Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
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Is Phoenix Rising growing? (membership numbers, server statistics etc)

Discussion in 'Information and Resources' started by Laelia, Mar 29, 2017.

  1. Laelia

    Laelia Senior Member

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    Yes I think this is important. The sense of ME community we have here on PR is really quite special, it would be sad to lose that.

    Thank you for clarifying this Sushi, it makes good sense :)
     
  2. taniaaust1

    taniaaust1 Senior Member

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    I completely understand about not wanting the ME people here diluted but it does concern me that this introduce yourself thing may end up causing some of the sicker ME ones who may still be able to read very small amounts but may be actually unable to formulate sentences well or may have shakey hands with the effort of typing words, unable to then became a member here at all :(

    I know when I was bedbound long term back in the past.. I had great issues formulating sentences and was using simple sign language with my hands as I couldn't communicate .. no way would I been able to post an intro at that point of time!!! So be aware that may be cutting some of the sickest members out from joining due to that rule when this site should be assessable to all who have ME.

    Maybe there are other ways to make this site less attractive to those who don't have ME? Can the areas of the forum which are more based on other illnesses, be more hidden from non members to not then be attracting them?

    ..........

    I don't know if it could be done here but some health support sites have on joining them a question box come up in which one then clicks what is the right answer, to make sure the ones joining are suitable to join.

    eg for something like this site it could be . Do you have ME/CFS or an interest in ME/CFS? Do you have another illness?
     
    Last edited: Apr 2, 2017
    Zombie_Lurker and Izola like this.
  3. Gingergrrl

    Gingergrrl Senior Member

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    I think there are also a great deal of people who truly do not know if ME/CFS is their diagnosis and are joining in good faith (to learn more and also to offer support to others on this journey).

    When I joined I had no idea what was wrong with me and PR is how I learned of OMI and my current doctor. For two years I absolutely believed without question that ME/CFS was my diagnosis (and still believe that it might be) but now have some doubts.

    But I do understand that there are many people who join who know 100% that they do not have ME/CFS and purely want to ask questions about B-12 & methylation or other topics. I have no idea what the answer is (and in my heart, I'd want to include everyone as long as they are not here to try to sell a product or troll and cause grief for legitimate members).
     
  4. Sushi

    Sushi Senior Member Albuquerque

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    Kina did create a template--it is very simple and can mostly be answered in single words. If a person is not able to create an introduction using this template, I doubt if they would be able to post on the forum at all. So it shouldn't be a problem.
    We already have that here--the answers go on the member's profile...but very few fill it out. An introduction in Introduce Yourself would be seen by everyone reading the forum by New Posts and would be listed under posts in the person's profile if anyone wishes to read it.
     
    Last edited: Apr 2, 2017
  5. Kina

    Kina

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    We are fine with people who might not know their diagnosis. What we are trying to avoid is things like "I am an active person who exercises all the time, I have an anal fissure maybe caused by a SNP, help me". If you want to overthink this, that is fine. Have some trust that we know what we are doing. Sushi and I have been dealing with a large number of obviously non-patients that would waste the time of all of us if we allowed them to post. We aren't weeding out people who might have ME/CFS. We are weeding out people looking for answers related to general health issues that don't even know what ME/CFS is.
     
  6. Kina

    Kina

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    And people will click yes to things like that even though they don't know what ME/CFS is. People constantly click yes to they have read the rules, when they haven't.

    We are considering hiding forums. We can discuss this to death, think of every possible permutation of what is the best way to do things. We are not disallowing patients, those who are too sick to post join and lurk anyways. Can we not discuss this to death. The non-patients are totally obvious. We send them a warning, they go away without responding. I have sent 3 warnings today to people with various health problems that have nothing to do with ME that totally disregarded the big post we haver prior to joining. If somebody says I am too tired to post or not sure they have ME, we let them in.
     
    Last edited: Apr 9, 2017
  7. Gingergrrl

    Gingergrrl Senior Member

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    Thank you @Kina and that really made me laugh. Am actually still laughing now :rofl::rofl::rofl:

    Truly don't want to over-think it and never knew there was an introduction template until reading this thread today. I have faith that you guys know what you are doing and have nothing else to add to this!
     
  8. Sushi

    Sushi Senior Member Albuquerque

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    And I have sent two today.
     
  9. Mary

    Mary Senior Member

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    @Kina, @Sushi - I have often thought that I would be lost without this board. The aggregate amount of knowledge here together with willingness to help is priceless. Thanks, moderators, for making this possible ---
     
  10. Woolie

    Woolie Senior Member

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    Here ya go Esther12:
    You're welcome.
     
    Last edited: Apr 9, 2017
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  11. Woolie

    Woolie Senior Member

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    Yes, of course others are always free to view the discussions, just not have input. And they would probably have no interest in the members only pages anyway (you know, stuff on managing your sex life after ME).

    But it would still be nice to have input from non-patients with a particular connections to ME though. Like carers, people doing patient-centered research, etc.
     
  12. Sushi

    Sushi Senior Member Albuquerque

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    These non-patients are very welcome here and the new notice that appears for those who are not logged in as members makes that clear.
     
  13. Esther12

    Esther12 Senior Member

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    Arrgh! You've revealed too much... my mystique is gone.
     
    Valentijn, ladycatlover, Mel9 and 3 others like this.
  14. arewenearlythereyet

    arewenearlythereyet Senior Member

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    Oh is this the place where we start introducing others who haven't yet......I like this idea.

    To save embarrassment I will just do me

    Hi I'm a pompous ass who has an opinion about everything and likes a good debate. I can be a bit direct and sarcastic....sorry. I am slow and foggy at times and will sometimes sneak back in to my posts and correct spelling mistakes without telling anyone. Shhhh.
     
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  15. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    The board will still ad a "last edited" notation that rats you out. I know because I do it too.
     
  16. daisybell

    daisybell Senior Member

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    Maybe I can do me too - as I'm embarrassed I never did my proper intro post...!

    Hi - I like to think I'm nice, but I'm probably guilty of thinking I know best...
    I used to be patient but now I'm not - takes too much energy!
    This forum has saved my sanity, and gives me hours of reading when I can't do much else. :)
     
    Laelia, Little Bluestem, PatJ and 4 others like this.
  17. Ysabelle-S

    Ysabelle-S Highly Vexatious

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    I have not logged in recently, but look at the site pretty much daily. Mostly to catch up on any science papers I may have missed.
     
    Laelia likes this.

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