Severe ME day is an initiative of the 25% ME group for the severely affected.
It is held annually on 8th August to commemorate Sophia Mirza’s birthday and it’s purpose is to remember and raise awareness of those deceased and severely affected by ME. Sophia Mirza (1973 – 2005) died in distressing circumstances in November 2005. The coroner was specific about the medical cause of Sophia’s death and it was recorded as 1a) acute anuric renal failure; 1b) CFS. The second cause was recorded as including dorsal root ganglionitis. Sophia died as a result of acute renal failure arising as a result of ME/CFS.
However there have been a few members of the ME community who’ve seemed keen to place the cause of death on acute anuric renal failure as a result of dehydration. These people are obviously ignorant of the fact that death in dehydration is caused by brain swelling, not renal failure. Sophia’s brain was perfectly normal under standard autopsy examination with no signs of swelling. Her death was as a result of end organ failure as the result of ME.This is not an unheard of before phenomenon in ME/CFS either.
It wasn’t, as has also been claimed, the first known death as the result of ME/CFS. ME is described as “benign” but this only means non-fatal in the short term. Even though the pathology precipitating death varies widely, as early as 1957, Dr Andrew Lachlan Wallis reported the post-mortem histopathology on a female from Cumbria who had died of ME; the report can be found in Wallis’ Doctoral Thesis (held at the University of Edinburgh and essential reading for anyone with an interest in ME/CFS; see also “Vade Mecum” by E. Marshall and M. Williams; Co-Cure ACT: 29th June 2005, which contains a summary of the thesis). The histopathology report states:
“There are in the entire diencephalon, particularly around the third ventricle, numerous small haemorrhages, which extend into the adjacent parts of the mid-brain. Similar haemorrhages can be seen in the corpora mamillare. The haemorrhages are mostly around the small vessels but some are also to be seen in the free tissue. This is a significant finding”.
In ME/CFS, males die predominantly from cardiac failure and females die predominantly from neurological complications, sometimes manifesting as tumours, and both sexes may die from pancreatitis. A memorial list can be found on the CFIDS website.
The secondary recorded cause of death in Sophia Mirza’s case was dorsal root ganglionitis. This is not surprising as inflammation of the brain and spinal cord is an important part of the ME pathology and indeed what the name Myalgic Encephalomyeitis (M.E) stands for;
- My = muscle
- Algic = pain
- Encephalo = brain
- Mye = spinal cord
- Itis = inflammation
Much of this information I gathered from the document “INQUEST IMPLICATIONS? By Eileen Marshall and Margaret Williams, 16th June 2006” which concludes
“To deny the existence of inflammation in ME/CFS is to deny reality, for which some UK psychiatrists (and those members of the medical profession who support their ill-founded notions without bothering to consider the actual evidence) are notorious.
The only way forward is biomedical research, but it seems that in the UK, science and humanity count for nothing when dealing with those blighted by the devastation of ME/CFS.
This was concisely exemplified by Professor Peter White’s remarks to Dr Vance Spence at the third Oral Evidence Session of the Gibson Parliamentary Inquiry into ME/CFS on 7th June 2006, which were words to the effect that:
“If WE hadn’t got the money, do you really think that the MRC would have given any money to YOU?”.
It seems inevitable that there will be many more cases like that of Sophia Mirza.”
However Eileen Marshall and Margaret Williams underestimated the strength, conviction and perseverance of the ME/CFS community!
That’s enough about the dying, now let’s turn our attention to those who are currently surviving severe ME/CFS.
One of IiMER’s foundation research projects, “A ROLE FOR A LEAKY GUT AND THE INTESTINAL MICROBIOTA IN THE PATHOPHYSIOLOGY OF MYALGIC ENCEPHALOMYELITIS”, aim was to find out weather there were any apparent changes in the intestinal barrier function and/or microbiota of people with ME and whether microbe-driven inflammatory responses can provide an explanation for the pathophysiology of ME. It is the foundation research project in their proposal for a research and development facility which could lead to a UK Centre of Excellence for ME in Norfolk.
Autoimmune reactions lead to inflammation, increased permeability of blood vessels (as has been found in ME patients, described above) and migration of lymphocytes to sites of injury. Microglia within the brain can be primed during chronic inflammatory diseases, but can then induce inflammation in the brain when they are triggered by a second inflammatory challenge such as a systemic microbial infection. This raises the possibility that the damaging neuro-inflammation seen during ME may be triggered by systemic infections.
The gastrointestinal tract contains a microbiota consisting of a vast number of bacteria and viruses. The microbiota can influence intestinal barrier function and host defence against microbial challenge. Changes in the microbiota can cause local and systemic chronic inflammation.
This research has included people who are severely affected. It is being led by Professor Simon Carding at the Norfolk institute of food research/ UEA. As there has been no ME specialist in Norfolk since 2007 (something I know only too well as I live in the area and have had to cope without a local specialist consultant for the past decade) and the research requires a named doctor, patients providing samples for the research are under the care of Dr. Amolak Bansal of Epsom and St. Helier NHS Trust in Surrey. The researchers from Norfolk have been traveling down to Surrey to take samples from the house/bed bound patients and from house-matched healty controls to filter out what’s shared in the microbiome from shared environment.
There are now two more research projects undergo in IiMER’s Gut research project. Find out more
What’s more the whole of the first £100,000 of the first foundation research project was raised by “Let’s do it for ME”, a patient driven campaign to raise funds for biomedical research into ME/CFS. Many of the patients who raised it are severely affected themselves. The two later research projects are being funded jointly by IiMER’s LDIFME campaign and the universities involved.
Any views expressed in this blog post are those of the blog author R. Amor and not necessarily those of IiMER or LDIFME