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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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craniocervical instability

  1. frozenborderline

    Vision problems , most likely neurological

    Date March 20th 2022 Visual problems. Even with glasses. Double vision, nystagmus , trouble focusing totally, blurry vision. Getting headache slightly when I focus hard. I didn't really notice this when I was only scrolling on my phone and not focusing on anything for long but I think...
  2. frozenborderline

    I have Hereditary Alpha Tryptasemia , what does this mean for my care?

    I have long had sensitivities to things like mold and outdoor toxins such as Mystery toxin Hell toxin Cyanobacteria Fire Retardant Associated Toxin There was always a lot of crossover with ME/CFS as being in good air helped my PEM and energy envelope more 5han any other treatment and...
  3. frozenborderline

    Polybio (small org founded by michael vanelzakker and amy proal) has announced first cci study in ME/CFS

    Here's the tweet announcement. I expect lots of discussing about this , its very exciting news , but I am concerned they are not using upright mri if I read btwn the lines. (Upright mris in 7Tesla dont exist I think, not even in 3 tesla) Anyway I will post my thoughts about this in a...
  4. frozenborderline

    A show that the 4radical theatre company bread and puppet did, based on my suffering with ME/CFS

    Please watch if you can
  5. frozenborderline

    Bpc157 side effects.

    D-- heard bpc does weird dopamine stuff tho like adhd meds wont work post-BPC A Ugh bro this meme is fucking with me Its said 5o apply to opioids and coffee , I need to fix my ligaments but I also need analgesia especially if it doesnt fully work So that idea is disturbing Besides long...
  6. frozenborderline

    My grand theory of etiology part II

    I've posted my unifying theory of etiology before. But part II is not quite done yet, however it has a lot of the parts there, just not all there, and not assembled properly or in order, so I've decided to kick off working on assembling it by posting about it here. None of the parts by...
  7. frozenborderline

    ME/CFS "theory of everything" Etiology

    https://walkerstorz.com/me-cfs-etiology/ This isnt the final form of the theory. I have three substantial parts to add, and it will become even more big and unwieldy. :) But I think that its substantial enough that I may as well put it out there for now. @Hip I referenced your dual factor...
  8. Joel98

    Indirect ME/CFS improvement possible through more testosterone?

    Hello, I would like to test Clomid / Clomiphene for my low hormone levels. (I have made a detailed post in the hormone thread at the same time) I ask myself the following, in addition to the possible improvement in symptoms due to the hormone deficiency, is it possible that more / a lot of...
    • Joel98
    • Thread
    • collagen craniocervical instability immune modulator low testosterone testosterone
    • Replies: 5
    • Forum: General Treatment
  9. sb4

    Signs of Intracranial Hypertension, Hypermobility, and Craniocervical Obstructions in Patients With ME/CFS

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7485557/ Just read the abstract. Seems like CFS patients has significantly more spine/brain issues that the general population. It seems they picked a random bunch of people with CFS but I am not sure, it says the study population was referred to...
  10. frozenborderline

    ME/CFS "theory of everything"/etiology

    Here's a draft I'm working on regarding me/cfs etiology. Would love any feedback. It's not entirely novel, draws on theories by Jeff, jen brea , Erik Johnson, and @Hip https://docs.google.com/document/d/1MnGJs4IzeFi44r_JkEgw5zUEiHF9CRsLCBT7t9umDKE/edit?usp=drivesdk
  11. J

    #MEspine hashtag

    Just FYI, I’ve started a new hashtag on Twitter, #MEspine: https://twitter.com/hashtag/MESpine I know a lot of folks on PR aren’t on Facebook, where a lot of the EDS, tethered cord, Chiari, CCI/AAI, etc. groups are. Hopefully this will make it easier to follow research and patient stories. Most...
  12. B

    Determining the safety of cervical traction: How do you choose a good PT?

    As many of you may know, Dr. Bolognese requires that you report dramatic and immediate positive results from a trial of cervical traction before being accepted as a patient for CCI. Many have already reported dramatic and instantaneous positive results from cervical traction. It seems that if...
  13. B

    My MRI imaging for CCI evaluation

    Okay, so I've got the full set of flexion, extension and neutral MRIs. It would be really cool if @jeff_w, @JenB and @Hip could give their opinion. :) From my amateurish analysis, a lot of the measurements seem borderline or pathological: CXA in neutral is around 139 degrees, which is...
  14. Hip

    CCI SURVEY – for all ME/CFS patients tested for CCI and related conditions (please answer whether tested positive or negative)

    Craniocervical Instability, Chiari and Spinal Stenosis Survey For ME/CFS patients diagnosed positive or negative for CCI and related conditions This survey is for ME/CFS patients who sent their MRI or CT scan to Dr Gilete, Dr Bolognese, Dr Henderson, Prof Smith or another neurosurgeon and...
  15. necessary8

    The RBC-NOX hypothesis

    The RBC-NOX hypothesis Hello again, everyone. Welcome, to the RBC-NOX hypothesis, which I consider by far my best idea yet. It connects the IDO metabolic trap, red blood cell deformability, craniocervical instability (including recoveries after surgery), Alan Light’s research on fatigue...
    • necessary8
    • Thread
    • craniocervical instability exosomes ido metabolic trap lactate mold nanoneedle plasma switch red blood cell deformability
    • Replies: 59
    • Forum: General ME/CFS Discussion
  16. A

    Finding a Facility for CCI Imaging

    Hi! Has anyone ever compiled a resource of imaging facilities that have a 3T machine and could perform the upright MRI to determine if a patient has CCI? Or does anyone know of any/how I could go about finding one? Dr. Chheda is considering writing the MRI order for me, but let me know that I'd...
    • ashleyO
    • Thread
    • 3t machine cci craniocervical instability imaging mri upright mri
    • Replies: 5
    • Forum: ME/CFS Doctors