• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Were/are you a healthcare provider who now has ME/CFS? Join our website advocacy project!

Butydoc

Senior Member
Messages
790
@Butydoc I have to disagree with you in the sense that I volunteered to create birthday threads for Phoenix Rising members and then worked with Sushi to develop the idea. I spent hours training with her how to post links and photographs, etc, as I had no prior computer skills. I figure out which time zone members are in and I spend a good amount of time creating and posting these threads (sometimes in the middle of night for my time zone) so I do not miss one. I am happy to do this and love the project but do find it hurtful when you said that no volunteer will commit to any project in any way.

I also choose to volunteer my time to help the End ME/CFS Project (from NIDA and OMF) and other causes that I believe in. I do not see how splitting time between different causes will lead to the risk of PR folding? I am very ill but as a (former) medical professional, when Dr.Patient mentioned his idea, I was intrigued by it and wanted to help. We never dreamed that this idea would upset anyone at PR, and you initially felt that our idea was a great idea as well.

I am too ill to work on the idea at present anyway, so it is a moot point for me, and I leave it up to Dr.Patient to decide how to proceed. I was just trying to help what I felt was another good cause and nothing more! The last thing I ever intended to do was upset you or anyone at PR by supporting this project.
Hi Gingergrrl,

I wasn,t singling out any individual for not volunteering. Clearly many of our members are too sick to volunteer. I,m actually speaking in general terms and to those who have the energy and health to help. Specifically those individuals who want to work on this new web site. If our members don't see the value in this web site and feel they need to start their own site, then there is a problem with our site. I would like to identify what those problems are and try and fix them. My response was meant to spur debate and try to improve what Phoenix Rising has to offer.

Best,
Gary
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
We have contacted many members to see if they are interested in volunteering. Unfortunately, we have had very poor success in attracting individuals to commit to any project or volunteer in any way.
This in no way minimizes the contributions of the wonderful volunteers Phoenix Rising has--a toast to all of them! :thumbsup: But the fact is that we have way too few people trying to keep a very complex forum and non-profit organization running. The way it is going now, the health of those volunteers is suffering from trying to do too much, and this is not sustainable.

If our members ultimately feel our web site is not worthy of their time and effort, I really feel that this web site is at risk of folding.
As far as volunteers, we are more or less "running on fumes" and all the great suggestions that come in, and which would be great to implement, just can't be handled by the few volunteers we have.

Sushi
 

daisybell

Senior Member
Messages
1,613
Location
New Zealand
I am now confused as to what is actually being planned. In my mind, I had envisaged a site which was just the stories of health professionals, which could be used as a link for educating other health professionals about the illness and challenging perceptions, and a point from which stories could be taken to illustrate issues.

If this is the case, then the site would in no way replace PR, but hopefully could be somewhere that health professionals would visit....

Am I on the right track?
 

Gingergrrl

Senior Member
Messages
16,171
I am now confused as to what is actually being planned. In my mind, I had envisaged a site which was just the stories of health professionals, which could be used as a link for educating other health professionals about the illness and challenging perceptions, and a point from which stories could be taken to illustrate issues.

If this is the case, then the site would in no way replace PR, but hopefully could be somewhere that health professionals would visit....

Am I on the right track?

@daisybell Yes, this is exactly what we envisioned as well. It was not to be a forum or anything interactive but simply where physicians (and other former medical professionals with ME/CFS) would have their stories posted and it could be used to educate non-believing physicians (i.e. who post on Medscape) etc. Dr.Patient could explain it much better than I can since it was his idea (only if he wants to elaborate of course.)
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
I am now confused as to what is actually being planned. In my mind, I had envisaged a site which was just the stories of health professionals, which could be used as a link for educating other health professionals about the illness and challenging perceptions, and a point from which stories could be taken to illustrate issues.

If this is the case, then the site would in no way replace PR, but hopefully could be somewhere that health professionals would visit....
Am I on the right track?
Unbeknownst to the members who put this project forward, a very similar project had been planned (was on the wish-list) for Phoenix Rising, as part of its larger mission, but Phoenix Rising didn't have the volunteers available to implement it.

Sushi
 

Butydoc

Senior Member
Messages
790
I am now confused as to what is actually being planned. In my mind, I had envisaged a site which was just the stories of health professionals, which could be used as a link for educating other health professionals about the illness and challenging perceptions, and a point from which stories could be taken to illustrate issues.

If this is the case, then the site would in no way replace PR, but hopefully could be somewhere that health professionals would visit....

Am I on the right track?
Hi Daisybell,

I believe the concept about the new site is good. I just feel that the potential members who are willing to put in such efforts to start their own site dilute the number of people who are capable of helping with this web site.
Again, why reinvent the wheel, i.e. forming a non profit organization, paying for the web site, opening banking relationships, monitoring the threads etc. Would't those efforts be better focused on the project rather than the structure and running of a new web site. It is hard for all of us who volunteer to see our members volunteer on another web site where there is such a need with this web site in term of people helping out or promoting new projects.

Best,
Gary
 

snowathlete

Senior Member
Messages
5,374
Location
UK
Although I know what PR is saying about not having enough volunteers, there may be projects where PR is not the most appropriate platform; it really depends on what the project is.

A project like this one being discussed in this thread might well be an excellent one for PR to provide a platform for however. Probably PR is a good platform for the majority of such efforts. Though I am not involved in the details so I can't say for sure, it just seems that way from the outside looking in. PR obviously has lots of traffic, and is already set up and so the same project here would likely be more sucessfull here than on a fresh new site. And easier/quicker to implement too.
 

GracieJ

Senior Member
Messages
772
Location
Utah
If you all can pull this off one way or another, please do.

Thanks to @halcyon, last week I read one of Thomas Asheville's articles for the first time. I had seen quotes from it once or twice. Arm-pumping YES!! that I was then able to e-mail it to family.
 

Hip

Senior Member
Messages
17,824
This is a very interesting idea.

In theory, as a conservative estimate, there should be around 2250 physicians in the US who have ME/CFS, and around 7250 nurses in the US who have ME/CFS.

This is because there are around 900,000 physicians (both primary care and specialist) in the US (data from here), and if we take a conservative figure of a 0.25% prevalence of ME/CFS, that would work out to 2250 physicians having this disease. Similarly, there are around 2,900,000 nurses in the US (data from here), so that that would work out to 7250 nurses with ME/CFS.

It's possible though that these figures might be a bit higher, since ME/CFS is often virally triggered, and those who work in health care may have greater exposure to viruses, from their coughing and spluttering patients.
 
Last edited:
Messages
15,786
It was not to be a forum or anything interactive but simply where physicians (and other former medical professionals with ME/CFS) would have their stories posted and it could be used to educate non-believing physicians (i.e. who post on Medscape) etc. Dr.Patient could explain it much better than I can since it was his idea (only if he wants to elaborate of course.)
Phoenix Rising is already quite a bit more than a forum - the forum is just one section of the website. It already has blogs, an articles page (which is a lot more complicated that it looks!), and a wiki.

Basically, the Phoenix Rising website already has the capability to host and support such a project, so it would save some effort in getting a separate site set up. It also already has some volunteers who could probably assist with the technical aspects, and many who could help with organizational aspects and getting things implemented and maintained. And it already has a ton of internet traffic, and topics here usually get listed quite prominently when doing a google search.

Hence it makes the most sense to simply put the testimonials and such here somewhere, instead of starting a new site for that specific purpose. It wouldn't have to be in a forum format, and as you and others have suggested, it probably shouldn't be in a forum format :D
 
Last edited:

Gingergrrl

Senior Member
Messages
16,171
This in no way minimizes the contributions of the wonderful volunteers Phoenix Rising has--a toast to all of them! :thumbsup:

@Sushi Thank you for saying that and I found the original comment hurtful as I have now been voluntarily creating the b-day threads for five months, even when I am too sick to eat or walk, I have my b-day list and create the threads. I have had people tell me that it was the only greeting they received for their b-day or that it made them cry so I know it is important work and I will continue to do it as long as I can.

I created this thread to help Dr.Patient with an idea that I supported- nothing more and nothing less. We had no idea that PR was planning to create this same idea and do not understand why this initially led people to be angry with us.

I have been very sick the last week due to multiple set backs and severe nerve pain and cannot take on anything new (regardless of where this project occurs) and am bowing out of this thread! I believe this will play out however it is meant to be.
 
Messages
15,786
We had no idea that PR was planning to create this same idea and do not understand why this initially led people to be angry with us.
No one was angry, or making accusations regarding anyone's lack of volunteerism. They were suggesting a more efficient and effective way to implement the project in an attempt to be helpful.
 

Gingergrrl

Senior Member
Messages
16,171
No one was angry, or making accusations regarding anyone's lack of volunteerism. They were suggesting a more efficient and effective way to implement the project in an attempt to be helpful.

I am not referring to this thread and will just leave it at that. I would love to be able to say more but it would not be appropriate and will take the high road.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Thank you for saying that and I found the original comment hurtful as I have now been voluntarily creating the b-day threads for five months, even when I am too sick to eat or walk, I have my b-day list and create the threads.

I think it is a given that Butydoc was commending the volunteers who do give time and energy to facilitate great projects like you are doing. He is, after all, a volunteer himself! :) As am I, and everyone else who contributes to this site. The issue is that there are not enough volunteers and those who are volunteering are spread way too thin--including you!

Sushi