Life Expectancy and CFS/ME

[justinreilly]

And getting to the "heart" of things... can the bereaved families of ME/CFS patients sue caregivers if they refused to provide cardiac care, while the patient was dying from virally-induced heart failure? Might risk of lawsuits be the nudge the health care system needs to start taking premature ME/CFS deaths seriously?

What you can do - "just in case"
Suffice it to say that I've given my spouse specific instructions to insist on a full autopsy, with info on competent labs to send PCR samples to, IF things go south. And I've also given my blessing that my family should go for the jugular legally, if this happens.

A post-mortem tissue bank for the ME/CFS community?
Even better however, might be if a leading institution were to begin a post-mortem tissue bank, and provide some kind of vehicle so patients can register in advance. Then, if they die prematurely, everything is set up to appropriately collect tissues for competent cause-of-death analysis.

Great ideas!

 

[justinreilly]

I feel that way, too. But it has occurred to me that old age itself doesn't hold the fear for me that it does for a lot of people: I've had lots of practice. The things that most people are afraid of, the loss of mental acuity, loss of memory, aches and pains, loss of independence, loss of vitality? Well, I've been there, done that. So I don't have to be afraid of it. I've already developed coping mechanisms. In a way, I just got a head start on old age.

Me too! ....

 

[justinreilly]

I am fifty six and have been ill since I was fourteen, wheelchair user since I was thirty seven.

Since getting diabetes, I am constantly monitored for complications. ME/CFS should be monitored in the same way. Strangely the diabetes may be a good thing for me as I am getting the medical attention I need.

ME/CFS has heart problems and all the other things as a direct part of the illness but we also have the other general risk factors associated with an inactive life and the weight gain many of us have had.

We also avoid some causes of death like industrial chemicals and dangerous sports. (Like those celebrities who die in their private planes, we don't have to worry about that!)

Worrying is useless (if inevitable). We have a serious illness, why would we expect to have a very long life. We do what we can to maximise our health anyway so that is in our favour.

I don't believe it is in anyone's interests to minimise the risks we have just to feel better. ME/CFS is trivialised enough we should not add to that. The sooner it is taken seriously and our health is monitored as it should be the better.

I have had a lot of good things in my life. I do not want to go yet as there are still things I want to do, but I consider myself lucky to have had what I have. Many of my friends with MS are gone.

Mithriel

Mithriel, just another great post by you- precious wisdom!

 

[justinreilly]

I wish we could set up our own study group.. of say 200-500 people with ME and have each of those include someone they know well around the same age and sex and is healthy for a control ... and monitor each year any deaths of these people to compare.

Of cause to do that one would have to include everyones personal contact details to check in once every 12 mths to find out if person was still alive or not. If anyone wanted to start out such a thing.. I dont mind being included for the sake of science.

If it was kept very public the results (but not individual contacts except to possible main group).. could this info be so it couldnt be denied? Could something like that end up being able to be published in a medical journal after say 10 years?? (or kept going longer if there hadnt been many deaths).

The way things are there is a good chance no good studies will be well known or even about on that in the next ten years unless people started one and made it well known it a study was being done. Could we all be doing something like that ourselves rather then waiting on good funding which never comes?

This sounds like a great idea. Wouldn't yield info for a long time, but very cost-effective and something we could start now. I would be a 'subject' but I don't know much about science, so I couldn't evaluate the idea rigorously and get it started. What do the science-literate people think about this idea? Any of you willing to coordinate such a study? Maybe Prof. Jason would be interested.

 

[ukxmrv]

I don't worry about death and don't find it a hard topic to talk about.

I'm more worried about spending the rest of my life with this disease and then at the end, having any shortening being dismissed or trivialised.

Luckily, I am in contact with other ME patients and my husband has instructions from me on what to do if I die suddenly.

I've lost so many ME friends and all died before statistically they should have. I owe it to their memory to make sure that their deaths are not forgotten and that the fact that they suffered from ME and died before their time ignored.

The UK ME charities are in the process of evaluating/setting up a tissue bank. There are also other projects ongoing. What use they will be to use is another matter if not handled correctly.

 

[Tulip]

I have almost been hit by a car 3 times in the last few months, all 3 cars stopped right in front of me because I just did not see them, even though I looked several times. I now avoid crossing busy roads

I am worried about death, but that is because I have a young child to raise on my own and I need to stick around long enough to see him grow up and leave the nest. I think I will go back to sticking my head in the clouds and pretending everything is peachy keen though, as it has been playing on my mind waay too much lately, especially the heart stuff involved in ME and it doesn't help at all. I function much better in "peachy keen mode".

 

[ukxmrv]

Fair enough Tulip,

Sending a hug to you in peachy keen mode.

We all need to find a way to live with this disease. What works for one may not necessarily work for another.

Good idea to bring up the accidents and busy roads!

 

[Tulip]

Ukxmrv thanks :Retro smile:

It is good though that we can all talk about death on here if and when needed without being censored

 

[MEG]

Dying from CFS???? I think so

Hi
I just found this thread, and I wish I had found it sooner. I AM afraid of dying soon. My sister died at 49 from CFS, but her death certificate says, cardiomathy, multisystem failure. (Not CFS, so it will not be counted) I am 58, on oxygen, have heart, lung, kidney failure. My mother on the other hand, whom we are sure had CFS, lived to be 73. But she wasn't as ill as my sister and I until 2-3 years prior to her death.

In the beginning (2001) of my life with CFS, I thought it didn't effect mortality. Now we know differently. And it isn't easy...I am in bed, in pain, nauseous, no appetite anymore,(45 pound weight loss) a perpetual headache, and on oxygen to breathe, and I am most afraid of dying of congestive heart failure...suffocating. I feel like it must feel to have HIV-AIDS.

Sorry to be so depressing, but I am having a terrible night tonite. Usually I can put on a good face, but not tonite.

I am alone and scared....

 

[Merry]

MEG -

I'm very sorry to hear that you are suffering from so many serious health problems.

Thinking of you,
Merry

 

[ukxmrv]

Sorry to Meg, to hear of the terrible pain you are in. Not surprised that you are scared. Anyone would be in the circumstances.

You are not alone. There is a CFS and ME community. We will listen to you.

I know that it is not the same as someone to hold your hand and say that it is all OK. But we are here and you are important. Keep talking and keep posting please.

 

[maryb]

MEG there are so many kind generous people on here to support you, most of us have been where you are and we truly understand how you feel, some days it just feels too heavy, but I'm hoping today is a better day for you, stay strong and like ukxmrv says keep talking and posting.

 

[maddietod]

MEG. was anybody on chat last night? I'm sorry that you're struggling with so much, and if you feel alone it's that much harder. I get on chat almost evey day, and often we're just silly and joking. But whenever anybody needs to really talk, we're there for each other. I'm never on in the middle of the night, though....

Hugs to you,

Madie

 

[Sing]

Dear MEG,

I am so sorry that you are suffering every day like this! I didn't know it has been this hard, this bad, for you, and that your relatives also were sick with ME/CFS and went downhill the way you described. I think it is right for us to hear, because I believe the majority on this forum are younger than me or you, and may not have or want to have a sense of how ME/CFS relates to mortality.

Our culture denies death, though we are obsessed with it too in our appetite for violence as entertainment and as a way to render "justice". People are living longer and longer, now, it seems, 85 and up, but now half of those are disintegrating with Alzheimer's. By comparison, at the beginning of the 20th century, most women at least, did not live even to the age of menopause. The long lives of today's standards may just be a temporary fluke in history.

However long you or I or anyone here lives, I hope we can help each other improve our lives' quality, by sharing, helping and caring.

Keep on sharing!

Sing

 

[justy]

Hi Meg, thinking of you this morning from my side of the world. I am so sorry for your pain and the losses in your family. Sending hugs ((( )))

Justy xx

 

[taniaaust1]

Hi MEG ***sending hugs***

 

[mtnbibliophile]

A belated reply to some of the earlier posters who did not see the point of this thread:

It is not just reduced NK cell activity that leads to earlier deaths among people with CFS/ME. That wouldn't account for the fact that those of us who die from heart disease do so an average of about 20 years earlier than the general population. Two other risk factors that I am aware of:
Orthostatic hypotension, which many of us have, has been shown to lead to an increased rate of mortality:
Orthostatic Hypotension Predicts All-cause Mortality and Coronary Events in Middle-aged Individuals (The Malm Preventive Project)
Artur Fedorowski; Lars Stavenow; Bo Hedblad; Gran Berglund; Peter M. Nilsson; Olle Melander. Posted: 03/19/2010; European Heart Journal. 2010;31(1):12-14. 2010 Oxford University Press (sorry, couldn't find the url).
Our risk of suicide is clearly higher than that of the general population.

Why does it matter whether we will die younger than others? Well, as I told people after I was diagnosed with terminal leukemia, I no longer have to worry about not having enough money to live on in my old age: I won't have one.

More seriously, if we can show that people with CFS/ME have a statistically significant risk of dying younger, it might finally get the medical profession and the public and the funding agencies to start taking our disease more seriously.

The CDC estimates that 14,300+ people with a diagnosis of AIDS died in the US during 2011 - not necessarily from AIDS, but from any cause at all. That's out of an estimated 1.2 million people who are HIV+. HIV/AIDS gets over 3 BILLION dollars a year in research funding from NIH; we get $5 million. Dr. Nancy Klimas, who has treated both HIV+ and CFS/ME patients, has said she'd rather get a diagnosis of HIV than CFS/ME because if you stick to your treatment regimen, HIV can be treated. We can't. Again, that's $3 BILLION in research funds for HIV/AIDS to a paltry $5 million for us, and we're just as sick -in fact sicker than most people who are just HIV+. I'd like to see some of that research money redirected to us, and establishing that we are in fact at greater risk of early death might help.

 

[Sing]

You bet!

Hypotension part:

I'm at the upper end of my 60's with bad hypotension and living alone. Walking is sometimes not possible. Other times it is such a strain I feel my heart and chest are under severe pressure. Then there is usually a time I can take a walk of a quarter or half a mile, which I do. The heart attack feeling is there already, and I expect it is bad for my brain to have so little oxygen then. My vision is dimming, coordination going and I can't think--while undergoing such a struggle to be on my feet. I try to avoid this, naturally, but sometimes I just have to stay up regardless.

Low immune system:

With IgG at 500 something out of 700 and IgM and IgA, one borderline and the other subnormal, being prone to infections, it will be no surprise when my ship goes down sooner than expected. This is excepting those who get malignant cancers, as some of my friends have and you do too, then the end comes up even sooner. I am sorry!

With ME alone, I don't expect a life span of normal length, and with this quality of life, would not frankly even want it to be. I expect I will go of a cardiac event or an infection. Or else I will fall or have an accident. The tendency to go into shock is much raised and there is far less resilience, when one is struggling so.

Like you, I hope that mortality and morbidity in ME/SEID is studied and documented, and that the results will bring on more funding and action.

 

[Luxintenebrislucet]

My understanding was that Dr. Byron Hyde's study did involve thousands of his patients over his entire career, but he only followed them for 25 yrs. before publishing his results, so you can't state an average age for death, since some were still alive after 25 yrs., although it was under 10%. I don't know that much about the other study mentioned here. I think he found an average age at death of 47, but as I said, how can you know, when almost 10% are still alive. They could live to be 90!

I do remember the list of cancers we are at especially high risk for, even though I saw this list over a decade ago,so it may no longer be accurate. It differs for Fibro and CFS only in the first one on the list.
1. Thyroid (only if you have fibro too)
2. non-Hodgkins Lymphoma
3. Myoglioblastoma (this is the rare brain tumor talked about in one post above)
4. Burkett's Lymphoma
5. Salivary gland cancer (I had one member with this in the support group I ran).

I started developing pancreatic failure over a decade ago, and was diagnosed with severe exocrine pancreatic failure in 2007. I started developing heart failure in 2008 and now am swollen and painful below the knees by noon every day. My swollen feet hurt so much I waddle, unless I wear compression stockings all the time. It was easy in winter, but darn hot now. I am allergic to diuretics. The drug for pancreatic failure costs $900 per month, and if the company rep had not decided to give me all his free samples every month, I would not be well enough to be on this computer anymore. I take COQ10 for heart failure, the better absorbed ubiquinol form, but can't afford the recommended dose.

It is not as scary as I once feared. The symptoms of these two conditions, when under some control, are much less of a problem than the symptoms of the CFS that got me to this point. I think Sing is right that morbidity is more troubling than mortality, at least to me. I am 59, but turn those numbers around and you have a more accurate idea of how I feel, more like 95. Who wants to live forever feeling like that? Quality is more important than quantity to me.

I've been sick for 24 1/2 yrs. and am more than ready to go home to God. I am just hoping for a massive stroke, and with my labile blood pressure, I have a good chance. I don't want to be bedridden, because I am too much of a coward to do that, and it would bankrupt my husband.

I think those of you who have something or someone to live for will live longer. Just my opinion. I have good cyber-friends with this who say they hang on for their kids and grandkids. I don't have that reason. We have no kids and I have no family except my husband, who cannot ever retire because of me. I am hoping he finds a woman after I'm gone whose husband died and left her a bundle so he can take it easy. He deserves it.

I also think there is a good chance of better treatment on the horizon now, so there is much reason for hope, esp. for the younger ones.

There is a huge range of illness levels with this as well. I know someone with CFS who can only handle 2 days of work per week, but runs for exercise! I can't work at all, but I can do an hour of mild exercise, 3 X weekly.

Then there are genes. My mother did not have CFS, but died at age 60, and she lived longer than all of her 3 siblings, so I don't come from a long lived family, but many of you probably do. We are all different, and are not statistics, but people.

klutzo

are you still alive ? i guess not i hope you are resting in peace now