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There is some public 23andMe data posted here if it helps. https://my.pgp-hms.org/public_genetic_data?data_type=23andMe However there are at least 5 different versions of chips, and I couldn't find which one checks for that SNP.

There is a bit more info here https://www.snpedia.com/index.php/Congenital_adrenal_hyperplasia

According to this SNPedia page 23andMe miscalled rs7755898 https://www.snpedia.com/index.php/Rs7755898 However I checked the "Lilly Mendel" reference files and could not find this SNP. @mariovitali is your data 23andme?

Lets not forget Karl Mortens plasma swap too. This is slide 44 from his presentation in NZ. Thread on his presentation here https://www.s4me.info/threads/dr-karl-morten-oxford-university-lecture-in-new-zealand-about-his-research-december-2018.7287/

Two of the ten scientists on this project are from Stanford. http://med.stanford.edu/gbsc/nasa-twins.html One of them Mike Snyder is involved in the multi-omics work on ME/CFS at Stanford (Fereshteh Jahaniani leading the project is on his staff) as well as a recent scientific board member of...

Nooooooo. I've heard quite a few Australian researchers mention how essential he was with providing access to patient data and samples.

I know some of us are excited about the possible identification of "something in the blood" but lets remember that in Ron Davis's presentation he said it MAY be exosomes based on an experiment

My take on this is that T-cell clonal expansion doesn't seem to work out for all patients. But for a subset it might be interesting. Neil MacGregor in the Australian conference, and Jarred Younger in his neuroinflammation talk at the NIH thought there was an auto-immune subset. If that is the...

I think a lot of tests are subject to processing variables - Cytokines are one that come to mind immediately that can vary a lot. So good study design involves minimizing variables and as such perhaps they will process all samples together in one batch.

This was in 2016.

My doctor did look into this program. She told me it was incredibly hard to get in to and they are very selective. If I remember rightly you cannot participate remotely as the program requires stay in the hospital.

I wondered the same thing but the more I look the more I see parallels in other diseases. Myasthenia Gravis for example (or Congenital Myasthenic Syndromes - the genetic version of MG in simple terms). Hall mark is muscle weakness after exertion. Studies have shown Orthostatic intolerance Sleep...

For anyone that is thinking of participating in the study a comment was left on the article from a participant offering to provide advice and providing a few more details. Also, the first "week" is in fact two weeks, with 10 full days of testing.

Another interesting aspect - all of the 19 participants had a clear doctor documented infectious trigger, a requirement for entering the study. And 6 of the 19 turn out to have a rare disease found. Food for thought

Didn't Ron Davis talk about how he could get no funding for the Severely ill project as NIH does not fund that kind of investigation? Does anyone now if the NHS in the UK is set up to do a deep dive on a disease group to gather more information about said disease? One thing that may help move...

http://simmaronresearch.com/2019/03/nath-intramural-chronic-fatigue-study/ These two sections caught my eye. The numbers are small but very intriguing I've often wondered if many of us have a known rare disease. Rare diseases are so hard to diagnose and the medical profession does not have...

Thanks @Andy. I enjoy reading papers, articles, videos by Theoharis C. Theoharides. Mast Cells are such a fascinating area in our disease. I am impressed how you find all these papers and appreciate the hard work you do making us aware of them.

Jennie Spotila has written at length about the issues facing ME researchers getting funding from the NIH, with data based on many Freedom of Information Applications. For those wanting to learn more about the situation these are the recent series of articles she has written which are very good...

Where are my nausea meds :sick:. Page 295