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Webinar Tues Mar 29: includes "Understanding post-Ebola syndrome"

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
12734166_10153428841056669_2659279846339819204_n.png
 

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
There's a slide showing the self-reported symptoms of 91 survivors ordered high to low by the proportion of survivors reporting a symptom (percentages estimated by me):

Joint pain (81%)
Headache (69%)
Muscle pain (55%)
Sleeplessness (43%)
Visual problems (42%)
Depression (37%)
Abdominal pain (35%)
Peeling of skin (33%)
Chest pain (32%)
Excessive fatigue (30%)
Pruritis (28%)
Testicular pain (27%)
Anxiety (21%)
Yellowing of eyes (13%)
Palpitations (9%)
Hiccups (6%)
Erectile dysfunction (3%)
Amenorrhea (2%)
Confusion (2%)
Deafness (1%)
Numbness (1%)


I'm surprised to see confusion only reported by 2%
 

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
"Recrudescence Disease" - that was one of my new learnings - https://en.wikipedia.org/wiki/Recrudescence

From wiki:
"In medicine, it is the recurrence of symptoms in a patient whose blood stream infection has previously been at such a low level as not to be clinically demonstrable or cause symptoms, or the reappearance of a disease after it has been quiescent. "
 

waiting

Senior Member
Messages
463
In the Q&A, the presenter, Adrienne K. Chan (usually works with HIV) said the post-viral persistence seems to be both viral AND immunological -- AND that they *don't understand it*, but using the best-known example of mono leading to post-EBV Syndrome.

And during her presentation, she said the viral load was related to uveitis, but not auditory problems or arthralgias -- the former (viral load) as having a viral cytopathic effect; and the latter (arthralgias, etc.) as being immunological effects.

Does anyone understand this? Is she distinguishing between the immediate problems that a virus can cause (viral) & the follow-on symptoms caused by a dysfunctioning immune system (immunological)?
 
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waiting

Senior Member
Messages
463
fwiw, at the bottom right, the "Ebola survivor with waned immunity" says "virus load at exposure affects risk of reinfection" -- it reminded me of the Dubbo study which found that a % (I think 6? from Dr. David Bell's recent OMF presentation) remained ill long-term -- and that the risk of this long-term illness was correlated with the initial severity of the acute infection.

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Justin30

Senior Member
Messages
1,065
two things.....

First Post Ebola Syndrome = ME in my opinion the symptoms are similar and people have not had it for long and therefore may or may not experience a change in symptomology

Second Bell in his presentation said it depends how bad you are at onset. Well.....I would contest this as would others I have spoken with.....I dont believe it and maybe that is what he experienced at the outbreak he was present at.

I know of people that are fine for years than just drop....

People such as the Australian Rugby player auper sick at onset to fully recover.

You here of many very sick at onset to improve.

I know Dr Bell is an expert but overall saying that how bad you are at onset depends on how sick you are altogether....I don't think they (any Dr) knows this to be true or not true as everyone is so different.

He said if you have more neuro-cog symptoms you were worse off at the end. My Drs have said those patients are the sickest they loose focus 30 seconds into a conversation.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
two things.....

I know Dr Bell is an expert but overall saying that how bad you are at onset depends on how sick you are altogether....I don't think they (any Dr) knows this to be true or not true as everyone is so different.

He said if you have more neuro-cog symptoms you were worse off at the end. My Drs have said those patients are the sickest they loose focus 30 seconds into a conversation.

I would think that Dr Bell is about as expert as you can be with this illness, but he is human, probably has his own biases and has perhaps only seen a subset of patients due to the location(NY) of him practicing in the past?

GG
 

Justin30

Senior Member
Messages
1,065
I truly feel he is an expert...dont get me wrong
....i think so many subsets exist with this illness and also peoples genetics play a role.
 

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
Sometimes confused people do not realize that they are confused.
That's a very good point.

If a person is as confused as that, it should be obvious to others. But if symptoms are self reported, as in this Sierra Leone study, they're not going to be recorded.

Confusion is also an extreme point in the brain fog spectrum, perhaps too extreme to elicit reports of cognitive impairment.