Search results

A very common mistake, in my view: “If ME/CFS cannot include multiple mechanisms, then cases with other (underreported, as of yet unidentified) mechanisms are misdiagnosed. Since those cases are misdiagnosed, ME/CFS cannot include multiple mechanisms." That's circular reasoning, I believe. If...

So, that points toward 'regulatory energetic failure' potentially? 'Regulatory energetic failure' of some sorts suppresses cAMP/TORC-CREB signaling because energy-sensing stress kinases actively shut down transcriptional coactivators to conserve energy, leading to functional depletion without...

The lab coat. It would be funny if it were not so sad. There is no shortage of vulnerable people who will take this seriously and act on it.

It’s not just about terminology. If Utsikt says that pacing has “no influence over the disease trajectory”, that is very likely incorrect. Even on the terminology level, while I understand what you’re saying and agree in a superficial sense, it’s still an imprecise way of looking at this. It...

Yeah, but that’s very likely just incorrect. We don’t have enough data to be certain, but a century of patient and clinician anecdotes is not nothing. If you are a very severe patient and every step downward on the scale from mild toward worsening followed (post-) exertion - every single time...

That's why I always called BS when people talk about brain autopsies found 'no damage' - because they very likely only looked for 'gross damage.' We don't really know what has been done so far because there is so little being published in that domain. The confidence some people ('experts') have...

Muscle injections with lidocaine improve resting fatigue and pain in patients with chronic fatigue syndrome (2017) https://www.dovepress.com/muscle-injections-with-lidocaine-improve-resting-fatigue-and-pain-in-p-peer-reviewed-fulltext-article-JPR

I understand, but that’s just an assumption. Maybe they had what I have, maybe not. There is absolutely no way to tell. It’s unknown, and it’s hard to see how any stronger claim would hold up under scrutiny. I’m not saying that people can’t recover from ME/CFS. I’m saying I find it likely that...

Sorry, I can't put more energy into this. I could only find this, atm. Whatever the exact numbers were/are, they were/are high. I think I rember Nath saying something like 'over 40% were essentially misdiagnosed' in a presentation. What's even more insane about this is that this was already a...

It's based on what they (NIH) said. I am sure you will find a source. Pretty sure it's roughly correct, but not 100%. If I am wrong, please post it here. Thank you.

Nothing about this is hypothetical. In the NIH intramural study, roughly (?) 50 percent of ME/CFS-specialist–diagnosed ME/CFS patients were misdiagnosed. And assuming that the remaining 50 percent all share the same underlying pathology is essentially a form of cope. I have multiple MDs in my...

That's fantastic for your friend, but you have no way of knowing if your friend who recovered had the same underlying pathology (causing their ME/CFS) that the vast majority of patients who don't recover have.

A doctor telling you not to crash is a treatment. If I had received that treatment, I would not have very severe ME/CFS. Getting treatment for your pain, and receiving psychological support if you need it, are also treatments. Having a state-led institution diagnosing you for your pension...

Just because you mentioned it, re 'practical aspects you might have missed': I believe most of the actual workup of muscle tissue (including the tissue samples of the Wüst project) happens in Salzburg, Austria. I am not 100% certain, though.

Thank you very much for your thoughtful suggestions. I would like to provide a brief but clearer overview of the current situation (here in Vienna). The WE&ME Foundation is presently undergoing a restructuring process for the 'Johadamis Grant', which is valued at €100,000. The intention is to...

Re 1, sounds interesting, I am quite confident I could get funding for such a project. So, if you had a team in mind, please reach out. Re 2, I understand this (and other evidence, hamster models eg are very intersting) is very indirect, but it's good enough for me to make that bet...

There is a lot of evidence converging toward mitochondria (I haven’t read this paper!) as key drivers of complex, chronic, multisystem diseases. Honestly, would that be surprising? Why do we understand so little about these diseases? A reasonable answer is that we still understand very little...

I would take any bet that this is 1. a real and disease relevant phenomenon and 2. occurring in the ME/CFS brain.

My sense is that Lauterbach, who sits on the Gesundheitsausschuss and is on very good terms with the German Minister of Health (they are in a coalition), genuinely wants to push ME/CFS. But turning that intention into actual policy and progress will be a struggle. He called it the 'biggest...

This is absolutely massive news, please consider that this is more than twice of the annual NIH budget (that is when it still existed). Is it 'enough'? No. But it's an OOM more funding in Germany than 5 years ago. Huge success for advocacy. Let us hope they will use it wisely.