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While that would be ideal. I‘m not sure it‘s realistic for the very severe. I think a FUNCAP and a symptom questionnaire every two months might be sufficient to get interesting long term data if done over 5+ years.

I had been doing something similar for a John Hopkins study on Post-COVID but the questionnaire added up to hours each time and IMO wasn‘t asking very useful questions so I stopped. I think the PLRC is doing something similar with the MyDataHelps app.

This is a sidepoint so feel free to ignore, I‘m no expert and I‘m not the person this thread is talking about with the example of the severely ill person spontaneously improving. But having followed this person‘s blogs and social media somewhat closely. I get the impression their improvements...

This got a lot of attention 2-3 years ago when it came out. Do we have any much news on a replication attempt or similar?

Yes my “surprise” was rhetorical. A hedged and euphemised way to say that the authors seem to come to a conclusion explicitly not supported by their evidence. Unfortunately outside this community I have to find ways to hedge and soften down my critiques because everyone seems to take being...

This is good to see. I’m suprised the authors wrote “pivotal” in their title after this data + the open label data seems to clearly indicate that this trial is not enough to make out an effect or not.

Reading this, I realise I don’t have what people are describing. My symptoms feel worse during an infection, not better, my function sometimes improves but its quite attributable to being deep in the wired state.

this web tool is kind of cool. Almost worth sending about as a soft advocacy thing.

Personally I know that when I have an infection plus very severe my body sometimes to pump me up with adrenaline or something because ill be shaking and feel mentally way better and be able to be more active but as soon as the infection ends ill pay for it (get the PEM). The first time it...

I do really hope the responses are genuine it will/would be disappointing if the rct doesnt show any effect.

While it’s nice to hear about people who had profound states (or extremely severe) states of ME improving significantly. (It’s also worth remebering Whitney has access to things that are uncommon for most pwsevere ME ie. perfectly temperature controlled room, caregivers able and willing to...

Urgh. I hate how common that belief has gotten. Feeds right into the brain retraining / meditation as treatment pipeline.

Major red flag imo

On a very random note, I was asking Gemini what conditions the lightning process claims to treat. And when I asked for a link to the website it flat out refused. Full Chat

Causal claim Literally the worst way to test causality This study’s title says it all.

I think just on the basis of including both “autism” and “GI disorders” (all of them!?) you can tell its absolute BS ahah. If it even worked 1/10th of his claims he would be nobel prize winner.

I agree in a sense but I don’t think whitney is claiming cure more just “this helped”? Anyways it’s not a particularly important thing to clarify. I agree that survivorship bias and reach means people who improve get way more attention to like spread whatever magical placebo they tried.

I don’t think whitney is that comparable he’s still (very?) severe. And while he shouldn’t be promoting quackery like this, especially with the reach he has. It’s not like he’s particularly worse than the average pwME who believes in similar supplement treatments and the like. I obviously think...

I remember Whitney writing he cycled dozens of supplements and drugs for years hoping that one would make him better. There’s perhaps a possibility the one that was being cycled at the time of recovery gets the kudos whether or not there is any causality.

This is similar to what the Bio doctors in switzerland are finding trendy. I was offered and declined IVIG the other week. Couldn’t find any indication there would be a benefit worth risking PEM for. (The only well done RCT found null result).