arrow32 Comments
  1. Marco
    Dec 29 - 6:58 am

    Very interesting Cort.

    You don’t happen to know if, in the research that found ADHD in ME/CFS patients, if they stated which type?

    Hyperactive, inattentive or mixed?

    Good luck with the new site BTW

    • Cort Johnson
      Dec 29 - 1:20 pm

      Thanks Marco…

      I am dimly aware that there are different types of ADHD :) (are there different types of every disorder?) but I don’t recollect them differentiating them out. (I could be wrong…)

      • Brenda Brown Elliott
        Jul 05 - 1:23 pm

        I noticed this blog from back in December and wanted to mention that I have a son on the vyvanse for adult add/schizo/bi-polar and a grandson on it for add. This article makes me wonder if my genes are the ones handed down to the boys. Not that it makes a whole lot of difference but it also could, too, I suppose.

  2. Maija Haavisto
    Dec 29 - 10:17 am

    I don’t think the improved pain has anything to do with improved cognition. It is well known that dopaminergic drugs (both stimulants and non-stimulants) can help cognition, fatigue and pain. Pain can be improved even if cognition is not.

    I’m not convinced lisdexamphetamine is better than normal dexamphetamine. It appears to be just a way to override patent protection. This can have its good sides, too: patent-protected drugs are much more likely to be used in studies.

    • York Gorzolla
      Dec 30 - 1:36 am

      Maija,
      I agree with your statement completely, based on my own experience. I was diagnosed with ME/CFS about 4 years ago, allow I had been suffering the symptoms much longer. I have been on several different meds. for pain and found a combination that works most of the time. However, my fatigue and “brain fog” never got any better. The Dr. finally agreed on trying stimulants a year ago (after sleeping through most of two years), ritalin first and then dexamphetamine. And the Dex. has been life saver, without any serious side affects. It’s a generic drug which is very cheap, so I can see the pharmaceutical companies trying to find something patented to try to sale patients.

  3. Nancy H
    Dec 29 - 4:01 pm

    I agree with Maija, the reduced pain seems related to the dopamine aspect that these drugs address. I was prescribed Vyvanse for CFS and ADD – Inattentive Type. It did indeed help with mental clarity and focus, helping the PFC function bette; however I personally experienced:
    – Extreme Insomnia (perhaps due to chemical sensitivity and poor metabolizer, I believe it stays active in my system longer than a healthy metabolizer)
    – Mental Exhaustion – After about 8 hours, I experienced a different kind of fatigue. My brain felt wiped out and exhausted as if it had been on HIGH all day, this was very different than “normal” CFS fatigue.
    – After several days of use (smallest dose, only once a day, in the a.m.), the positive cognitive effect first experienced no longer was produced, replaced by increased malaise and nausea.
    I now limit the use to once a month on a day that I need to accomplish a series of mental tasks.
    These are my own symptoms and side effects only, every body is affected differently of course. Just sharing to add to the understanding as one diagnosed with both CFS and ADD.

    • Cort Johnson
      Dec 29 - 4:46 pm

      Thanks Nancy….I have similar experiences with all sorts of medications; things that work seem to trigger an opposite response after a time. It’s as if the energy boost releases something negative for me…

      • Kelly Latta
        Jan 02 - 3:00 pm

        I believe the stimulant Provigil has also been tried with similar results – the effect appears to be temporary.

  4. Dawn R
    Dec 30 - 11:42 pm

    Sorry, this isn’t the right area maybe to ask this but I’m new to all this and your site…I have reason to believe I have fibromyalgia but doctor after doctor is resisting any kind of diagnosis (primary care passes me to rheumatologists and rheumatologists say they “don’t treat fibro”–huh??!) and they just keep passing me around….I’ve taken some things into my own hands, doing my own research and I came across your site today. I am curious to know what has happened to Dr. Sam Yue and his studies on relaxin and the Vitalaxin product? There seems to be some substantial evidence about the use of relaxin (maybe to help women more specifically but now it seems to have fully disappeared from the market and no way to get it at all. I can say that my symptoms fully disappeared during my last pregnancy….so I can speak to the power of relaxin, and now I want some! (and having more kids is out of the question…..although almost sounds good if I could feel better!) Thank you for any insight you have.

    • Cort Johnson
      Dec 31 - 10:19 pm

      Hi…your story of not getting good care for Fibro is unfortunately pretty common. I don’t know anything about Hue..and relaxin but some people who are pretty up on drugs commented on this thread; maybe they can help out.

    • Mark Hansen
      Jan 03 - 12:26 pm

      Dawn: I did find some info on the hormone Relaxin here: http://www.ncbi.nlm.nih.gov/pubmed/17458501 You have to register for pubmed I believe, but I don’t believe there is any fee.

  5. Enid
    Dec 31 - 3:06 pm

    Interesting thoughts Cort, just wish the underlying mechanisms were fully mapped and understood. From early days of thinking capacity almost zero (lost recognitions too) – even now sudden what I think we call crashes appear regularly, though memory restored.

    • Cort Johnson
      Dec 31 - 3:23 pm

      Yes, indeed..I think these drugs are like mallets where we need stiletto’s…drugs that directly get to the underlying mechanisms. I’m hoping that ME/CFS shares some of the underlying mechanisms in the brain with other disorders and that we’ll get some help understanding and treating it as research in the other disorders proceeds.

      Glad to hear some memory ‘restorage’ has occurred.

      I’ll have a cognition overview coming up after the New Year.

  6. Rich Wendel
    Dec 31 - 7:47 pm

    I’d like to add information about another amphetamine offshoot called Focalin. With 20 years of major CFS issues I opted to try this out. Note that Vyvance is very similar in effect but not as strong (mg for mg). My MD now has multiple CFS patients on Focalin at varying doses (about 30 mg-120mg per day). Yes this absolutely stimulates Dopamine production, but does not exceed a certain level, unlike the killer Meth or Cocaine drugs. Dopamine is key to ALL pleasure centers so it’s best not being able to abuse. There is no hangover or penalty from moderate ‘energy’ over use. Again, this is how I respond.
    There is potential for amphetamine-like side effects/reactions/ dependance/mental changes; be very cautious and aware on these ADHD drugs for any changes.

    My benefits on drug: Focalin ‘cures’ all depression, just like that. The Dopamine sense of ‘feel good’ took it’s place, overnight. It also provides for false sense of energy. Note that any sense of energy is just plain excellent for me. It is also motivating in the same regard. For some reason the drug also acts as a substantial pain reliever and I don’t know why. So I quit the opiates, a really big deal, same with ineffective anti depressants.

    This is a very brief overview of my response to Focalin, a Vyvance related drug.

    • Cort Johnson
      Dec 31 - 8:03 pm

      Thanks so much Rich for providing your experience. Glad Focalin has helped and how about your ability to get off opioids…that’s really something…Thanks!

  7. Rich Wendel
    Dec 31 - 8:25 pm

    PS to above:

    A pharmacist and an industry insider have described where these new generation ADHD drugs came from. This is close, anyway:

    Amphetamine molecule has four distinct components. They took away the three that had most of the addictive issues and side effects and other undesirable features, and here we are with the fourth, albeit re-named and tweaked a bit in different directions.

  8. Kathryn Stephens
    Jan 02 - 3:31 pm

    If my brain energy is working correctly right now, the first thing that comes to my mind is that ALL energy uses mitochondria, right? So, I would think that as the drug does it’s work, it is also using up mitos, thus it could be a problem down the road while on them.

    I wonder if we use these meds, could we push our bodies and/or brains beyond what is good for us. Unless we know what is causing an individual’s case of CFS (or, even if they are properly diagnosed), this type of med could do much harm.

  9. Mark Hansen
    Jan 03 - 12:19 pm

    I too am concerned about any drug proposed to treat just one or several symptoms without a detailed knowledge of just what impact that drug might have on the systemic issues we all have…if you mess with something here will it make something there worse over time? If as I suspect that we have low level active brain infections due to a breakdown in the blood/brain barrier system…what are the consequences of using any stimulant?

  10. lisa kishkon
    Jan 07 - 8:41 pm

    i take vyvanse now. (M.E. Diagnosed 1986)
    while it allows me to stay awake and get a couple of things done/able to keep appts, i get extremely fatigued (excertional malaise) when taken on too regular a basis. no more than 2 or 3 days in a row. even then, i seem to have real trouble physically the day after. total muscle and brain depletion.
    i’m going to have to be more aware of whether or not my pain is reduced before i comment on that aspect.
    i don’t think the answer to my M.E. is in this pill because it really does beat the crap out of me. had to lower initial dosage cuz i was way too jittery and paranoid and it was low dosage to start with.
    on the other hand, i’m thankful to have a doctor that came up with the idea to take this otherwise i’d be pretty much bedbound 100% of the time.
    it is NOT covered by insurance and is pricey (brain fog’s bad right now or i might be able to tell you exactly how much here in canada and what dosage i started at and what dosae i take now). i will check if anyone really wants to know.

    • Cort Johnson
      Jan 07 - 8:49 pm

      I guess there are no easy answers. I have a similar experience on a much milder stimulant – caffeine…A couple of sips and I’m flying and its great, I concentrate really well, my energy is good, my libido even goes up and at the end I get jittery, my gut starts cramping up…and then am depleted the next day…That’s all from a couple of drinks of coffee.

    • Amy
      Feb 06 - 5:45 am

      Just a note to say that Vyvanse is covered by my extended medical in Canada, so maybe it will be for others, too. I haven’t started taking it yet. I am one of those people who is just about bedbound 90% of the time, housebound almost completely. My pain, fatigue and weakness from FM/CFS is constant and intense. I am really hoping Vyvanse will help me but I’m extremely sensitive to medication and I’ve tried so many medications and modalities with no success. I feel like I have to try this because I have virtually no quality of life and I was so full of energy and life before I was struck down by this illness. I just want some quality of life.

  11. lisa kishkon
    Jan 07 - 8:43 pm

    btw, thanks for this article. perhaps it might help get insurance company to pay for considering it’s specifically mentioned in study. I will also print out for dr. Thank you.

    • Cort Johnson
      Jan 07 - 8:50 pm

      Good luck – it looks like Vyvanse is an every couple days at small doses sort of thing..its good to get a boost though.

  12. John Gabor
    Jan 07 - 10:43 pm

    I’ve been taking modifinil now for nearly 10 months. It is a stimulant that is not supposed to be addictive. The scientific community still is unsure exactly how it works. At first 1/2 a dose was enough. Now I usually take a full dose in the morning when I know I am going to need it. I found I cannot take it for more than 3 days at a time now without its effectiveness getting worse and without a high risk of crashing. Would that be the same with vyvanse? Modifinil has helped me do things I just could not do without it. If vyvanse can do the same or better without addictive risk I would be interested in trying it.

    • Teresa Thibodoux
      Feb 06 - 11:34 pm

      I have MS and ADHD (just recently diagnosed). I had taken provigil for several years and LOVED it, but I did increase over time from 50 mg to 300mg, but then backed down to 200mg. It seemed that it wasn’t working as well as before, but I did still stay awake and wasn’t wiped out by mid-day. But then we had to change insurance companies at work and the new company would not pay for it for MS. When I was discussing this with my primary physician and mentioned that I had tested at home for ADHD(score at 70), she suggested vyvanse. It has been amazing! Initially, when I was on 20mg, it would work great throughout the day, but then I would CRASH at 10:30, and there had better be a bed right beside me, because I was down. Now I am on 40mg and although I don’t have the surge of energy that I had on provigil, I do not have any problems staying awake during the day or going to sleep at night. I feel more “even” on vyvanse than I did on provigil and much less “chatty”. I also really looked at my bloodwork and noticed where i was within range on some of the tests, but just barely. So I started taking B12 and B6 and that has also increased my energy level and decreased/ eliminated the brain fog. I can tell the difference between just taking vyvanse and taking it with additional b12 and b6. I was on a multi vitamin (and still do take one), but the additional b vitamins have helped a lot The side affect on vyvanse though (which is why I was on Internet tonight) has been increase in acne (I’m 45 and have never had a problem with acne), and it suddenly dawned on me, that I looked like I was on drugs (which i am, but legally) with all the sores. I did find several posts discussing acne and the combination oily and dry skin and what you can do to treat.
      For me the vyvanse has been a lifesaver. With insurance and a printable discount, it currently is only $30 a month for me vs. $650 a month for generic provigil. I have also found that if I really need to get something done on a particular day, I can skip the vyvanse and take 100 mg of the provigil (new insurance again and this one will pay for provigil) and it seems to “work” again. So now, for me, given the choice between the two med’s, I am sticking with Vyvanse, and just taking the provigil a couple of times a month.

      • Cort Johnson
        Feb 07 - 10:25 am

        Thanks for relating your experience and congratulations on finding something that helps.

  13. tatt
    Jan 26 - 5:42 am

    my brain fog disappeared on a gluten free diet – something to try before going down the drug route?

  14. Theresa Schroeder
    Feb 13 - 10:43 pm

    Have not tried a gluten free diet as too much work. Am barely able to prepare meals for myself now (I live alone.) I do feel better when can eat mostly fresh, lightly cooked veggies, but that may just be my own system.

    BTW, I have had CFS symptoms, then later FM symptoms, since ’76 but became much worse in ’87. Finally diagnosed in ’84;unable to work since ’92. Have tried almost everything but like most of you here am extremely sensitive to meds and have many weird reactions.

    Over the years the pain, much of the time, has decreased.(This is relative.) But the fatigue has gotten worse. I can concentrate better, to the extent that I can read a light-weight novel. But my memory for names and specific words is getting much worse. I have never taken any kind of stimulant except the caffeine in Excedrin. Oddly enough, the caffeine (or something) in coffee wires me totally, like it does Cort. Go figure.

    Anyway, I am desperate for some energy..I would rather have pain, at least up to a point :>) can function with pain but not, obviously, without energy. But am afraid to take any of these amphetamine-type drugs. Also, “scattered” and racing thoughts are worse than ever, even though I have been meditating consistently for the past 7 yrs. Meditating does/did help but is getting more difficult. Anyone else have this issue?

    Sorry to gabble on…Wishing all of you the best.

    Thank you, Cort, for this new newsletter. I hope to be able to keep up with the CFS/ME news better.

  15. Theresa Schroeder
    Feb 13 - 10:45 pm

    Correction: Was not diagnosed until ’94. Received disability in ’97.

  16. Lynne Levitan
    Feb 23 - 11:33 pm

    I’m afraid that Vynase (lixdexamfetamine) is just another amphetamine. The “selling point” (besides that it is patentable) is that it is a prodrug. That means, in order for it to work, it must be first converted (by an enzyme in red blood cells) to dextroamphetamine. Basically, it is dextroamphetamine with a lysine molecule attached. The rationale for making such a molecule is to make the drug less “abusable.” I suppose that is because you are less likely to get a “rush” from taking a large dose as there is a delay while the drug is converted to active form. It also apparently makes it last longer (all this from Wikipedia). That it has been studied in ME/CFS is interesting, but I don’t think we should think this drug is any more specific to ME/CFS than any other amphetamine-like stimulant.

    My personal concern and experience is that use of stimulants makes me use more energy than I can afford to in the long run. Occasional use is helpful when needed in a tight spot.

    My opinion is that if you want to try amphetamine-type stimulants, why not try one of the old, cheaper generic ones (plain dextro-amphetamine, amphetamine salts or methylphenidate or one of the extended-release versions of such)?

  17. […] approach the ԁeeper stages of ѕleep Sleep deprivation еxists when we аre not getting the sleep getting sleep we need. This varies from person to pеrson, the average аdult requires six to nine hours рer […]

  18. adhd man
    Oct 12 - 5:33 pm

    Thank you for this great article. I see it started quite a bit of a discussion.
    Could we treat ADHD without poping pills ? I think we can.

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