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It really depends in what the impact is, both on a molecular basis and on a functional capacity basis. FUNCAP is the best option with regards to the limitations people with PEM face.

First of all, the reference is incorrect, it’s Tab. 4. More importantly, the trend was not statistically significant. Meaning that the people that received treatments did not improve more that those that didn’t.

For LC: 61 out of 154 (40 %) with a CFQ score >=4 at 6 months were lost to follow up at 12 months. For controls: 17 out of 28 (61 %) of the eligible participants at 12 months were lost to follow up. Yet the findings were that higher resting heart rate was correlated with fatigue.

21 % for the three most significant factors does not seem very impressive to me.

Oooh, I see now that you mentioned different types of damage. Thanks!

I skipped to the end, and it really showcases how little thought that goes into giving a psychosomatic explanation of anything. Ryan starts this bit by giving an example of a case she knows where a patient presented with symptoms that looked very much like a brain injury, and was successfully...

N = 1, but I very recently saw an ophthalmologist and I’ve had severe light sensitivity for a while. I’m pretty certain that I did an OCT amongst many other scans that came back completely fine, and according to Specsavers, an OCT can detect the kind of changes that occur due to MS. Presumably...

This actually appears to be legit! @Andy possibly a source of funding for SequenceME and Chris’s team?

Thank you!! I should have been able to guess that, Facebook works the same way.

My post here: https://www.s4me.info/threads/sequenceme-genetic-study-from-oxford-nanopore-technologies-the-university-of-edinburgh-and-action-for-me.41663/page-4#post-596060 (Edited to add direct link)

The tech they are going to use for SequenceME starts at ~$800 for whole genome sequencing and takes 72 hrs. Which is mindblowing when you consider that The Human Genome project took 13 years (1990-2003) for 92 % and cost $2.7 billions.

When I felt great for a week after the stomach bug, I was unable to trigger the normal worsening of symptoms. I did not overdo the physical aspects to be safe, but I used my head a lot. Like an order of magnitude more.

Another n=1. I had a stomach bug about a year ago. Crashed terribly for a week, then felt great for a week, then back to normal bad.

The link to the Supplementary material takes me to this page: https://apps.crossref.org/pendingpub/pendingpub.html?doi=10.3310/BTBD8846 Are anyone able to access the material?

There are some stories at lp-fortelling.no as well, although I believe it has already been posted. https://lp-fortellinger.no/en/lp-stories/

Yeah, I’m with @Trish here. It’s less nonsense, but it’s still nonsense so it would be a stretch to call it an improvement. It doesn’t reach the minimum clinically important difference threshold, so to speak.

The started looking into rituximab because of at least one case of full remission in an ME/CFS patient that was treated for cancer.

Thank you for explaining! I’m not sure I follow all of the technical aspects. In simple terms: They are essentially looking at how water molecules move to try to determine if they are part of more of a free flowing river, or if the river has been partially filled with containers with water...

From the study: I was unable to find their definition of remission with ctrl+f https://www.s4me.info/threads/intravenous-cyclophosphamide-in-myalgic-encephalomyelitis-chronic-fatigue-syndrome-an-open-label-phase-ii-study-2020-rekeland-mella-fluge-et-al.14925/

Out of curiosity, what would be your ideal note, assuming they are not going to withdraw the review?