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  1. Forbin

    Red-brown speckles on palm of hands and fingers

    It could be anything that is corrosive, like cleaning chemicals. If so, I'd think it would have to be a fine powder or mist to cause little dots like that. I'm virtually certain I've seen this on my own hands, but, dang it, I can't recall what caused it. :banghead: :)
  2. Forbin

    Five years before multiple sclerosis onset: Phenotyping the prodrome (2018) Wijnands et al

    I think you're right, and that "prodrome" does not mean that the disease process hasn't started, just that it doesn't meet the official diagnosis yet. If that's right, then, by most current definitions, the "prodrome" of ME/CFS technically lasts at least six months - since that's how long you...
  3. Forbin

    Five years before multiple sclerosis onset: Phenotyping the prodrome (2018) Wijnands et al

    Following onset, I developed mild anemia with low RBC's, high MCH and normal hemoglobin. I think this is called "macrocytic anemia," but I could be wrong. The physician attributed it to loss of appetite, but I never told him I had lost my appetite... because, at that point, I hadn't. Actually...
  4. Forbin

    Red-brown speckles on palm of hands and fingers

    Have you been handling any materials that might be considered corrosive? This webpage discusses something that looks very similar (see image below) and it turned out to be from handling a jar containing corrosive silver nitrate. Another possible source of silver nitrate might be from the tips...
  5. Forbin

    Five years before multiple sclerosis onset: Phenotyping the prodrome (2018) Wijnands et al

    As far as prodrome goes, probably the weirdest thing I had in the months before onset was an odd intolerance to cold. On several occasions, I would climb into a cold car around 10 PM to drive home and I would just be swept by waves of a kind of shivering that I had never experienced before. It...
  6. Forbin

    The microbiome hypothesis: Lipkin's collaborative, part 1 (Simon McGrath blog)

    This 2018 paper found that respiratory viruses can alter the gut microbiome (in mice). Assuming that something similar can happen in humans, perhaps the non-specific "viral triggers" apparent in many ME cases are actually only important in that the immune response to them disrupts the gut...
  7. Forbin

    Why has 'persistent enteroviral infection' been dropped as a research strand in ME/CFS? (Jen Brea asking)

    Balance problems have long been recognized in ME. It's certainly not universal, but nor does it seem to be all that uncommon. Connecting the problem to orthostatic intolerance seems to have been a more recent development, and it clearly contributes to many cases. On the other hand, there also...
  8. Forbin

    Machine Learning-assisted Research on ME/CFS

    FWIW, in the first few years of the illness, I had a couple of liver function test results that seemed to concern the doctors who ordered them. Each time, the tests were normal on retesting. Maybe that's par for the course with liver functions tests, or maybe it's a more frequent occurrence in...
  9. Forbin

    Member questions for Dr. Sadie Whittaker, new Chief Scientific Officer of Solve ME/CFS Initiative

    Perhaps they have already thought of this, but I wonder if their biobank/patient registry has a mechanism to retrieve samples from patients who are in remission. While the system is obviously set up to acquire samples from patients who are ill, they might want to proactively try to acquire and...
  10. Forbin

    Stamina levels before ME/CFS?

    The low BMI connection to CFS reminds me that I was very thin as a child, even though my height was normal. My older brother was never anywhere near as thin as I was. The pediatrician assured my mother than I would put on weight eventually, and I did do so during my teenage years. I was of an...
  11. Forbin

    Stamina levels before ME/CFS?

    I was in my early 20's and had a lot of stamina at the time of onset. I would ride my bike for an hour or two several times a week for exercise and would come home with my shirt soaked in sweat. I had to cut that back when I got a job that routinely required 12+ hour days. I did have some kind...
  12. Forbin

    Columbia University: Insights from Metabolites Get Us Closer to a Test for Chronic Fatigue Syndrome

    The same thought crossed my mind, but I'm not so sure that it is easy to find a group of bacterial and metabolite differences in a large proportion of the ME/CFS patient and in very few controls. I assume you have to find the entire group of differences in (most) ME/CFS patients and the entire...
  13. Forbin

    Columbia University: Insights from Metabolites Get Us Closer to a Test for Chronic Fatigue Syndrome

    This website ranks AUC (area under the curve) scores like this: ( a score of .50 is like a coin toss ) .90-1 = excellent (A) .80-.90 = good (B) .70-.80 = fair (C) .60-.70 = poor (D) .50-.60 = fail (F) [This table also shows up in this 2009 paper on diagnostic accuracy. ] I've also seen it...
  14. Forbin

    Insights into myalgic encephalomyelitis/chronic fatigue syndrome phenotypes through comprehensive metabolomics, 2018, Lipkin et al

    Sort of along the same lines, I noticed that ceramides were mentioned, but only becasue I first heard of ceramides last winter when my dermatologist prescribed a ceramide-based cream for my hands that were chapped to the point of bleeding. Ceramides are a waxy lipid molecule that help to retain...
  15. Forbin

    Insights into myalgic encephalomyelitis/chronic fatigue syndrome phenotypes through comprehensive metabolomics, 2018, Lipkin et al

    Not that I claim to fully understand this, but I think a major take-a-way here is to be found in chart S3 in the Supplementary Figures & Tables. They take their previous work on bacteria and combine it with the top 10 predictive metabolites found in this study and find that they can...
  16. Forbin

    David Systrom, researcher, Brigham and Women's Hospital, USA

    He does not specifically mention burning sensations in the video. When he mentioned that small-fiber polyneuropathy was being found in skin biopsies of 40% of ME patients who also had "pre-load failure," and then mentioned that those fibers can produce "neuropathic pain" when they are misfiring...
  17. Forbin

    David Systrom, researcher, Brigham and Women's Hospital, USA

    Interesting. I've never really paid much attention to "small-fiber neuropathy," considering it to be connected to fibromyaglia, which I assumed was mostly diagnosed by tender points, which I do not have. However, I have experienced unexplained, and very long-lived sunburn-like sensations on/in...
  18. Forbin

    Ron Davis’s big immune study is looking at HLA genes (HLA, WTF?) Here’s the story. [Simon M blog]

    Interesting article on how the cytomegalovirus (CMV) evades the immune system. It prevents the infected cell's MHC (HLA) molecules from reaching the surface of the cell, where they would normally prompt the immune system to destroy the cell. However, the absence of MHC molecules on the cell's...
  19. Forbin

    Application of head scraping combined with five-tone therapy in CFS of liver qi stagnation, Meiling et al, 2018

    This somehow reminds of the time that talk show host David Letterman became irate when his attempt to replicate the "Denorex Challenge" was interrupted. He loudly insisted, "This is SCIENCE, damn it!"
  20. Forbin

    Leonard Jason wants ME/CFS patients to do a PEM survey

    Leonard Jason is at DePaul University in Chicago, Illinois. Chicago apparently uses a version of "The Philadelphia Grid System," in which there are 8 blocks to a mile. So, if that's the metric - and I'm not sure that it is - a block would be 660 feet long. "A walk around the (square) block"...
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