• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Post-Ebola fatigue syndrome?

Kati

Patient in training
Messages
5,497
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.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
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:

drob31

Senior Member
Messages
1,487
It would be ironic if there was no post ebola fatigue syndrome.

Yep, I got Ebola! Doing great now!
 

Kati

Patient in training
Messages
5,497
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:

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
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.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
I read that what actually kills a person with ebola is the effects of a cytokine storm.
 

adreno

PR activist
Messages
4,841
I read that what actually kills a person with ebola is the effects of a cytokine storm.
This is what Dr. Cathcart suggests:

Dr Robert Cathcart, who has more experience treating deadly infections with high dose vitamin C than any other doctor, says “the Ebola virus kills by way of free radicals which can be neutralized by massive doses of sodium ascorbate intravenously. Note on another hemorrhagic fever (acute induced scurvy): Nurse Pineo, the first white that survived the Lassa fever (another hemorrhagic fever) outbreak in Lassa, was, on her own, taking vitamins (Fuller, JG. Fever. Reader's Digest Press. 1974.) It does not take a genius to figure out that with the increased bowel tolerance to oral ascorbic acid somewhat proportional to the toxicity of the disease that the most serious infectious diseases would rapidly exhaust all the bodies vitamin C, acute induced scurvy, and cause bleeding all over the body and finally free radical deaths.

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
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA



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
 

Kati

Patient in training
Messages
5,497
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:

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
It is the cytokine storm that causes the leaky blood vessels.
I read about it on this NPR blog.

The most extreme immune attack is the "cytokine storm." Although many viruses, like bird flu and SARS, can trigger this shock and awe assault, Ebola is probably the best at it. And at the end of an Ebola infection, it's the cytokine storm that kills you, Basler says.
You might find the NIH more authoritative.
This work, the largest study to be conducted to date in humans, showed that fatal outcome is associated with aberrant innate immune responses and with global suppression of adaptive immunity. The innate immune reaction was characterized by a “cytokine storm,” with hypersecretion of numerous proinflammatory cytokines, chemokines and growth factors, and by the noteworthy absence of antiviral IFNα2.
 

Kati

Patient in training
Messages
5,497
@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
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
@Little Bluestem So we can agree to disagree, or agree that we are not talking about the same thing, e.g.scientific explanation vs medical implications.
Actually, we are talking about the same thing. The leaky blood vessels are a downstream effect of the cytokine storm.
"The cytokine storm makes the blood vessel walls more permeable," Basler says. So the arteries, veins and capillaries start to leak blood and plasma.

The storm also triggers a big release of nitric oxide, which thins out the blood and damages vessels further.
From the NPR Blog
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
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.

It takes about 200-250 medical personnel to safely manage 70 Ebola patients, WHO officials have said.

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:

adreno

PR activist
Messages
4,841
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.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
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
A modelling study published in Eurosurveillance projects that, if the growth in cases continues at its current pace, under a worst-case scenario there could be another 77,000 to 277,000 cases by the end of the year.

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:

Kati

Patient in training
Messages
5,497
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:

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
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).
 
Back