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Surviving Ebola: A historical cohort study of Ebola mortality and survival in Sierra Leone 2014-2015 - Wing et al Dec 2018

Discussion in 'Health News and Research unrelated to ME/CFS' started by Sly Saint, Dec 28, 2018.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Looks into post-viral symptoms; mentions CFS

    https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0209655

     
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  2. obeat

    obeat Senior Member (Voting Rights)

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    http://www.jimmunol.org/content/198/5/1782
    This paper was referenced in the above. It explains the different immune response in females and males to viral infections and to vaccination. Females have stronger immune responses. Very detailed.
     
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  3. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    An interesting article.

    However I have no specific recollection of having had hiccups during my acute glandular fever stage leading to my ME.
     
  4. Hutan

    Hutan Moderator Staff Member

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    Great to see studies being done of Ebola survivors. There should be more.

    This study didn't ask patients at survivor clinics about fatigue, muscle fatiguability, dizziness or PEM and only started asking about headaches part of the way through when it became clear that many people had headaches. Given the understanding that the post-Ebola syndrome could be ME/CFS, it would be good to see studies screening for more typical ME/CFS symptoms.

    Perhaps the larger ME/CFS organisations could push for a more coordinated approach to post-Ebola studies? Maybe this is something that IAFME could do when chatting with the WHO in Geneva? @Action for M.E. Or a role for the UK CMRC? @Chris Ponting
     
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  5. Starlight

    Starlight Established Member (Voting Rights)

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    I hope they don't start to manage them as they manage ME patients. That wouldn't bring them any joy or improvement.
     
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  6. Daisybell

    Daisybell Moderator Staff Member

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    But maybe, just maybe, it might change how ME is perceived.....?
     
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  7. Esther12

    Esther12 Senior Member (Voting Rights)

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    I had been wondering if researchers looking at the ebola aftermath might turn up things that might relate to to ME/CFS.

    I didn't see a reference to CBT/GET. Maybe there's a growing awareness of the problems with these approaches?
     
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  8. Hutan

    Hutan Moderator Staff Member

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    Well, there was this:

    Not sure which approaches they are thinking of, the ones that come immediately to mind are 1. suggesting that they are hysterical/stressed/need to think more positively about life and hoping they go away; 2. CBT; 3. GET.

    Interesting about the suggestion of anti-rheumatic drugs as a suggestion for treatment of post-Ebola syndrome. I haven't heard anything about that before.
     
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  9. Esther12

    Esther12 Senior Member (Voting Rights)

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    The references for that were [7,4446], which didn't look to be promoting CBT/GET... I'm not sure about the coenzyme Q10 stuff either though:

    7) Scott JT, Semple MG. Ebola virus disease sequelae: a challenge that is not going away [Internet]. The Lancet Infectious Diseases. 2017. pp. 470–471. pmid:28094207

    44. Maes M, Mihaylova I, Kubera M, Uytterhoeven M, Vrydags N, Bosmans E. Coenzyme Q10 deficiency in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is related to fatigue, autonomic and neurocognitive symptoms and is another risk factor explaining the early mortality in ME/CFS due to cardiovascular disorder. Neuro Endocrinol Lett. 2009;30: 470–6. Available: http://www.ncbi.nlm.nih.gov/pubmed/20010505 pmid:20010505

    45. Abdollahzad H, Aghdashi MA, Asghari Jafarabadi M, Alipour B. Effects of Coenzyme Q10 Supplementation on Inflammatory Cytokines (TNF-α, IL-6) and Oxidative Stress in Rheumatoid Arthritis Patients: A Randomized Controlled Trial. Arch Med Res. 2015;46: 527–533. pmid:26342738

    46. Castro-Marrero J, Sáez-Francàs N, Segundo MJ, Calvo N, Faro M, Aliste L, et al. Effect of coenzyme Q10 plus nicotinamide adenine dinucleotide supplementation on maximum heart rate after exercise testing in chronic fatigue syndrome–A randomized, controlled, double-blind trial. Clin Nutr. 2016;35: 826–834. pmid:26212172
     
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  10. rvallee

    rvallee Senior Member (Voting Rights)

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    I do see more and more comments on Twitter over time, growing concerns that maybe going all in with CBT for every ill and condition was a bad idea and that the evidence base may actually be fragile and possibly misleading.

    Far from a tipping point but I'd say frequency has increased from anecdotal sightings, in large part because of concerns about similar failures with some psychiatric conditions and the crisis of replicability. This entire body of work is built on the lowest possible tier of research quality and high bias, so it's a natural target for concerns, especially when it is usually implemented as an alternative to actual medicine. If it was complementary it would have had a longer shelf life, but as a primary treatment the field has jumped several steps and made claims that cannot stand scrutiny.

    I think that ultimately it will all end up as a shameful embarrassment that will be forgotten in archives, but it's still a long way to go, unfortunately.
     
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