Stanford Chronic Fatigue Clinic. Has anyone gone?

Discussion in 'General Discussion' started by Chfrazzle, Aug 20, 2018.

  1. Chfrazzle

    Chfrazzle Member

    I am strongly considering making an appointment for my young adult daughter with the Chronic Fatigue Clinic at Stanford. I am not expecting anything miraculous but hoping they might stumble across something not picked up on before, as in another health issue that might be adding to her symptoms. I see a lot of discussion about Dr. Montoya and his research but not much on the clinic itself. Does anyone have any personal knowledge or opinions? Any idea how extensive their testing is? Can your mitochondrial function be tested?
    Not dead yet! likes this.
  2. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I've talked to a couple of people who were not impressed. One person flew from Europe to see Montoya; did not feel it was worth it.

    I strongly recommend that you head over to see Dr. Kaufman/Chheda in Moutain View. Kaufman gets great reviews; he was one of just two ME/CFS doctors to attend the Dysautonomia International Conference, he's curious and trying new things and does a boatload of testing. He's up on MCAS, POTS and autoimmune testing (uses the German Celltrend panel) and is working on creating an IV for MCAS patients. Someone who;s seeing him just told me he got her IVIG approved on Medicare. :)

    Kaufman is also meeting with Ron Davis's group

    Plus he seems to be a really nice guy! :)
    Not dead yet! likes this.
  3. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Center for Complex Diseases -
  4. Chfrazzle

    Chfrazzle Member

    Thank you Cort, I really appreciate your candidness. I will definitely check them out.
    Thanks again
  5. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Good luck! I think Kaufman and Chheda are doing pretty cutting edge stuff. They would be at the top of my list of practitioners to see.

    I just saw Dr. Pridgen, by the way, and have started his protocol. So far, so good :)
    Not dead yet! likes this.
  6. Likaloha

    Likaloha Member

    BTW... Just went to the site for Center for complex diseases and it says they are closed.. Too bad!!!!
  7. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I hope that means they're closed right now. I haven't heard anything about them actually being closed. I actually called them up in search of an interview last week.
  8. Likaloha

    Likaloha Member

    Maybe just the site is down.. Sounds like somewhere I might do some research on
  9. Pgrovetom

    Pgrovetom Member

    I would not recommend. Because Stanford is a formal high caliber University medical facility, the minimum one should expect is a thorough workup to rule out the many causes of CFS like symptoms. I suspect that a significant percentage of people with problems and symptoms that resemble Cfs Me is quite high. It's also likely they have seen numerous doctors and have never received a thoughtful and carefully considered differential diagnosis.

    So when you walk in the door for your initial visit, most people should expect the doctor to have reviewed past testing and diagnosis and perform a thorough workup and testing that fits the history with a good dose of skepticism. Stanford once had a good list of tests for conditions they expected first time patients to have done as a minimum. That should be checked and discussed.

    So my experience did not even vaguely resemble what I just listed as the bare minimum. I had a long discussion which seemed like winging it. The only testing ordered was for a number of different herpes virus pcr which is well known to be a VERY low sensitivity test. Herpes viruses rarely live in the blood and if it was there, the odds a pcr would find it is quite low. These pcr tests were negative. I'm not even sure how these tests were relevant. I was a bit baffled and upset. I expected I would finally be getting a REAL thoughtful workup and I got a few useless herpes pcr tests. That was it. A long drive to Stanford with optimism I'm finally going to get good help. My bubble was burst.

    I was diagnosed with CFS and given a prescription for valcyte and sent on my way. I took it for year with no changes except its enormous cost.

    I've been to Stanford, UCSF, Mayo Clinic, John's Hopkins and many local and alternative integrative doctors and I would put my Stanford Cfs me clinic experience as among the worst when considering quality thorough medicine.Not sure why but I would not bother unless you have some very specific need and know Stanford can provide it. If you think you may have cfs/me and are looking for a thorough review, workup and top quality diagnosis effort you can count on...forget it.

    You can tell I was badly disappointed. I was. Good luck. That was 3 years ago and maybe better and I was there on a bad day.

    I'm curious if anyone else was disappointed by the lack of diagnostic effort, ease of getting a cfs/me diagnosis and a very expensive antiviral without any serious proven effectiveness except one small study at Stanford years back which to my knowledge was never confirmed. It does suggest some people thought to have cfs me may actually have a herpes viral condition where valcyte may help. But assuming it will work for everyone that presents with the very common symptoms of cfs seems wrong. And in my case, my herpes virus pcr tests were negative which if you believed these tests, I wasn't one of this small subset. There are other tests to try and confirm this herpes subset that could have been included before the diagnosis and Valcyte ordeal.

    I don't mean to be so negative. I suspect many out there know the feeling of hope and optimism and Stanfords reputation boosts them and then followed by a letdown. When I go to a regular doctor, I don't have such high expectations. I suspect getting mediocre care at a place with Stanfords reputation has made me more cynical. Maybe not fair so my warning is don't expect any more than a regular competant doctor who is in a hurry and not showing much personal commitment.

    God luck.
    Last edited: Feb 26, 2019
    Ian Mills likes this.
  10. Chfrazzle

    Chfrazzle Member

    No, they are not closed. Had an appt there the end of Jan and still in contact with them.
  11. Chfrazzle

    Chfrazzle Member

    Thank you for taking the time to post your experience. Very helpful.
  12. jasonbaird208

    jasonbaird208 New Member

    Coming in a little. My wife has been sick for about 5 years
    My wife has been sick for about 5 years. 2 years ago we determined she had CFS. (After 18 different Drs) It started with Chronic Epstein Barr Virus that our family Drs NP lucked into finding.
    Short version. Family Dr put in for a referral to Stanford CFS/ME clinic. First visit was good. Blood texts confirmed EBV inactive. ZVZ inactive and CMV active. Thus causing CFS. Valcyte for the past year. Not helping at all and the cost is astronomical. We have an appointment this Thursday at Stanford again. Mind you we live in Idaho. This will be our last time going for sure. I’ve spent hundreds of hours doing research and trying different supplements and vitamins. Also the Mediterranean diet actually does wonders. Took her off the Valcyte a week ago and she’s up and moving so we shall see.
    My point is don’t waste your time or money on Stanford. Not to mention they’re not taking patients at this time. You’re more than welcome to take ours. Good luck and hopefully she’s doing better.