Search results

Looking at the paper for a few minutes gives me the impression this is just a statistical fishing expedition.

That's pretty interesting. There's been very little investigation into non-restorative sleep in ME/CFS.

I was thinking that. We can just change doctors whenever we want. Other potential factors are: ME/CFS is less discussed here than in the UK. Doctors are less familiar with it but may be starting with fewer misconceptions Maybe it's happened but wasn't reported, due to the relative obscurity of...

Contrary to most responses, I find your observations are insightful and not veering towards BPS territory. Just because we lack energy in the sense of ability to do tasks doesn't mean we lack energy in the sense of making ATP. It's certain that the subjective feeling of awfulness PEM brings is...

For what it's worth. The percentage of people with "Prolonged post-exercise fatigue" Pre-Covid: 20% Under 4 weeks: 63% 4-12 weeks:58% 12+ weeks: 49% 20% of people having prolonged fatigue after exercising shows we need better ways to screen for PEM.

We just got done talking about Maeve Boothby-O'Neill's death. It's disturbing. However, no details are given. We don't know if there are any options the doctors refused to try. Why do we never hear about this happening in America?

Do they realize what their own research implies? If people/w FND are more likely to be autistic, it's strongly correlated to structural changes in the brain.

Everybody needs exercise. There are very few contraindications, such as PEM.

A British exercise study on LC exlcluding people with PEM shows how far we've come in just 5-10 years.

In my personal view, it's immoral to do research with poor methodology because of opportunity costs. The same funds, equipment, and labor could have been used on research with greater potential to prevent or relieve human suffering.

I had an odd reaction to antibiotics once. I suspect it was ciprofloxacin but I don't have all my medical records and it was years ago. It caused me marked irritability. I thought it was very bizarre to have neuropsychiatric side effects from an antibiotic. I continued my course of the drug...

Newsflash, if I choose not to exercise because I need to do paperwork, socialize, shop, or do my basic ADLs in the 2-3 days afterwards, I'm not able to exercise.

My apologies if my comment was unclear. I didn't intend it as an ad-hominem attack. I meant the two comments to be separate. First I said "I'm pretty sure Glenn Chan was the author of this video." because it's important for people to know they're interacting with the author. I didn't mean to...

It's not just consult fatigue...it's post-consult malaise ;)

The headline was exciting, the details were a bummer.

This is an exemplary and badly-needed paper. It describes my experiences as a person with ME to a tee, and the accounts I hear from other chronically ill people. It highlights that uninformed or demeaning care creates a significant burden of iatrogenic harm. I'd like a further discussion of how...

Coverage from an EDS doctor: https://vm.tiktok.com/ZMYkc6nrY/ (5-minute video)

Clinician-associated traumatization from difficult medical encounters: Results from a qualitative interview study on the Ehlers-Danlos Syndromes https://www.sciencedirect.com/science/article/pii/S2667321523000215 Abstract: Patients with hypermobile Ehlers Danlos Syndrome often experience...

What's the supposed sign for functional cognitive disorder?

I'm pretty sure Glenn Chan was the author of this video. I'm immediately suspicious of its findings because it lists ivermectin. Since it doesn't help in acute Covid and there's no evidence for it in long Covid, it tests the study's methodology similar to a placebo.