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Questionnaire on ME/CFS

Discussion in 'ME/CFS research' started by mariovitali, Jul 22, 2018.

  1. mariovitali

    mariovitali Senior Member (Voting Rights)

    Messages:
    499
    All,

    As some of you know i've been trying to identify whether there are conditions other than Infections such as EBV that may be setting the stage for ME/CFS or co-exist with ME/CFS.

    Machine Learning suggests that Liver-related conditions may be of particular interest.

    I created a Questionnaire that lists a number of Conditions / Infections / Surgical Procedures and i would kindly ask you to go through it. It takes no more than a minute to do so.

    The Google Form can be found here :

    https://goo.gl/forms/oRa5ZPtgUBVnvKwF2

    Thank you in advance.
     
    JaimeS, Inara, MSEsperanza and 3 others like this.
  2. mariovitali

    mariovitali Senior Member (Voting Rights)

    Messages:
    499
    The questionnaire link will be also posted on Phoenix Rising and a couple more FB Groups.

    It is interesting to see that already we have entries such as Drug Induced Liver Injury, Hemochromatosis, Wilson's Disease (out of 11 entries).

    EBV is currently the most frequent answer.
     
  3. Mij

    Mij Senior Member (Voting Rights)

    Messages:
    8,204
    I'm not surprised EBV is a common answer since over 90% of the general population carries the antibodies, and with a dysfunctional (?) immune system it can become a problem.
     
    JaimeS, Inara, Melanie and 1 other person like this.
  4. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    6,261
    I don' t know my aunt' s full medical history, but i do know that she had pretty bad hepatitis when she was young.
     
  5. mariovitali

    mariovitali Senior Member (Voting Rights)

    Messages:
    499
    Here are some initial results based on 36 responses. Unfortunately i do not know how to better depict them (i would like to show response description within the bar charts but havent found a way to do this for now). What is important is that we have a number of responses of ME/CFS patients with elevated Liver Enzymes (25% - 9 responses). NAFLD also appears to be important (5 responses = 13.9%).

    Of course what we need to know is whether there is a statisticaly significant difference between the existence of NAFLD to the general population vs ME/CFS patients. The same applies for all other options of the Questionnaire. In the section of Viruses, EBV answer is the most frequent one (52.8%) with Candidiasis being the second (30.6%). Other frequent answers are HHV-6, Staphylococcus Aureus and Coxsackie Virus.

    Screen Shot 2018-07-23 at 09.12.11.png Screen Shot 2018-07-23 at 09.12.39.png
     
    Inara likes this.
  6. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    I just wonder why the questionnaire lists bacteria and fungi infections as "viral".
     
    Last edited: Jul 23, 2018
    mariovitali and Trish like this.
  7. mariovitali

    mariovitali Senior Member (Voting Rights)

    Messages:
    499

    Ah yes, thank you I will fix this
     
    Inara likes this.
  8. Amw66

    Amw66 Senior Member (Voting Rights)

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    H.Pylori as a condition - seems to be linked to liver function too?
     
    Inara likes this.
  9. Wonko

    Wonko Senior Member (Voting Rights)

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    Location:
    UK
    I couldn't select any of the virus options, simply because I don't know, the NHS doesn't seem to consider it important to test for particular viruses and all I've ever been told is along the lines of "probably a virus, it'll sort itself out".

    The one I consider as onset I had to be helped from the waiting room into the doctor's room, "probably a virus", given a script for codeine (which even once I got someone to fill it did precisely nothing) and left to make my own way home.

    NHS- virus = we don't know, go away, you're clearly sick and we don't want to catch it.
     
    Mij, Inara, MarcNotMark and 4 others like this.
  10. NelliePledge

    NelliePledge Moderator Staff Member

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    13,140
    Location:
    UK West Midlands
    only virus I know Ive had is chicken pox - Ive had various things that Ive been told were viral but dont know what the specific virus was
     
    Chezboo, Trish and Wonko like this.
  11. mariovitali

    mariovitali Senior Member (Voting Rights)

    Messages:
    499
    @Amw66

    From Research i have seen there seems to be a connection between H. Pylori and NAFLD.

    All of the conditions/infections listed in the Questionnaire affect in a negative way Liver function.
     

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