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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. GalaxiiGrl

    Interview with Dr. Mark Vink (English version)

    I was the other “named” editor.
  2. GalaxiiGrl

    Nutcracker Syndrome (Pelvic Congestion Syndrome) – Linked with POTS and childhood CFS

    Yes, that's what I meant. :) Thank you very much for this information! I definitely have some reading to do. ETA: It's so disheartening that most doctors would never, ever think to check for these things. I had to bring up the question of MALS with my cardiologist after doing my own research...
  3. GalaxiiGrl

    Nutcracker Syndrome (Pelvic Congestion Syndrome) – Linked with POTS and childhood CFS

    You know that phenomenon when you first encounter a word or term that you've never heard of before in your entire life, and then it shows up again shortly after in a seemingly unrelated way? I just had an MRI on Thursday to check for Median Arcuate Ligament Syndrome (MALS), which is also common...
  4. GalaxiiGrl

    Webinar with Dr Unger from the CDC Sept 8

    You hit the nail directly on the head right here. I've thought this for a while now, as well. This is exactly why the CDC simply refuses to change their narrative of CFS as one of a group of "fatiguing illnesses" and continuing to use the Fukuda definition, which emphasizes fatigue. They plan to...
  5. GalaxiiGrl

    Rod's back! Coverage in The Spectator, 2nd November

    I've long suspected that at least some of the BPS researchers and journalists who are claiming that ME patients' response comments are "abusive" are suffering from some form of narcissistic personality disorder. From the Mayo Clinic's website: "Narcissistic personality disorder is a mental...
  6. GalaxiiGrl

    Sir Simon defends the newsletter. On Twitter

    I just read Wessely's tweets from the last few days. He is CLEARLY getting desperate and grasping at straws. David Tuller is doing a fantastic job of shutting down his nonsensical attempts at defending PACE. Wessely is becoming laughable. :rofl:
  7. GalaxiiGrl

    New Fluge & Mella rituximab study: post MEDIA LINKS here

    Wessely's quote is very sneaky, I think. He's not admitting to being wrong at all. In his mind, he has ALWAYS taken ME patients seriously.... as people suffering from a psychosomatic illness who just need CBT and GET to be cured. Especially important when taken together with his recent crowing...
  8. GalaxiiGrl

    Studies about negative consequences of psychogenic diagnoses - help?

    Someone on PR posted a link to this article a few months back, which I found useful enough to save. It has a long list of references at the end, some of which look like they may be relevant to your research: http://mpkb.org/home/alternate/psychosomatic Edited to add: This study, found in the...
  9. GalaxiiGrl

    Psychology Today Opinion piece regarding the IOM release

    If I were this man's employer, I would seriously be concerned that a pathologically delusional person was working for me and interacting with fellow employees and students. Really, insisting that the powerful ME/CFS patient lobby managed to coerce the otherwise esteemed IOM into conducting this...
  10. GalaxiiGrl

    Washington Post -- CFS is NOT a psychological illness!

    Quote from the article: "Treatments can include drugs such as anti-depressants and sleeping pills; gentle exercise and psychological counseling; and lifestyle changes such as limiting stress, caffeine, nicotine and alcohol." I haven't read the IOM report yet (it looks like it's over 300...
  11. GalaxiiGrl

    New PACE paper, more SMC spin.

    Nice try, but you don't see CBT and GET listed on the CDC website as the only appropriate treatments for cancer or MS, do you? Sheesh, it's like these people are in a cult.
  12. GalaxiiGrl

    CFSAC Meeting Scheduled for January 13, 2015

    One committee member, Elisa ?, is concerned that the recommendations that health care providers need to be educated in active listening skills would offend doctors. Yes, my number one concern here is hurting their delicate doctor feelings.
  13. GalaxiiGrl

    CFSAC Meeting Scheduled for January 13, 2015

    The committee just spent time wordsmithing their recommendation for how to word the section on excercise therapy. It would have been better if they had said that exercise is not an appropriate therapy in any way. It won't improve the symptoms of a person with ME, so why recommend it at all...
  14. GalaxiiGrl

    CFSAC Meeting Scheduled for January 13, 2015

    Anne Keith's statement on behalf of Deborah Waroff was cut off, blamed on bad reception. "In the interest of time" they moved on to Robert Miller's statement, in which he is singing the report's praises.
  15. GalaxiiGrl

    CFSAC Meeting Scheduled for January 13, 2015

    A live operator came on the line to ask for the passcode and for my first and last name with correct spelling.
  16. GalaxiiGrl

    The P2P Draft report is out

    I think that PEM, (or PENE) has been found to be exclusive to ME, while the other symptoms (pain, digestive problems) are not. Therefore, if a patient has PEM, he/she almost certainly has ME. If a patient does not have PEM, he/she most likely has a different illness. If the patients without PEM...
  17. GalaxiiGrl

    The P2P Draft report is out

    Snowathlete, I want to preface my response with a declaration that anything I say is not personal, and is not intended to start an argument. Not that you've given me any reason to believe you may assume so, I just want to be sure to avoid getting into a potentially stressful situation. That...
  18. GalaxiiGrl

    The P2P Draft report is out

    I don't think anyone is suggesting that people without PEM should have less attention paid to their problems than those with it. The point is that people without PEM likely have a different illness than those with it, and should not be lumped together into the diagnosis of ME (or ME/CFS or...
  19. GalaxiiGrl

    The P2P Draft report is out

    I don't have any interest in blood. I just want to feel well after 22 years of being ill. I am hurt by the abuse we have suffered by HHS. I don't think it's unusual or unreasonable for a victim of abuse to lose all trust in his/her abuser's recurrent yet unmet promises to reform.
  20. GalaxiiGrl

    The P2P Draft report is out

    Mary Dimmock has left a comment on Jennie Spotila's blog post that expresses some of the issues that I'm concerned with in a much more eloquent manner than my fog-addled brain can manage. Mary says, "Thank you for this, Jennie. I agree with you. You could drive a truck through the loopholes in...
  21. GalaxiiGrl

    The P2P Draft report is out

    The problem here is that they didn't specifically say that PEM needs to be a required symptom in the case definition. As we've seen in the past, NIH has no problem with ignoring any "suggestions" that are made, even those by their own CFSAC committee. Subtly is definitely lost on them. I just...
  22. GalaxiiGrl

    The P2P Draft report is out

    "Even if it is not perfect"??? How condescending. Considering how abysmally the NIH has treated patients over the last 30 years, they absolutely owe us nothing less than perfection. Of course, this is their way of saying that the Fukuda definition, while not "perfect" in that it doesn't require...
  23. GalaxiiGrl

    P2P workshop Dec. 9 & 10, 2014

    It ended with Paris Watson announcing that the preliminary report will be published on the NIH website on Thursday, Dec. 18th. They will accept comments on it for 30 days. The final report will be published some time in February.
  24. GalaxiiGrl

    P2P workshop Dec. 9 & 10, 2014

    I do wish Dr. Green would stop trying to make jokes and be funny.
  25. GalaxiiGrl

    P2P workshop Dec. 9 & 10, 2014

    Though I noticed that Smith didn't use the name "PACE" when referring to the trial. She just called it a large trial, and went on to mention the problem with them lowering the threshold for the SF-36 score required for "recovery" to a level that was lower than what was required to be included in...
  26. GalaxiiGrl

    P2P workshop Dec. 9 & 10, 2014

    You can cure your ME/CFS at home with booklets and CDs!!
  27. GalaxiiGrl

    P2P workshop Dec. 9 & 10, 2014

    Fred Friedberg's presentation (maladaptive behavior) doesn't seem to fit in with Snell's and Kogelnik's. Edit: treatment at a "community mental health center....." Whoops, I mean community health center. Freudian slip there, Friedberg?
  28. GalaxiiGrl

    P2P workshop Dec. 9 & 10, 2014

    Notice the speakers' responses to Jennie Spotila didn't address her comments saying that the NIH has been denying CFSAC's recommendations to fund this type of research for years.
  29. GalaxiiGrl

    P2P workshop Dec. 9 & 10, 2014

    I don't understand how comorbidity studies can be helpful here when they haven't yet satisfactorily defined the main illness of ME/CFS. First get the definition sorted out (ideally adopt the CCC), do some quality studies on ME/CFS using that definition, and maybe EVENTUALLY comorbidity research...
  30. GalaxiiGrl

    P2P workshop Dec. 9 & 10, 2014

    Hah, Carmen Green: "...people living with CE, uh, whatever, I get all of these things mixed up...."