The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
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Disappointing Mayo Clinic Treatment

Discussion in 'ME/CFS Doctors' started by Quemist, Feb 10, 2017.

  1. Quemist

    Quemist

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    Hello, all--

    I recently was admitted to the Mayo Clinic in Jacksonville, FL and was subsequently diagnosed with CFS and Fibromyalgia. I didn't feel as though I really fell into diagnostic criteria for Fibro; I'm not in any significant pain and I wasn't extensively tender at their diagnostic tender points. Ruled out small-fiber neuropathy, MS and lupus by a series of tests. Their solution was a two-day treatment program.

    Essentially, they put us in groups of ten for a two-day cognitive behavioral therapy program that essentially marketed GET. I was astounded that the person that ran the program had very little information about ME vs CFS. I had raised my hand to ask a question about ME and said "Oh yeah, I read that term they call it- what is it that they call it now? Encephalo-something? That sounds scary- so let's not say it!" I'm a chemist and I read the literature quite religiously-- I did not take this comment very lightly and I think it is okay to keep up with the latest medical literature regarding treatment options and prognosis.

    I feel very comfortable with the care I received and the attention to detail. Unfortunately, I was very surprised with how behind the Mayo Clinic is about their knowledge of ME/CFS. Their program was focused on deep breathing exercises, meditiation, and discontinuing narcotic pain medications. As for my medication, I had my family with me during the visit, who interpreted the message as "stop taking all medication" so I've subsequently titrated off of 300mg of venlafaxine, 2mg of clonazepam, and 70mg of Vyvanse. I did feel as though the clonazepam was helping me but I'm glad to know what it feels like to not take any medication.

    I see that Stanford and Vanderbilt are actively doing clinical trials. I am interested in joining one of those to maybe cross paths with a more knowledgeable doctor that might be able to tell me more about medication management.

    tl;dr-- The Mayo Clinic was surprisingly behind in their knowledge of ME/CFS.
     
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Don't do GET. Check out the wealth of info here - they know more than the Mayo Clinic, clearly.
     
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  3. Quemist

    Quemist

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    Oh, absolutely. I was very critical of this doctor that suggested so much of GET. I am doing physical therapy and so far that has been a very good thing with very promising outcomes- not overly tired, I used to get terrible lactic acid pains after exercise but so far it seems to be working.
    They were selling the central sensitization theory HARD. I can see how that is relevant but I'm not entirely sure if I buy into that theory as much as they were trying to push it on me.
     
  4. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Please be careful. The effects of exercise can be delayed - very. People can do themselves a lot of permanent damage. Maybe check out this recent thread:

    http://forums.phoenixrising.me/index.php?threads/hi-all.49003/#post-807132
     
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  5. charles shepherd

    charles shepherd Senior Member

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    ladycatlover, Roy S, Orla and 8 others like this.
  6. halcyon

    halcyon Senior Member

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    This has been going on for a bit. Hopefully the word gets out there so more people don't waste their time going there.
     
  7. mrquasar

    mrquasar Senior Member

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    In my opinion, you're wasting your time and money unless you go to an ME/CFS specialist. Unfortunately, there are only a dozen or so in the entire U.S. (so I've read). Dr. Klimas in FL would be a great one to go to. She runs very specific immune tests to help determine if an ME/CFS diagnosis is appropriate. She also has has experience with treatments specific to ME/CFS.

    I'm fortunate in that I live close to another ME/CFS specialist who I will be seeing very soon. The irony is that I also live next to one of the largest medical centers in the world, with hundreds of top-notch immunologists in my city. But not one, NOT ONE, lists chronic fatigue syndrome as one of their specialties. It's such an absurd situation we have to navigate.

    Best of luck to you.
     
  8. Sidereal

    Sidereal Senior Member

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    When it comes to ME/CFS and FM, the Mayo clinic has a terrible reputation. Great if you have a 'normal' illness.

    I had a look at some of their research output on POTS a few years ago. It was full of psychobabble.
     
  9. xrayspex

    xrayspex Senior Member

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    I have heard different definitions of "central sensitization" (CS) and I have chronic pain, from a couple different mechanisms I believe. My current PT ( I want her for an expert to consult with and we are just doing light things, she gets my need to be in control of it and baby step things) who I like, and I pay for, private, told me that CS caused by spinal cord damage---that sounds pretty validating to me and physical/medical. I do think my cervical spine (and cord) was damaged and that it caused a lot of the chronic problems I have, although I think there could have been a virus I was handling before that (like I know I have EBV, also a past recurring likely enterovirus when younger, there could have been something in remission that got kicked into chronic)----is that an insulting thing actually, for someone to suggest that part of my pain is CS?

    that sounds completely lame what you went thru tho---altho I do think that doing mindfulness and cbt can be helpful especially when all else failing-- because we live in an insane world with ridiculously inadequate medical care---so doing therapeutic stuff for myself doesn't make me think I am nuts, but pampering. An analogy would be like someone who lives with a raging alcoholic and they decide to get emotional support and go to al-anon; if the systems won't help us we best do some deep breathing or something....like George on Seinfeld yelling "Serenity now!!!!!!!" lol

    and they are suggesting self help stuff to people for all kinds of illnesses nowadays, they found out that many illnesses are connected to adverse life events for whatever reasons--there is that ACEs questionnaire --the more adverse events you have been thru the more likely you are going to have some health problems. But what is insulting about what they did with you is it doesn't sound like they were also offering medical testing and treatments, just behavioral ones. And her comment about ME being a "scary" term is probably part of her training, you know, that we are just scaring ourselves reading these big words on the internet because we are hypochondriacs, so she is trying to get you not to worry your pretty little head like that.

    that said, most mainstream medical interventions I have had over the years hurt me , I think they are part of the reason I am compromised, so at the end of the day for me, getting my head and my breath and my nutrition etc in a good place is all I got anyway, so in that way they are right....but for the wrong reasons

    note--and when I say "CBT" that could mean telling yourself that you are not imagining things and that medical school attracts a lot of people that are pretty hearty and can't relate to what we are going thru, and some of them have a certain amount of disdain as their own self protection to deny their inadequate tools of a broken system they work in and thus it is them and not us and not to take it personally etc
     
    Last edited: Feb 10, 2017
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  10. Uk125250

    Uk125250

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    It only makes things worse when a world renowned hospital says to use GET and CBT. I don't know how many times I've been told, "You need to do more". If they felt what I do (I'm sure many of you, as well), they would never, ever say this. Whatever is going on with me can't be overcome by trying to do more.
     
    Last edited: Feb 11, 2017
  11. xrayspex

    xrayspex Senior Member

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    I agree and it is crazy making and hurtful when people who are supposed to be helping, in a "healthcare" system make things worse with ignorance or rude comments.

    Fibromyalgia and CFS and Chronic pain can all be different beasts though and have overlaps. there can be different etiologies for similar symptoms for different folks.......this got me thinking about central sensitization which i hadn't researched on line before. Besides possible inflammation from probable CFS I do also have a cervical spine situation that besides possibly being this central sensitization concept could also be because of a structural situation that some surgeons I have seen think would only be remediated with surgery. NOt knowing if the main cause of my disability is the spine dysfunction, CFS/ME/AI or central sensitization....well it stresses me out and makes it hard to make a decision about the surgery. What if its all of the above.............sigh

    anyway, the way i figure it, what have I got to lose by doing mindfulness etc I do it in spite of the fact that some ignorant practitioners might think CFS is all a psychological problem. thing is even people with cancer or heart disease might benefit from square breathing and David Burns CBT etc we might as well use all the tools at our disposal just to make ourselves as comfortable as we can in the meantime....in spite of places like Mayo.
    This book explains it really well and the author clearly has something like ME http://www.tonibernhard.com/SummaryHTBS.html
    How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers
    by Toni Bernhard (Goodreads Author), Sylvia Boorstein (Forward)
    4.21 · Rating Details · 1,140 Ratings · 172 Reviews
    This life-affirming, instructive, and thoroughly inspiring book is a must-read for anyone who is--or who might one day be--sick. And it can also be the perfect gift of guidance, encouragement, and uplifting inspiration to family, friends, and loved ones struggling with the many terrifying or disheartening life changes that come so close on the heels of a diagnosis of a chr ...more
     
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  12. ebethc

    ebethc Senior Member

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    @Quemist - thanks for the feedback... the Mayo clinic has a terrible reputation in the community, but I haven't heard anything in a while, so it's good to get an update.... My family is in the midwest and thinks that the Mayo clinic is the be all and end all... they don't think I'm being aggressive enough or responsible in taking care of myself... so frustrating! I might just print out your post and mail it to my mother ;-) The Lancet / GET therapy study ("PACE trial") has been completely discredited. It was all over the internet last year... If I were you & had spent all that money & time for their quackery, I'd write a letter telling them they should refund my money! Here's one of the articles: https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/

    the Open Medicine Institute ("OMI" on this board) clinic in Mountain View, CA has an excellent reputation..They focus on viruses and gut (SIBO tests, etc.) and mast cell disorders to some degree. I ran out of money before I could go there, but it would be my first stop if I still had good insurance (first visit is ~$585, then you go back in 2 wks to review tests at another ~$585 appointment... You pay for the appts out of your pocket then submit superbill to insurance yourself to be re-imbursed - or not. the lab tests accept insurance, thank God.). No miracles, but very good care and they share research w Dr Ron Davis, a geneticist @ Stanford who's aggressively researching a cure. He's created a board of advisors w something like 3 Nobel winners....His son is extremely sick w CFS, so he's very motivated... As a scientist, you may be interested in learning more about him & his work, which has zeroed in on metabolites. Ask around the board and to see if it's a fit... All these doctors have a playbook, and I think you have to find someone who's playbook fits your version of CFS... It's not a problem w a one size fits all solution by any means...So, w my recommendation comes a "Disclaimer" that I came to the conclusion that they know what they're doing - and might help me in particular - by asking a lot of ppl on this board specific questions via DM.
    http://stanmed.stanford.edu/2016spring/the-puzzle-solver.html
    http://med.stanford.edu/sgtc/donation.html
    http://forums.phoenixrising.me/inde...kaufman-at-the-open-medicine-institute.32107/

    I don't recommend Montoya's CFS clinic @ Stanford... He doesn't see patients anymore, but has a bunch of nurse practitioners who have memorized his playbook... the initial appointment w one of them is ~$950 (at least they have the decency to accept insurance at that rate!). Their focus is on viruses, so you'll get antivirals (based on which viruses you have) and maybe some anti-inflammatories... IMO, their treatment seems extremely narrow from everything I've read and based on answers to the questions that I've posed to patients..In the infectious disease clinic @ Stanford, and separate from Ron Davis' work:
    http://med.stanford.edu/chronicfatiguesyndrome.html

    From what I know, Dr Klimas and Dr Lucinda Bateman in Utah seem to have thriving CFS practices (I know Bateman has a long waiting list). I don't know a ton about either, but those are some ppl to inquire about...
     
  13. Mary

    Mary Senior Member

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  14. Woolie

    Woolie Gone now, hope to see you all again soon somewhere

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    I cannot begin to explain what absolute BS this theory is. It is pseudoscientific clap-trap. A new way of spinning the idea of your pain being generated by your mind - but with suitable neurobabble to make it sound less psychological! The evidence its based on is very scant too. Studies that show very, small, short-lived CNS mediated pain amplification effects following the experience of acute pain. Vague studies showing reduced or increased resting state activation or activation following pain stimulation in various brain areas that might have something to do with pain (but in reality, probably do many other things we don't yet understand). Nothing that has the power to explain chronic pain, especially not of a relapsing-remitting nature.

    The rest of the theory is just the usual somatisation/ pain catastrophisation stuff rebranded in neural terms.

    How is it that our experience of pain/malaise varies so substantially with activity, etc? If its truly central, and we have pain receptors/ pain processing regions constantly "switched on" or set to a low threshold, then the pain should be constant. Here is where the central sensitisation theorists just wave their hands and say "the brain is complicated". To me, all those various features point to a more peripheral culprit. One that varies in intensity over time, probably inflammatory in nature.

    If there is such a thing as central sensitisation syndrome, you would probably need significant and very selective damage to the brain to get it. Or maybe really severe psychosis, enough to lead to major, enduring distortions in the way you process bodily sensations. Or perhaps amputation (but then it wouldn't feel anything like FM or CFS, it would be much more localised).
     
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  15. Snow Leopard

    Snow Leopard Hibernating

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    Sadly your experience echos many others who have gone through the same experience.

    The Mayo Clinic may be leaders in other fields, but their ignorance towards our illness (and lack of intellectual curiosity to discover the underlying causes) is outstanding.

    To which I say to those people: Your hypothesis is potentially interesting, but is not yet useful until you have a concrete empirical model.

    Most demonstrated "sensitisation" is local and associated with nerve damage - the sensitisation occurs when the nerve system tries to regenerate and basically is mistakenly crosswired to things it shouldn't be (example: the various syndromes associated with optic neuritis). This is at least part of the explanation for those ghost signals during amputation - the remainder of the nerve is receiving signals it shouldn't be and the brain is interpreting it as issues with the limb. https://www.ncbi.nlm.nih.gov/pubmed/24769187
     
    Last edited: Feb 12, 2017
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  16. keenly

    keenly

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    Most doctors know nothing about nutrition.
     
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  17. Mary

    Mary Senior Member

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    The Mayo Clinic has been recommending these "treatments" for years and years. It has to go beyond ignorance and be willful disregard of science. Unfortunately they are one of the most prestigious medical institutions in the U.S. One can only wonder who is paying them off, probably do not have to wonder too hard.

    In any event, I'm going to write to them in an attempt to educate them. I know they will write back right away, "Dear Mary, Thank you so much for bringing this to our attention. We are sorry for any harm we have caused. We will immediately bring our practices into line with the latest science and IOM guidelines, etc. Sincerely, Mayo Clinic" :lol:

    Seriously, I am going to write to them. It will make a me feel a tiny bit useful ;):sluggish::cat:
     
  18. Quemist

    Quemist

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    Yeah, I'm feeling very skeptical. Can you tell me about the delayed effects? For instance, now I actually feel a lot better- but I know it may only be temporary and I don't want to go to feeling worse.
     
  19. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Sorry - I'm not well at present, but there is a wide range of effects, basically the same as ME symptoms. They vary with individuals.
     
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  20. Quemist

    Quemist

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    I'm just getting to my wits end with frustration. My family went with me for the treatment and it's totally backfired because now they're trying to get me to do meditation and exercise as my main therapy....
    they want me to go back for a three week therapy that focuses on exercise and cbt. I'm feeling pretty hopeless
     

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