Is Phoenix Rising growing? (membership numbers, server statistics etc)

[Laelia]

We want this website to be for patients and not get diluted and confusing with new non-patient members

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.

Yep, that is the reason. Patients who suspect that they might have ME/CFS but aren't sure and don't have a formal diagnosis are welcome to explore it with members. What we are trying to avoid is people joining who may be perfectly healthy except for some relatively minor problem that has been discussed here by members who have that problem as part of their ME/CFS. The same approaches to the problem are not likely to work. Or, people who clearly have an unrelated disease but saw an intriguing post that they want to discuss. Again, discussing symptoms and treatments could lead to confusion--apples and oranges trying to discuss the best climate to thrive in!

Thank you for clarifying this Sushi, it makes good sense

 

[taniaaust1]

Maybe I should provide some kind of template for them. I like the shorter intro's -- how long ill, any treatments, why they came to PR, where they are from. Most who have chosen to Introduce themselves in the past, have done so by choice, so therefore have written longer intro's. We have instituted this because we have had a ton of new members who we, the mods, encounter first and many of them do not have ME, aren't interested in ME. They just want to discuss general health issues or ask a health question because they have googled and we end up in the result list. They have no idea what ME is. We want this website to be for patients and not get diluted and confusing with new non-patient members.

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?

 

[Gingergrrl]

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).

 

[Sushi]

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

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.

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.

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.

 

[Undisclosed]

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).

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.

 

[Undisclosed]

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?

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.

 

[Gingergrrl]

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".

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

If you want to overthink this, that is fine. Have some trust that we know what we are doing.

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!

 

[Sushi]

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.

And I have sent two today.

 

[Mary]

@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 ---

 

[Woolie]

Scary! I've still never done an introduction thread.

Here ya go Esther12:

Hi! I'm Esther12, I'm a sort of half-furry, half care-bear creature with an quizzical expression. But don't let that fool you for a minute. The only thing fluffy about me is my bearsuit.

You're welcome.

 

[Woolie]

We want this website to be for patients and not get diluted and confusing with new non-patient members.

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.

 

[Sushi]

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.

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.

 

[Esther12]

You're welcome.

Arrgh! You've revealed too much... my mystique is gone.

 

[arewenearlythereyet]

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.

 

[Little Bluestem]

I am slow and foggy at times and will sometimes sneak back in to my posts and correct spelling mistakes without telling anyone.

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

 

[daisybell]

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.

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.

 

[Ysabelle-S]

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.