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@Hutan, do you think it is possible that the UK DecodeME project might eventually lead to the pursuit of avenues like this? I am not suggesting we know anything yet, but is this a example of genetic hints leading to at least a diagnostic methodology?

I was a patient subject in that study. I repeatedly reached out to OMF asking when that study would be published. Eventually after a few years they became annoyed that I kept asking them and they told me that the data had been shared within the OMF science community and implied that was...

Here is a screenshot from the talk Dr. Systrom gave in this video (unpublished data). He says that in the patients with “pre-load failure”, 87% met the qualification for ME/CFS and of those patients Patients that they sampled with a two location small fiber neuropathy biopsy (one tests the sweat...

I am about 1/2 way through watching watching this video by Dr Systrom and I find it quite a quite good summary of his groups activities up to the point of the video which was in the late December 2022. here is the info… Recording: Transcript...

ME/CFS Pathophysiology Investigated by Invasive Cardiopulmonary Exercise Testing and Autonomic Function Testing. J. Squires 2, K. Wichmann Madsen 2, M.C. Stovall 2, S. Al-Zayer 2, W. Xiao 3, C.-J. Chang 3, P. Novak 1, D.M. Systrom 2...

here is a quote from near the end of the the paper assesing the use of pooled IgG in the previous paper:

here is an follow on study. Fibromyalgia patients with elevated levels of anti–satellite glia cell immunoglobulin G antibodies present with more severe symptoms, PAIN, Krock, Emerson, et al, Karolinska Institutet, Stockholm, Sweden...

@Hutan, Good to hear! Peter Jones is such a knowledgeable and enthusiastic communicator. I think I will take @Daisybell's recommendation about his podcast and give it a listen. it would be interesting to hear him talk about the genetic/inherited links he is seeing or not seeing.

There also are some FSHD facebook groups that can be useful, if you dare to tread into that realm. I dipped my toe into them and that is where I found info about the Jones lab.

I recently had a consult with my neurologist, and he ordered a GDF-15 test, so I looked it up and found this recent reference. https://onlinelibrary.wiley.com/doi/10.1002/ana.24506 no paywall.

@Hutan, there is currently an easier and less expensive route to get someone started on investigating this. It’s a route that both @Daisybell and I took. She tested positive and I tested negative. The Jones lab is developing a new test for FSHD and you can currently (I think it’s still valid)...

here is a TWIV I recall about the SARS-CoV-2 origin. I suspect this subject will forever be fervently debated. ////// TWiV 876: Spillover market with Michael Worobey March 17, 2022 Michael Worobey joins TWiV to explain evidence that SARS-CoV-2 emerged via the wildlife trade and that the...

that is a useful observation. Do you get to see these people 24, 48 etc. hours later and what are your observations then?

I did not listen to this podcast. I’m flagging it because it’s a New York Times columnist and promoting a bps book, title of the column: this book changed my relationship to pain. https://www.nytimes.com/2023/02/21/opinion/17eks-ezra-klein-podcast-rachel-zoffness.html

in this 2023 paper, the authors state that this group of patients were in the same subject group on their previous metabolomics paper in March 2022. Here’s the quote from the current paper. That paper had similar BMI for controls and subjects. Our group previously published plasma metabolomics...

I look forward to hearing Maureen Hanson's comments about this study and hear which of these findings she thinks are significant. As @Hutan stated, the paper is clearly written.

@Jonathan Edwards, what do you think of this comment from the researchers? here is the portion of the paper that describes the Cardiopulmonary Exercise Testing: /////// 4.2. Cardiopulmonary Exercise Testing and Urine Sample Collection The CPET was performed on a stationary cycle ergometer...

As has been suggested in other threads, what about the measurement of time spent upright versus horizontal?

Abstract Background The role of cytokines in the pathophysiology, diagnosis, and prognosis of small fiber neuropathy (SFN) is incompletely understood. We studied expression profiles of selected pro- and anti-inflammatory cytokines in RNA from white blood cells (WBC) of patients with a medical...

https://www.wired.com/story/the-era-of-fast-cheap-genome-sequencing-is-here/