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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. soofke

    The PolyBio Research Initiative: New ME/CFS research from some of the brightest young minds!

    I think she sounds, and is, driven. I wish but we're with 17 million :)
  2. soofke

    fasciculations (muscle spasms) but they're also in my brain..

    well that went as usual, not unfriendly but seemed a bit bored and thought nothing of the fasciculations or whatever they are, sent him an email afterwards with pics of my inside out turned eyelid (which regular spasms wouldn't be able to do) and the same MRI but with some added contrast by...
  3. soofke

    fasciculations (muscle spasms) but they're also in my brain..

    wow you know a LOT about magnesium, there was a magnesium deficiency (which in the GP's test just showed up as a vitamin D problem), took it in every way shape or form and makes no difference to the trembling, only to my MCS but only when I added some calcium sulfate thanksies :)
  4. soofke

    fasciculations (muscle spasms) but they're also in my brain..

    merci Mel!
  5. soofke

    fasciculations (muscle spasms) but they're also in my brain..

    an MRI-nurse that happened to be in my fb group checked it out and the spot isn't worrisome but the somewhat lighter pituitary gland is, told my GP and going to the so manieth neurologist next week, wish ME luck tho nobody reads this :p
  6. soofke

    Viral entry into the brain through olfactory nerve (CNI)--latency in olfactory bulb?

    agreed
  7. soofke

    fasciculations (muscle spasms) but they're also in my brain..

    requested my MRI, inspired by Jen Brea, the pain is coming from a spot that I can't find on her or healthy MRI's
  8. soofke

    Reach for the smelling salts: New paper 2018 to prove that abnormal beliefs cause ME disability (!)

    and 'opknopen' means something we'd better not translate ;) haha @ the lunchbox
  9. soofke

    On Monday March 19 public presentation of ME report Dutch Health Council

    not completely eliminated but they sound far more reluctant about it now :woot: (haven't finished reading though) a summary https://www.facebook.com/groups/TheMEGlobalChronicle/permalink/2125548317677285/ and it's allover the news too
  10. soofke

    Reach for the smelling salts: New paper 2018 to prove that abnormal beliefs cause ME disability (!)

    cheers/proost anyway ;) and please tell me that Knoop is indeed pronounced as noob
  11. soofke

    why aren't mono patients put on anti-virals?

    because mono usually solves itself within 3 months so there's no need for meds? unless it morphs into M.E but I doubt mono can cause all this by itself..
  12. soofke

    Dr vance Spence of MERUK interviewed on Radio Scotland tomorrow 14th Feb

    :grumpy:
  13. soofke

    Interview with neuroscientist Michael VanElzakker: Vagus Nerve, ME/CFS, latent infection and more

    or a half-active infection, called a stealth virus
  14. soofke

    fasciculations (muscle spasms) but they're also in my brain..

    neh, I've spoken to enough twitching ppl to know my diagnosis is incorrect but thanks! (unless theirs make a popping sound too and release neurotransmitters)
  15. soofke

    fasciculations (muscle spasms) but they're also in my brain..

    aloha, I have ME since the dark ages and after a combo of antibiotics for mycoplasma and weird drops for ebv/hhv6/toxoplasmosis/lyme/coxsackie B (with which it al started) I've been having these odd spasms which are according to a ME specialist and a neurologist fasciculations but those are not...
  16. soofke

    "Why I put more trust in homeopathy than conventional medicine" (on CBT and GET)

    hey y'all, haven't tried it but asked on FB and got some positive feedback so will post it here, youneverknow..
  17. soofke

    Whatever happend to dr martin??

    bought the book!!
  18. soofke

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    well it is now :p
  19. soofke

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    since I seem to be overlooked on twitter, and here, I'm throwing my bodyparts in the mix ;) this is happening all along the nervus vagus or HPA-axis or whatever it's called, in my brain it's releasing neurotransmitters, it started after (alternative) treatment of several common bugs, ergo my...
  20. soofke

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    wish I could've been there, it almost sounds like fun :) now that the critters are gone I can feel (due to fasciculations) where they were located and they'd have to pick the exact right spots to biopt....1 cm to the left or right and everything's working fine
  21. soofke

    Elevated Energy Production in Chronic Fatigue Syndrome Patients

    I searched for 'warburg' and ended up here, hello! me nor my brainfog are capable of reading everyone's posts, so sorry if it has been covered yet but has mycoplasma, who can survive without oxygen, been one of the suspects for these metabolic shenanigans? since treatment my brain, throat and...
  22. soofke

    Do you take Boron with vitamin D?

    oh and add some iodine, saves a headache :ill: (back to full dose now!)
  23. soofke

    Do you take Boron with vitamin D?

    yes and the result so far is; -vitamin D works way better, while I take half the amount of before -no mouth ulcers which I've had since childhood -I didn't even notice how much hair I lost until it started growing back and now I'm slightly resembling Einstein ;o) took a full tablet for a month...
  24. soofke

    Epstein–Barr virus infection induce chronic fatigue syndrome

    yeah but áfter months of abx and the-stuff-that-shall-not-be-mentioned so every other bug was gone and just that pesky EBV remained, also I sorta kinda forgot to mention :oops: that my doc prescribed it with all of this which I don’t need either.. thanks for trying and the update ;)
  25. soofke

    Epstein–Barr virus infection induce chronic fatigue syndrome

    wow you explain it better than I can Frederic (except for the Armour which fixes a metabolic thing after any bug) and no titers since it was from a alternative practitioner, the only thing that was found by a lab was the Coxsackie B it all started with and the Mycoplasma later on, the EBV I can...
  26. soofke

    Epstein–Barr virus infection induce chronic fatigue syndrome

    it has for me @frederic83, this combined with something even more obscure that's supposed to wake bugs from their slumber and then a few months of antibiotics for the Mycoplasma that suddenly popped up would've cured me I think if it wasn't for the metabolism laying on it's ass for too long by...
  27. soofke

    Epstein–Barr virus infection induce chronic fatigue syndrome

    yes! someone who agrees and with a title no less, if a mere patient says the same then "it's all in the mind" as usual and has anyone tried Crotalus, homeopathic (don't laugh) snake venom, by any chance?
  28. soofke

    Canary in a Coal Mine becomes 'Unrest'

    well I think it's catchy(er)!
  29. soofke

    Livestreaming of Action for ME AGM and conference on Friday, 18 Nov 2016

    @Chrisb I've heard some optimistic stories about gardening :tulip:
  30. soofke

    Professor Ron Davis's response to Naviaux study, including Q and A with Dr Naviaux

    here also hardly any flu since, in my opinion, the king of flu's; m.e. but for a fair comparison we should ride as many trains and buses and hang around offices, like/as the healthy folks no metabolic issues allover btw here, just in brain & throat, few other tiny spots