Question

I have had PoTS and ME/CFS for over 10 years and now have Long Covid as well – if that’s even possible as perhaps they are the same thing anyway? My question is about a drug called Modafinil as I have been offered a trial of this treatment from my PoTS consultant to help with my fatigue. I have looked online and can’t find a lot regarding its use in patients with ME/CFS. Please could you point me in the right direction for any research on this or anyone with ME/CFS that has any experience of taking it. One of my main concerns is that it will create a false energy high, so that I will want to do more, then I will end up with worse PEM and crashing. Another potential problem is that I already have mental-health issues as some of the side-effects are mental-health related.

Answer

Modafinil (trade name = Provigil) is a drug that stimulates the nervous system. It is mainly used in the treatment of narcolepsy – a condition that causes episodes of severe daytime sleepiness and fatigue and which has some overlaps with ME/ CFS. It is also sometimes used in the treatment of sleep disorders such as sleep apnoea and there is some preliminary research evidence that it could improve cognitive function.

In relation to ME/CFS there have been two case reports. However, it’s difficult to draw any firm conclusions from these results. The outcomes are summarised and referenced in the Treatment section of the ME Association Clinical and Research Guide. Modafinil would need to be used with considerable care as it has a number of side-effects that overlap with ME/CFS symptoms – clumsiness, dizziness and fainting, headaches, and, insomnia. It can also cause a rare but serious skin condition and psychiatric symptoms.

In view of lack of robust evidence on safety and efficacy in ME/CFS from robust clinical trials, and the possible safety concerns, Modafinil was not a drug that the NICE guideline committee on ME/CFS decided could be recommended for general use. However, this does not exclude its use if a physician (preferably one with experience in prescribing Modafinil) believes that it could be of help in an individual case. There is some research evidence that it can be of use in PoTS from this clinical trial:

Hemodynamic Profiles and Tolerability of Modafinil in the Treatment of POTS: a randomized placebo-controlled trial | 2015

Conclusion: Modafinil did not significantly worsen standing HR or acute orthostatic symptoms in POTS patients compared to placebo, and improved upright blood pressure. Therefore, modafinil could be tested as a potential treatment for the cognitive impairment in POTS.

Research reference: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4239166

PoTS UK also has useful information in relation to Modafinil and other treatments for PoTS:

“Modafinil is a stimulant normally used in some sleep disorders, and may improve alertness and decrease mental clouding in those with PoTS. Modafinil may increase tachycardia in some patients but this effect is not usually very severe.”

PoTS UK reference: https://www.potsuk.org/managingpots/medication-2

Feedback

Please let us know if you have been prescribed modafinil for either ME/CFS or PoTs and whether it was effective: Feedback@meassociation.org.uk