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    Do you have small fiber neuropathy (SFN)?

    My most recent medical report in attachment. Sjogrens, sfn, dysautonomia.
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    Is there a connection between ME/CFS and Sjogren's Syndrome? Discussion and a poll about testing

    I've been involved in Sjogren's research trials at the University of Ghent for the past five years. More than half of the patients with Sjogren's that I've met there experience exercise intolerance and symptoms of post-exertional malaise (PEM). It's a widespread misconception that Sjogren's is...
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    Is there a connection between ME/CFS and Sjogren's Syndrome? Discussion and a poll about testing

    I’m homebound due to Sjogrens disease with post-exertional malaise (PEM) and small-fiber neuropathy (SFN). I’m SSA-positive and ANA-negative. My lip and minor salivary gland biopsies are positive. Aside from ME/CFS and SFN, I don’t have other symptoms, and I don’t really notice dryness because...
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    Finally, I’ve found what caused my brain fog, chronic fatigue, depression and aching joints...an insect bite! - James Delingpole

    Borrelia qPCR phage is invalid. It is never tested with healthy control groups nor peer reviewed. I test also positive for B. Miyamotoi lol and I think lots of people who do the test :D
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    Intravenous Cyclophosphamide in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. An Open-Label Phase II Study - 2020 - Rekeland, Mella, Fluge et al

    There is probably a big auto-immune component in subgroups of ME patients. Since ME still is not a disease. After 5 years of having an ME diagnosis I got diagnosed with Primary Sjogren (no sicca symptoms). Cyclofosfamide is on the list of treatments for primary sjogren... Makes sense certain...
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    Do I have now ME next to Sjogren or only Sjogren?

    Treatment options for pSS are very poor in my opinion. Based on my current biochemistry I could probably only get Plaquenil to try. Other meds such as corticoids or Rituximab are only given when organs are attacked or severe inflammation (CRP, elevated ESR...). There are some studies where pSS...
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    Do I have now ME next to Sjogren or only Sjogren?

    Yes, I was just wondering because according to the Fukuda criteria for ME, if one finds Sjogren in a patient, the diagnosis of ME is not applicable anymore.
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    Do I have now ME next to Sjogren or only Sjogren?

    Hi, I became sick in 2014 with very long list of symptoms: extreme fatigue, tinnitus, burning sensations, unrefreshing sleep, 247 chronic headache (pressure inside head), neck pain, osteopenia, gut dysbiosis, anxiety, dizzyness attacks, high BP, muscle weakness, back pains, blood pooling, ...
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    SMCI RAMSAY 2018: “Characterization of Janus kinase (JAK) activation profiles in ME/CFS subgroups”, Lombardi

    Meirleir is going to do an official trial in 6 months with 3 groups (Filgotinib, another JAK1 inhibitor and placebo). Filgotinib will be first available on the market in BENELUX (Belgium, Netherlands, Luxembourg) around May 2020. Price range will be around 10.000euro/year/patient according to...
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    SMCI RAMSAY 2018: “Characterization of Janus kinase (JAK) activation profiles in ME/CFS subgroups”, Lombardi

    It is very frustrating good JAK1 medications already exist for some time and we still cannot receive
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    OMF ME/CFS Working Group Meeting - September 26 - 28, 2018

    This is al great but when will actual trials and treatments start?
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    Weird appearing scratches without scratching myself

    Hello Lately (but also over the 4 years since I am being ill with diagnosed ME/CFS and post-Lyme disease (weak Elispot LTT values). I have something weird going on: scratches that seem to come from a cat (but I didn't touch any cat in years). Could this be still bartonella? I also didn't...
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    High CMV IgG titers. What to do?

    Maybe I need to take Gammanorm again. Since my total IGG is on the low side, will measure again subclasses. Last time IGG4 was slightly too low.
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    High CMV IgG titers. What to do?

    I have high IGG viral titers for CMV and EBV. Especially CMV concerns me cause I have also a lot of heart complains (well they actually never found something, I had extensive research done: MRI heart, VO2max, ECG etc) But then my CMV was low probably. Do I need to take something for this high IgG ?
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