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How frustrating. It sounds like you did your job by being well prepared and clearly communicating. The doctors comments seem to indicate that he has no options for you. although it’s a frustrating experience, in the long run I’d rather hear that upfront so I can move on and not get stuck...

The Klimas MTHFR ME/CFS Genes & methylfolate study coordinator got back to me. He said that the study should be published in about 2 months...

@Sasha, I was in that study and I just did a pub med search on the coordinator of the studies name as an author, and it doesn’t appear the study has been published. I have sent an email to the coordinator to see what is the status of the publication....

Merged thread This paper received a bit of attention when it was published. Now retracted. https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0216079

@lunarainbows, I still struggle with accurately describing the seperate pain symptoms, but here is one example. I was never able to identify allodynia pain until I learned the medical term, allodynia! technically, mine is mechanical allodynia. Anyway, pain experienced from something touching...

@lunarainbows, my pain symptoms sound very similar to yours. Some things come to my mind that may not be directly related to your original question but I think are applicable. I am not sure where you were located but if you are dealing with the United States medical system, I found becoming...

here is a quote in The Scientist article from Frank Rice, long time researcher in the field of touch and allodynia... ....Although the Schwann cells had been spotted before, Rice said, “they were not part of the thought process” when it comes to studying pain transduction. “We get locked into...

Apparently, significant research in the field of allodynia. Here is a nice write up about the study, including comments by some prominent researchers in the field. https://www.painresearchforum.org/news/126263-pain-nerve-endings-“bare”-no-more here is the study abstract...

What was the led to you trying Rituximab?

Johnathan, how does a clinician determine when to try rituximab in inflammatory arthritis? Are there simple blood tests? I am actually wondering if it is a clear and simple process or not...

I recently listened to this podcast episode by Malcolm Galdwell. It is about the researchers involved in the discovery of retroviruses and the paradigms they had to break through and how these scientist in the early days were thought to be crackpots. It is a story familar to any of us who follow...

@arewenearlythereyet, I was confused also. from my reading, it is a "retrospective study".... so they just went and looked through their records and selected out these patients and they are saying, "look at these miraculous results (painwise and in being able to ID FM by a blood test). They...

thanks, that helps clarify things. why are you proposing to study only severely ill patients?

Johnathan, I am confused. At this point, what are you going to measure, how and for what purpose?

My sleep study was somewhat similar, although it was done quite some time ago. For me, about 10 to 15 mg of amitriptyline in the eve helps me not awake during the night so much, but the sleep is still quite variable and I will be prone to periods of being awake if I overdo physical activity that...

@Jonathan Edwards, some thoughts. I am wondering how to determine that the patient sleep improved? self reporting? Are you going to do sleep studies on them? Or are you more interesting in determining their if their activity level increased with more sleep? sleep is a such complex...

ST is the acronym for "standard treatment". here is their description:

@adambeyoncelowe, It certainily was not blinded. it was a "retrospective cross-sectional study". i’m interested to see the responses to this study, because insulin resistance is such a different approach to the problem. here is their statement about limitations of the study....

here is a reference to Dr. Systrom's current Phase 3, double-blind, randomized control clinical trial (The Exercise Response to Pharmacologic Cholinergic Stimulation in Preload Failure) using pyridostigmine, an exercise test and it includes his hypothesis for the trial...

here is one. small study in 1998. One of the authors is David Robertson of Vanderbilt, who is still very involved with POTS research. https://www.ncbi.nlm.nih.gov/pubmed/9815870