Does anyone know of a CF/ME support group in the San Francisco Bay Area?

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Hopeful_In_San_Francisco

Messages
11
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.
 
benenota

benenota

Messages
6
Hopeful_In_San_Francisco said:
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.
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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
 
benenota

benenota

Messages
6
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.
 
M

me/cfs 27931

Guest
Messages
1,294
benenota said:
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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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.
 
K

KristenSF

Messages
97
Location
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!
 
JaimeS

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
benenota said:
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?
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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!
 
frog_in_the_fog

frog_in_the_fog

Test Subject
Messages
253
Location
California
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.
 
N

NW123

Messages
1
Hopeful_In_San_Francisco said:
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.
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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. :)
 
R

rebeccamehr

Messages
3
Hopeful_In_San_Francisco said:
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.
Click to expand...

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.
 
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M

me/cfs 27931

Guest
Messages
1,294
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. :)
 
Ellie K

Ellie K

Messages
25
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
 
N

Navid

Senior Member
Messages
564
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!!!
 
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