• 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 (FM), 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 neurological symptom- sounds like PVFS/ME/CFS

Yogi

Senior Member
Messages
1,132
Ebola survivors suffer long-term brain health problems, new study reveals
Most had some form of 'neurologic abnormality' at least six months after they became infected

http://www.independent.co.uk/life-s...alth-problems-new-study-reveals-a6894696.html

Ebola may leave lasting neurological problems
http://medicalxpress.com/news/2016-02-ebola-neurological-problems.html

The American Acadamy of Neurology are presenting on it:
https://www.aan.com/PressRoom/Home/PressRelease/1436


“While an end to the outbreak has been declared, these survivors are still struggling with long-term problems,” said study author Lauren Bowen, MD, of the (NIH) National Institute of Neurological Disorders and Stroke (NINDS) in Bethesda, Md., and a member of the American Academy of Neurology.

This sounds suspiciously like PVFS/ME/CFS. Why is this automatically treated as neurological and not psychiatric??

If they had studied ME properly there may be good understanding of the post viral brain disorder and treatments.
 

shannah

Senior Member
Messages
1,429
Odd that fatigue is not listed as a symptom in the results of this study, although perhaps it is in the actual study itself, which doesn't appear to be published. Fatigue shows up when you google "Post Ebola symptoms".

"The study is to be presented Wednesday at the American Academy of Neurology's annual meeting in Vancouver, Canada. Findings presented at meetings are generally viewed as preliminary until published in a peer-reviewed journal."
 

5150

Senior Member
Messages
360
Post Ebola viral fatigue--> problem is, there is no postEbola. It is still affecting those who had severe symptoms, so the truth is , it isn't gone (for them). If there are brain infections afterwards, it is part of the whole infection.Our pathological genesis is "unknown" because every time somebody gets close to going after it, the US Govt steps in with a monkey wrench. Why? ask Elaine DeFreitas for starters. This entire CFS/ME saga stinks of cover up.

I have very little hope that a bunch of well intentioned laypersons, struggling for funds, will ever stop a government whose obvious intent is .not .being .stopped. It will take more resources than we have, but not too big of a hurdle for those with money, who choose to spend it in their self defense. Their power is at stake. Our lives are worth very little.
 

Gemini

Senior Member
Messages
1,176
Location
East Coast USA
Last edited:

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
As many different viral illnesses esp when they are severe (Ross River virus, EBV are just two examples) 10% of those end up with having the result of the person getting ME/CFS, it would be no surprise at all if ebola cases end up with ME/CFS.

there was a news article only days ago on the UK nurse who got ebola a while back.. she's back in hospital for a third time due to complications of it all. Unfortunately article I read didn't state what the complication was. If she has symptoms which now fit severe ME/CFS, would they give her that diagnoses. I think due to all the politics around our illness probably not, they will probably go and make something new up.
 

Gemini

Senior Member
Messages
1,176
Location
East Coast USA
As many different viral illnesses esp when they are severe (Ross River virus, EBV are just two examples) 10% of those end up with having the result of the person getting ME/CFS, it would be no surprise at all if ebola cases end up with ME/CFS.

Zika virus may be added to the list....20% of cases are severe according to the CDC....
 

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland

Of the 82 survivors in the study, 'most' were affected by symptoms at six months. This is far in excess of the proportion of people still experiencing symptoms at six months following any of the infections known to be able to trigger ME/CFS. It will be interesting to see what happens to the Ebola survivors at further follow ups. Notice that there was no mention of flu-like symptoms or malaise (other than weakness and headaches). I wonder if that is because they are absent or not reported.

Pure speculation, but at this point I'm leaning toward something being out of whack with the microbiome before you get some kind of infection and the resulting immune reaction. In developed countries, I could imagine that imbalance being due to the consumption of lots of refined sugar. That might disproportionately feed certain constituents of the microbiome, like candida or other fungi. The body may be able to deal with that kind of "overgrowth" until a large immune system event like an infection occurs, and then something goes off the rails. Just my "gut instinct" - - for the moment at least. :)

If ME is more rare in the third world (and I'm not sure it is), consuming less refined sugar might have something to do with it.

Maybe.
My gut tells me something similar, that there is some kind of predisposition, perhaps the microbiome, perhaps something else
 
Last edited:

maryb

iherb code TAK122
Messages
3,602
Location
UK
@taniaaust1
funny how we don't get to hear exactly what the symptoms the Ebola nurse in the UK is suffering from, just that she's been admitted to an isolation unit after being airlifted to the hospital.
No further information at all, and the majority of the UK public don't question it. We get told just what they want us to know and no more. I really don't believe in conspiracy theories but sometimes......
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I really don't believe in conspiracy theories but sometimes......

@maryb, I do get where you are coming from. Some things happen that are so unbelievable that we cannot see a reasonable alternative argument.

Conspiracies exist. They are just hard to prove. However many conspiracy theories are just wrong. Many are due to people believing in them having insufficient knowledge of what is going on. Many are also due to human incompetence and ineptitude. Widespread, institutionalized, systemic ineptitude, incompetence and corruption is the bane of the human species.

The conspiracy part often is not about some event, something that happened. Its about what comes next to defend the status quo, to cover up the bungle. Its about spin to sell a line they want their key community to believe. Politicians do it so often it almost defines their profession. Now in an election period, both in the US and Australia, the spin machines are running hot.

In our case I think we are better off trying to prove what we can prove, and disprove what can be shown to be wrong, rather than worrying about conspiracies. If, however, a whistle-blower comes forward, or a document that proves (and not just suggests) something surfaces, then we can act.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
@taniaaust1
funny how we don't get to hear exactly what the symptoms the Ebola nurse in the UK is suffering from, just that she's been admitted to an isolation unit after being airlifted to the hospital.
No further information at all, and the majority of the UK public don't question it. We get told just what they want us to know and no more. I really don't believe in conspiracy theories but sometimes......

I believe in conspiracy theories after getting ME/CFS :p . In my mind there is no doubt there is a coverup of people at high levels (probably insurance company involvement).

but yeah its funny how people do not question things, they'd rather turn a blind eye and have things go on as always.
...........

In reality it would be breach of that nurses privacy if they start telling the world why she's back in. She could sue hospital. pity though, it don't help us.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Of the 82 survivors in the study, 'most' were affected by symptoms at six months. This is far in excess of the proportion of people still experiencing symptoms at six months following any of the infections known to be able to trigger ME/CFS. It will be interesting to see what happens to the Ebola survivors at further follow ups. Notice that there was no mention of flu-like symptoms or malaise (other than weakness and headaches). I wonder if that is because they are absent or not reported.

If one reads descriptions of past ME outbreaks, one thing one finds is the illness got described differently outbreak to outbreak depending on who was studying it and hence which symptoms they choose to pay more attention too.. as as we all know, this illness has so many different symptoms which can appear in it.

Hence just cause there may be no mention of flu-like symptoms, it may not mean much. I wouldn't expect something as boring as malaise sounds, would be mentioned as it appears in most illnesss. They are most likely to report on the most startling symptoms she has and not mention the others if they do report what is going on.
 

msf

Senior Member
Messages
3,650
Here´s the big question - is this post-infectious or the symptoms of a chronic infection, since Ebola has been shown to persist in the body?

Ebola followed by severe ME would seem to be one of worst illnesses imaginable.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Ebola research has funding. Unlike ME. So we might see answers, such as the use of post Ebola antibodies which is currently being trialed. The world tends to fund research on diseases that openly scare people. CFS and ME scare the insurance industry and governments, and possibly some doctors, though scare is probably not the right word for organizations - but its a quiet and academic kind of scared.

Here is one thing that I think will change that forever ... make it mandatory that "mental" diseases be paid for by insurance the same as physical diseases. There is likely to be a revolutionary improvement in how patients are treated and how research is funded.
 

5150

Senior Member
Messages
360
Somebody is scared! Otherwise there wouldn't be sealed files in the UK & USA for the next 50 years. That smells like secrecy... no, it is secrecy , and WHY? / I know it feels all wrong to lock away information.
 

Ecoclimber

Senior Member
Messages
1,011
Why Ebola survivors struggle with new symptoms

Although the pathophysilogy and epidemiology are the not same with ME/CFS, it is interesting concerning the possible cause of post-Ebola syndrome and its similarities to ME/CFS. It may give some cluse on post viral infections.

Take aways:
Investigation conducted by Avindra Nath at the NIH
1. Studies have shown that up to a quarter of patients with the dengue fever virus and close to 40 percent of Epstein–Barr virus patients suffer fatigue after the acute illness. Inflammatory cytokines may be to blame. They can act on receptors in the brain causing post-infection fatigue and loss of appetite.

2. Nath wonders if the neurologic symptoms in Ebola survivors are a direct result of the virus or, instead, triggered by the immune system’s response to the infection. HIV, for instance, infects immune cells called macrophages in the brain, prompting the release of cytokines, small proteins that are toxic to nerve cells. Studies in monkeys have shown Ebola also infects macrophages. Ebola also can trigger a massive “cytokine storm”—cytokines are chemical messengers between cells, highly active during an immune attack—causing veins to leak and burst. That can cause hemorrhaging throughout the body, including the brain, which could explain the memory problems, headaches and movement disorders Nath has seen in Ebola survivors during his visits to Liberia.

3. The eyeball is not the only hiding place for Ebola. The testes, central nervous system and joint cartilage can act as sanctuary sites for a number of pathogens including HIV. These vital structures are at risk of collateral damage when the immune system wages war on foreign invaders. So to protect themselves from the inflammatory response, they have adapted clever mechanisms including immune-suppressing molecules and physical barriers. These protective measures make them great hiding spots for viruses.
 

roller

wiggle jiggle
Messages
775
in addition, an infection (or perhaps its treatment) may trigger other latent pathogens to spread.
e.g. the measles vaccine can activate tuberculosis.
 

rosie26

Senior Member
Messages
2,446
Location
NZ
Ebola followed by severe ME would seem to be one of worst illnesses imaginable.
It amazes me that people even survive Ebola. When I first heard about it 20 years ago it seemed like everyone died from it.