Looking Ahead to Change: Little by Little
I don't make New Year's Resolutions. I don't think I ever really did, but the last decade or two would have been enough to stifle that impulse. I've just been too aware that I don't have that much control over what happens in my life.
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Were/are you a healthcare provider who now has ME/CFS? Join our website advocacy project!

Discussion in 'Advocacy Projects' started by Gingergrrl, Feb 13, 2015.

  1. Gingergrrl

    Gingergrrl Senior Member

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    @Dr.Patient, @jeff_w, and myself (@Gingergrrl) are in the very early stages of creating a new website for healthcare providers whose careers were interrupted or ended by ME/CFS.

    I am posting this to see how many people here on PR would be interested in sharing their stories on this website. We are looking for licensed healthcare professionals of any field (doctors, physician assistants, nurses, nurse practitioners, social workers, psychologists, physical therapists, occupational therapists, etc) Basically anyone from any country worldwide who provided direct patient care and is now an ME/CFS patient.

    To quote @Dr.Patient below:

    "The mission of this website is to gather all health care providers who are also sufferers of this illness. Their stories posted and updated as needed will become the strongest voice to handle opposing physicians, increase awareness in the medical community, and helping in formulating proper diagnostic criteria."

    So if you are interested in joining us, please either add your name to this thread or send me a PM. Once we get enough names, we will form a private group on PR to discuss this plan and let each person know what we need when they write their story. The website does not exist yet but it will and we are very excited about it!

    Also, let us know if you know someone in the healthcare field with ME/CFS who may be interested but is not a member of PR (only with their permission of course!) and we want as many stories as possible! Thank you to everyone in advance who may participate.
     
    helen1, nandixon, ahimsa and 19 others like this.
  2. Roy S

    Roy S former DC ME/CFS lobbyist

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    This is a very good idea in my opinion. I would strongly caution against mission creep, though. From back in the mid-80s there have been countless efforts by individuals and groups to try to do a wide variety of things that have fallen apart. A primary cause is that people, especially patients, try to do too much. It's very difficult to say no to people who often have good ideas for additional things to do but it is often necessary.

    Individual patient efforts to write with excellence from the perspective of individual healthcare specialties is very doable and could be exceptionally helpful

    BTW, I could have used this 24 years ago for an incredibly pivotal time in lobbying for dealing with one problem person in a key position on Capitol Hill. It was an MD who almost blocked essential legislation. I told him I wish he could talk to other MDs with this disease. It's a long story that has never been told, but things would be very different if he had succeeded.
     
    Stories from psychiatrist patients and psychologist patients are rare and could be exceptionally helpful, in my opinion.
     
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  3. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Count me in. I'm a registered Medical Technologist (ASCP) with experience as a medical laboratory manager. I'll gladly tell my story. I had to take an unplanned early retirement due to ME/CFS/SEID.
     
    Last edited: Feb 14, 2015
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  4. Sasha

    Sasha Fine, thank you

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    @Gingergrrl and @Dr.Patient - this is a great idea and I hope your mission does creep! I think the idea of collecting clinicians' experiences is fantastic and that there are other things that such a group could achieve besides (which I've mentioned elsewhere).

    Just a suggestion - I think a different thread title could help pull more people in. How about something like, 'Were/are you a healthcare provider who now has ME/CFS? Join our website advocacy project!'

    Just an idea, but I think that action-oriented thread titles work well when you're issuing a call to action. The current title sounds a bit like you're telling people about a website that already exists and that they can go and read - something passive.
     
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  5. Butydoc

    Butydoc President

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    Hi Gingergrrl,

    Count me in. I'm a surgeon and feel this is a great ideal.

    Best,
    Gary
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    I am not fully awake yet but @Sasha, I will change the thread title and agree with you 100%. I did not like my title last night but couldn't quite think of what to call it and planned to re-name it later so thank you!!!

    What is mission creep? Did I phrase something else badly or unclear?

    ETA: Just changed thread title. Sasha you ROCK! :thumbsup:
     
    Sasha likes this.
  7. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    Roy, would you be able to join us as a lobbyist with experience, or perhaps have some connections in the D.C. area, thanks!

    I know a couple of psychologists with this illness, and I will approach them.
     
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  8. Sasha

    Sasha Fine, thank you

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    No, I don't think you phrased anything badly!

    Mission creep is where you start off with a clearly defined mission and as time goes on, the edges start 'creeping' outwards and more and more things get included.
     
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  9. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    I see, Ginger, Jeff, we should definitely stay focused on our goal!
     
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  10. Gingergrrl

    Gingergrrl Senior Member

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    @Sasha and @Roy S thank you and that makes sense. I guess if it takes you away from the original task and uses up our limited energy and resources it could be bad but we are pretty focused on our goal.

    We also know that we are all ill so taking this project slowly and doing whatever we can each day without adding pressure. It is great to work with other PWC's who are passionate about this mission yet understand our medical limitations.
     
    Sasha likes this.
  11. SDSue

    SDSue Southeast

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    Tiptoeing in.
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    @SDSue Please join us if you feel comfortable and your story would be a great addition if you choose to share it. We are literally just starting this project and will be adding stories indefinitely and want hundreds (if not thousands!) on the site down the line...
     
    Last edited: Feb 14, 2015
    SDSue likes this.
  13. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    Dr. Gary, thank you for being our President! Thank you for your support of our website idea, we really appreciate it!
     
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  14. Roy S

    Roy S former DC ME/CFS lobbyist

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    Sorry, I don't have enough energy to do that and probably couldn't help a great deal anyway. There is a surprising number of healthcare professionals on this forum who would be better than me. I hope they participate.

    Posse up, folks! :)

    I don't think you want to get involved in Washington now or maybe ever. Most things become embroiled in politics there and it seems to be even worse than it was long ago. An exception could be to be part of a broad coalition that I have been advocating for -- forever. That posse sometimes seems more like a circular firing squad.
     
    A couple of random thoughts --

    There was a group of medical professionals with this disease formed long ago. I don't recall their name (Medical Professionals with CFIDS?) and don't know their status now.

    If you do a web search for Thomas English M.D. I think you'll find something and also find his early efforts interesting. He was a surgeon in Asheville, North Carolina.
     
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  15. Jenny

    Jenny Senior Member

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    I'd like to contribute. I was a psychologist before I had to take early retirement.
     
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  16. Snowdrop

    Snowdrop Rebel without a biscuit

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    Bump?

    Don't know if that's appropriate but was just wondering how this project is coming along.
    I think it's really worthwhile and would be of great benefit to all of us from an education POV.

    I know these things take time especially in our circumstances but my curiosity is getting the best of me.
    take care all,
    SD
     
    OverTheHills likes this.
  17. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    Thank you, we are still working on it, although a little slowly due to our own health levels, appreciate your interest!
     
  18. Snowdrop

    Snowdrop Rebel without a biscuit

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    Thanks for the response. Understood.
     
  19. Butydoc

    Butydoc President

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    Hi Dr Patient and others on this thread,

    I have been reconsidering my position concerning this new web site. The problem I'm having is why is there a need to start a new web site and not use Phoenix Rising as your platform. As i'm sure many of you know, this web site is run by volunteers and has a membership of more than 11,000. It has been a strong interest of the board to have more volunteers involved to head up projects like the one that is presently being considered. 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.

    It is not clear to me why our members would want to start their own web site rather than volunteer and support Phoenix Rising. 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.

    I would like vigorous debate concerning the above.

    Best,
    Gary
     
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  20. Gingergrrl

    Gingergrrl Senior Member

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    @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.
     
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