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.
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.
I'm not sure exactly which point you're shooting for, my point is more about the provable altered metabolomics discovered over the past year and a half by Dr. Ian Lipkin, et al. Example paper from this summer:: https://www.nature.com/articles/s41598-018-28477-9
It looks like that article you quote is referencing "Metabolic profiling reveals anomalous energy metabolism and oxidative stress pathways in chronic fatigue syndrome patients". However if you look at Tomas' study, they were not able to replicate that study:
"Contrary to previous literature [15, 28] which suggested that abnormalities in PBMC ATP levels may be caused by glycolysis, results from the glycolysis stress test showed that glycolysis in CFS patients does not differ significantly from that of the non-disease cohort. "
So you need to be careful that the studies you're looking at have actually been replicated. In this case it wasn't replicated.
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.
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.
> You've seen those links? Have you read them? The third one is a link to the most extensive literature review ever undertaken,
I did read those links. The first two conspicuously did not make a claim about a physiological origin, and the third gave a "report" link that led to a paywall.
Thanks! This new link was super useful, and is probably the strongest evidence available on this thread. Do you think that the CDC would endorse the claim about physiological origins in this report? (It's from 2015.) It's notable that the report introduces yet another name and set of defining criteria. As far as I can tell this report does not yet reflect an expert consensus, but I've updated my opinions significantly.
> I'm left wondering exactly what it will take for people to back off this stuff about this being a psych illness.
Can we agree that, given the social and economic implications, there is a huge demand from patients for doctors to issue a diagnosis for various collections of self-report symptoms (not just CFS/ME/SEID)? And that this leads to the potential for bias in the system? Are you not unsettled by the fact that the report you link admits that replication and validity are still big open problems?
I'm generally very worried with the anger and political bent to this thread (though your comments in particular have been very productive and are much appreciated). It just seems more productive try to convince skeptics based on the merits of the evidence, and admit when there remain significant disagreement and uncertainty among experts.
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.
The Japanese study [1] looked at immune (microgial) over-activation in the brain, which is different from actual inflammation of the brain or spinal cord (encephalitis or myelitis). Stress, anxiety and depression from psychosocial stressors are already known to cause neuroinflammation from microglial over-activation [2].
It is a little confusing that they use the term neuroinflammation for something that isn't really inflammation.
