If only we had a condition defined by fatigue
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.
the evidence for their use in ME/CFS is absolute junk.
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:
A study in
The American Journal of Medicine on methylphenidate for ME/CFS demonstrated a significant improvement in about twenty percent of participants. That's hardly an overwhelming endorsement.
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:
Only about 25 percent of [ME/CFS] patients will have a good reaction to stimulants. Otherwise, they will have no reaction at all, even to very high doses, or stimulants will not only surprisingly calm them but will paradoxically make them sleepy or exacerbate their symptoms in general.
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:
Another possibility is Provigil (also used by Dr. Goldstein), which though technically is not a stimulant, has many of the properties of one. For me, Provigil powered an 8 1/2 year gradual recovery, getting me from about a 30% level of functionality to an 80% level. Unfortunately, Provigil, like all other known treatments, does not address the root cause of ME/CFS, and although I was gradually feeling better during this time, my fundamental condition was worsening. Finally, I had a major crash where I became sensitized to Provigil and many other drugs. I was able to reverse the sensitivity somewhat, and I am now taking a reduced dose of Provigil.
One of the wonderful qualities I have found about Provigil, which continues to this day, is that if I have a day where I need to function normally for a whole day, I simply take a higher than usual dose of Provigil. Within a few hours, I feel completely, 100% normal, and this can continue for another 12 or 16 hours. The only drawback is that when it's time to go to sleep, I am wide awake, and I have to take extra medication to get to sleep. But I don't crash the following day; in fact, the following day is generally better than average.
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.
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!
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.
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.
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.
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.
