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

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  1. gregf

    Dr. Paul Cheney has passed away

    This is important news. It should be in the General section or at least a link there to this thread. Dr Cheney was a giant. I think he understood our disease better than anyone on this planet. Thank you Dr Cheney for all you did and the DVDs explaining ME. They helped me win insurance claims a...
  2. gregf

    Ladies. How common is Vulvodynia in MEcfs ?

    I know a doctor who is a very good man who has been helping ME patients for many years. He has a question. How common is Vulvodynia in MEcfs patients ? Vulvodynia on Wikipedia. Feel free to DM me if you prefer. Or to use an anonymous login. (Always thought that would be a good forum...
  3. gregf

    Getting knocked down, hospital, and ME.

    Thanks for your kind wishes guys. Tania I dont think Uber is much in Adelaide yet. Uber taxi not much. AirTasker dont know. They are apps for phone/ipad. Download is free. The problem is once you're cold and feverish, you cant think to ask for warm clothes/blanket. Funny how some ME folk must...
  4. gregf

    Getting knocked down, hospital, and ME.

    Warning : description of injury. I am somewhat mobile. I can drive within my suburb and do so to get my lunch most days. Actually I feel better if I do. One day in early December 2018 I had just bought my lunch and was crossing the road back to where my car was parked. A typical high street...
  5. gregf

    2nd January: BBC article on Prince's staff member stricken by ME referes to neuroimmune disease

    This was a great story. Very sympathetic to the truth and it stayed visible in the BBC news app (worldwide) for 3 days. I hope he gets some financial and health improvement.
  6. gregf

    What is the biomechanics of the damage from overexertion

    The question has two parts : 1) What happens to our mitochindria when we overexert? 2) Over exertion, brain recovery and damage from overdoing it. The two are not necessarilly directly linked. We have a problem in the mitochondria and our body cuts off oxygen to protect us from this being...
  7. gregf

    Australian government extending age for "crackdown" on DSP recipients

    I am barely able to comment any more on Australian politics. When Julia Gillard became PM and Liberal advisor Grahame Morris was asked what would be the Lib strategy, he replied "Kick her to death". And that is what they did. The "ditch the witch" rallies were deliberate. It increases the...
  8. gregf

    Is it correct to say ME is really EDS ?

    Thank you very much everyone. That helps me greatly. -Greg. :) For the record, in the other place, I have never seen anyone in favour of GET&CBT. :woot: The patron is a newsreader only, not a personality, hardly participates in the forum, and is the best public advocate we have here. Very...
  9. gregf

    Is it correct to say ME is really EDS ?

    Hi. In another internet M.E. place, someone has a point of view that M.E. is just a form of E.D.S. and that E.D.S. has replaced M.E. The problem is that the person is posting large amounts of information about EDS in the M.E. section, and this is leaving the M.E. people there, overwhelmed and...
  10. gregf

    Mikovits radio interview Oct 7: XMRV, WPI, accusation of theft etc

    Thank you to all involved in those summaries.
  11. gregf

    CDC Interview on the CFS Toolkit

    The CDC has caused the greatest medical disaster of all time. Everything they do will be directed by lawyers to stall for time and avoid the truth. Much like the Catholic church over child sex allegations, it is pointless trying to compromise with them or get them to change. You can be sure...
  12. gregf

    Something inside so strong

    I think we should not be down about our prospects. I am pretty sure the scientific answers to ME will arrive sooner then later. Then the press will turn on Weasel and his cohort and we will be able to begin the process of legal compensation. That may take years but it will be worth it. Think of...
  13. gregf

    Fatigue Journal Take 2

    The one thing that has done the most damage over the years is the word "fatigue". No one with our disease, ME, should have anything to do with a journal called "Fatigue". And that is besides the point that it is full of psycho-social yellow flags. If AIDS had been called Chronic Homosexual...
  14. gregf

    Facebook Phobia a CFS issue?

    I have changed my advice a little regarding FB. Especially for children or any parent where children follow their example. Firstly my advice is, I dont encourage the use of FB. But if you must, create two accounts. The first has your real name and has photos of your children on the debating...
  15. gregf

    ABC World News Mentions "Chronic Fatigue"

    Perfect. Exactly right. Thank you Justin. (Where is the applause smiley?) CFS is known as a psychiatric illness. So abandon it. We have a real disease called ME. Our best weapon is to use that name. I wish the community could work together on this. Its breaking my heart every time one of us...
  16. gregf

    Catastrophic Autism Rate Now 1 in 88, 1 in 54 Boys; via Canary Party

    Be careful when talking to Aspies or Autism Spectrum Disorder people, especially parents. Some believe that it is not an illness but one end of the genetic diversity in humans. That Aspie children grow up to lead fullfing even gifted lives. Calling it an illness can strongly offend them...
  17. gregf

    Should Chronic Fatigue Syndrome be expanded to include other fatigue related..?

    Thank you for your kind words Willow. I will do as much as I can and know i am not just being ... cranky. The problem for me is, I am getting frustrated at all the people, our fellow patients who keep saying chronic fatigue. They're breaking my heart. I feel my $1600 to promote the name ME on...
  18. gregf

    Should Chronic Fatigue Syndrome be expanded to include other fatigue related..?

    This may be the last time I comment on this topic. We need to focus. Our name problem is not scientific ; it is political. The name of our illness is not a scientific issue. It is a political issue. It is not a problem, it is an opportunity. In the 1980s the gay community united to demand...
  19. gregf

    Contingency Pledges

    I am increasing my pledge to $1200 per year. Just to be clear, this is to encourage organisations and forum members here, to use the name M.E.
  20. gregf

    Pledges (moved from General Wiki Pages)

    I will match any pledged donation that Justin makes, for an organisation that changes to using the name ME, and I am increasing my limit to $1200 per year. Magnificent work Justin.
  21. gregf

    What CFS cause(s) should I donate to?

    Justin that's brilliant. I am stepping up as the 2nd person in the JR pledge fund. I will match any donations Justin makes in this pledge, with a limit of $1000 per year. Come on everyone, if you cannot afford much, do as I have done with an annual cap. To clarify my original post, I...
  22. gregf

    What CFS cause(s) should I donate to?

    In the 1980s, the Gay community worked together to have HIV and AIDS recognised and to get funding for research. They had leadership and discipline. I know a thing or two about politics and publicity and I feel the lack of leadership and discipline in our patient community who sit around...
  23. gregf

    What CFS cause(s) should I donate to?

    Please do not donate to anyone who calls our illness Chronic Fatigue, or CFS. Request that as a minimum, they call it ME/CFS, or preferably ME. We need to work together on this.
  24. gregf

    My new year's resolution 2012

    Brilliant, Dr. John, brilliant. If only more patients realised this.
  25. gregf

    Dr Ian Buttfields talk 3rd Dec 2011

    Great report thanks Tania. And its great to hear this sort of thing happening now in Aus.
  26. gregf

    Dr. Cheney Warns Against Long-term Use of SSRIs and Stimulants

    Is that date Summer 2001 or 2011 ?
  27. gregf

    Judy Mikovits has been arrested

    Missing notebooks returned to Reno chronic disease lab. http://t.co/fp1Sjaab.
  28. gregf

    (Anon poll) How many ME/CFS+related groups have you voted for in ChaseCommunityGiving

    I have worked hard and patiently to convince patients that using the name ME is an easy and effective tool to fight our cause. I have even donated money to help this. But the number of patients saying "chronic fatigue" seems to have increased. On Twitter the #CFS tag is overtaking the #MECFS...
  29. gregf

    Judy Mikovits has been arrested

    I strongly recomend that no one says anything further about the parties involved. The PR forum owners can be held responsible legally for libelous comments. So it is dreadfully unfair to them, when we make such comments. No one knows who is in the wrong. So if we don't know, then don't say.
  30. gregf

    Is it safe to have unprotected sex with CFIDS?

    This is where my engineers training kicks in. Every question has three possible answers. Yes, no, and unknown. If the answer is unknown, do not, do not allow yourself to be shifted to yes or no. If the answer is unknown, and some action is required, take the safest path. The evidence is...