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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. H

    P2P workshop Dec. 9 & 10, 2014

    Our illness should be called by it's correct name, CFIDS. Our false advocacy group, the CAA/SMCI, Pandora, WPI don't even call it that anymore, and that lumps us in with general everyday fatigue. Those groups need to step aside, and quit hindering our already rocky road.
  2. H

    Another CFSAC Violation- Jennie Spotila

    Our patient advocacy groups won't be judged kindly either. Namely the CAA, Pandora and WPI.
  3. H

    CFSAC December 3 and 4 2014 - registration now open

    CFSAC is set up in this workshop. This all started with the Sebelius of the HHS, ignoring the advice in the experts letter. They want to shut the door on ME/CFS. There is so much secrecy and deceit, going on behind the scenes, to keep patients sick. We need a Whistleblower badly.
  4. H

    CBT is a scam and a waste of money

    Two of our Government Puppet Advocacy Groups, Solve CFS/SMCI and Pandora are echoing those researchers who say that CBT, GET and Anti-Depressants are the way to treat CFS patients. We do not need groups like that claiming to represent patients best interests. If they keep doing this to us, they...
  5. H

    Mikovits to publish book

    No, he's not, and equally disturbing is how he convinced a judge to illegally jail and innocent scientist. Greed, money and corruption doesn't have to play by the rules. The real criminal is in jail.
  6. H

    Federal Court Awards 137,147$ in Attorney fees to Jeannette Burmeister

    This is a major victory for ME/CFS patients all over the world. Hopefully, it makes the government take us more seriously. Also, there is no mention of this victory from our sham advocacy groups, CAA/SMCI or Pandora. Nothing but crickets chirping. LOL
  7. H

    CDC Multi-site Study - An interview with Beth Unger

    Dr Beth Unger refuses to remove the CDC's outdated "toolkit", and she has refused to recognize the CCC definition of CFIDS. Maybe if they did one of these two things, the CDC could be taken seriously.
  8. H

    New MECFS Alert - Episode 69 pt 2 - Carol Head of SMCI (CAA)

    Carol Head's expertise is in marketing, schmoozing, etc. The first years of CFIDS/CAA with its founder, Marc Iverson was all about the patient & ME/CFS. The CAA/SMCI is now a puppet organization of HHS/NIH/CDC, and are a disgrace to the ME/CFS population. All they want is their seat at the...
  9. H

    NICE remove M.E. from neurological listings (UK)

    NICE has never been interested in evidence of abnormalities in ME/CFS
  10. H

    Jeannette Burmeister acquired foia document re. P2P

  11. H

    Jeannette Burmeister acquired foia document re. P2P

    After this anti-science, P2P Workshop is over, we should know who some of the real crooks are. The ones who claim that we can be cured with Anti-depressants, and CBT/GET. We already know that CAA/SMCI, Pandora/WPI are only looking out for themselves, and to hell with the rest of us. Real nice...
  12. H

    American Psychological Assoc. ME/CFS feature article 10 2014

    Isn't Leonard Jason going to speak at the charade called P2P ? If so, it's sad to see reputable researchers lending and credence to that NIH circus
  13. H

    Laura Hillenbrand in Elle, on CFS

    I would trust the National CFIDS Association to be our voice, instead of Solve CFS, which self appointed themselves to speak for us. At least in my opinion.
  14. H

    Laura Hillenbrand in Elle, on CFS

    The CAA, formerly know as CFIDS Assoc, helped Wm Reeves of the CDC attain whistleblower status. Also, the CAA doesn't even refer to our illness by its proper name, CFIDS.
  15. H

    Laura Hillenbrand in Elle, on CFS

    It's disappointing that Lauren HIlldebrand is a supporter of Solve CFS/ME. They a part of concerted effort to bury CFS patients even further with their support of the IOM and P2P.
  16. H

    "How to kiss $200 million goodbye - report decries state of ME/CFS research"

    Nielk, I totally agree with you about Solve ME/CFS. Personally, I don't want them to speak on our behalf. They have become too chummy with the CDC/NIH, and they have Suzanne Vernon spouting her propaganda, that sounds just like William Reeves rhetoric. A real patient org would call our illness...
  17. H

    "How to kiss $200 million goodbye - report decries state of ME/CFS research"

  18. H

    Tweets on talks on CFS by Peter White, Julia Newton & Alastair Miller

    I wouldn't count on our so called patient advocacy groups like the CAA/Pandora/ WPI speaking up on our behalf. They are in cahoots with the NIH/CDC/HHS in trying to kill any meaningful research for CFS/ME patients
  19. H

    The Pathway to Prevention (P2P) for ME/CFS: A Dangerous Process

    Is anybody surprised that our so called patient advocacy groups, Pandora, the CAA and their new pals WPI have endorsed the P2P and the IOM ? I'm not surprised the WPI jumped on board, since their founder is a convicted felon, and they ripped off patients with their bogus tests.
  20. H

    ME patient found dead of heart failure and malnutrition

    The Coroners report about Mr Hancock dying from natural causes is total b.s. CFIDS/ME patients are more susceptible to undetectable and untreatable cancer, and other cardiovascular diseases.
  21. H

    The Pathway to Prevention (P2P) for ME/CFS: A Dangerous Process

    The NIH must think that patients have really short memories, of what the NIH and CDC have done to us over the past 30 years, and are willing to forgive and jump on board with the P2P Workshop. This also applies to our so called patient advocacy groups, The CAA and Pandora are too chummy with the...
  22. H

    Any Other Male CFS Patients have Male Andropause along with CFIDS ?

    No, it hasn't helped my sleep unfortunately. Your right about GH being produced at night. Dr P checks my blood regularly to make sure nothing bad is happening.
  23. H

    Any Other Male CFS Patients have Male Andropause along with CFIDS ?

    Undcvr, I'm concerned too about what the HGH Injections could be doing to my liver and kidneys. No, I've never tried Pregnegolone. I will ask Dr. P about that when I see him in Oct
  24. H

    Any Other Male CFS Patients have Male Andropause along with CFIDS ?

    Heapsreal, I'll have to ask Dr P about Peptides. Thanks for the suggestion. I know that Dr. P does have some patients who don't have CFIDS, come to him for anti-aging injections.
  25. H

    Any Other Male CFS Patients have Male Andropause along with CFIDS ?

    No, your not repetitive, I just hit post too fast. lol Yes, the MRI & Spinal Tap were mandatory for the Stim Test. An endocrinologist may not recommend a Spinal Tap. Dr Peterson wanted to do a process of elimination when he had me do the MRI & Spinal Tap. My HGH dose is 0.04 ml, which is...
  26. H

    Any Other Male CFS Patients have Male Andropause along with CFIDS ?

    I think my CFS was from having Pharyngitis, almost every year from 1990-99. It's like a severe strep throat. My last bout with Pharyngities, took me almost 3 months to recover from, and I had the constant feverish feeling, and low energy production.
  27. H

    Any Other Male CFS Patients have Male Andropause along with CFIDS ?

    It was only after the initial shot, unfortunately. But, my nightly HGH injection does help me with low energy, and muscle pain and cramping that come with our illness.
  28. H

    Call to Action: Include Ampligen in 21st century cures legislation

    No, I don't think it is available on the CFIDS webpage. There is another CFIDS group called National CFIDS ASSOC or NCF for short, and that's where I got it from. It might be available to Yahoo or Google it.
  29. H

    Any Other Male CFS Patients have Male Andropause along with CFIDS ?

    Hi Gingergrrl, Before Dr Peterson had me do the Stim test, he requested that I have and MRI & Spinal Tap done to rule out a brain issue as the cause of low HGH. Yes, I have to inject myself daily before bed time, and I would recommend them. I haven't had any side effects, and this is my 6th...
  30. H

    Call to Action: Include Ampligen in 21st century cures legislation

    Barb, I wasn't trying to second guess your suggestion for patients to prod Congress to help get Ampligen approved. I just read an article about Ampligen in the National CFIDS Association's newsletter, and they mentioned the FDA quote.