Deaths from ME/CFS

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WinterSparrow

New Member
For a book that I am writing, I am looking for published articles or research about non-suicide deaths from ME/CFS. I’ve written about Sophia Mirza, and have sources for that, but somewhere I read that there have been others in the US and Australia, but I've been unable to locate those sources. Can anyone help with information about deaths from ME/CFS in the US, Australia, or anywhere in the world in addition to England? Even better if ME/CFS was the cause of death written on the death certificate.

Or if you have any brilliant ideas for where else I could look, I'd appreciate it. I've already searched HealthRising.
 
I think this is a difficult question, maybe worth some discussion. I am not sure we are in position to say someone has died from ME/CFS. Without knowing what process that would involve it is hard to have evidence.

I have bio doubt that people with ME die as a result of being unable to tolerate eating and drinking enough. There may be several similar situations but I think they would all be seen as involving ME as an indirect or secondary causal factor. That may be very unsatisfactory and does not diminish the loss of life being related to ME. But there may also be downsides to giving the impression that ME can cause death directly.
 
I'm really not the person to be discussing the science side of ME but haven't studies shown that we have abnormal amount of cytokines especially at the severer levels of ME? What life threatening damage can they cause at the extreme? Causing secondary life threatening situations as a result of the ME.
 
We don’t know with much specificity individual health details are not usually publicly available and there is no broad collection of numbers of premature deaths for people with ME.

A political decision not to record information on living or dying patients with ME diagnosis.

Yet I and I think many of us have gained the strong suspicion that a large body of anecdotal evidence and personal testimony points to a higher than average risk for premature deaths.

If this disease puts you at risk of secondary complications, I would think that would be or should be counted as an ME related fatality?

Most commonly contributing causes are named by loved ones as.

-Infection. Sepsis.
-Heart failure
-Cancers,Lymphatic.
-Lack of hydration & nutrition
Kidney & intestine dysfunction.

If these are one day accurately recorded these could turnout to be more common complications than average population or than found in certain other chronic health conditions or as high a risk as for other health conditions already known to increase risk.

Even if higher risk levels are proven to be the case we probably won’t know immediately whether all these increased risks -and many more that I haven’t happened upon- are due to effects of politics or biology or both.

My guess is both.

Using information on other illnesses now better understood and allocated resources for better care, previously mistreated or under treated illnesses and disease, it would be safe to conclude that prolonged sickness with no treatment and indeed plenty of mistreatment will put us in increased danger of premature death.

Impoverished living conditions common to the majority of disabled people place one at higher risk of mortality. There is plenty of data for this.

As of the above two points it is clear we as a patient population are not valued. As with many many other life circumstances and diseases that are considered evidence of moral failure or general inferiority. We are marked for exclusion from resources.
This is explicit. We are told this once a diagnosis of ME or CFS hits the medical notes.

Whatever the symptoms, there is reason to choose to ignore, to refuse to look further.

“This is your Chronic Fatigue”
“No medical problem”
“We never find any evidence of pathology in people with your condition”
“Sometimes ‘we’ over focus on normal body sensations”


If we still request further investigations for worrying symptoms?

“CSS”
“MUS”
“FND”
“BPD”
“Health Anxiety”
“Conversion Disorder”
“Mass Hysteria”
“Generalised Anxiety Disorder”
“Major Depression”
“Pervasive Refusal”
“Under eating”
“Over eating”
“Bulimia”
“Anorexia”
“Too young”
“Too old”
“Too ‘over/underweight’”
“Trying to force it”
“Got to push yourself”
“Partner is enabling sick behaviour”
“Sick due to abandonment by partner”
“Manipulative in relationships”
“Unassertive fails to get emotional needs met”


“Experienced Racism? Still don't think your problem is psychological?
I am sorry I can’t help you”

“Had/have a violent partner, that’s your problem right there. It’s not a medical one I am afraid”.

“A victim of child abuse psychological/physical/sexual. This patient has gained immunity to all future biological illness.

However the immunity sadly doesn’t extend to ‘mental illness’ or ‘behavioural conditions’. It is my medical opinion that this patient probably has them all.

Oh no wait? Is the patient female? In that case, I would say that they definitely do.

This being so from hence forth do not underestimate the untrustworthiness of this patients statements regarding their own bodies. Do not treat them. It only encourages them.”

So, if you do have trauma or good relationships or bad ones etc your right to healthcare is terminated regardless. No justification but reference to the diagnosis allocated to you is needed. Attitudes negative towards your diagnosis and therefore your personhood from medical professionals are considered evidenced sufficiently by virtue of their commonness among such well educated folk as medics.

This total refusal of all care to so many with an ME diagnosis and other similarly psychologised and morally condemned patient groups has to increase risk of deadly delay for diagnosis of dangerous health conditions whether closely biologically related to ME or not.
 
Last edited:
WinterSparrow said:
For a book that I am writing, I am looking for published articles or research about non-suicide deaths from ME/CFS. I’ve written about Sophia Mirza, and have sources for that, but somewhere I read that there have been others in the US and Australia, but I've been unable to locate those sources. Can anyone help with information about deaths from ME/CFS in the US, Australia, or anywhere in the world in addition to England? Even better if ME/CFS was the cause of death written on the death certificate.

Or if you have any brilliant ideas for where else I could look, I'd appreciate it. I've already searched HealthRising.
Click to expand...
@Valerie Eliot Smith might have some useful info (suggest you contact via pm).
 
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