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Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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Cause of Death among Patients with Chronic Fatigue Syndrome

Discussion in 'Latest ME/CFS Research' started by oerganix, Jan 11, 2010.

  1. redrachel76

    redrachel76 Senior Member

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    I once posted a thread on this:
    http://forums.phoenixrising.me/inde...syndrome-and-subsequent-risk-of-cancer.28316/

    The paper in the thread says that CFS patients get Lymphoma type cancers and Non Hodgkins Lymphoma more often, if I understand correct.

    FWIW I have had CFS 22 year. I never got cancer or heart problems. It takes more time I guess.
  2. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Have you ever monitored your heart? I had not idea I had heart problems until I was using a blood pressure meter to monitor thyroid treatment.
    xchocoholic likes this.
  3. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Pancreatic failure is also high in CFS patients according to a study by Dr. Byron Hyde.

    Dr. Sarah Myhill has written that the presence of viruses, parasites, and bacteria in the small bowel of almost all CFS patients can get bad enough to stop the pancreas from producing enzymes.
    xchocoholic likes this.
  4. redrachel76

    redrachel76 Senior Member

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    I regularly measure my blood pressure and it is always low. I took it to 2 doctors. The 1st dismissed it. The 2nd told me that I should get tested for POTS...although the only treatment for that he would give was exercise and midodrine, and that put me off.

    Other than blood pressure and pulse, I have never done more in depth heart monitoring.
    Little Bluestem, merylg and Valentijn like this.
  5. xchocoholic

    xchocoholic Senior Member

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    Like elastase ? Check. Mine's low. Dr prescribed creon but it makes me feel weird. Ok. Weirder. Lol. I take Enzymedica enzymes most of the time instead.

    I'll be 59 in August and after 24 years of ME I have a long list of diagnosises so I'm getting a wee bit concerned here. Between heart, brain (seizures and weird movement disorder) and digestion problems there's no telling what's going to do me in. I hope it's quick. Maybe a sky diving accident ? Lol.

    Tc .. x
    redrachel76, merylg and rosie26 like this.
  6. xchocoholic

    xchocoholic Senior Member

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    You could do a diy pmttt.

    I would never have known I had OI if my dr hadn't done pmttts regularly. I've always been positive for OH. Doing my own pmttt showed pots.

    Other treatments for OI include salt loading, florinef and compression garments. Salt loading has made minimal impact on me. After trying to choke down more than whatever the rda is, I forgot, for about a month or 2, I gave up on it. It seemed like it just came out of my pores. Others have seen some relief from what I've read.

    Btw, 24 years here and only had 1 bout of melanoma in 1998 and recovered 100%. Kow.

    I'm curious about what heart symptoms people see prior to heart failure, strokes, etc. You hear about people having heart attacks, etc that seem to come out of nowhere. We seem to have heart symptoms daily that google says we should be concerned about.
    WTF?

    Does anyone have further info ?

    Fwiw, I'm just curious about this. I don't think I'm in immediate danger. I expect to be around for several more years. I'd be talking to my doctor if I had serious concerns.

    Fwiw, I've had silly doctors who thought my questions concerning my health indicated that I was OVERLY concerned. And thought that simply saying they didn't know why "x" was happening was enough. Evidently their mind reading capabilities were on the fritz. (Insert Banging head against wall icon)

    Tx .. x
    redrachel76, merylg and Gingergrrl43 like this.
  7. Gingergrrl43

    Gingergrrl43 Senior Member

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    @xchocoholic You know, I have done the salt tablets, magnesium, potassium, electrolyte tablets (Nuun), compression stockings, etc, and really am not sure if it has made one shred of difference for me. The only think that I know for sure lowers my tachycardia is the beta blocker.

    When I was at the ER earlier this week (long story in another post :eek:) they did a blood test for heart failure I believe called "BNP" and my number was 26 and under 100 means no heart failure (I may not be getting this exactly right but my number was good.) For a brief moment, I felt relief but then I thought, why am I having severe tachycardia, IST, POTS, OI and shortness of breath on the slightest exertion if my heart is good?

    The only conclusions I can some up with is that it is all dysautonomia and not heart issues per se, or one of the viruses is in my heart doing damage but not enough to see it yet, or my mitochondria have just shut down (like what Sarah Myhill writes about) but still not enough to see heart damage yet.

    I am getting an echocardiogram on Weds and very curious what it will show?
    redrachel76, merylg and xchocoholic like this.
  8. xchocoholic

    xchocoholic Senior Member

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    Tx. I googled heart bnp level. Www dot lef dot org has a great definition. Sorry I can't give link. Several reasons for BNP.

    I'll have to go read your ER thread.

    Hope your test comes out ok. G nite. X
  9. manna

    manna Senior Member

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    theres this list of people who have died of complications to CFIDS/M.E. http://www.ncf-net.org/memorial.htm

    inlcuding famous motorcyclist::

    Barry Sheene, 52, died of complications of CFIDS/ME in October of 2002 at his Gold Coast home in Australia. He had been diagnosed with cancer of the upper stomach and esophagus months earlier. Barry was a two time world motorcycle champion and suffered from CFIDS/ME for more than a decade. On one television program on "CFS" in 1998, Barry mentioned that his long history of accidents, including having both legs smashed, were "a piece of cake" compared to having CFIDS/ME.

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