I have written before about the "living death" of very severe ME, and of patients clinging to life, desperately hoping for medical progress to rescue them. Sadly, some patients don't survive long enough.
In the last weeks I have heard of the untimely deaths of five ME patients:
Jodi Bassett,
Louise Ramage,
Pat Blankenship,
Tink Bastion and
Linda Hayes Burke.
I knew none of these ladies in real life, but their deaths nonetheless feel like a punch in the gut.
Theirs are not the only ME deaths I've encountered either. The online ME community often morns losses from its ranks, but these five deaths, occurring in such quick succession, highlight a sensitive issue - ME mortality.
So why, knowing ME deaths occur, is ME research is still so agonizingly slow?
Why is it still hampered by such a significant lack of government funding world over?
Certainly, noises are being made by government bodies about future funding, but patients sense a complete lack of urgency, when it comes to seeking answers through biomedical research.
It seems the pounds and dollars are slow to appear for the types of studies we need.
Another question: Why do we still have publications in respectable journals that describe ME as a condition where mind-over-matter types of therapies are effective?
Do deaths not indicate something more serious?
There is a saying that events can become "just another statistic", but what if those statistics are never collected?
Are the deaths of ME patients recorded? If not, why not?
The frustration that shows in my writing today is, I know, felt by many.
I hope awareness of the urgent needs of Severe ME patients will one day be exposed. I hope the outrage our community feels at the untimely deaths of patients like Jodi, Louise, Pat, Tink and Linda, will grow to become a public outrage.
I hope many more who are not affected by ME will start to ask questions about our situation.
In the mean time, those of us remaining, and still able to campaign, must do all we can to bring ME to the attention of medical professionals and key health decision makers - where ever we are - world over.
I'm doing what I can.
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Post Script: Brought to my attention in comments:
And a post by Jennifer Spotila on Mortality
http://www.occupycfs.com/2014/07/07/mecfs-mortality/
And from Leela - two more patients:
"Sally. I reviewed the ME/CFS Memorial Page and found that 2 other ME patients, that I didn't know, Sarah Ellis and Pam Carmichel, died in May along with Pat. So that is 7 that we know of in the last 2 months. And how many are unrecorded? " - Seven patients in such a short time, it is almost too much to take in. :(
Via a Twitter comment:
Causes of Death Among Patients With Chronic Fatigue Syndrome (2006)
LEONARD A. JASON, KARINA CORRADI, SARA GRESS, SARAH WILLIAMS, and SUSAN TORRES-HARDING. DePaul University, Chicago, Illinois, USA
And finally a link to my post "Living Death Disease": http://sallyjustme.blogspot.co.uk/2014/08/living-death.html
And from Leela - two more patients:
"Sally. I reviewed the ME/CFS Memorial Page and found that 2 other ME patients, that I didn't know, Sarah Ellis and Pam Carmichel, died in May along with Pat. So that is 7 that we know of in the last 2 months. And how many are unrecorded? " - Seven patients in such a short time, it is almost too much to take in. :(
Via a Twitter comment:
Causes of Death Among Patients With Chronic Fatigue Syndrome (2006)
LEONARD A. JASON, KARINA CORRADI, SARA GRESS, SARAH WILLIAMS, and SUSAN TORRES-HARDING. DePaul University, Chicago, Illinois, USA
And finally a link to my post "Living Death Disease": http://sallyjustme.blogspot.co.uk/2014/08/living-death.html
