Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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Today, Thursday 15 Oct: Solve webinar with Dr Alan Light: New Developments in ME/CFS Research

Discussion in 'Upcoming ME/CFS Events' started by Sasha, Oct 15, 2015.

  1. Sidereal

    Sidereal Senior Member

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    This has been suggested for a subset of POTS. Hypovolemia + peripheral constriction.
     
  2. BurnA

    BurnA Senior Member

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    Similar to me ... Sore throat was the predominant symptom of my 'cold' which presented a couple of weeks prior to ME/cfs onset. I dont think it was strep but it was an unusual and persistent sore throat.
     
  3. Gijs

    Gijs Senior Member

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    Yep, this is the problem. Do we have any ideas what causes this?
    phenylephrine can be usefull:
    http://jap.physiology.org/content/117/10/1157
     
  4. Sidereal

    Sidereal Senior Member

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    Some CFS clinicians who measure vasopressin (antidiuretic hormone) levels in mainstream labs say that the majority of their patients have undetectable levels of it. You will notice that many here have polyuria and any attempt to increase blood volume by drinking more is unsuccessful since water just passes through them (unless they take drugs like fludrocortisone or desmopressin).
     
  5. Gijs

    Gijs Senior Member

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    Thx Sidereal.
    @Professor Edwards, are there any reliable bloodvolume tests? And if your bloodvolume is significant lower, isn't that an important medical finding?
     
  6. lnester7

    lnester7 Seven

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    Yes I got one done. I have low blood volume but under control w florinef+ electrolytes. I think it is recognized of a subgroup w low blood volume.

    The issue is the treatment for POTs is tricky and apparently the type does not help to predict to the treatment you will respond to. So is cheaper to try different things and see what works for you.

    They put me on beta blockers which helps fatigue A LOT + Florinef + midodrine+Compression. I do not have neuropathy (tested negative).

    I am classical ME (small white lesions in brain, Low Ts and NKs, viral reactivation hh6.... is my most problematic one).

    Just treating OI took me from bed to working full time. If I stop OI meds I am back in bed.
     
  7. Hutan

    Hutan Senior Member

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    With NSAID:
    HR and BP are nearly normal as measured when lying down for 10 minutes or more and then standing up.
    Still some dizziness and breathlessness on exertion, especially when bending down, on hot days or standing still. More energy; more time in the day when I don't have to use willpower to get up and do things.
    No sore throats; neck glands still up and tender but perhaps not as much.
    Much less muscle and joint pain as would be expected with an NSAID.
    Migraine frequency probably unchanged.
    Brain fog, visual blurriness, pins and needles, odd nerve sensations - I'm not sure yet, perhaps some improvement.
    Gastro symptoms unchanged.

    It's fairly early days still.
     
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  8. Hutan

    Hutan Senior Member

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    I tried florinef a couple of months ago. That's what prompted this BP, HR, symptom tracking.

    Florinef didn't seem to help at all. I just became bloated; symptoms didn't improve. So, yes, certainly there seem to be subgroups.

    What test did you have for neuropathy?
     
  9. JAH

    JAH Senior Member

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    I also had sudden onset CFS with flu like symptoms. After a few months, saw a doctor who cultured my throat and did test positive for strept. Honestly, my throat was not that bad, fatigue and headaches were my main problems, was surprised by the diagnosis. Given anti biotics with no effect.

    Thanks for everyone with medical knowledge for weighing in...interesting thread, J
     
    BurnA likes this.
  10. lnester7

    lnester7 Seven

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    1) I went to Vanderbuilt ohio. Some stickers that make you sweat and they measure the amount out? Or maybe that was for something else. There was so much testing that now I cant remember which was which. By the third day I was an autonomic mess. I mean shaking uncontrollably like when you crash and I was in and out.

    2) for florinef to work u need time, water A LOT + salt.
     
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  11. Snookum96

    Snookum96 Senior Member

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    I just just dx POTS and this is what happens to me.

    Supine I am about 110/70 and 80bpm

    After a couple minutes of standing I am at 95/85 and 130bpm.
     
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  12. Bob

    Bob

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    I can't remember if we sorted the details about future webinars in the end, but this is from the Solve ME/CFS newsletter...
     
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  13. Bob

    Bob

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    I wrote this very brief outline of the video for someone, and i thought it might be of interest to others, so i'll post it here.
    I've only watched the video once, and the details weren't always very clear, so i may have got the odd detail wrong... corrections are welcome...

    There wasn't a great deal new in the video, but there were some interesting snippets about his ongoing research. Alan highlighted two or three papers that have found the same autoantibodies in CFS patients (autoantibodies to beta adrenergic receptors), and he seems quite interested in doing research in relation to these autoantibodies. He also mentioned a study that he's doing whereby he has sent blinded blood samples to another researcher to detect autoantibodies in CFS patients. This could be interesting if it gives positive results, but he didn't give us any details. And then, finally, he discussed his latest gene expression research that looked at the gene expresssion of CFS+fibro (comorbid - not CFS by itself) and fibro patients after exercise when taking placebo or pregabalin (he's also interested in gabapentin). For the responders to the drug, he demonstrated that the drug approximately normalised the genetic response to exercise, for a small selection of genes. (Possibly just two or three genes of interest.) i.e. the drugs correct the gene expression response to exercise, and improve symptoms. This was quite interesting because it shows that the response to treatment is accompanied with normalisation of some biomarkers. For the non-responders to the drug the gene expression was out of whack. I'm not sure where he's going with this research, or what benefits there may be for patients, but it's quite interesting nonetheless.
     
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  14. Sidereal

    Sidereal Senior Member

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    How long are you able to remain upright with that pulse pressure of 10 before you feel you're going to collapse?
     
  15. Snookum96

    Snookum96 Senior Member

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    I feel like I'm going to collapse before it gets that low. If I'm standing still I feel as if I will collapse in less than a minute. I've never actually passed out I just sit on the ground wherever I am.

    The tilt table test wasn't as bad as normal standing I found because I was leaning back into the table and it was only at 60 degrees. Standing freely in one spot is the worst.
     
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  16. Gemini

    Gemini Senior Member

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    Not a correction, an addition:

    Talking about molecular mimicry & Strep A Dr. Light said they were also looking at the MHC gene mechanism which distinguishes self from non-self & is supposed to screen out autoantibody formation.

    Correct me but I thought he said it may be a combination of those two factors -- molecular mimicry + MHC defect--at play in a subset of ME/CFS patients? Thoughts @Jonathan Edwards?
     
    Bob likes this.
  17. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    The MHC is the mechanism that would be in play for molecular mimicry or more generally failure to screen out autoantibody. It is part of the same story. Moreover, the bit about MHC was, if I remember rightly, one of the places where Dr Light got his immunology wrong, or at least muddled.
     

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