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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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Search results

  1. SK2018

    How to tell if an Autoimmune process is driven by B cells or T cells?

    Yes , And better from ATG Ale-mtuzu-mab Or cyclophosphamide Likely T cell mediated also.
  2. SK2018

    How to tell if an Autoimmune process is driven by B cells or T cells?

    FACS ASSAY flow cytometry test for Lymphocyte subsets ,remember a B cell can't make an antibody without a T cell allowing it to do so and in many cases "instructing it" to do so ,usually both are involved.
  3. SK2018

    New Test can detect Among a Vast Range of Infections

    one has a CFS diagnosis , other had undiagnosed neuro symptoms
  4. SK2018

    New Test can detect Among a Vast Range of Infections

    Agreed
  5. SK2018

    New Test can detect Among a Vast Range of Infections

    CSF , but I think serum can be used also ,both are most comprehensive though.
  6. SK2018

    New Test can detect Among a Vast Range of Infections

    "2 people I know have already had this done last week still awaiting results" ARTICLE A genome sequencing test developed at UC San Francisco that can rapidly pinpoint the cause of a bacterial, viral, fungal or parasitic infection from among a huge range of possibilities is now available to help...
  7. SK2018

    Simple test to check immune system function

    My FACS (flow cytometry) was done in Europe ,but I also had one done in uk via Bupa ,was about 200 quid for the test a neuro or immunologist ,oncologist can order it.
  8. SK2018

    Simple test to check immune system function

    The National Hurt Service likes to fob people off ,it's cheaper to send people with rare illnesse to shrinks.
  9. SK2018

    Simple test to check immune system function

    The way I look at it is any markers we find guide treatment choices better even if it's just us "experimenting" ,I mean If cytokines are all up then there are things that can suppress that both pharma and herbal ect ,it's better than going in totally blind anyway. heyb
  10. SK2018

    Simple test to check immune system function

    I did it privately. d it
  11. SK2018

    Simple test to check immune system function

    Some members here have wondered if they have underlying immunological abnormalities,there is a reasonably simple to perform test that can be done to look for such though. How to find out if you have some immunological issues with your immune cells then ? including B, NK and T cells ect ? ...
  12. SK2018

    How I found the underlying cause of my CFS--anti NMDA antibodies

    Far far cheaper that's for sure..
  13. SK2018

    Have you checked for Empty Sella ?

    since a lot of evidence before states ME ,CFS has issues with the HPA axis which includes the pituitary gland I wonder if anyone has had an MRI and seen that their pituitary gland is damaged ..? either enlarged ,flattened like a pancake or have " an empty Sella" ? It is sometimes missed or...
  14. SK2018

    How I found the underlying cause of my CFS--anti NMDA antibodies

    Anyone know how to change name here ? Can't see in settings ,need privacy or its making me aprehensive to post updates as snooping eyes of insurers ect can track my stuff.
  15. SK2018

    How I found the underlying cause of my CFS--anti NMDA antibodies

    I'll make a new thread soon just getting over a bad flu
  16. SK2018

    How I found the underlying cause of my CFS--anti NMDA antibodies

    About 30k yuan for 5 days 3600 bucks
  17. SK2018

    How I found the underlying cause of my CFS--anti NMDA antibodies

    Not at all brain on fire is actually a bit A typical it was more sub acute in me
  18. SK2018

    There will never be a cure for CFS...

    Curing cancer would be bad business for pharma
  19. SK2018

    How I found the underlying cause of my CFS--anti NMDA antibodies

    .
  20. SK2018

    MUS, PPS services and IAPT integration into NHS primary care - what's happening across the UK?

    The NHS Never stop the surprises
  21. SK2018

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Yes can have with or without
  22. SK2018

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    He is a professor of radiology ,charges about 200 to read scans so I've heard.
  23. SK2018

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Francis smith at the london Center is skilled at picking up CCI nicid
  24. SK2018

    SOME ME relieved by treating cervical spine

    ARTICLE LINK https://link.springer.com/article/10.1186/s12967-018-1397-7
  25. SK2018

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    I personally know of 2 people that for years had a CFS diagnosis and were finally found to have a chiari malformation and their issues resolved after minor surgery. The symptoms of chiari are almost identical to CFS. Just a thought...
  26. SK2018

    How I found the underlying cause of my CFS--anti NMDA antibodies

    I would not fear PLEX it was so benign for me, also now I don't react as than RTX ,well of course I am better than the past at least.
  27. SK2018

    How I found the underlying cause of my CFS--anti NMDA antibodies

    It might be worth looking up "Photopheresis" it's a safer more effective long lasting form of plasmapheresis.
  28. SK2018

    How I found the underlying cause of my CFS--anti NMDA antibodies

    About 30k RMB (Chinese Yuan)
  29. SK2018

    How I found the underlying cause of my CFS--anti NMDA antibodies

    Some people instead of getting "outbreaks" get "inbreaks" the latter being more concerning
  30. SK2018

    How I found the underlying cause of my CFS--anti NMDA antibodies

    Rituximab is well tolerated in the CSF and Brain ,some people have had CSF infusions of 10mg RTX, thus I would not worry about any seeping through the dura. But surely a CSF test is indicated I mean you got HSV 2 then developed chronic brain issues ,if that's not a good indication I don't know...