mindgonehaywire

What this person did, specifically, was listen to someone like you, and went out to Stony Brook, & FF and his protocol ruined what was left of this person's life. Instead of going to see an ME-knowledgeable doctor who possessed an understanding of what Melvin Ramsay had discovered decades earlier. You and your misinformation are dangerous, and it's not like you haven't been told, but you don't care. It's really too bad you can't held accountable for the damage you do.

Agree 100%.

Fred Friedberg's protocol pushed a friend of mine into Severe ME and that person spent years in a nursing home as a result. At this point we know enough about Ramsay's observations on muscle fatiguability to know that anything involving exercise is absolutely contraindicated in this illness. What you are doing is irresponsible and dangerous. ME patients cannot tolerate exercise. Period, end of story.

Myalgic Encephalomyelitis is not a collection of self-reported subjective symptoms. It never was. Currently the CDC has adopted criteria for which post-exertional malaise is a required symptom. This is measured by 2-day CPET as mentioned elsewhere. I realize that a lot of people don't keep up on this stuff as much as those affected by this illness, but I have to say that it gets a bit tedious having to correct these commonly held, incorrect perceptions about what this illness is. Chronic Fatigue Syndrome is 'tired all the time,' 'fatigue,' sore throats, headaches, muscle & joint pain. Ramsay ME is closer to 'deathlike paralysis.' There's a reason why it was once described as 'atypical polio.' And as has been pointed out elsewhere, while a person suffering from depression is likely to respond positively to exercise, an ME patient responds so negatively that it is to be considered contraindicated, in the strongest possible terms. That's why the Institute of Medicine recommended renaming it to describe exactly what exertion does.

You've seen those links? Have you read them? The third one is a link to the most extensive literature review ever undertaken, and their conclusions were strong enough for them to state flatly in the abstract that this is not psychological or psychiatric.

https://www.ncbi.nlm.nih.gov/pubmed/25695122

I'm left wondering exactly what it will take for people to back off this stuff about this being a psych illness. What evidence exactly is required? The volume of studies indicating objectively measurable biological abnormalities is massive. Many are unreplicated due to longstanding funding issues. But while I think most reasonable people would agree that psych issues and/or stress are capable of causing a number of physical issues, I can't imagine we'll ever see anything that suggests that psych issues could possibly come close to affecting the body in the severe ways that Myalgic Encephalomyelitis does.

https://app.box.com/s/9s4coexxtys5bnz33i6gvqqygu67ex5o

Incorrect. There are going to be studies showing that inflammation in the pipeline soon, but for now there is the Japanese paper from 2014. You know of it, Mr. 'research.' Melvin Ramsay & his colleagues didn't pull this out of thin air and you know it. Plus, the canard of 'it's more appealing because' is stuff and nonsense, much like the fanciful notions of how much damage stress can actually do. You're on the wrong side of this.