• Welcome to Phoenix Rising!

    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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Search results

  1. nanonug

    Does recovery after CCI/AAI surgery exclude an ME/CFS diagnosis?

    I suspect that most studies wouldn't be able to segregate all subgroups anyway given the amount of people they typically enroll. Having one or two people in a subgroup very much kills any hope of achieving statistical significance. Not to mention that most researchers would probably not have the...
  2. nanonug

    Does recovery after CCI/AAI surgery exclude an ME/CFS diagnosis?

    If CCI were the novel mechanism behind SEID/CFS/ME, then the latter would no longer be a disease, it would simply be a set of symptoms associated with CCI. The disease would simply be CCI. If this turns out to be the case, then mostly likely I was misdiagnosed with CFS as I don't think I have CCI.
  3. nanonug

    Does recovery after CCI/AAI surgery exclude an ME/CFS diagnosis?

    Not necessarily. If a novel mechanism is behind SEID/CFS/ME then that will define the disease. But I doubt it will be called any of the current three acronyms. Not really. You'd simply rename the disease to something more appropriate. Simply, "the disease previously known as SEID/CFS/ME is now...
  4. nanonug

    Does recovery after CCI/AAI surgery exclude an ME/CFS diagnosis?

    It has been a terrible problem for the people that were misdiagnosed. Instead of getting the treatment they needed, they ended up with a label that, as of today, is still a medical cul-de-sac. For those who were finally correctly diagnosed with CCI, I'm happy for you. Also, envious. Assuming...
  5. nanonug

    Abnormal blood lactate accumulation during repeated exercise

    This is consistent with the finding of pyruvate dehydrogenase inhibition in people with SEID/CFS/ME. Hopefully, someone will eventually stumble on the cause behind this.
  6. nanonug

    How can I truly know if I have ME/CFS?

    Until (and if) there is a marker, we don't. This is what happens to "normal" people. But if it happens much sooner in your case, there might be some pathological condition at work. But given you don't have PEM, I'd say it's unlikely you have CFS. Of course, only a doctor is able to properly...
  7. nanonug

    purine SNP

    I'm a little late to the party but I am also a proud carrier of the same rs2660744 variation (x2).
  8. nanonug

    Big Data App to Explore Genomes for Clinical Relevance, Rare Variants, Drug Response, etc (Free)

    Pretty cool tool, thanks! Interesting that all of the identified "clinically significant" variants are mitochondrial.
  9. nanonug

    Can a unhealthy liver cause cognitive disturbances?

    Mildly elevated ALT has been with me since pretty much forever. The only thing that brings it down, to the middle of the range, is N-Acetyl-Cysteine. So I take 1.3g/day of NAC religiously. If one test I did several years ago is to be believed, I have intestinal hyperpermeability. My pet...
  10. nanonug

    Mild, bizarre symptoms

    Has the high iron resolved? If not, have you been tested for hemochromatosis?
  11. nanonug

    Coffee Helps Gut Motility and Suppresses Bacteria, and It's Not the Caffeine

    Venlafaxine is approved for both panic attacks and generalized anxiety disorder. The first couple of weeks were rather uncomfortable but after that it's been an amazing drug for me. It also has a mild effect on blood pressure, by increasing it, and that also appears to help somehow.
  12. nanonug

    BPC-157

    Thank you all for the info you provided on BCP-157. I've add it to my "TO TRY" list to see if it helps with my crappy intestinal function. I'll post updates once I try it.
  13. nanonug

    Coffee Helps Gut Motility and Suppresses Bacteria, and It's Not the Caffeine

    I'm the in the "I'd rather die than not drink coffee" camp. After all, what is life without pleasure? But it does exacerbate anxiety. So, what do I do? I take an antidepressant (Effexor XR) that works very well for me and completely eliminates any anxiety driven by caffeine intake.
  14. nanonug

    Does recovery after CCI/AAI surgery exclude an ME/CFS diagnosis?

    It's a fair conclusion. But let me tell you a story: My current Psychiatrist convinced me (but not without protestation) to see a Psychologist for my complain of CFS. Basically, she wanted to cover all bases and leave no stone unturned from a mental health point of view. It ended up being a...
  15. nanonug

    Does recovery after CCI/AAI surgery exclude an ME/CFS diagnosis?

    Just like I asked before, are you implying that ICC criteria lead to exactly a zero rate of false positives? OK, let me put it this way: I don't place much trust on diagnoses that rely solely on self-reported symptomatology. As of now, this includes pretty much all of Psychiatry along with any...
  16. nanonug

    Does recovery after CCI/AAI surgery exclude an ME/CFS diagnosis?

    No, of course I don't. But being wrong on one thing doesn't mean Mayo is wrong on everything.
  17. nanonug

    Does recovery after CCI/AAI surgery exclude an ME/CFS diagnosis?

    No doubt about that. Of course, the same also applies to the doctor who diagnosed her with conversion disorder. Are you implying that the current criteria catches all cases of SEID/ME/CFS with 100% certainty, with no false positives or even negatives? Well, it's a bit more than "relieved...
  18. nanonug

    Does recovery after CCI/AAI surgery exclude an ME/CFS diagnosis?

    It's certainly a possibility, particularly genetic predisposition to certain metabolic behaviors that could be identified as "SEID/ME/CFS."
  19. nanonug

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

    Beautifully done. Your post deserves not only its own thread but a sticky as well!
  20. nanonug

    Does recovery after CCI/AAI surgery exclude an ME/CFS diagnosis?

    Someone is diagnosed with condition A, for which there are no objective tests and no treatment. Subsequently, the same person is diagnosed with condition B, is treated for condition B, and goes into remission for condition B. Miraculously, condition A also goes into remission at the same time...
  21. nanonug

    Does recovery after CCI/AAI surgery exclude an ME/CFS diagnosis?

    I didn't define anything. Feel free to use whatever consensus criteria you want. The point is that a diagnosis based on self-reported symptoms isn't going to be as accurate as one based on some objective measure. At the end of the day, diagnosing anything - even those conditions for which there...
  22. nanonug

    Does recovery after CCI/AAI surgery exclude an ME/CFS diagnosis?

    Not only does the Mayo Clinic think otherwise but they are apparently able to put conversion disorder into remission: Diagnosis and Treatment for a Mysterious Illness Turn Despair Into Hope.
  23. nanonug

    Does recovery after CCI/AAI surgery exclude an ME/CFS diagnosis?

    I'm afraid I'm not part of that consensus and I find it to be, at the very least, borderline dangerous. It has the potential to include people who otherwise have treatable diseases (such as Jen), leading them to cease looking for a solution. Fortunately, in her case, she persisted. But many...
  24. nanonug

    Does recovery after CCI/AAI surgery exclude an ME/CFS diagnosis?

    Yes, just like she was falsely and incorrectly diagnosed with ME. That was my point!
  25. nanonug

    Does recovery after CCI/AAI surgery exclude an ME/CFS diagnosis?

    Inflammatory cytokines are the "messages" that trigger sickness behavior. My PEM is very close to traditional sickness behavior minus the fever.
  26. nanonug

    Does recovery after CCI/AAI surgery exclude an ME/CFS diagnosis?

    Jen was also diagnosed with conversion disorder. Presumably, she met the criteria. Is Jen, then, also in remission from conversion disorder? If SEID/CFS/ME is simply a set of symptoms and a (maybe temporary) placeholder for something else that matches those symptoms, then it's not a real...
  27. nanonug

    Does recovery after CCI/AAI surgery exclude an ME/CFS diagnosis?

    THIS THREAD WAS STARTED FROM OFF-TOPIC POSTS WHICH WERE MOVED FROM THIS THREAD: https://forums.phoenixrising.me/threads/my-me-is-in-remission.76324/ At the risk of annoying many people here, does it really make sense to continue to say one had SEID/CFS/ME when an alternative diagnosis led to...
  28. nanonug

    Imaging robust microglial activation after lipopolysaccharide administration in humans with PET.

    Yup, the distribution appears to be bimodal. Given the crappy way (pun intended) my GI system works, I wouldn't be surprised if that is the source of my CFS. It was also the clinical experience of the doctor that diagnosed me, that "CFS begins in the gut."
  29. nanonug

    Cast iron?

    No. Most of the food I eat is now cooked on cast iron cookware. It has made absolutely no difference when it comes to GI health, which has always sucked.
  30. nanonug

    Depression/CFS

    It is quite normal to have these awful side effects for the first couple of weeks, and sometimes even longer. In any case, it is always best to see a psychiatrist than a general practitioner. I take Effexor XR and Wellbutrin XL and both do wonders for my problem with anhedonia.