ScottTriGuy
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Webinar Tues Mar 29: includes "Understanding post-Ebola syndrome"
- Thread starter ScottTriGuy
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*GG*
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Someone post the YouTube when available 
GG
GG
@ScottTriGuy, were you able to access this? I'm just getting a blank screen... thx.
Thanks @shannah -- so it's not just me, then!
ScottTriGuy
Stop the harm. Start the research and treatment.
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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%
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.
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"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. "
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. "
There are several other studies were symptoms are grouped but I'm not going to be able to copy them at the moment.
shannah
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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)?
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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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.
shannah
Senior Member
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Ocular Issues itemized
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.
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*
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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
Little Bluestem
All Good Things Must Come to an End
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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.