Gingergrrl
Senior Member
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Before I reply, I am tagging @Inara b/c am not sure if she saw this thread and she is also very interested in calcium issues (but is much smarter than me
)
The type of calcium channel that I was referring to is the "N-type calcium channel" (not the L-type) which is also known as VGCC or "voltage gated calcium channel". I looked at the article you linked but was instantly over my head in trying to understand it. What does "TRP" mean?
I'm not sure if there is ME/CFS literature on calcium channel autoantibodies and this is part of what I am trying to understand. In addition to (myself) testing positive 2x for the N-type calcium channel autoantibodies on Mayo Panels, I also test positive for autoantibodies to everything that you mentioned above alpha & beta adrenergic receptors, anti-muscarinic/cholinergic receptors, and positive ANA 1:160, speckled pattern (prior to my treatment).
My doctor and I came to the conclusion in mid-2016 that I do not have ME/CFS after all (even though every doctor that I saw starting in 2013 gave me a "CFS" diagnosis in the U.S.). But recently, I read that the ICC criteria for ME/CFS contain a section on "ion transport issues" and now there is so much research (mostly from Australia and Germany) re: calcium channels and autoantibodies.
I belong to a private group on FB for people w/the N-type CA+ Channel Autoantibody and almost 100% of the members also have POTS and many were initially given ME/CFS diagnoses like I was. So there is a great deal of overlap that no one is putting together IMO. It definitely won't be me putting the pieces together b/c I have no science background but I am closely following it (and those smarter than me who are able to make sense of it all)!
That is really interesting and I am wondering if people who test positive for this calcium defect will be considered to have ME/CFS regardless of their symptoms or if people would need to have BOTH the biomarker AND the symptoms in the ICC (or another chosen criteria)?
I now agree with Dr. Peterson but had no idea that was his view until I read your quote. Do you know why he feels ME/CFS is several different disorders or diseases? The reason I now do is because I have been on PR since 2014 and literally spoken to hundreds of members and the differences between how they got ill, what they test positive for, what symptoms they have, and what treatments helped them are so vastly different that I don't see how it is just one disease. That is just my personal opinion and I don't mean it to be controversial in any way (and in the end, I am totally open to being wrong)!
For instance, this is a nice article on T lymphocytes, and they mention the type of calcium channel you have been referring to (TRPs).
The type of calcium channel that I was referring to is the "N-type calcium channel" (not the L-type) which is also known as VGCC or "voltage gated calcium channel". I looked at the article you linked but was instantly over my head in trying to understand it. What does "TRP" mean?
I do not know the ME/CFS literature on calcium channel autoantibodies. I am aware of reports of a few autoantibodies such as specific adrenergic receptors and acetylcholine receptors, and ANA.
I'm not sure if there is ME/CFS literature on calcium channel autoantibodies and this is part of what I am trying to understand. In addition to (myself) testing positive 2x for the N-type calcium channel autoantibodies on Mayo Panels, I also test positive for autoantibodies to everything that you mentioned above alpha & beta adrenergic receptors, anti-muscarinic/cholinergic receptors, and positive ANA 1:160, speckled pattern (prior to my treatment).
My doctor and I came to the conclusion in mid-2016 that I do not have ME/CFS after all (even though every doctor that I saw starting in 2013 gave me a "CFS" diagnosis in the U.S.). But recently, I read that the ICC criteria for ME/CFS contain a section on "ion transport issues" and now there is so much research (mostly from Australia and Germany) re: calcium channels and autoantibodies.
I belong to a private group on FB for people w/the N-type CA+ Channel Autoantibody and almost 100% of the members also have POTS and many were initially given ME/CFS diagnoses like I was. So there is a great deal of overlap that no one is putting together IMO. It definitely won't be me putting the pieces together b/c I have no science background but I am closely following it (and those smarter than me who are able to make sense of it all)!
@Gingergrrl I think that the research group in Australia are in the stages of proposing using their clamp device as a biomarker, in terms of to the TRMP3 genetic defect (SNP) - but I don't have all the literature around it at the moment. Their specialty is neuro-immune, I think.
That is really interesting and I am wondering if people who test positive for this calcium defect will be considered to have ME/CFS regardless of their symptoms or if people would need to have BOTH the biomarker AND the symptoms in the ICC (or another chosen criteria)?
I did recently see a video of Dan Peterson (a new working group) who said he feels there are several different disorders or diseases involved in what is currently known as M.E. and CFS.
I now agree with Dr. Peterson but had no idea that was his view until I read your quote. Do you know why he feels ME/CFS is several different disorders or diseases? The reason I now do is because I have been on PR since 2014 and literally spoken to hundreds of members and the differences between how they got ill, what they test positive for, what symptoms they have, and what treatments helped them are so vastly different that I don't see how it is just one disease. That is just my personal opinion and I don't mean it to be controversial in any way (and in the end, I am totally open to being wrong)!