Getting on the waitlist for a cfs specialist


Well-Known Member
So I called one office the other day and their prerecorded message mentioned needing a refering doctor as well as contact information for myself.

I might be able to get a referal after my sleep study, but I was hoping to get on the waitlist as soon as possible. I don't think my pcp would like me asking to see a cfs specialist before she has come to her own conclusions of what might be wrong...

Can I still get on the waitlist without a refering doctor set in stone yet? Did your specialist require this? Were you able to get one?

I am going to have to pay out of pocket since they don't take my insurance anyway and all the good cfs specialists are out of my state.

Am I rushing this? I'm 24 and live mostly bed-bound most days, leave the house once a week or less, and have only been severely sick since september 2015... I want answers and my docs don't seem to feel I'm urgent. I want to try and get a diagnosis asap and get treatments started in case it is still reversable this early on. Or at least get some bloodwork as a baseline.

Who Me?

Well-Known Member
I say get on a wait list and worry about the other stuff later. I know others here who have gotten to see docs without a referral. I don't think Kaufman needs a referral. So I think it might depend on the doc

Why tell your PCP it's a CFS doc? Just say you want to see Dr. and you need a referral. Period.

If you are bed-bound at 24, then yes rush, because whatever it is the sooner you get some answers the better.

I'm much older than you so maybe that is why I don't give a crap if I hurt my docs feelings. If you can't get what you want from your doc find another. I know it's not easy to do but for me, sitting back while others determine my fate is not acceptable. And I feel much better when I am proactive and do things vs sitting around.

So get on lists now, then worry about referrals later. IMO


Well-Known Member
Can I still get on the waitlist without a refering doctor set in stone yet? Did your specialist require this? Were you able to get one?
Unlikely I would guess. Yes, I have been to two ME specialists and both required a prior CFS diagnosis. The wait time was quite long, a year for one and over 5 months for the other.

Am I rushing this?
The sooner you can get an appointment the better. You can always cancel the appointment later if your PCP takes things in a different direction. I lost about 4 months where I could have been getting treatment and not getting worse because I hesitated getting a referral. I would get the ball rolling now if I were you.

Who Me?

Well-Known Member
@Aaroninoregon went to see Kaufmann. As far as I know he did not have a CFS diagnosis and he did not have a referral.

Just call and do it instead of wondering. No one can answer for sure except the office.

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