Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
Discuss the article on the Forums.

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

Discussion in 'Other Health News and Research' started by ScottTriGuy, Mar 28, 2016.

  1. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

    Messages:
    1,062
    Likes:
    4,250
    Toronto, Canada
  2. *GG*

    *GG* Senior Member

    Messages:
    6,074
    Likes:
    4,658
    Concord, NH
    Someone post the YouTube when available :)

    GG
     
    Snow Leopard and Esther12 like this.
  3. waiting

    waiting Senior Member

    Messages:
    449
    Likes:
    865
    @ScottTriGuy, were you able to access this? I'm just getting a blank screen... thx.
     
  4. shannah

    shannah Senior Member

    Messages:
    1,337
    Likes:
    1,548
    @waiting All I'm getting is a blank screen as well.
     
  5. waiting

    waiting Senior Member

    Messages:
    449
    Likes:
    865
    Thanks @shannah -- so it's not just me, then!
     
  6. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

    Messages:
    1,062
    Likes:
    4,250
    Toronto, Canada
  7. waiting

    waiting Senior Member

    Messages:
    449
    Likes:
    865
    Strange -- it's just starting for me now...
     
  8. Scarecrow

    Scarecrow Annie Gsampel

    Messages:
    1,850
    Likes:
    5,029
    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%
     
  9. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

    Messages:
    1,062
    Likes:
    4,250
    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 likes this.
  10. Scarecrow

    Scarecrow Annie Gsampel

    Messages:
    1,850
    Likes:
    5,029
    Scotland
    There are several other studies were symptoms are grouped but I'm not going to be able to copy them at the moment.
     
  11. shannah

    shannah Senior Member

    Messages:
    1,337
    Likes:
    1,548
  12. waiting

    waiting Senior Member

    Messages:
    449
    Likes:
    865
    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)?
     
    Last edited: Mar 29, 2016
    Kati, Scarecrow, Valentijn and 2 others like this.
  13. waiting

    waiting Senior Member

    Messages:
    449
    Likes:
    865
    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.

    upload_2016-3-29_13-19-30.png
     
    Esther12 likes this.
  14. shannah

    shannah Senior Member

    Messages:
    1,337
    Likes:
    1,548
    Ocular Issues itemized

    [​IMG]
     
    Justin30, Esther12 and Valentijn like this.
  15. Justin30

    Justin30 Senior Member

    Messages:
    1,065
    Likes:
    1,272
    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* likes this.
  16. *GG*

    *GG* Senior Member

    Messages:
    6,074
    Likes:
    4,658
    Concord, NH
    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 likes this.
  17. Justin30

    Justin30 Senior Member

    Messages:
    1,065
    Likes:
    1,272
    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.
     
  18. Little Bluestem

    Little Bluestem Senescent on the Illinois Prairie ❀❤✿Ƹ̵̡Ӝ̵̨̄Ʒ✿❤❀

    Messages:
    4,586
    Likes:
    5,121
    Midwest, USA
    Sometimes confused people do not realize that they are confused.
     
    Kati likes this.
  19. Scarecrow

    Scarecrow Annie Gsampel

    Messages:
    1,850
    Likes:
    5,029
    Scotland
    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.
     

See more popular forum discussions.

Share This Page