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Could Vyvanse reduce some of the ‘brain drain’ occurring in chronic fatigue syndrome?
When people with ME/CFS say they’re not the same person they used to be, it’s not just physical illness they’re talking about it; for many the ‘mental component’; the loss of sharpness, of focus, of the ‘cognitive grace’ they used to experience can be difficult. Losing or altering such intimate parts of who we consider ourselves can be challenging to say the least.
So when something shows up that may reverse some of the ‘brain drain’ it’s interesting. Brain stimulants are used (or at least tried) fairly regularly in chronic fatigue syndrome but few studies have examined their effects. Now a rare placebo-controlled double-blinded trial suggests a new and less addictive type of amphetamine called lisdexamfetamine dimesylate or Vyvanse, could work for some patients.
Amphetamines increase energy levels, enhance concentration and motivation and tend to boost the ‘reward’ centers of the brain. As such they’ve been used legally and illegally to boost performance in many sectors of society including the military, athletes and by college students cramming for exams.
Paul Erdos, one of the greatest mathematicians of the 20th century, claimed he lost a month of work after quitting amphetamines for a month to win a bet, saying “Before, when I looked at a piece of blank paper my mind was filled with ideas. Now all I see is a blank piece of paper.” It’s no wonder, given their cognitive challenges and depleted energy levels, that many people with ME/CFS give them a try…
Problems with physical and psychological dependence, however, have lead amphetamines to be classified as Schedule II drugs which have a high potential for abuse.
Vyvanse
Approved for use in ADHD, Vyvanse is being studied in depression, multiple sclerosis, menopause, excessive daytime sleep, traumatic brain injury, addiction, and binge eating. ADHD may be common in both fibromyalgia and ME/CFS (Saez-Frances et. al. 2012).
Vyvanse affects executive functioning, which studies suggests in impaired in chronic fatigue syndrome. Executive functioning is needed for planning or decision-making (ach!) or when we’re faced with novel situations. If your ability to plan or make decisions took a hit, or if you’ve had more trouble overcoming temptations, or if you feel you’ve become locked into habitual responses since you came down with this disorder, then poor executive decision making may be to blame.
The ME/CFS patients in the study had documented problems with executive functioning and over 60% of them also scored above the threshold for ADHD on the ADHD-RS test.
Less confusion, better decision making, more mental alertness, etc. would be a nice thing to have. Let’s see how they did on Vyvanse.
The Study
The participants took from 30 to 50 to 70 mgs/day of the drug or placebo for six weeks. The Behavior Rating Inventory of Executive Function-Adult ( Brief-A) test was used to measure working memory, planning and organizational ability, emotional control, etc. People with a wide variety of disorders ranging from ADHD to autism to multiple sclerosis to depression have abnormal results on this test.
Results
The results were positive with ME/CFS patients on the drug scoring significantly higher (p<.005) on the Brief-A test. Interestingly, but perhaps not surprisingly, given the growing recognition that poor cognition effects more than the mind, the people on the drug also experienced significantly less fatigue and less pain. The researchers stated…
“the present study demonstrates that (Vyvanse) is safe and well tolerated among participants with both CFS and clinically significant executive functioning deficits. Although it does not appear to be curative, further studies should be undertaken to assess the rate of relapse following cessation of treatment. Observations in the clinic thus far suggest the benefits are sustained only with ongoing treatment.”
The finding that the drug improved cognition and resulted in less fatigue and pain was intriguing. Nobody knows exactly why a psychostimulant should be able to relieve pain but the theory is that improved cognition may be enhance a person’s ability to filter out pain sensations.
This idea that cognitive ‘weakness’ could result in pain signals being magnified or less well controlled, or on the flip side, that increasing one’s cognitive ‘strength’ could enhance one’s ability to reduce pain levels is appealing. Meditators, after all, have been shown to have a higher tolerance to pain probably because they are able to blunt the emotional response to pain, which turns on the fight/flight response, which in turn increases pain levels.
Executive Functioning and the Prefrontal Cortex
The prefrontal cortex (PFC) could be a key player in this scenario. The PFC, which sits in the front, top region of the brain, has long been known as the source of high-level cognitive thought. The PFC, for instance, is supposed to tame the ‘cruder’, more automatic reactions of the fear center of the brain, the amygdala, and keep it from over-reacting. Amygdala activation is tied not just to fear and the activation of the fight/flight response but also playsrole in pain production.
Some evidence suggests the prefrontal cortex may not be working particularly well in chronic fatigue syndrome. If the PFC is too weak to control the amygdala then a drug that could strengthen PFS functioning could quiet down the amygdala and conceivably reduce pain and fatigue levels as well.
Intriguingly, Vyvanse regulates both sympathetic nervous system (noradrenergic) and dopamine activity in the prefrontal cortex. Dopamine levels are typically low in ADD and ADHD (and ME/CFS?) and can effect not just concentration but interestingly enough, another issue in ME/CFS - muscle control and coordination. Could Vyvanse’s effects on the prefrontal cortex be smoothing out an overheated and over-reactive system?
This was a very small study – just 26 people, half of whom got the drug but hopefully we’ll get larger studies in the future.
Side Effects
Vyvanse is a next generation amphetamine which promises fewer side effects than other amphetamines but the list of ‘common’ side effects (>5% in frequency) is a long one and includes dizziness, agitation, nausea, anxiety, diarrhea, weight loss, euphoria, rapid heartbeat and severe side effects can include tachycardia, fever, muscle tremors, seizures, etc. The authors reported few side effects in the small CFS population tested.
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Use of lixdexamfetamine dimesylate in treatment of executive functioning deficits and chronic fatigue syndrome: A double blind, placebo-controlled study. Psychiatry Res. 2012 Oct 9. pii: S0165-1781(12)00503-3. doi: 10.1016/j.psychres.2012.09.007.
Attention-deficit hyperactivity disorder in chronic fatigue syndrome patients. Sáez-Francàs N, Alegre J, Calvo N, Antonio Ramos-Quiroga J, Ruiz E, Hernández-Vara J, Casas M. Psychiatry Res. 2012 May 28
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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
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…)
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.
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.
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.
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…
I believe the stimulant Provigil has also been tried with similar results – the effect appears to be temporary.
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.
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.
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.
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.
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.
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.
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!
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.
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.
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?
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.
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.
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.
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.
Good luck – it looks like Vyvanse is an every couple days at small doses sort of thing..its good to get a boost though.
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.
my brain fog disappeared on a gluten free diet – something to try before going down the drug route?
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.
Correction: Was not diagnosed until ’94. Received disability in ’97.
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)?