Health Rising blog post, by Cort Johnson, 17 June 2016: A mestinon miracle: vagus nerve stimulating drug helps long time ME/CFS patient exercise.

She’d had chronic fatigue syndrome (ME/CFS) for twenty-eight years and has left no stone unturned in her attempts to get well. She’s traveled widely and seen some of the best ME/CFS doctors in the world. Despite being connected to the hilt in the ME/CFS, her results have been all too familiar; her health has improved a bit but she, a former fitness buff, has never been able to exercise.

She’d had a really tough year. Multiple surgeries including a gall bladder removal, multiple emergency room visits and a mysterious drug reaction had laid her as low as she had ever been.

Many people might have given up after that (and several decades of mostly fruitless searching) but last year there she was in a pulmonary specialist’s office with a catheter in her arm working away on an exercise test.

There she was, almost 30 years later, doing an exercise test in an attempt to figure what had gone wrong.

Her goal – to determine if the latest hot topic in ME/CFS – mitochondrial issues – were it for her. It turned out that they weren’t – her mitochondria appeared to be working fine.  Nor, despite the sarcoidosis she had, was her lung capacity diminished – she still had the lungs of an athlete.

Her autonomic nervous system, however, was  decidedly off. Her heart was beating way too fast and her blood was pooling in her legs instead of getting pushed back up to her heart, leaving her heart without much blood to pump. Her doctor, David Systrom at Brigham’s Women’s Hospital in Boston,  turned to her and suggested Mestinon (pyridostigmine bromide). It’s helped, he said, with fatigue in patients like you have.

Mestinon turned out to be something of a miracle for her.  She took too much at first – had some rather drastic side-effects but then ratcheted it down and then back up again.

Now she’s at the upper limit prescribed for people with myasthenia gravis (180 mgs/day).  She hasn’t been able to exercise without paying for it for almost three decades but it was clear within a couple of weeks that something was different. She described suddenly feeling like “going for a run” – a feeling she hadn’t had in decades. She was tired afterwards but the dreaded PEM never materialized.

Then she went cross-country skiing – one of the most energy intensive exercises there is.  She’s now running 3 plus miles a couple of days a week and working out in the gym. She has one side effect that’s apparently caused by the medication; after exercise sometimes she feels lightheaded.

Other symptoms improved. She does take sleeping pills but now they seem to be working better and she was able to cut down her sleep by an hour or two a night. She’s able to work full days. Much of her alcohol intolerance has disappeared. Her very high resting heart rate has returned to normal.  She’s not healthy but she’s improved enormously and she can exercise (!).

Imagine her shock when she learned that the drug that has done so much for her has been around for decades. It’s even prescribed for the orthostatic intolerance she has, but until Dr Systrom no one had ever mentioned it.

Read more about mestinon, Dr David Systrom and his research into exercise intolerance