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ADHD Drugs for Chronic Fatigue Syndrome - How Well Do They Work?

Discussion in 'General ME/CFS News' started by Sly Saint, Nov 24, 2017.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    "
    Could drugs meant for hyperactive children be an effective treatment for chronically fatigued adults? As illogical as it sounds, they might be.

    Some doctors prescribe ADD/ADHD drugs for their patients with chronic fatigue syndrome (ME/CFS) and say they've seen positive results. We have a growing body of evidence to back this up, but more research is needed.

    These drugs are classified as neurostimulants, which means that they stimulate brain activity.


    They're used in ADD/ADHD because, paradoxically, they have a calming affect on ADD/ADHD brains. Given that, it makes more sense that they'd be helpful in a condition defined by fatigue."


    https://www.verywell.com/adhd-drugs-for-chronic-fatigue-syndrome-716030
     
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  2. Valentijn

    Valentijn Moderator Staff Member

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    If only we had a condition defined by fatigue :rolleyes: I think the author is being extremely irresponsible to promote the use of stimulants, since the evidence for their use in ME/CFS is absolute junk.
     
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  3. MeSci

    MeSci Senior Member (Voting Rights)

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    I used amphetamines in my 20s, about 20 years before getting ME, and became severely addicted and very ill. I was injecting them. I lost my job, almost lost my mind, and it took 3 attempts to get off them. I am thus extremely wary of them!
     
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  4. Squeezy

    Squeezy Senior Member (Voting Rights)

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    My neurologist has great success using stimulants with people who have MS to help with the fatigue that comes with that illness. But when I tried Modafanil, I ended up alert and feeling more capable, but without the energy necessary to follow through.

    Crash.
     
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  5. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    and yet they are still being prescribed..........
     
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  6. zzz

    zzz Senior Member (Voting Rights)

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    The author is a layperson who is not a specialist in ME/CFS. Her choice of words here is regrettable. However, in every definition of ME or ME/CFS, fatigue is a requirement. So it stands to reason that medications that can reduce fatigue may be useful in treating ME/CFS. But of course it would be good to have some evidence for this.
    I am sure that there is junk evidence for the use of stimulants in ME/CFS, just as there is junk evidence for just about every treatment for ME/CFS. This does not mean that there is no good evidence, or that the treatment does not work in at least some people. The only treatment I know of that works in the vast majority of PWME is pacing. Every other treatment works in a minority of people. It is far too common for people to dismiss treatments because they don't work in most PWME, including them. But if we refused to use any treatment that didn't work for most PWME, we would be left only with pacing.

    It is also important to remember here that absence of evidence does not mean evidence of absence. This is another fundamental principle that is forgotten far too often in the discussion of various treatments for ME/CFS. I did IV ganciclovir at great cost back in 2001 when the only evidence for its efficacy that I could find was about a dozen anecdotal reports I found on the Internet. The treatment was totally transformative for me. It was only a number of years later that Valcyte became a recognized effective treatment for many PWME.

    The article referenced by @Sly Saint does have some useful references in it; the most useful I found was in the following paragraph:
    No, it's far from overwhelming, but for those 20%, it can make a big difference. The 20% figure is similar to what Dr. Jay Goldstein found during his practice, where he treated over 20,000 PWME. From his chapter entitled "Stimulants", on page 183 of Tuning the Brain:
    With these figures, it is not surprising that most PWME report that stimulants are useless for them, or even harmful, as that is exactly what Dr. Goldstein found. But for other people, stimulants can be of modest to great benefit. We have at least one post in our Members Only section from a member describing how stimulants helped a bit, and there are many reports from members of other ME/CFS forums of their personal benefit from taking stimulants. For me, I have derived a huge benefit from modafinil (Provigil) over the course of my illness. From another post I made here:
    So yes, these drugs do not work for the majority of PWME. But for the minority that they do, they can make an incredible difference, as they did with me.
    Yes, @MeSci, I would agree with you completely; it is very good to be wary of these drugs. These are dangerous drugs if used improperly, and even more so in PWME, where dosing has to be done very carefully to avoid crashes, and activity has to be watched very carefully to avoid PEM.
    This is a common reaction to modafinil, and it clearly demonstrates that it's not the right drug for you. For people for whom modafinil works, though, such as myself, in addition to the alert and capable feeling, I had lots of extra energy that I could use without crashing.
     
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  7. Valentijn

    Valentijn Moderator Staff Member

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    Patients were selected with Fukuda criteria, and patients on the drug significantly worsened on SF36 role physical and role emotional subscales. The authors tried to cover that up by using medians instead of means for only those two outcomes. Nearly 30 comparisons were made, with no apparent corrections for the increased likelihood of a false positive outcome.

    It's complete junk :p There's no basis to assume that even 20% were helped, and it looks like any possible cognitive improvement was offset with physical and emotional deterioration.
     
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  8. zzz

    zzz Senior Member (Voting Rights)

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    For others who wish to follow this discussion, versions of the full paper can be found here and here. A version of the crucial Table 1 that may be more readable can be found here.
    This is standard practice for the great majority of ME/CFS studies; most of the rest use the Oxford criteria. Do you think that the only studies of ME/CFS that we should consider valid are those that use CCC or ICC? That would eliminate almost all the work in this field.
    How do you come to this conclusion? Although the use of median rather than mean is not explained, the median for the role physical (physical role limitations) is zero for baseline, placebo, and treatment groups. I gather that the numbers after the zero are the range, in which case the treatment group clearly has the smallest range by far. This would be the opposite of "significantly worsened".

    As for role emotional (emotional role limitation), the treatment group clearly did worse than baseline or placebo. But was this a significant result? The P values for treatment over baseline and treatment over placebo were .93 and .11 respectively - values that are considered not statistically significant.

    It's also very important to point out that role physical and role emotional are simply two subscales of the larger "Physical factor" and "Mental factor" scales. In these overall scales, the treatment group outperformed both baseline and placebo. The statistical significance was low (P = .028 and P = .076, respectively), but still higher than that of the role physical and role emotional subscales.

    It seems to me, @Valentijn, that you are cherry-picking your data here. As the paper points out, only physical vitality (which improved with treatment) had a statistically significant difference over placebo (P = .025) in the secondary endpoint subscales. I can see nothing in the paper to support your claim that "patients on the drug significantly worsened on SF36 role physical and role emotional subscales." And overall, the data for the secondary endpoints do not seem to be very significant. It is the data in the primary endpoints that shows real statistical significance.
    This statement ignores four very important points:
    • The primary endpoints that showed statistical significance of treatment over placebo were not just cognitive improvement, but the entire range of primary endpoints measured, including VAS (Visual Analogue Scale) fatigue and CIS (Checklist Individual Strength) total score, as well as the latter's subscales, which include bodily fatigue, concentration, motivation, activity, and VAS concentration. So these encompass both physical and mental aspects.
    • There is no evidence of "physical and emotional deterioration"; you have cited one statistically insignificant subscale in each of the physical and mental factors to reach this conclusion, without explaining how you got there.
    • You have, by your statement, used the statistically insignificant results of role-physical and role-emotional subscales as a proxy for physical and emotional health. Not only is that not what they mean, but there are specific subscales for general health (physical) and mental health, and these had a statistically insignificant increase over placebo. The same is true for the depression and anxiety subscales.
    • You have given the same weight to statistically insignificant subscales as to the primary endpoints, which have high statistical significance.
    From the paper:
    The 20% figure is an average of the results for improvement in fatigue and concentration.
    It seems to me that you have failed to make any case here.
     
    Last edited: Nov 24, 2017
  9. Valentijn

    Valentijn Moderator Staff Member

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    Crappy criteria being standard doesn't make it less crappy. It just makes it a bigger problem. Two people diagnosed using Fukuda can have completely different symptoms, so patients selected with it can't be assumed to have the same disease, and outcomes can't be safely extrapolated to ME/CFS patients.

    The treatment group has the smallest range shown because the inter-quartile values are closest to zero. The range was 0-18.8 at baseline, 0-25 after placebo, and 0-3.4 after treatment. That means a lot more people were scoring 0 or 5 after treatment than at baseline.

    The reason it doesn't look significant is because the authors are dodgy bastards who switched to using the median instead of the mean. They did that precisely because patients did significantly worse on those measurements, and the researchers didn't want to report it. Otherwise they would have reported the mean just like they did for two dozen or more other outcome measurements, including other subscales on the same questionnaire. There is no rational excuse for them to have used the median in this situation.
     
  10. Squeezy

    Squeezy Senior Member (Voting Rights)

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    I'm too brain dead to read your substantive discussion, but I think it's worth anyone who has serious fatigue alongside their ME, trying stimulants. Carefully. Very carefully.

    The beauty of them is that you can take a low dose of Ritalin once, and even know from that if it is helpful or not. No waiting a few weeks to see an effect.

    Then, if all is fine, take a bit more. And stop immediately if desired.

    I can't take it because of the nature of my migraines, but I would if I could, on days when I need to drive. Just to sharpen my mind for safety. Not to expect miracles of normality.

    The caveats my children's neurologist (one takes for a sleep disorder plus Fibromyalgia, the other for ADD), had were about heart disorders in the family and Tourette's Syndrome.

    DO NOT take stimulants if you have not had an ECG. Ritalin definitely exacerbates tics and Tourette's syndrome, in my family's experience.

    @zzz I wish I'd had your experience with Modafanil! But something is broken or missing in my energy production, that isn't in yours, I suppose.
     
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  11. MErmaid

    MErmaid Senior Member (Voting Rights)

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    I have been taking Phentermine for about two years, and am pleased with the results. It does not cure ME, I don’t think anything does (and I doubt in my lifetime I will see a one pill cure wonder), but it adds to the quality to my life. It’s not the only Rx I take, but it’s the cheapest one.

    It relatively inexpensive, and gives me more energy and improves my vision.

    Because it’s an inexpensive generic, there is no incentive for a Pharm to get involved paying millions for an FDA Phase 3 double-blinded placebo controlled trial. So I wouldn’t hold my breathe for any substantial trials here.

    But what works for me, may or may not work for anyone else.

    I have not tried Ritalin, but know someone who did. This person initially felt better, but after a few months saw no improvement, thus stopped taking it.
     
    Last edited: Nov 25, 2017
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  12. Angel27

    Angel27 New Member

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    I have just started Phentermine today, prescribed by my PCP for weight loss (I gained about 60 lbs. after quitting smoking last year), and am hopeful after reading research and your post.

    I have tried Ritalin, probably 15 - 20 years ago, but I got totally spaced out on it and could not function.
     
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  13. Barry

    Barry Senior Member (Voting Rights)

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    Fatigue is one of the body's safety warning mechanisms, presumably for when physical function approaches an energy-draw limit. In the same sort of way that pain indicates the risk of potential bodily harm. If you swig a hot drink straight after the dentist has numbed your mouth, the safety warning mechanism is deactivated, and you risk being harmed. I would think a similar situation may exist if the fatigue mechanism is deactivated, or at least attenuated.
     
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  14. Webdog

    Webdog Senior Member (Voting Rights)

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    Last edited: Dec 17, 2017 at 9:59 PM
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  15. Webdog

    Webdog Senior Member (Voting Rights)

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    Here's what the CDC currently says (spacing added for readability):
    My personal experience with prescription Ritalin/Adderall/Vyvanse supports this: stimulants provide a short term boost in functioning, while worsening the push/crash cycle.

    Vyvanse has the fewest side effects for me, and I keep low dose (10mg) on hand for emergencies when I must function (roughly once a month). However, I always plan ahead to have extra recovery time after taking a stimulant.
     
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  16. oldtimer

    oldtimer New Member

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    I've tried just about everything over the years, including dexamphetamine. Being super sensitive to many drugs, particularly those that can affect neurotransmitters, I took half a 5mg tablet. After half an hour I had turned into a zombie and couldn't function at all. Very disappointing! So many times I have tried something and it has the exact opposite effect of what you would expect.
     
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  17. TigerLilea

    TigerLilea Senior Member (Voting Rights)

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    Our condition is defined by fatigue.
     
  18. TigerLilea

    TigerLilea Senior Member (Voting Rights)

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    One of my previous jackass doctors put me on Ritalin and I barely slept for a week. I was so hyper and couldn't relax at all. Plus my stomach hurt some much I couldn't stand having tight clothing touching me. Never again!
     
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  19. Webdog

    Webdog Senior Member (Voting Rights)

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    Is it always?

    The SEID (Institute of Medicine/National Academy of Medicine) diagnostic criteria emphasize functional impairment over fatigue.

     

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