CFS& AIDS clinic at Oregon Health Sciences University???

[chloe]

I read there is a clinic for us at the CFS & AIDS Clinic at the Oregon Health Sciences University in Portland ---- the major health university for Oregonians.

Does anyone know anything about this clinic? Who staffs it? What their approach is?

Thanks in advance.

 

[chloe]

I telephoned their clinic, which is apparently run out of their Internal Medicine Clinic. This seems somewhat peculiar because other places I have known about ---most AIDS clinics are run out of their infectious Disease Clinics. I don't know where I saw information about this clinic, but it doesn't seem to offer anything x-tra, if anythig at all! Disappointing. If anyone has any add, please feel free.

 

[WillowJ]

as far as I can tell, OSHU believes CFS to be a variety of fibromyalgia (common belief especially by rheumatologists in my area), which they believe to be partially psychological.

When I have called the Rheumatology or Infectious Disease clinic at OHSU to ask how they treat CFS, they have variously mentioned Tilt Table Testing but told me to call at a different time to speak to the nurse, or insisted that they will only talk to my primary care doctor and only take patients with specific documentation, but will be happy to explain to a primary care doctor how to collect such documentation (or possibly they also meant, generally how to diagnose and treat the condition).

If you are looking for pain and sleep treatments, this would probably be fine; OHSU is a very fine teaching hospital and despite Dr. Bennett's unsound thinking, their fibromyalgia program seems to be adequate (I have a relative who has participated in studies there).

If you are looking for immunology, infections, I do not know for sure, but I don't think OHSU knows how to do this. Dr. Lovelace or whatever his name is, quit ME/CFS research and went over to the dark side, and OHSU (if they followed Lovelace) has since come back from there, but I cannot find out that they are educated about ME.

As far as ID doctors for ME, there are some options in California which are most likely better.

note: I call my condition ME, but I have learned to say "CFS" to clinics where I want my ME treated, to assess their level of prejudice and because they may not know what "ME" is (I have had a neurology clinic check with the neurologist, tell me they do indeed treat "myalgic encephalomyelitis", and then tell me later they assuredly do not treat CFS and most definitely will not assess me for weak lung muscles [my pulmonology results then and now show that I have weak lung muscles, a neurological condition])

 

[chloe]

Dear WillowJ,
Thanks for your description of what's at Oregon. You just saved me a trip! One thing I don't seem to suffer from is
fibromyalgia.
I now tend to think that I need a mega virology work-up, with PCRs of herpesviruses 1-6. But my knowledge base is growing.I tend to think highly of Montoya, particularly as a human being, but not sure how skilled he is as a clinical virologist, but again, he's the doc who treats the HIV patients at Stanford, so I take that back.

This being the San Franciso Bay Area, one would think there are a number of excellent clinical virologists, but I tried to chase this down several years back, and didn't come up with much. Anyone with suggestions? I would include here docs who are experienced treating viral reactivations in the context of solid organ transplants (heart, lung, kidney, liver). CMV (which does not appear to be a problem that I have), is a big problem for transplant surgeons. I find it interesting to read their medical publications and begin to understand how they approach the problem (for example, search "herpes" and "transplant" and it will bring up mainly CMV publications.

Again, so kind of you to share the insights about Oregon. How disappointing, because there is otherwise potential there to be more.
Chloe.

 

[WillowJ]

Hi Chloe. It's possible I don't know things correctly about OHSU. I couldn't get the answers I wanted. If you have a primary care doctor who could check, you could know better.

But I imagine you'd be better off with Montoya. Here is a link to Stanford's ME (CFS) clinic (complete with a link to a speech of Montoya's on CFS): http://chronicfatigue.stanford.edu/ There is said to be a really long wait list, however.

You'd do better to start a new thread, in order to ask for doctor recommendations in CA. This thread will mainly get read by people interested in Oregon.

best,
willowj

 

[Eucalypta]

Hi,

As far as I know nothing is going on at OHSU, what they have or had was indeed the Fibromyalgia clinic that did good work in the early days when dr, Bennet was still practicing medicine. if there would have been a CFS clinic our local CFS/FMS/ME support group would have heard. But as WillowJ already stated the FMS group is part of Rheumatology and they don't make much difference between FMS and CFS.