Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Is it worth the trip/cost to Dr Montoya Stanford Clinic???

Discussion in 'ME/CFS Doctors' started by chickpea, Nov 1, 2016.

  1. JES

    JES Senior Member

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    The reality though is that there is no treatment for CFS/ME that is evidence-based in the sense that it would have significant evidence supporting its use. So the alternative is to offer no treatment or rehabilitation (CBT/GET), which is basically what all patients living in Europe are getting. Even if some of the treatments offered are experimental/off-label, they are still infinitely better than what the rest of the world is getting and I think it's ethically the right thing to do as long as they don't harm the patient. I think it's just important to keep things in perspective.
     
    pattismith and Learner1 like this.
  2. Suffering Succotash

    Suffering Succotash

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    I don't see it that way. There are treatments that are evidence-based, both in the medical literature, and from the informed patient comments here.

    I wrote my statements about Stanford's CFS Clinic in reference to treatments with little statistical or anecdotal success that are prescribed in a rote fashion, COMPARED to more effective treatments (and more options) found elsewhere.

    If you're referring to a standarized, curative protocol, no, there's not that, but there's a great deal of distance between that and "no treatment or rehabilitation."

    My understanding was that Europe was further along in its drug treatments of MECFS (Ampligen and Suramin, for example). I'd trust the French and German healthcare system far more than the US's.
     
  3. JES

    JES Senior Member

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    Not sure what the more effective options are. French and Germans generally get no treatment for CFS/ME. I recently watched a documentary about chronic Lyme disease in France, it is not recognized as a disease and considered a functional disorder. In Germany the situation is a bit better regarding Lyme, but even there treating something like CFS/ME or Lyme is usually up to "alternative clinics". The standard medicine doesn't recognize it. The only European doctor I am aware of that treats CFS/ME is KDM and he will soon retire. One doctor in my country used to treat CFS, but he lost his license due to other doctors complaining that he doesn't follow standardized treatment and risks his patients health. This is what is happening to doctors that attempt to really treat CFS/ME in Europe.
     
    pattismith likes this.
  4. Suffering Succotash

    Suffering Succotash

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    I will respectfully disagree, and ask others, if they are interested, to do their own research into treatment of this illness in Europe. Good luck to you, JES.
     
  5. Sidney

    Sidney Senior Member

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    SF Bay Area, USA
    I
    Everything said in this thread is of personal interest to me! I have been ’with’ (= 20 min visit to PA twice a year) Stanford MECFS clinic for 2 years. I did get tests done on the first visit, and when I asked if they needed to be updated a couple of years later I was told 'oh no, we don’t repeat tests'. I had HSV and EBV.

    However I was prescribed Valcyclovir, 500mg 2x a day, which did not have noticeable bad effects, and I don't get lip sores any more, which is very nice.
    The mecfs gets worse and worse.
    Was also told to have 5k vitamin B12 plus 2-3 k Mfg folate because of MTHFR. I have no idea if that does anything or not. But that's it.

    On a telephone consult in Sept with
    PA I complained again about bad OI and dizziness. She said I should go to the autonomic disease dept. at Stanford. In a couple of days I got a letter from the AD Dept, telling me how my doctor should apply. I jumped through many hoops, for weeks and still have not had an appointment; the thing that particularly puzzles me is that they would not look at the original referral from MOntoya's, dept, virtually down the road.

    The other day I called MECFS to make my next appointment, and I was told the PA I always saw had left: 'So sorry, you should have been informed'. And booked me with Dr. Bonilla.
    So I am interested to hear about Dr. B. Now thinking of cancelling a long expensive trip with hired driver.

    Meanwhile I am planning to move back to England in the autumn - is it going to be even worse? I do have a good rheumatologist here, but she knows nothing about mecfs, although she’s very sympathetic.
    Hard to know what to do.
     
  6. cb2

    cb2 Senior Member

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    I was just listening to a video on another thread about Stanford drs it's this one -montoya has alot better "bedside" manner than Dr. B I feel. but he also mentions they want to try Tofacitinib with their patients as it seems to lessen the cytokines. I wonder why they dont just prescribe it instead of the plaquinel?
    thanks for the info @Suffering Succotash about what exams etc need to happen with taking the plaquinel.
    and your input on the "manipulation" speech i had received. I should have let that be an indicator as to why i felt so bad when i left.. it' like your head is saying one thing ( or the dr's head) but somewhere inside something just doesn't feel "right" therefore creating some inner conflict..ya know? he really scared me when i mentioned the 4000 steps a day .. he immediately when into a story about a women that didnt pace and she had a stroke and it killed her ..they know it was the cfs becasue the brain autopsy saw damage that wasn't related to the stroke but to this illness.
    since that visit i have been DE motivated..to do much of anything anymore. not to mention his discounted the c4a level decreasing so much since i removed alot of molded cabinets from my apartment before was 18000 after taking out cabs c4a went down to 888.. he refused to recognize this ..oh well.. I can say to this.. but for some reason I can't quite get to the "oh well." with regards to my daily steps. I have to find a way to shake it off and get back to my 4 little walks a day.

    https://www.youtube.com/watch?time_continue=3532&v=ADVQvzXwDUg
     
  7. JES

    JES Senior Member

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    I doubt his intention was to scare you. But it's a fact that a lot of patients overdo when they feel better, which then leads to a bigger crash. Many have worsened permanently and never recovered again in this manner. Pacing is all about keeping your activity within your limits, so from pacing point of view there is nothing wrong with doing 4000 steps, if that's what is in your safe window of activity. That's the whole point of pacing - there isn't a preset level of activity decided by a doctor, but is set individually according to what the patient can handle.
     
    Sidney and cb2 like this.
  8. cb2

    cb2 Senior Member

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    JES likes this.

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