Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Does anyone know of a CF/ME support group in the San Francisco Bay Area?

Discussion in 'Upcoming ME/CFS Events' started by Hopeful_In_San_Francisco, May 17, 2016.

  1. Hopeful_In_San_Francisco

    Hopeful_In_San_Francisco

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    HI there - I would love to join a CF/ME support group but don't know of any in my area (San Francisco Bay Area), can this group please help me? This disease is very isolating and I think it would be helpful to connect.

    I am just shy of 39 and had CF/ME for 2.5 long years. I have been a patient at the Open Medicine Institute since November 2015, after getting no help from Holtorf, UCSF & Mayo Clinic Scottsdale.
     
    Webdog likes this.
  2. Webdog

    Webdog Senior Member

    I would be interested in this as well.
     
  3. benenota

    benenota

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    I would love to have this in SF! But I am helping to organize the May 25 protest here in SF and cannot do one other thing besides that right now. Any chance u can come to the protest? May 25 12 noon SF Federal Building 90 Seventh Street, near Mission Street. Thanks, Jane Pannell
     
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  4. benenota

    benenota

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    Any chance u can join us at the protest? SF Federal Building, 90 7th Street, May 25 12 noon.
    We MUST take advantage of the momentum we have going. Thanks, jane Pannell
     
    Kati likes this.
  5. benenota

    benenota

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    Please, please, please, anyone in the SF Bay Area, join us at the protest. I know we are all sick and it is really hard to get there, but we must let HHS know we are out there, and will not stand for the neglect any longer. Many of us organizers have been using all our spoons every day for weeks to get this protest together, and we would love for anyone who possibly can to join us.
    If you can't come, please send a friend. Or send a few dollars to MEAction.net. These protests ain't cheap.
    Thanks.
     
    Kati and Jennifer J like this.
  6. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Try MeetUp.com. Search for groups with the word "chronic" in your area.
     
    Kati likes this.
  7. Webdog

    Webdog Senior Member

    I'm finding no shortage of Multiple Sclerosis and Fibromyalgia support groups. But striking out on ME/CFS.
     
  8. Webdog

    Webdog Senior Member

    Thanks for the info.

    I have a doctor appointment the day before, and if that doesn't cause a crash, I'll do my best to show up.
     
  9. IreneF

    IreneF Senior Member

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    San Francisco
    I'm in SF, but I hardly ever go anywhere except medical appts.
     
    KristenSF likes this.
  10. benenota

    benenota

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    great! good luck. jane
     
  11. KristenSF

    KristenSF

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    San Francisco, CA USA
    I would love to be in a support group or go to a protest, but my health keeps declining. I had a trip to an oral surgeon this week to get a molar extracted (which I've put off for months) and it leveled me. My partner is going to attend the protest in SF on my behalf. I wonder if the SF folks could have a virtual place to chat so those of us who are mostly housebound could join in. Of course I don't have the energy to organize it and wouldn't want to task the rest of you sick folk with it!
     
  12. Daffodil

    Daffodil Senior Member

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  13. JaimeS

    JaimeS Senior Member

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    That's what I was going to suggest! If there isn't a support group there, maybe the protestors can form one!
     
  14. frog_in_the_fog

    frog_in_the_fog Test Subject

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    Meetup doesn't work for people that are homebound. Which is why you don't see many support groups for cfs/me. Certainly we could work to create one for people in the sf/bayarea. There is currently a group that meets by phone conference on Saturdays run by @Horizon.
     
    Webdog likes this.
  15. NW123

    NW123

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    Hi there,

    We have a lot in common, age, location, etc. I'm also trying to get an appointment at the open medicine institue. I'd love to connect and chat with you but I can't figure out how to send you a message with my email/contact info. :)
     
  16. Hopeful_In_San_Francisco

    Hopeful_In_San_Francisco

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    How can I help?
     
    Last edited by a moderator: Sep 27, 2016
  17. rebeccamehr

    rebeccamehr

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    Hi. Caring for a parent with CFS and looking for a group. Shifted clinicians from CPMC to Stanford , and exploring the clinics where you have already been seen. Would like to share notes.
     
    Last edited by a moderator: Oct 10, 2016
  18. Webdog

    Webdog Senior Member

    Hi everyone.

    I'm in San Francisco (Sunset District) and a patient at the Open Medicine Institute (as well as Kaiser).

    Recently, I've been encouraged by a doctor to join a local support group. However, I've been unable to figure out if one actually exists.

    If someone could steer me in the right direction, I'd appreciate it.

    Thanks. :)
     
  19. Ellie K

    Ellie K

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    I'm in el cerrito. I'm a patient at stanford, and would be interested in some kind of local support group, I tried one from meetup.com, but it was for all chronic illness & the fit just wasn't right. It seems like in this thread at least there might be enough interest to make something happen, but I wouldn't know how to make it
     
    Webdog likes this.
  20. Navid

    Navid Senior Member

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    Can a SFBay Chat group be set up here. I'd be interested in hearing others Dr experiences in the area. I've seen almost everyone: Gordon, Montoya, Kogelnik, Stricker, Greene (Lyme)...and many mainstream specialist....just keep getting sicker and sicker nothing has helped.

    Sometimes I wonder if it is ME and if what is really causing my illness is still TBD. I'm afraid to try any new treatments cuz everything else Ive tried has made me sicker. Ok I just started a group under groups...at least we can chat about local options there. Thanks!!!
     
    Last edited: Oct 10, 2016
    Sing, Webdog and RL_sparky like this.

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