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With the talks posted I’d be interested is the PET talk stands up to critical review! I remember it was rather exciting but had a lot of caveats

Interesting I thought CCC was the gold standard! “The presence of other illnesses should not preclude patients from receiving a diagnosis of ME/CFS (SEID) except in the unlikely event that all symptoms can be accounted for by these other illnesses.”

Since when? What study shows this?

Please read the exclusions criteria for ME/CFS, I think that is where we disagree: http://www.investinme.org/Documents/PDFdocuments/Canadian_ME_Overview_A4.pdf

I guess I’m confused on what you are arguing? If you have an automiune marker and are able to get treatment for it that’s great! If others, “50% of patients” have autoimmune markers then they have a known autoimmune condition and should get treatment for that condition. Then they don’t have...

I don’t me to be callous but if we keep chasing things because of “true belief” with no data we will continue to spin our tales like we have for the last 50 years.

sorry I have peripherally following this thread and the SjD thread, so my points may have been covered. Here you’re asserting PEM is SFN, and ME is SjD? So everyone is SjD with SFN, since the diagnosing criteria for ME/CFS includes PEM. Again if this were all true wouldn’t there be higher...

I’ve correlated in my own data higher HRV = more steps. My Apple Watch logs both automatically. 8 weeks isn’t enough for me to see trends it’s over many months I can see trends with HRV vs Steps. Apple Watch doesn’t flaunt a readiness score or anything so I don’t really pace off it. Just...

How do you measure low blood volume? I thought this was a proposed reason for POT/POTS, but unverifiable. Correct me if I’m wrong!?

I’d say a huge reason for this is it’s damn hard to feel good or even concentrate when your heart is at 130-140bpm just from standing. Makes it near impossible to focus on anything. Get up to make a sandwich for lunch feels like you’re in a marathon. Going for a walk with a friend and want to...

I’d love for someone to mass spec the supplements themselves… I wonder how much that would cost. As we all know supplements are not regulated by the FDA. I wonder if it’s even oxaloacetate.

This is why I think mestinon is better, since you’re not just masking the symptoms. I don’t think just slowing down the heart to get rid of tachycardia is 100% beneficial. I remember there was a study on heart preload failure in ME/CFS and another study on mestinon improving cardiac output in...

POTS is under OI but it is with the increase of BPM. OI does not have to have the increase in BPM. Again it’s a syndrome since it has a collection of distinct symptoms, one of those being that increase in BPM.

That is not POTS. If that was the criteria everyone would have POTS. The postural and orthostatic part you are completely ignoring. It’s defined a jump in 30 BPM sustained over 10 minutes when going from lying to standing. Key is sustained.

If you can’t call it Postural orthostatic tachycardia syndrome what do you call it? All POTS patients have the same symptom of heart rate staying abnormally elevated after standing, that not a syndrome? Syndrome: a group of symptoms which consistently occur together, or a condition...

We could probably move this to an entirely new thread but I was always told it was 30 bpm. Along with that most POTS patients bpm trend up over that 10 min instead of down. POTS for me was rather sudden after a particularly bad crash and not a gradual thing that crept overtime. Suddenly not...

To be fair lots of low cap biotech are ripping today, and the market in general though not 40%…. Though the amount of press for this is for sure a pump. They were trying to fundraise beginning of this year they seemed to be in a bad position. I would not be surprised if this is a last ditch...

So you’d rather have 5000 patients with no support whatsoever? No disability? No chance at quality of life increase? No help with pacing? There is a middle ground, it’s not black and white. I’ll take a quality of life improvement while research occurs. There’s no room in the system here for...

Hmm I have a hard time believing a small biotech like this would have any interest whatsoever in ME/CFS. My spidey senses are tingling but I can’t tell why