Use of stimulants for ME/CFS

MinIreland said:
Ok. So some meds fall into the category 'they work but we don't know how or why'?
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Yes. Unfortunately, I don't have a lot of examples off the top of my head. But for example, they don't really know how SSRIs work for depression (if they actually work at all and it's not placebo).

Wikipedia
Owing to the lack of a widely accepted comprehensive theory of the biology of mood disorders, there is no widely accepted theory of how these changes lead to the mood-elevating and anti-anxiety effects of SSRIs.
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Another example is general anesthesia:
General anesthetics are very potent and effective in transiently inhibiting neuronal communication (6). However, despite their widespread use, the mechanisms of their anesthetic action are not fully understood. Based on the studies published over the last few decades, it appears that there are specific cellular targets through which general anesthetics act (7). In general, enhancement of inhibitory synaptic transmission and/or inhibition of excitatory synaptic transmission have been reported. [...]
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forestglip said:
Yes. Unfortunately, I don't have a lot of examples off the top of my head.
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Aha! It is easier being a rheumatologist. Drugs that have been used for RA without knowing why they work:

Gold
Penicillamine
Chloroquine
Sulphasalazine
Aspirin until John Vane
Azathioprine
Methotrexate
Cyclophosphamide
Leflunomide

In fact everything until TNF and Il-6 inhibitors and rituximab in the 1990s.
 
Trish said:
I'm not. Makes my heart race and miss beats, and keeps me awake at night.
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Three years without it was torture. 100mg after waking stops me from going back to bed.
It won’t work for everyone, and I don’t start dictating what others should do just based on my own experience!

I think it’s fine if the BF thing helped him, or he thinks it did. Not any of us are where he was. I doubt the NHS will start offering BF and as Peter T says, it’s too difficult a protocol for the average pwME to manage without significant assistance and care.
However, bringing in Ron Davis as the authority who says the biology checks out is a step too far.

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Snow Leopard said:
What are people's experiences with NDRIs, eg Methylphenidate and Burpropion
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I don't know about NDRI, but I do take CNS stimulants. When I was sicker, stimulants used to bring me some comfort by partially relieving aches and lifting mood but did not improve functioning much. These days, I get huge boost when I'm under the weather: I practically become indefatigable. But it seems to be much less effective when I'm in PEM.
 
Trying 25mg modafinil now, and it makes a huge difference. Coffee effect only lasts for a few hours, modafinil takes 2 hours to kick in but lasts the whole day. Helps alot with brainfog and fatigue, clears the head, think clearer etc.

RHR and BP go up unfortunately to like 120/80 85-90 on 25mg.

I am going to try 12.5mg dose instead.

Problem is I am worried about tolerance + overdoing it.

I think people here are taking way too much. Im considering 12.5mg which is 1/8th of a 100mg pill as 25mg has a big effect on me already.
 
I recently started Ritalin for ADHD (long overdue), and it has majorly improved my orthostatic intolerance and made it take longer to trigger cognitive PEM.

I became severe-ish due to pregnancy and was struggling to stand long enough to put some food on a plate, and now my OI is much closer to where it was when unambiguously moderate. The increased standing time doesn’t trigger PEM. I wonder if the OI change is due to blood vessel constriction. I had improved OI on coffee in the past, but Ritalin is much more effective.

I always felt like I got cognitive PEM more easily than others, and I now wonder if it was because tasks were more demanding for me due to ADHD. I can read academic papers in my field now, which I haven’t been able to do for years.

I never majorly overdid it on coffee, so I’m optimistic that I’ll be able to learn to pace appropriately despite the drug. Overall super helpful so far! I am not sure stimulants are a great idea for ME alone, but if you have ADHD, really struggle with OI and/or cognitive fatigue, and have your pacing under control, I recommend giving it a try.
 
Verity said:
I recently started Ritalin for ADHD (long overdue), and it has majorly improved my orthostatic intolerance and made it take longer to trigger cognitive PEM.

I became severe-ish due to pregnancy and was struggling to stand long enough to put some food on a plate, and now my OI is much closer to where it was when unambiguously moderate. The increased standing time doesn’t trigger PEM. I wonder if the OI change is due to blood vessel constriction. I had improved OI on coffee in the past, but Ritalin is much more effective.
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Bupropion (norepinephrine and dopamine reuptake inhibitor - though it has much stronger noradrenergic than dopaminergic effects) worked really well for my orthostatic intolerance too (it largely eliminated my acute symptoms - lightheadedness/losing vision - on standing). Helped modestly with fatigue too - and I noticed improvement in fatigue/alertness the first day I started it.
 
nataliezzz said:
Bupropion (norepinephrine and dopamine reuptake inhibitor - though it has much stronger noradrenergic than dopaminergic effects) worked really well for my orthostatic intolerance too (it largely eliminated my acute symptoms - lightheadedness/losing vision - on standing). Helped modestly with fatigue too - and I noticed improvement in fatigue/alertness the first day I started it.
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Interesting! Maybe someone smarter than me can say why this might be.
 
Verity said:
Interesting! Maybe someone smarter than me can say why this might be.
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I imagine you're on the right track with vasoconstriction... reducing blood pooling and increasing venous return?

I've also heard people say that norepinephrine reuptake inhibitors (e.g. SNRIs, bupropion, classic stimulants) made their OI worse, but I imagine it's because it's exacerbating compensatory hyperadrenergic responses (as in hyperPOTS) in those cases? This wasn't the case for me even though I did develop hyperPOTS symptoms over time (but those would fluctuate - often seemed to be primarily on days where I overexerted and had the "running on adrenaline" feeling).
 
Verity said:
Overall super helpful so far! I am not sure stimulants are a great idea for ME alone, but if you have ADHD, really struggle with OI and/or cognitive fatigue, and have your pacing under control, I recommend giving it a try.
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I'm really happy for you Verity! I have a similar experience with stimulants, and have also wondered if my ADHD has something to do with my ME/CFS symptoms being particularly bad on the cognitive end.

I tried to look into the deal with stimulants and blood flow to the brain once but didn't make it very far. I ran into similar issues we have with trying to figure out if there's anything going on with cerebral blood flow in ME/CFS -- few studies, needing to figure out if the measurement technique they're using is established or experimental etc. It may be worth another attempt.
 
ScoutB said:
I'm really happy for you Verity! I have a similar experience with stimulants, and have also wondered if my ADHD has something to do with my ME/CFS symptoms being particularly bad on the cognitive end.

I tried to look into the deal with stimulants and blood flow to the brain once but didn't make it very far. I ran into similar issues we have with trying to figure out if there's anything going on with cerebral blood flow in ME/CFS -- few studies, needing to figure out if the measurement technique they're using is established or experimental etc. It may be worth another attempt.
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Interesting that you had the same experience. There is such a dramatic change for me with no real change in physical PEM threshold that I assume ADHD was making things worse. Not sure how else to explain it.
 
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