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I’m with @Trish and @Mij on preferring audiobooks to music when trying to fall asleep. Something with a pleasant voice is important. Often I find myself zoning out, and I don’t end up following the story. I also do this with podcasts but it can be trickier to find one where a commercial or music...

We don’t really know what’s going wrong in Long COVID yet. How could we have one drug, let alone many to make a combination therapy?!

I often feel a mix of things with this kind of video/article. Makes me angry to watch influencers and the likes of rfk exploit and profit off people using pseudoscience and other nonsense. Just sickening. Especially when it endangers the population at large, not just those who seek out alt...

Yes, and these two stories, one published on Wood's personal website and the other on Cort Johnson's HealthRising blog are described as "perhaps the most compelling evidence that at least a subset of ME/CFS cases are directly caused by brainstem deformation." That's concerning. @Trish, I am in...

I'm having trouble being convinced by this argument. What about the patients who notice a pattern of worsening after doing too much before they know they have ME and have a chance to be taught anything by other patients? Or those who did GET and were taught by other 'professionals' that it...

I haven’t had the energy to read each post, so I apologize if my comments are off topic or repetitive. I wanted to add that when I was mild and knew less about ME/CFS, I interpreted “no permanent damage” to mean that with enough time after a crash, I could return to my baseline. Now, with...

I haven’t read the paper, but what stood out to me was the information in Figure 2, and particularly how the efficacy of various treatments compared to the efficacy of pacing, a treatment that the majority of respondents said was at least slightly helpful. In my experience, lack of pacing is...

I am skeptical of this statistic that he’s getting people back to 80%+, and unfortunately, we can only take his word for it, because he and other doctors making these type of claims don’t have rigorous trials to indicate what’s happening one way or another to their patients. I think for docs...

$8,500 for 2 hours a month?!! I would be very interested to know what salary that translates for her. This exorbitant rate is highly disturbing.

This is a really neat idea. Thanks for sharing! I would be curious to know where I can find it when it’s published. Also, for anyone submitting, it might be helpful to know if there is a deadline for sending in material.

…I also couldn’t help wondering if any of the docs in the movie would like to join the discussion on S4ME. I suppose some might be here already…:)

Really well done. Congrats @Grigor and to the well-spoken docs who shared their precious energy to participate and all others who made the movie possible. Yes, @Kitty the loss of human potential for these five docs and the millions of other patients just makes me sick to my stomach...

@Yann04 it looks like the works and artist statements have been posted here: https://www.artworksloveland.org/events/opening-reception-may-9th-6-9pm

I believe the artist talk on June 14th will be on Zoom, with some artists presenting from the gallery and others presenting from home. Hopefully it will include photos of the artworks alongside the talks.

I like ME/CFS Scrutinizer the most of the alternatives so far. I agree with others that 'ME/CFS Science' is too generic and neutral. I could easily skip over that. That’s why Skeptic was good- it definitely caught my eye and made me stop for a second to think. Scrutinizer gets my attention...

I’m like others here who posted that they thought the title meant you were skeptical of the biomedical basis of ME/CFS. Once I read the content of the blog, I thought it was a suitable name, for reasons @Simon M summed up above. “Skeptic” is a perfect descriptive that would be hard to match...

I relate to this a lot. The more I am upright, the more I feel the need to then lie flat. And the longer I am upright, the longer I need to lie flat to help relieve the symptoms. It feels connected to OI. And yes, the worse I am feeling, the more it feels like my head needs to be the...

I was reading Hal Walker's blog today (he has ME/CFS and writes about living with the illness), and it reminded me of this thread so I thought I would share it here. https://halwalker.substack.com/p/in-search-of-a-place-to-lie-down Here is a snippet of his description:

They are both bad in different ways. BPS approach has had a big impact on research funding and attitudes of clinicians and public. We could be much farther along in our understanding of the disease if BPS hadn’t had so much influence. I’m more concerned about NIH having such a small budget...

ugh