Interview with Dr. David Systrom (May 5, 2020) on exercise intolerance

[JES]

I was not able to determine how severe or mild their ME was. This is very important. Mona, in the interview, was able to walk 3 miles, even before taking mestinon. Also, I note that Dr Systrom feels the side effects are not that severe. Yet, many patients have been unable to use the drug due to the severe side effects. Also, on his treatment slide, I note the use of anti depressants and Ritalin. Dr. Teitelbaum used these decades ago, and saline has been used decades ago. Ritilin just stimulates the system, and a horrific crash can and likely will ensue--for the core problem has not been addressed. Dr Systom's work looks very thorough, and impressive, and what he says was stated by CFS doctors decades ago (perhaps not proved in a lab). I am very worried that the treatment may not really work for many severe patients. I would dearly like to know how sick these patients were before taking mestinon, were they bedridden, or what. What would he propose for the bedridden, I wonder.

The problem is that a certain number of ME/CFS patients are going to react (badly) to most drugs. I'd imagine for a bedbound patient, drug tolerance will be much less than for e.g. someone mild or moderate. I noticed over the past five years that my tolerance to various foods and supplements have got significantly worse while I'm still quite functioning comparatively speaking. It's worth to note that for mestinon, the dosage used by some POTS doctors is much less, around 10 mg per dose, compared to treatment of myasthenia gravis (50+ mg).

The bigger issue with mestinon is that it's not very effective at least in my experience. The first time I got the opportunity to try mestinon last year, I thought for a moment that it had cured my OI issues. This effected lasted a couple of days after which there was no longer any benefit and it actually seemed to mess up my autonomic nervous system more in the long run. IMO, treatment with neurotransmitter blockers is never going to solve this disease, I think it's a bit analogous to serotonin reuptake inhibition in depression. However, I think the price and safety of this drug makes it a good candidate, but I'm afraid it will be largely wasted effort.

 

[Diwi9]

The first time I got the opportunity to try mestinon last year, I thought for a moment that it had cured my OI issues. This effected lasted a couple of days after which there was no longer any benefit and it actually seemed to mess up my autonomic nervous system more in the long run.

I think this is where I'm at. It helped at first, but ended up with side effects that lessen the benefit. The best rescue for me remains a beta blocker and laying down. That said, my POTS has flares...I can be doing fine and then BOOM...heart rate sky rockets.

Dr. Systrom's work is just the opening of one part of the line of inquiry. I'm glad he's interested, but as @Learner1 mentioned, each of us dealing with ME/CFS have different profiles and the condition is bigger than just "the plumbing." For example, why do I feel horrible in the mornings, but can do laundry at 11:00 pm...and why do my muscles feel like I was in a car accident a day after simple activity...and why can I wake up super early one day feeling great and deteriorate to a hard slumber within two hours later and wake up feeling terrible?

 

[Learner1]

It's worth to note that for mestinon, the dosage used by some POTS doctors is much less, around 10 mg per dose, compared to treatment of myasthenia gravis (50+ mg).

My doctor started me on 10mg of pyridostigmine, but moved me up to 90mg. Some patients are on over 200mg.

The bigger issue with mestinon is that it's not very effective at least in my experience

Perhaps the dose was too low?

treatment with neurotransmitter blockers is never going to solve this disease,

Mestinon increases the amount of acetylcholine available, it doesn't block it.

 

[raghav]

Mestinon is not new to ME/CFS. Dr. Jacob Teitelbaum in his book From Fatigued to Fantastic recommends it.

 

[Martin aka paused||M.E.]

Do I get it right that the start dose is 30 mg 3 times a day and then after two weeks 180 mg every morning in a slow-release pill?
As far as I remember 30 mg per day was the maximum dose for myasthenia gravis?!?!

 

[Rebeccare]

Do I get it right that the start dose is 30 mg 3 times a day and then after two weeks 180 mg every morning in a slow-release pill?
As far as I remember 30 mg per day was the maximum dose for myasthenia gravis?!?!

The dosage is increased much more slowly than that. I started off on 30 mg 3 times a day, and I took that for a month. Then the dose was increased to 60 mg 3 times a day, and I stayed on that for another month. Then I was started on the 180 mg slow-release pill, which I actually tolerated a little bit better.

But I've read about people who start at a dose of 15mg per day and increase even more slowly than I did (check out this post). I think that starting at a low dose and increasing slowly is supposed to reduce the risk of side effects (mainly nausea and aches).

 

[Judee]

would like to see future multi-discipline ME/CFS clinical centers

Hopefully some in the Midwest and Great Lakes areas. All the specialists seem to be on the coasts and too far for most of us Midwesterners to travel to.