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What a clear and thoughtful explanation. Thank you for taking the time. So, they need to pick a better word. Of course, we should be used to words that can be misused or...have onerous meanings and baggage with regard to us. Again, I appreciate you taking the time to share that.

I'd know if I were hyperventilating. And if I can learn how to breathe "correctly", isn't that at least a little suggestive that I learned how to breathe incorrectly? Perhaps not, but somehow I always thought this was a tad victim blaming, even if inadvertent.

I'm sorry, but I have difficulty buying into that.

Unfortunately, both were well-regarded in ME/CFS circles as good guys.

This may or may not be relevant, but my low CO2 was attributed to hyperventilation by at least two prominent ME/CFS researchers. Both offered me the services of a breathing coach. I declined.

@Sid, I know what you are trying to say here, and I agree up to a point. However, what about those researchers/clinicians whose acts of good faith are finding results that support whatever team they happen to be behind? There are those who believe this is the greater truth. You see this same...

Too many are not. I eviscerated my psych write-up precisely, in part, because the psych kept writing that my intelligence was "normal" - even as that psych kept repeating the mistake of underestimating my premorbid IQ by almost 20 pts. Do I think this was deliberate? I'm not really sure. I...

I also worry about its cavalier misuse, and not-so-subtle deterioration into a marketing ploy, or worse, propaganda. Today, when I read or hear EBM, I sometimes wonder more about medical politics than proof.

My personal experience with these is they can be inaccurate and subject to bias. For example, if I recall correctly, premorbid intelligence estimates are accompanied with confidence levels, eg, 90%. Well a 90% confidence is just plainly terrible. To make a long story short, in my n=1 story, two...

EBM is similar to peer-reviewed, at least in terms of broad expectations for excellence. I have a daughter who is a renowned academic. She is fond of both. A patient, I have contempt for both. Funny it can work that way sometimes.

Case in point: https://www.mdpi.com/2079-6382/8/4/183/htm There are many of these in Lyme world. They speak to several different things that are not addressed in most guidelines. I should think this utility of autopsy case studies can at times prove cross-elastic across several different...

Works sometimes with autopsies, I think. They're not usually done on large scale, but one-offs can be compelling. Case studies are why I still eat abx from time to time, despite the havoc they render to my body.

Good question, although, if I recall correctly, POTS is speculated to be a problem with the brain. Regardless, perhaps cardio problems may emerge as a downstream effect, should that speculation be correct.

They actually say that one of their goals is to be able to objectively measure the efficacy of a given treatment in a clinical trail, I guess as a side effect of accurately measuring upright posture for extended periods of time. Not sure how that compensates for soldiering through, or...

Yes, hence my question as to whether they are actually gauging the impact of POTS, ie, it's a 10 minute lean test. Only if they can distinguish ME/CFS from other conditions. Even then, what are they objectively capturing? Signs that suggest a proclivity or disinclination for or against being...

Are they conflating POTS with PEM? Do they even mention PEM? POTS is just a symptom/manifestation in some ME/CFS patients; not all pwME suffer from it, and it occurs in non-ME/CFS peeps as well.

Ok. The cynical me wonders, though. Most research endeavors fatigue-related seem to have dubious effects on our community, at least historically. A) Other diseases/conditions have PEM, or PEM-like similarities. B) Not sure researchers as a whole know how to induce PEM reliably. Most don't even...

Another fatigue study? How will they differentiate between any other chronic condition that involves fatigue? Are couch potatoes included?

Not really clear on how credible this statement is, at least in terms of POTS. I thought there were tachacardia and or/BP change requirements to qualify for a POTS diagnosis. I seem to remember that there are tests for MCAS as well, but I could be wrong; my memory is suspect. But I'm pretty...

Moderator note: This post has been copied and following posts moved from this thread: Concerns about craniocervical instability surgery in ME/CFS __________________________ Not really clear on how credible this statement is, at least in terms of POTS. I thought there were tachacardia and...