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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

Shall I go on? All right I wonder what is next P158 I had to look it up - from web MD "Somatic symptom disorder (SSD formerly known as "somatization disorder" or "somatoform disorder") is a form of mental illness that causes one or more bodily symptoms, including pain. The symptoms may or may...

Note sure what this one on P35 means.

Okay, here is another one lumping Fibromyalgia and Chronic Fatigue as Malingerers Blimey that's only page 17. Nooooooooooooooooooooooooooo I can't go any further.............

Folks please READ the above post. Please don't follow the link unless you want punishment. If you do you will see the book of the conference titled "Malingering and illness deception" (this is where Malingering comes from) which contains things like this Apart from the first quote the others...

Thanks for your efforts on this @Emily Taylor . May I ask why the deadline to sign on is Wednesday, March 27th? This is right before your campaign in April.....

The only way the US will get more funding in ME/CFS is through Congressional Action. So I'm linking this new thread by @Emily Taylor which is very important for folks in the US https://www.s4me.info/threads/urgent-advocacy-action-house-fy20-funding-requests.8698/

Here is a link to the funding provided by the NIH each year to the UK ME/CFS biobank https://projectreporter.nih.gov/project_info_history.cfm?aid=9272477&icde=31258613 And here is a list of 8 papers from the NIH project system that have come out from the Biobank...