A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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Post-Ebola fatigue syndrome?

Discussion in 'General ME/CFS Discussion' started by Kati, Sep 2, 2014.

  1. Kati

    Kati Patient in training

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    As the Ebola epidemic continues, I wonder if the survivors, many of whom are health care workers will be predisposed to post viral syndrome, like the H1N1 flu virus, Ross-river virus and giardia epidemic (to name a few) generated new members of the ME family.

    It would be interesting to find out because scientists would pay attention to this, as Ebola is high on the governments' priority list.
     
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  2. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    post-SARS syndrome is said in the journals to be nearly identical to CFS. (using that term because that's what was used in the article(s) I read)
     
    Last edited: Sep 3, 2014
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  3. drob31

    drob31 Senior Member

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    It would be ironic if there was no post ebola fatigue syndrome.

    Yep, I got Ebola! Doing great now!
     
  4. Kati

    Kati Patient in training

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    My hope is that the authorities 'should' be prepared that this is an eventuality, that a fraction of these lucky ones who survive may not recover.

    And then perhaps it will entice them in researching post viral syndrome a bit more.

    As an aside some patients who survive sepsis are subject to a myriad of symptomatology fairly similar but not necessarily like ME. I have a twitter friend who is trying to raise awareness for survivors of sepsis.
     
    Last edited: Sep 2, 2014
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  5. alex3619

    alex3619 Senior Member

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    They ignored Ebola itself for a very long time. If they ignore Ebola, its entirely possible they will ignore any long term post infection issues. The capacity of authorities to ignore the obvious is legendary.

    It is a good question though, and one we should keep an eye on.

    The risk that Ebola may go from epidemic to pandemic is now here. Some are very concerned.
     
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  6. Kati

    Kati Patient in training

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    Actually it is almost an opportunity for Lipkin, Hornig, Peterson, and company to get funding for ME: comparing post-Ebola fatigue patients with ME patients.
     
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  7. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    I read that what actually kills a person with ebola is the effects of a cytokine storm.
     
  8. adreno

    adreno PR activist

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    This is what Dr. Cathcart suggests:

    https://www.patrickholford.com/blog/can-vitamin-c-kill-ebola-virus

    He recommends IV vitamin C for ebola:

    http://vitamincfoundation.org/www.orthomed.com/ebola.htm
     
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  9. Martial

    Martial Senior Member

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    I wonder if I should bump up my vitamin C dose too... Though I have heard negative outcomes for a lot with bacterial infections like I am dealing with. A severe worsening of neurological symptoms for one. Wonder why this is and how it can be contridicted in certain cases. Here is an article on it. Note, I did try esther C and Liposomal vitamin C, as well as absorbic. I did not notice any changes in illness severity or symptoms from any of it though.

    http://www.lymeneteurope.org/info/vitamin-c-a-lyme-patient-s-friend-or-foe

    also something else of possible interest.

    http://www.independent.co.uk/news/too-much-vitamin-c-is-bad-for-you-say-experts-1155256.html
     
  10. Kati

    Kati Patient in training

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    Actually what kills in Ebola is DIC: Dsseminated Intravascular Coagulation.

    http://en.m.wikipedia.org/wiki/Disseminated_intravascular_coagulation

    The blood vessels become leaky- the coagulation factors are hard at work trying to patch holes in the blood vessels and litterally run out of certain factors and the patient bleed to death because the body can no longer coagulate.

    These patients usually need all kinds of supportive care, IV, electrolytes, blood and platelets, to name a few. These basic supportive treatments are difficult to get in Africa, on top of maintaining a more than strict isolation to prevent transmission of virus.
     
    Last edited: Sep 3, 2014
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  11. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    It is the cytokine storm that causes the leaky blood vessels.
    I read about it on this NPR blog.

    You might find the NIH more authoritative.
     
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  12. Kati

    Kati Patient in training

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    @Little Bluestem i have no interest in arguing. In a hospital setting, drs and RNs would not know wabout cytokine storms. But they sure can performs blood tests, and find out the patient is bleeding from all orifices.

    So we can agree to disagree, or agree that we are not talking about the same thing, e.g.scientific explanation vs medical implications.

    Moreover, supportive care is what saves patients. correcting blood values, hydration, admin of blood products. My point of view is medical. I was a bone marrow transplant nurse before getting ill, so I have a very good idea about what kills.

    And as an aside, a drip of vitamin C for ebola would be the same thing as applying a band aid to a patient with a ruptured aorta
     
  13. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    Actually, we are talking about the same thing. The leaky blood vessels are a downstream effect of the cytokine storm.
    From the NPR Blog
     
  14. taniaaust1

    taniaaust1 Senior Member

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    It worsens by the day. Its now up to 200 people dying in a 24 hr period (from a the WHO statement of deaths from the period of 5 Sept to6 Sept) and 2- 4 times as many people getting it daily then are dying. 200 a day dying therefore 1,400 dying per week.

    It got 40% worst in past 3 weeks!. One can image the disaster if that keeps up.

    So Currently 1,400 dying per week dying....There is no way they can control this (they cant provide the medical personal and cant provide that many people to do the tracing), we need to hope it doesnt get out of Africa.

    Unfortunately some countries like my own, arent even checking the ones who come from the highly infected countries temperatures at the airport. (thou that probably wont do much anyway when it has an incubation period of up to 21 days).

    I posted on another thread, an computer analyses of planes still going out from places and the current Ebola situation, put the risk of UK getting its first case at 25% by the end of the month. America was at a bit less (I cant remember now, I think it was about 18- 19% risk by end of month)

    I was reading that in Liberia, all there taxis are now contaminated due to the sick being driven around trying to find a hospital which will take them (as none are as they are full). These taxis arent cleaned so now are spreading ebola hot spots. When someone goes to the airport, how do they usually get there? yeah they catch a taxi! From taxi, to plane, to your country.
    ...............

    I was talking to someone who is in the protective gear industry helping sales places etc with thier protective gear supplies etc (he's some kind of rep) and he was telling me since the swine flu thing, as many business selling masks etc stocked up when that scare happened, they ended up being left with huge unused supplies they couldnt sell as there is only a 3 year expiratory date on much of this stuff. So since then businesses have cut back on how much they keep in supply to sell, and only now tend to have a couple of months supplies in store which if people start to panic will be sold almost right away.

    He showin me exactly what kind of equipment one would need for Ebola (specialised masks). Even my charcol filtering mask, one for my MCS, he said wouldnt be suitable as this virus is so small it would go throu.
    ....................

    ah well, as I said to someone, Ive read that Ebola destroys your B Cells (I think it destoys all kinds of cells but I read it really targets the B cells). Maybe it could be a ME cure if you survive it.
     
    Last edited: Sep 10, 2014
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  15. adreno

    adreno PR activist

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    There is a very high chance of survival with the right treatment. The problem is when health care services are overloaded. Of course, health care is scarce in those African countries, but even here in the western world we couldn't handle all those patients. So if it becomes a pandemic I would expect a lot of people to die. Those with weak immune systems will be among the first to go.
     
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  16. taniaaust1

    taniaaust1 Senior Member

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    adreno. Im sure it would definately kill me as I have already severely low blood volume and start going into like shock easily.
    ........................

    Governments are now starting to panic now about the possibility of big outbreaks outside of Africa and have now starting buying up large supplies of personal protective equipment. The one in that industry was telling me yesterday that the Australia Health Dept has started putting out their feelers to find out how much is in stock around the place from various sources, so it looks like they are about to buy up big.

    America has just ordered 160,000 hazmat suits for Ebola.
    http://investmentwatchblog.com/breaking-us-state-dept-orders-160000-hazmat-suits-for-ebola/

    The WHO has now changed its stance on things and now is saying it could be a worldwide threat within weeks, it says it is "surging beyond control". http://www.cbc.ca/news/health/ebola-surging-beyond-control-who-s-margaret-chan-warns-1.2764285
    They've also found that this virus is constantly mutating and there are fears it could go airbourne. It has a kill rate of up to 90% without any medical treatment.

    If anyone is looking for anti-viral masks to use for possible Ebola, these ones kill viruses on contact, they say they are natural and can machine washed up to 20 times (there's 10 in a pack)... this is an Aussie site but they apparently get their supplies from America and China if you want to search for that brand http://www.exitkitsaustralia.com.au/Virogard-anti-viral-face-mask .
     
    Last edited: Sep 14, 2014
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  17. Kati

    Kati Patient in training

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    Yep. Thought so. It was just a matter of time.:confused:
    (Credit to Tate Mitchell on Co-Cure)


    https://gma.yahoo.com/post-ebola-sy...ctor-says-181100681--abc-news-topstories.html

    'Post-Ebola Syndrome' Persists After Virus Is Cured, Doctor Says
    By LIZ NEPORENT

    West Africans fortunate to survive Ebola may go on to develop what's
    being called "post-Ebola syndrome," characterized by vision loss and
    long-term poor health, a doctor told a World health Organization.

    “We are seeing a lot of people with vision problems,” Dr. Margaret
    Nanyonga, a psycho-social support officer for WHO, said at a
    conference in Sierra Leone last week. “Some complain of clouded
    vision, but for others the visual loss is progressive. I have seen two
    people who are now blind.”

    Approximately 50 percent of Ebola survivors she has treated in Kenema,
    Sierra Leone’s third-largest city, report declining health after
    fighting off the deadly virus, Nanyonga said. Besides deteriorating
    vision, they are complaining of body aches, chest pain, headaches and
    fatigue. This is consistent with symptoms experienced by survivors in
    previous outbreaks, she said.

    Dr. William Schaffner, an infectious disease expert who is a professor
    at the Vanderbilt University School of Medicine in Nashville,
    Tennessee, said he was not aware of a post-Ebola syndrome but was not
    surprised that health of West African Ebola survivors deteriorates
    after recovery.

    “You can imagine when people recover from Ebola there will be a period
    of time when they are fatigued, particularly if they have led a rough
    existence of poverty and poor nutrition,” he said.

    Though he was not aware of any survivors having vision problems, he
    speculated that the virus could attack the blood vessels that line the
    interior walls of the eyes. Without thorough eye exams -- which he
    doubted are happening in places like Sierra Leone -- he said he was
    hesitant to pin the reason for loss of vision on Ebola.

    There are very few scientific reports looking at the ongoing health
    problems of those who are cured of Ebola. In one small study, a
    majority of 29 people who survived a 1995 outbreak in the Democratic
    Republic of Congo reported a significant amount of joint pain, muscle
    aches and fatigue. They were still experiencing deteriorating health
    up to a year and a half after recovery, the researchers found.

    Support for survivors is gradually emerging, including a post-Ebola
    clinic in Kenema to deal with survivors’ psychological and social
    needs, according to WHO. Nanyonga said she had developed an assessment
    tool to track common and disabling symptoms.

    “We need to understand why these symptoms persist, whether they are
    caused by the disease or treatment, or perhaps the heavy
    disinfection,” she said.
     
    Last edited: Nov 4, 2014
  18. alex3619

    alex3619 Senior Member

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    I read about post-Ebola syndrome a few hours ago.

    [Satire] What, post viral effects? How can that be? No way that occurs with other viruses! [End Satire]
     
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  19. taniaaust1

    taniaaust1 Senior Member

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    I thought there would be something like this.. thanks for posting the article. Hopefully if more whites get it. it will be studied (I bet they ignore it in all the blacks).
     

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