Deaths

[usedtobeperkytina]

For MCWPA, we are working on PSAs. To help with this, does anyone know of those who have died from ME or CFS. I know the investigation into Sophia Mirza's death declared her death was renal failure from CFS. News media at the time said it was the first time. However, I remember many patients complained and the news media did a correction.

I am needing to get more besides just one case. Does anyone know someone who died from this disease where it says so on autopsy?

And, I have spoken with Pat Fero about this. Her son died of a viral infection to the heart. (Doesn't say CFS or ME).

Anyone help?

Tina

 

[ukxmrv]

Hi Tina,

I presume that you have been through the NCF Memorial list for names and causes? In the UK Annabel Senior is a well remembered sad death. Most people that I know who have died did not get "ME" on their death cert.

http://www.ncf-net.org/memorial.htm

(start)

Annabel Senior, aged 60, died on January 8th after 45 years of CFIDS/ME. Toward the end, she was unable to eat anything due to multiple abreactions. She lasted for nearly 53 days without food, and only gave up water toward the end, because she was too weak to swallow. Annabel was 15 when she became sick and died at age 60. The coroner's report said, ""Death due to Chronic Fatigue Syndrome...1a. Left ventricular failure, 1b. Occlusive coronary artery atheroma." She leaves her constant caregiver and husband, Richard. Annabel lived in Conway Valley, North Wales in the United Kingdom.

(end)

This is an example of what can happen when PWCFS die suddenly. She did not get ME or CFS on her cert but "sudden adult death syndrome"

http://www.stalbansreview.co.uk/new...n_died_of_sudden_adult_death_syndrome/?ref=mr


A HARPENDEN woman with a history of blackouts collapsed and died as she was getting into bed, an inquest heard today.

On the evening of April 8 this year Vanessa Bellamy told her husband she was going to sleep early because she was feeling tired.

Just before midnight he went up to their bedroom to find she had collapsed by the bedside.

When paramedic arrived to their Manland Avenue home the 39-year-old was cold to touch and was not moving.

She was taken to the QEII Hospital where she was pronounced dead after attempts were made to resuscitate her.

Giving evidence at the inquest today consultant pathologist Dr Swamy Rajiv who carried out the post mortem following Mrs Bellamy's death said although she had a history of seizures and blackouts, which first began in 2007, there was no significant link to say it had caused her death.

He had found she was on anti-depressants but again there was nothing linking the medication to the reason why she died.

Dr Rajiv also said from all the tests carried out there were no abnormal results and reached a conclusion of natural death.

The coroner Edward Thomas recorded the cause of death as sudden adult death syndrome.

 

[ixchelkali]

I wonder if this would help, although it's not specific individuals?

Jason LA, Porter N, Hunnell J, Brown A, Rademaker A, Richman JA.

DePaul University.

Abstract
Objective: There is a need for natural history chronic fatigue syndrome (CFS) studies from random, community-based, multi-ethnic populations. Design: The present study examined the course of CFS from Wave 1 to Wave 2, which spanned over a ten year period of time, and, assessed whether socio-environmental and symptomatology factors were associated with CFS status over the ten year period. Results: There was relative stability over time on critical measures of disability, fatigue, support, optimism and coping over time. One cardinal symptoms of CFS, post-exertional malaise, best differentiated the CFS group from the others. By Wave 2, of the original group of 32 individuals diagnosed with CFS, 4 had died, and 24 were found and agreed to be re-evaluated, and of this group, 16 continued to have CFS, 5 developed exclusionary illnesses, 2 were classified as Idiopathic chronic fatigue, and one had remitted. Conclusions: The current study found that over time in a community-based sample, unbiased by help seeking behavior the CFS group remained rather ill with a variety of different conditions over time. (PsycINFO Database Record (c) 2011 APA, all rights reserved).

PMID: 21401284 [PubMed - in process]

And of course, once they developed exclusionary illnesses, such as lymphoma, they are no longer considered to have ME/CFS, even if the ME/CFS preceeded it by many years. It's one of the insidious aspects of the case definition, the way it assures that death from ME/CFS will not be labeled as such.

Lenny Jason also published this study on the same topic:

J Health Psychol. 2011 Jan 11. [Epub ahead of print]

CFS prevalence and risk factors over time.
Jason LA, Porter N, Hunnell J, Rademaker A, Richman JA.

DePaul University, USA.

Abstract
The present natural history study examined the course of CFS from 1995-97 (Wave 1) to approximately 10 years later (Wave 2) from a random, community-based, multi-ethnic population. The rate of CFS remained approximately the same over the period of time from Wave 1 to Wave 2, although a high level of mortality was found (18% of those with medical or psychiatric exclusions group, 12.5% for the CFS group). Physical measures of disability and fatigue, along with measures of specific somatic symptoms, better differentiate individuals who later are diagnosed with CFS than more psychosocial measures such as stress and coping.

PMID: 21224330 [PubMed - as supplied by publisher]

 

[usedtobeperkytina]

thank you so much.

 

[justinreilly]

And of course, once they developed exclusionary illnesses, such as lymphoma, they are no longer considered to have ME/CFS, even if the ME/CFS preceeded it by many years. It's one of the insidious aspects of the case definition, the way it assures that death from ME/CFS will not be labeled as such.

Really! I didn't know that (though i did know ME rarely appears on the death certs). do you remember where you read/heard this?

 

[ixchelkali]

Really! I didn't know that (though i did know ME rarely appears on the death certs). do you remember where you read/heard this?

I've come across it many times, but remembering isn't something I do well these days. One I remember was in response to Dr Peterson's statement before the CFSAC in Oct 09, when he talked about how some of the XMRV positive patients had developed lymphoma. One of the British gents pointed out that if they had lymphoma they couldn't be CFS patients, because it was an exclusionary illness. I'm sorry I can't cite a specific example right now; too much brain fog. But it's written into the CDC case definition that if the fatigue can be explained by other medical conditions, you don't have CFS.

 

[WillowJ]

as Alex, I think it is, points out regularly, the exclusions are supposed to be exclusionary only if the other condition completely explains all symptoms and only if, when fully treated, symptoms no longer persist (this doesn't work for cancer, obviously, but would work for thyroid disease), but exclusions are not used properly, instead they are used like a set of checkboxes as if any one checkmark means you do not have CFS.

 

[mezombie]

Check out the list here: http://www.hfme.org/mememoriallist.htm

 

[usedtobeperkytina]

Thank you everyone for your input. We are now prepared for the statements in the PSAs. The MCWPA, as you know, is running a contest for videos for the PSAs. At this point, we have four, possibly five entries. Also, based on this research, and conversations with researchers and a physician, another patient organization etc.

Based on this research, the MCWPA website has been updated with some information: http://mcwpa.org/what-is-mecfs/top-ten-myths/

Tina

 

[ixchelkali]

It may be too late to help you, Tina, but I just thought of Alison Hunter.

http://www.ahmf.org/smh040502.html

 

[usedtobeperkytina]

yes

Yes, I found out about her before.

I have spoken to three researchers. We're going with it.

Tina

 

[Tulip]

This list gives a good over view of "some" people that have died from me/cfs and had it list on their death certificate...

http://hoopermedical.intodit.com/page/me-cfs-causes-death

 

[taniaaust1]

Issue is so many are undiagnosed.. I knew this guy who lived in same town as me with CFS who died, I think he was around his late 40s. He'd been diagnosed with Fibromyaliga (the doctors in my town dont seem to diagnose anyone with CFS.. if you have CFS you remain undiagnosed here) but was just sleeping all day every day and was too exhausted to cook much of the time etc.

He went into hospital with another illness and they were expecting to release him in a few days.. but he just got worst and worst and about 10 days later he surprised them some (they'd been trying to say he was almost well enough to go home) by dying on them.

His hospital care due to him having CFS was terrible as our local hospital had no understanding of how exhausted he was. He was friends with my father and complained to my father that he was not getting his meals at the hospital as they didnt bother to wake him up for them, he'd wake up and they'd served him and removed it and threw it all away while he still slept. (maybe they just thought he was being lazy). I do think missing a lot of your meals (or most of them) when you then cant get up and cook yourself something (like one may be able to do at times at home) due to CFS.. while sick.. certainly didnt aid in his recovery.

(I think my dad ended up taking him in a couple of meals just so he'd have something to eat. Dad said thou he was asleep usually when he attempted to visit.. so possibly what my father took in.. got thrown out too).

 

[Snow Leopard]

The above doesn't sound like a typical CFS case, but it does go to show how damaging the prejudices and ignorance of medical practitioners can really be.

 

[Tulip]

Doesn't sound like me/cfs...death takes quite a while and always involves infection..

This guy sounds like he had an undiagnosed heart condition and it killed him! Stupid hospital.

 

[Leslie]

Hi Tina,

I presume that you have been through the NCF Memorial list for names and causes? In the UK Annabel Senior is a well remembered sad death. Most people that I know who have died did not get "ME" on their death cert.

http://www.ncf-net.org/memorial.htm

(start)

Annabel Senior, aged 60, died on January 8th after 45 years of CFIDS/ME. Toward the end, she was unable to eat anything due to multiple abreactions. She lasted for nearly 53 days without food, and only gave up water toward the end, because she was too weak to swallow. Annabel was 15 when she became sick and died at age 60. The coroner's report said, ""Death due to Chronic Fatigue Syndrome...1a. Left ventricular failure, 1b. Occlusive coronary artery atheroma." She leaves her constant caregiver and husband, Richard. Annabel lived in Conway Valley, North Wales in the United Kingdom.

(end)

This is an example of what can happen when PWCFS die suddenly. She did not get ME or CFS on her cert but "sudden adult death syndrome"

http://www.stalbansreview.co.uk/new...n_died_of_sudden_adult_death_syndrome/?ref=mr


A HARPENDEN woman with a history of blackouts collapsed and died as she was getting into bed, an inquest heard today.

On the evening of April 8 this year Vanessa Bellamy told her husband she was going to sleep early because she was feeling tired.

Just before midnight he went up to their bedroom to find she had collapsed by the bedside.

When paramedic arrived to their Manland Avenue home the 39-year-old was cold to touch and was not moving.

She was taken to the QEII Hospital where she was pronounced dead after attempts were made to resuscitate her.

Giving evidence at the inquest today consultant pathologist Dr Swamy Rajiv who carried out the post mortem following Mrs Bellamy's death said although she had a history of seizures and blackouts, which first began in 2007, there was no significant link to say it had caused her death.

He had found she was on anti-depressants but again there was nothing linking the medication to the reason why she died.

Dr Rajiv also said from all the tests carried out there were no abnormal results and reached a conclusion of natural death.

The coroner Edward Thomas recorded the cause of death as sudden adult death syndrome.

"Sudden Adult Death Syndrome?" I have never heard of that!! My "ex" daughter in Law died suddenly March 3, 2011 and no known cause on the autopsy report. She had told me she had Fibro/CFS, she had suffered from seizures and migrains as well. I believe she was also on anti-depressants or had been in the past. She died in her sleep, was found by a friend early in the morning. My goodness, what is going on with this disease????

 

[taniaaust1]

Doesn't sound like me/cfs...death takes quite a while and always involves infection..

This guy sounds like he had an undiagnosed heart condition and it killed him! Stupid hospital.

It wasnt sudden.. he was sick for a very long time (and on a disability pension for an extremely long time due to his physical health).. over 15 years and slowly just getting worst and worst. The hospital just couldnt understand why he was was saying he was so sick and ill and I think thought he was making it up hence keep sending him home (he was in and out of hospital several times the past couple of mths of his life).. on the last occassion I if Im remembering correctly, they tried to send him home but he refused to leave so they decided to keep him in for a short time more (little country hospital). (He had some liver issues but they hadnt been expecting that to kill him). He lived with many years of disbelief that he was very sick. He couldnt get any home help here (I cant either when very ill due to it being CFS) so lived in a place which was soo discusting as he didnt clean and was too sick to look after himself properly.

His death certificate would read liver failure as right at the very end they suddenly said he was going to die and it was his liver. I went from hearing that they were going to kick him out of hospital and he was having to argue with them about that as he felt too weak etc to leave to that he died.