A crisis center for cfs in NYC

[undcvr]

There is no crisis center for me/cfs in NYC, I would like to start one. I think it is embarassing that in a city as big as this and with so many people that there isn't a place that pple can go to for help.

How do I go about doing this ?

If anyone can volunteer their time, I would very much appreciate this.

 

[Nielk]

By crisis center, what do you mean?
Do you mean a support center for patients to get together and give each other support?

 

[undcvr]

or a place that people can just go to to get more information and references about it. I just cannot find anything about it at all.

Not if patients can even make it to the support group if they are so chronically fatigued in the first place, but a place that they can call to or their relatives can visit for more information

 

[Nielk]

Do they have such places in other cities?
I just assumed that you find information from websites like this one and others and receive information from other
patients.
I know some cities do have support groups where patients who are able to get together and it's a great help
for them to have each other as a support system.
I would personally love to have a place like that to go to if it was near my house.

 

[undcvr]

I think citybug said that there was such a place here, but it didnt last long. Pple couldnt attend it regularly and it was quite depressing becos many of them had the disease for a long time

 

[justinreilly]

like an AIDS 'crisis center' right? i've been thinking about that. even here in boulder there is one downtown with its own building. i've been thinking about going to them and seeing if they could donate some resources, maybe house a tiny ME center in their org. so, i bet in nyc (where i grew up) there is not the surfeit of resources for that sort of thing that there is here, but maybe go to gay mens' health crisis center or whatever the AIDS orgs are now and ask them how to go about setting one up (and maybe lay the groundwork that way for them later supporting you more).

 

[Stone]

What a wonderful and noble idea. I hope you have great success with it.

I think it would be fantastic if patients and physicians could call a toll-free number and ask for a packet of CURRENT and ACCURATE and RELEVANT information to be sent to them. That same packet that I find myself putting together for just about every physician I see, once we establish a decent rapport, that is (they're not generally receptive to such overtures on initial visits, I find). Wouldn't it be nice if our government or one of our advocacy groups did this? I'm referring to materials like the full text of the Canadian Consensus document as well as the good one from the NJ medical assn, as well as the XMRV studies and some good articles as well as web addresses and contact information for people who know what they're talking about and who can answer questions; stuff like this. *tired sigh*

 

[justinreilly]

office space is so expensive in ny, maybe a good way would be to start out of your apartment over the web. just throwing it out there.

 

[undcvr]

Justin, do you know how much creds I would need to just walk into one of these places ?

Stone, that is exactly what I mean. I am so tired of paying doctors to educate them about our condition, there must be a place that they can access easily with all the info. I mean if they can have an hiv place in boulder, CO, why cant we have a similiar place here. You mean this city itself done not make pple living in it susceptible to cfs ?

Obviously having the information on the internet isnt enough for them to access it. There must be a way to get the information into clinics and practices here.
Oh and incidentally, the MDs here are totally afraid of malpractice.

 

[undcvr]

I mean even socially speaking it is quite a boost on the personal awareness level to even know that such a place exists in a city like NYC. Because now, after knowing that it does not, it affects me psychologically to know that there is a crisis center for almost everything else in this city.