Sunday, 26 June 2016

ME Mortality

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.

**********

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


6 comments:

  1. thanks for this 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?

    Here the link to the fb page https://www.facebook.com/groups/MEMemorial/

    The CFIDS/ME Patient Memorial List is alphabetic http://www.ncf-net.org/memorial.htm

    and Jodi Basset also recorded some deaths on the Hummingbird site. I'm not sure what will happen to her page now that she has joined the ranks of the ME patients too-early dead. http://www.hfme.org/mememoriallist.htm

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    1. Thank you for those links Leela and for the information about Sarah and Pam - I have added a PS to the article.

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  2. I actually think that the crux of the problem is that official organizations either don't know or won't admit that ME causes or substantially increases fatalities.

    Our own IACFSME/ME insisted as little as 2 years ago that it wasn't. I think they've since removed the statement but can't be sure. More info in Jennie Spotila's 2014 blog post. Http://www.occupycfs.com/2014/07/07/mecfs-mortality/

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    1. *IACFS/ME stated that it doesn't cause fatalities.

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    2. Yes Emily I agree, there is a decided lack of will to investigate whether ME shortens lives.

      I agree too that ME is rarely is written as a cause of death, but even collecting information about anyone who has an ME diagnosis who subsequently dies would be useful information.

      Ideally the list should be an official one, with a requirement for the reporting of all ME patient deaths. :(

      Thanks for adding Jennie's link. I've added it in a PS above.

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    3. Absolutely agree! Any information would be helpful. So little is known about us. Thank you for writing this. It's such a difficult topic to navigate.

      Oh, I saw this cross my Twitter tonight. https://mobile.twitter.com/janemeeps/status/747522648138199041 Though it looks like she passed months back and it was only just announced to the community.

      So sad

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