Looking for info on stimulants in CFS

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16
If you wish to try them go ahead, some ME/CFS patients have responded to the strangest things, but what i have said in this thread is still technically correct

There's only one recent trial evaluating their effectiveness and the results were ambiguous - improvements vs placebo but not to a statistically significant amount (much like antivirals, for instance). So at this point we can't really say what their effectiveness is, apart from anecdotal reports, which are mixed. If it is found that PWME are not producing enough of certain neurotransmitters (due to gut issues, for instance, per Lipkin) then certain patients will probably benefit from stimulants, as will others from antidepressants for instance, as a symptomatic treatment. I can see why people are hesitant to recommend these sorts of drugs, because their use has historically been bound up with bad, unscientific ideas about ME, but if they're prescribed with the understanding that they don't treat the underlying pathology then they can probably be quite useful.
 

Alvin2

The good news is patients don't die the bad news..
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3,087
There's only one recent trial evaluating their effectiveness and the results were ambiguous - improvements vs placebo but not to a statistically significant amount (much like antivirals, for instance). So at this point we can't really say what their effectiveness is, apart from anecdotal reports, which are mixed. If it is found that PWME are not producing enough of certain neurotransmitters (due to gut issues, for instance, per Lipkin) then certain patients will probably benefit from stimulants, as will others from antidepressants for instance, as a symptomatic treatment. I can see why people are hesitant to recommend these sorts of drugs, because their use has historically been bound up with bad, unscientific ideas about ME, but if they're prescribed with the understanding that they don't treat the underlying pathology then they can probably be quite useful.
The ineffectiveness of certain drugs is not because of bad beliefs like PACE, its because they don't work when they have been tried. Please don't conflate the two.
As i said different people react differently so you may get lucky but in general Modafinil and Armodafinil have not been very helpful for ME/CFS, but they are relatively safer to try if you can get them prescribed for you
Dexedrine works better for more people (again not universal) but its more risky, harder to get (controlled), has more side effects and more long term harm.
These two drugs work very differently, if you have narcolepsy they are the first line drugs you would be given and usually work quite well for that condition which is caused by destruction of orexin producing neurons that maintain wakefulness (and not the repressed emotional trauma that was believed 20 years ago). Most doctors i have dealt with prefer Modafinil/Armodafinil for these patients because of its better safety profile, reduced tolerance effects and less controlled status (and less long term harm to the patient's bodies).
 
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Messages
16
The ineffectiveness of certain drugs is not because of bad beliefs like PACE, its because they don't work when they have been tried. Please don't conflate the two.
As i said different people react differently so you may get lucky but in general Modafinil and Armodafinil have not been very helpful for ME/CFS, but they are relatively safer to try if you can get them prescribed for you
Dexedrine works better for more people (again not universal) but its more risky, harder to get (controlled), has more side effects and more long term harm.
These two drugs work very differently, if you have narcolepsy they are the first line drugs you would be given and usually work quite well. Most doctors i have dealt with prefer Modafinil/Armodafinil for these patients because of its better safety profile, reduced tolerance effects and less controlled status (and less long term harm to the patient's bodies).

I am not conflating anything, the trials of ADs are mixed, simply saying they don't work, particularly when many patients use them (for sleep primarily), seems to me not very helpful. We don't have much evidence about whether modafinil is helpful for PWME either, so again, it seems odd to just say it is not very helpful. The differences between dexamphetamine/methylphenidate and modafinil are widely overstated anyway - they are more similar in action than was thought when modafinil was first introduced. The longitudinal studies of stimulant use for patients with ADD etc. usually show positive long term effects, not harm. If you can avoid PEM (which is easy after awhile) I don't see why it would be different in ME.
 

Alvin2

The good news is patients don't die the bad news..
Messages
3,087
I am not conflating anything, the trials of ADs are mixed, simply saying they don't work, particularly when many patients use them (for sleep primarily), seems to me not very helpful. We don't have much evidence about whether modafinil is helpful for PWME either, so again, it seems odd to just say it is not very helpful. The differences between dexamphetamine/methylphenidate and modafinil are widely overstated anyway - they are more similar in action than was thought when modafinil was first introduced. The longitudinal studies of stimulant use for patients with ADD etc. usually show positive long term effects, not harm. If you can avoid PEM (which is easy after awhile) I don't see why it would be different in ME.
Instead of getting into long arguments with you over this feel free to try them.
 
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