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
