Search results

33 years and counting because doctors (happily) let "researchers" like this take over ME/CFS and now LC. Without control or correction.

A tip for blood drawing to go smooth. A baby needle makes it a lot easier. A baby needle with a bit of a push to get in works for me. A normal needle only pushes the vein away or leaves big dark bleu bumps.

Moderna could start with researching a large group of patients, they have the money for it. Earned from the vaccinations they sold, mostly paid for by governments. And now they want to wait for those governments to pay for research so Moderna can cash again? :banghead::yuck::arghh:

Does anyone know if there is some correction on the whole NIH study planned in which all the data from the "healthy" controls with POTS are excluded?

responding to a deleted post Klaus Wirth knows about the urgency. I think, that's exaxtly why repurposing is important. It saves so much time in testing. Like Mestinon, it was already out there for Myasthenia Gravis, repurpose it for ME/CFS, and a whole portion of research can be skipped...

Did you notice that Ron Davis (Stanford) is one of the authors. If mistakes are made they should be corrected, let me clear about that. But in my opinion Ron Davis deserves a lot more credit than the NIH, given his record on ME/CFS research. And his personal reason: finding a cure for his son...

I apologise to you @EndME for not getting the purpose of this forum. And I also apologise for upsetting you. Together with what @Hutan wrote I get it better now.

Then maybe you could try to read it before you write?

So what?

It probably will be the more pertinent finding, would be my guess. Shunting in Systroms CPET's seem to go that way. The core business of the body needs the blood and the oxygen, no room for extracurricular activities and those activities could do the most damage to the muscles (and other...

If only the NIH had had your clear, comprehensive and ethical pre-trial conceptions. (sigh) Maybe you could teach them a thing or two or three....

Thanks for your answer. I would have loved to join you down under in the moxy measurements. But I'm pretty sure the user guide is more than one page and if an i-phone is used I'm lost. In kitchen appliances I win, just by using logic. In I-phone and other complicated things my brainfog wins. I...

The paper would explain creaky gym squats. I really hope too Rob Wüst et all have real news soon. He mentioned on X: "There's a whole lot more going on than PEM". That small sentence goes through my mind at least once a day. More about muscle changes in ME/CFS could be "a whole lot". Other...

One study reported adverse reactions, including local swelling, skin bruising, and nausea. That must have been a really hard handed massage.

In reply to (only part of) the question @andrewkq had asked Walitt hangs his head in the noose. He calls it volitional. The brain of a pwME signals and "Brian" construes it into volition. Before I thought he wanted to spare pwME by pointing to TPj, the patients can't help it, but here he shows...

Important stuff. But how could an unloading moment be found in ME/CFS an LC when you're not diagnosed for 3 or 6 months or even much later, if al all? Some passages read as if it is about ME/CFS. Happening not just in space, but in my own body, as down to earth as it gets. Could the NIH have...

Great job and a job well done @Hutan and others too !!

This research was done in UMCG. (Rosmalen) The specialist chronic fatigue didn't even know about ME/CFS. When asked how many doctors there would accept the diagnose ME/CFS, he answered "Not many". Those people wouldn't recognise a ME/CFS patient in front of them anyway. Their heads are plastered...

I'm one of those patients with normal HR (with chronotropic intolerance+ not high enough HR) normal blood pressure and still OI. Brainfog made me drop out of uni in my final year, but 3 decades later I'm still alive and (a little less) kicking. NASA-lean test and a normal tilt table test would...

@SNT Gatchaman. Perish or adapt?