Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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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 ❀❤✿Ƹ̵̡Ӝ̵̨̄Ʒ✿❤❀

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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.
     
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  3. Little Bluestem

    Little Bluestem Senescent on the Illinois Prairie ❀❤✿Ƹ̵̡Ӝ̵̨̄Ʒ✿❤❀

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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.
     
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  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.
     
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  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
     
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  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
     
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  7. Gingergrrl

    Gingergrrl Community Support Volunteer

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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?
     
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  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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  10. 5150

    5150 Senior Member

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    Our kidneys take a beating, That always enters decision-making for me.
    Of course, the 3things mentioned are what They Are: the top 3. Daff, we have had a lot of work-ups , procedures, that usually involves some insidious chemical , somewhere in the process. This disease has changed my life in the worst way. I hope to have a loved one who will inform this community when the time comes.
     
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  11. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    I had cervical cancer 5 years ago, aged 31 which was 11 years into the ME.
    It wasn't the usual slow growing that cervical cancer often is, it was a rare fast growing type. 5 experts had to get together to discuss it as it was so unusual o_O The doctor who was treating me and operated on me said he hadn't seen it in 20 years
     
    taniaaust1 likes this.
  12. redviper

    redviper Senior Member

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    Well this has been a very depressing and eye-opening thread to read.
     
  13. Nancih

    Nancih

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    I'm really hoping someone here can help me with this. I suffered with undiagnosed ME/CFS for two and a half years before finding a doctor who looked at my years of tests, took a 45-minute history and pretty much knew immediately what the problem was. To his credit, he did do a couple of things to verify, in particular regulating my sleep (terrible insomnia) to make sure he was on the mark. My question is this - what experiences have people had with skin cancers. I have a number of very odd looking skin lesions. The last time I had anything biopsied it cost me $500 and I absolutely can't afford that now. I've scoured the web looking at all kinds of pictures (uh, yuk) but nothing exactly looks like what I have going on. Anyo
     
  14. mtnbibliophile

    mtnbibliophile

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    Thank you, Nancih, I just noticed a weird lesion on my skin a few days ago and the thought of skin cancer never occurred to me (in part bec. it's on my lower abdomen and hasn't been exposed to sunlight in 20 years). Your post just convinced me to take it seriously enough to go see a doctor about it. (I'm not going to look at pictures on the web - as you said, yuk.)
     
  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I just had one removed with Mohs surgery.
    Insurance? My biopsy and surgery was paid for by insurance. Thing is, if it is skin cancer, it has to be taken care of and at this point you just don't know. Maybe go to a good dermatologist and get an opinion?
    Good move!

    Sushi
     
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  16. PNR2008

    PNR2008 Senior Member

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    I had a pre-cancerous lesion on my scalp. Right where I parted my hair. Two odd lesions on my face were taken off about 5 years ago. I used to sail.

    My last colonastomy 2-3 years ago, 3 polyps were removed also pre-cancerous. I'm getting another in a few weeks, besides saving my life, their drugs take away ME/CFS pain for at least 2 hours, which is another reason to go.
     
  17. Nancih

    Nancih

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    Thanks for your reply. I hope everything turns out okay for you. Would you keep me posted? One of the first thing I noticed was an old lesion on my abdomen that started changing.

    I'm really hesitant to go to a dermatologist. The energy it takes to do that is something I just don't have right now. Last time I camped in the waiting room for over an hour.

    If I did have skin cancer, I don't think I'd do anything about it. I watched what treating metastatic squamous cell carcinoma did to my dad and I would not choose that. Plus I've had no income for two years and things like co-pays are a big deal for me. I'm getting to the point where I have only minimal control of the pain. So I think if I had a malignancy, I'd rather cash in the air miles I still have, load up on meds and head to Paris one last time. That's just me and my personal choice. I don't have children, I've lived a great life and I have no fear of finding out what's on the other side.
     
  18. *GG*

    *GG* $10 gift code at iHerb GAS343 of $40

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    What is a colonastomy? Heard of colonoscopy, had that done years ago. Good times. LOL

    GG
     
  19. PNR2008

    PNR2008 Senior Member

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    @ggingues I knew that looked funny, but well sometimes I just don't care. You knew what I meant. lol
     
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  20. *GG*

    *GG* $10 gift code at iHerb GAS343 of $40

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    Thought you might have erred, or perhaps it was something else I had not heard of! It happens to the "best" of us. LOL

    GG

    PS Not trying to pick on you :)
     
    PNR2008 likes this.

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