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    Problems arising for pwME from additional diagnoses of MCAS, hEDS and POTS. Advocacy discussion.

    Seems to me that once a medical professional throws tick-borne diseases like Lyme into a disease mix, we veer away from medicine and more into politics. It's been my experience that a large majority of clinicians and researchers have no real clue - they frequently merely mouth sound bites they...
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    "The Alienated Patient" - Julian Galt MD

    Too many clinicians look at anything online as bad. Some of it is. Some is good and even valuable. Relative to many of the diagnoses arrived at online not being accurate, same can be said about clinical diagnoses made by doctors. This truism is amplified when inadequate diagnostics are in play...
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    Care and Support Plan (CSP) Template

    This looks like it took a lot of time and effort to piece together.
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    Have you experienced being asymptomatic when not in PEM?

    I suspect that there are some of us that were entirely asymptomatic except for PEM (and that at relatively low intensity), in the very early stages of the disease. I'm talking the first several months, maybe even year or two. Of course, this would likely be mostly restricted to those of us with...
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    Problems arising for pwME from additional diagnoses of MCAS, hEDS and POTS. Advocacy discussion.

    I appreciate your point. It kinda feels like an own goal. We ARE talking about info from institutions like the NIH and CDC and NHS, at least in so far as they inform advocacy positions. So yes, your observation that there is widespread access to poor quality research applies even more so to...
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    Problems arising for pwME from additional diagnoses of MCAS, hEDS and POTS. Advocacy discussion.

    I fear Covid will be disarmed as a potentially disabling infection much as a fellow pathogen - Borrelia - was.
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    Problems arising for pwME from additional diagnoses of MCAS, hEDS and POTS. Advocacy discussion.

    Patients have been poorly informed for hundreds of years. Thousands. It's part of being a patient, of them being doctors - there's a cultural as well as an information gap . It's only since the advent of the internet, and widespread public access to higher quality research, e.g. directly from...
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    Problems arising for pwME from additional diagnoses of MCAS, hEDS and POTS. Advocacy discussion.

    Possibly because most medical professionals are either clueless, or know just enough to realize they'd be exposed as inadequate by an increasingly informed patient community.
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    Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS

    Interesting that most of the "diagnoses" in this article are questionable real diseases or part of the "sick tok" list of common conditions everyone can find a forum with evidence they "have." Remind me what too many air quotes signify? Honestly, fine. In the outpatient setting, when AI glazes...
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    ME/CFS Science Blog article - Immune findings in ME/CFS

    Excellent Blog. I just wanted to throw into the mix a concept that may have some relevance. Immune tolerance, in theory, at least, is a well-established concept, dating back to the 1950's. It's perhaps most familiar in situations involving pregnancies, and I think it received some renewed...
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    Disequilibrium, Rather than [POTS], Is the Primary Determinant of Orthostatic Intolerance in Patients with [LC], 2026, Miwa

    I'm not sure what the authors mean by primary determinant, but I was diagnosed with OI years before I was diagnosed with POTS. Each diagnosis was made by separate well-known ME/CFS specialists. POTS was made after four days in hospital, with staff checking HR and BP after standing like once...
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    Chronic Lyme disease, post-treatment Lyme disease syndrome (PTLDS)

    Where do things stand right now in Lyme World? Things are tribal. Everyone sticks to their own group, their own beliefs. Newbies come and have to sift through scatterings of propaganda and science. Then they have to make a judgement that is sure to be based on incomplete data. Before I got...
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    Chronic Lyme disease, post-treatment Lyme disease syndrome (PTLDS)

    Updating Lyme World is akin to updating US politics: It's massive and unwieldy and goes in countless directions. The Science has inched along, but not the diagnostics. We know antibiotics often fail to eradicate Borrelia, but this is hard to prove with today's diagnostic menu. We know some...
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    Chronic Lyme disease, post-treatment Lyme disease syndrome (PTLDS)

    I will tackle this in the morning, I promise.
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    Chronic Lyme disease, post-treatment Lyme disease syndrome (PTLDS)

    Oh dear. ::} It is too late. Maybe tomorrow? This is horrifically wrong. This is glaringly wrong, like Wesley or short. .. BTW: Hutan, you rock in my eyes, but im just too exhausted..
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    Chronic Lyme disease, post-treatment Lyme disease syndrome (PTLDS)

    I have been following this for 15 or so years. But knock yourself out. It feels good to proclaim. Edit. Sorry. @forestglip. In my world, embracing what he says is almost to comparable to wee willy.
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    Chronic Lyme disease, post-treatment Lyme disease syndrome (PTLDS)

    Sorry. I figured. You are smart. I get the sense you are a stats person, and I apologize if I'm wrong. My daughter taught stats at Duke, which is a respectable university in the US. With that stats an your back, I'd have to be blind not to see how smart and informed you are. But even I know...
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    Chronic Lyme disease, post-treatment Lyme disease syndrome (PTLDS)

    Meh. Non- US people have little idea of what it has been like on the front line in the Lyme wars.. Who did the bad science? Who did the good science? These fundamental questions to this day remain largely unresolved. There is far more politics involved than most suspect. Btw, look who took...
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    Chronic Lyme disease, post-treatment Lyme disease syndrome (PTLDS)

    Why the eye-roll? How so? I'm just curious.
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    Evidence that M.E. isn’t contagious?

    Do we know definitively if ME/CFS cannot be passed from mother to infant in the womb?
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