ME/CFS: The Death of Sophia Mirza – 30 August 2009 (5:40)

“The verdict was Acute aneuric renal failure due to dehydration arising as a result of CFS”

“In the end it was stated that CFS is a modern word for ME.  This is why CFS was used on the death certificate.

“The pathologist also said -‘ME describes inflammation of the spinal cord and muscles. My work supports the inflammation theory. There was inflammation in the basal root ganglia.’”

Lynn Gilderdale (31)
‘It must have been hell on earth.’ ME Essential review of Kay Gilderdale’s book– 28 August 2011

“After Lynn died at the age of 31, 17 years into an illness which left her paralysed and unable to speak, a pathologist who specialized in ME discovered ‘dorsal root ganglionitis’ – infected nerve roots – and nodules of Nageotte, little tombs of dead cells, in her spinal cord. 

“These could have caused her terrible pain and sensory nerve damage. They found similar cells in the body of Sophia Mirza, an ME sufferers who died in 2005 at the age of 32, and I believe in other sufferers.”

Maeve Boothby O’Neill (27)
When the doctor doesn’t listen– by David Tuller – 27 January 2023

“At 1:45 a.m. on October 3 [2021], “Maeve was awake but incapable of utterance or focusing.” At 3 a.m., she was found dead. Doctors confirmed her death at 11 a.m., and her body was removed to a funeral home in the early afternoon.

That evening, Maeve’s GP visited [mother] Boothby. “She said she had never had a patient so poorly treated by the NHS,” wrote Boothby.

The inquest, which is not yet scheduled, will presumably shed light on the events that led to Maeve’s death and on the hospital’s actions in the matter. Philip Spinney, the senior coroner for Exeter and Greater Devon, declined to be interviewed but noted in an email that the process is at the “evidence gathering stage” and that the inquest itself could last at least two days.”

AUTOPSIES

This article, Autopsy Findings from a Special PWC/ME at the National CFIDS Foundation website gives insight into one case study.
“Our patient is a longtime PWC/ME who had been seen by a battery of physicians. Like this patient, many have been on various pain medications that are quite common for those with this disease. Upon arrival at the hospital, they developed multisystem organ failure secondary to severe rhabdomyolysis. Acute renal failure and subsequent shock led to their death.”

Tissue specific signature of HHV-6 infection in ME/CFS
Kasimir, Toomey, Liu, Kaiping, Ariza & Prusty (Germany & US) – 14 December 2022 – ” Here in this paper, we attempted to analyze active HHV-6 transcripts in postmortem tissue biopsies from a small cohort of ME/CFS patients and matched controls by fluorescence in situ hybridization using a probe against HHV-6 microRNA (miRNA), miR-aU14. Our results show abundant viral miRNA in various regions of the human brain and associated neuronal tissues including the spinal cord that is only detected in ME/CFS patients and not in controls.  …  these findings indicate that active HHV-6 infection in the frontal lobe, basal ganglia, and dorsal root ganglia may lead to several characteristic symptoms of ME/CFS, and future studies should elucidate these potential links.”

MEMORIALS

Too many of us have either lost someone to ME or know someone who has.  Below are two avenues you can take to memorialize a loved one.

  1.  National CFIDS Foundation
    This group out of Massachusetts has an extensive Memorial List which is updated semiannually.  You can submit your information to info@ncf-net.org.  Any donations received goes towards “…help[ing] fund medical research to find a cause, expedite treatments and eventually a cure for this devastating disease”.
  2. ME/CFS Memorial Page
    This Facebook group posts memorials for victims of ME/CFS.  You need to join the group in order to post to their page.

    “Hi everyone. Please remember that this is a memorial page. Out of respect to all our members who are grieving, please reserve this space for remembering and healing. Links to news, organizations, sites, etc are not appropriate here and will be removed at the discretion of administrators. In addition, please use discretion when posting personal stories, artwork, poems, etc. that do not directly meet the guidelines of this group. Repeat violators will be removed without warning. Thank you for your understanding.”

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