• 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.

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

Search results

  1. L

    Online Participants Needed for Dr. Klimas' ME Gene Study

    Jenny, There are numerous options for which genetic test you can take. the majority of the patients in Klimas' study are doing the 23andme. Yes there was in fact a price increase do to a new FDA ruling giving them permission again to offer more but not all medical correlations. The FDA has now...
  2. L

    Online Participants Needed for Dr. Klimas' ME Gene Study

    I am Klimas' lead patient advocate for this study. That image posted above is mine as I created it, but placed her by another as I asked for it to be shared. Personally I emailed them a few days a go and the link arrived where you respond. As Klimas is my expert, I was able to get past the first...
  3. L

    Klimas’s 23andME Research Tribe - for PWME to share 23andME results with Dr Nancy Klimas

    GOAL: 10,000 genetic international profiles submitted from ME/CFS and Gulf War Syndrome patients. I believe many people with POTS, LYME, FIBRO would all be included as she needs a HUGE genetic base to sort the details from. Klimas' video...
  4. L

    Klimas' ME/CFS 23andME Research Tribe

    GOAL: 10,000 genetic international profiles submitted from ME/CFS and Gulf War Syndrome patients. I believe many people with POTS, LYME, FIBRO would all be included as she needs a HUGE genetic base to sort the details from. Klimas' video...
  5. L

    An Activity Management Program... ME/CFS SAFE EXERCISE GROUP

    I am sorry but no....
  6. L

    An Activity Management Program... ME/CFS SAFE EXERCISE GROUP

    let me clarify.... deconditioning... All the experts warn against that and maybe I should have stated it better... deconditioning is a dangerous downhill spiral... sorry about word choice... also I see the doctors using MOVEMENT as an offset to exercise because people understand "movement" and...
  7. L

    An Activity Management Program... ME/CFS SAFE EXERCISE GROUP

    Thank you sweetheart.... did you see how fast the group is growing? 256 in four days!
  8. L

    An Activity Management Program... ME/CFS SAFE EXERCISE GROUP

    Stacie Stevens Exercise Physiologists will be speaking today by web connection on exercise testing and how to exercise safely with ME/CFS. There are 3 doctors speaking total. The price is 10 Canadian dollars... YOU MUST SIGN UP and PAY ONLINE... I paid and am registered.... WHO'S COMING...
  9. L

    An Activity Management Program... ME/CFS SAFE EXERCISE GROUP

    Come and peek if you want... If you don't like it then leave the group.... kisses from Italy
  10. L

    An Activity Management Program... ME/CFS SAFE EXERCISE GROUP

    Judy... thanks for your kind words... WE LOVE HAVING YOU IN OUR GROUP! I loved a YouTube miniTrampoline video for you as after you commented on what you were doing.... people are now asking... THANK YOU!
  11. L

    An Activity Management Program... ME/CFS SAFE EXERCISE GROUP

    https://www.facebook.com/groups/mecfssafeexercise/ Come on over.... we are waiting for you!
  12. L

    An Activity Management Program... ME/CFS SAFE EXERCISE GROUP

    Klimas' exercise person Conni Sol, even at under a 6 wants you resting heart rate established. If you are going to vacuum, standing to cook a meal, walking, carrying groceries or anything... she suggest wearing your heart rate monitor. Once you VO2max is established, then you have target heart...
  13. L

    An Activity Management Program... ME/CFS SAFE EXERCISE GROUP

    Did you join Ally? Come on over... a lot of people do stretching on the floor, in their bed... breathing exercises....
  14. L

    An Activity Management Program... ME/CFS SAFE EXERCISE GROUP

    Thank You Judy!!!!!!!!!!!! We ME/CFSers need love!!!!!!!!!!
  15. L

    An Activity Management Program... ME/CFS SAFE EXERCISE GROUP

    Judy.... come on over....
  16. L

    An Activity Management Program... ME/CFS SAFE EXERCISE GROUP

    https://www.facebook.com/groups/mecfssafeexercise/ ME/CFS SAFE EXERCISE GROUP Do you have a ME/CFS specialist - expert? Are you on a viable treatment plan by a professional? Have you had a V02 max test done? Have you been do some type of appropriate exercise activity management plan? Have you...
  17. L

    Dr. Pridgen's 9 different cocktail mix patents & research under Dr. Carol Duffy name

    No... I am finally getting on Klimas' protocol to work out.. and I could not find a ME/CFS workout partner. I started the group yesterday and 180 people joined and they are buzzing around with what they have learned to do do cope with sneaking in safe exercising... I AM SO IMPRESSED with them...
  18. L

    Dr. Pridgen's 9 different cocktail mix patents & research under Dr. Carol Duffy name

    The latest I read is that Pridgen found two different cocktail mixes that work (like I said one better and then a 2nd back up one) and they will be available in THREE YEARS he just said again.... or you could try what I wrote about above before too many "not know it alls" started saying WAIT...
  19. L

    The third (second open) IOM meeting May 5th

    GREAT JOB!!!!!!!!!!!!!!!!!!! GREAT FIND!!!!!!!!!!!!!! Written by apro!!!!!!!!!!!!!
  20. L

    The third (second open) IOM meeting May 5th

    Since I live in Italy and am closer to England... this is old news for me but for some of you this may be NEW news... The Lightening Process which is like a kind of like "remake" of NLP for ME/CFS and other somatic illness, through their "so called research" push the test market onto kids...
  21. L

    The third (second open) IOM meeting May 5th

    Each of you make up your own minds as to what is best for the IOM meeting and write your letter. I think it is best you write you letter and state whatever you think... MUST EMAIL IT BEFORE APRIL 23rd. mecfsopensession@nas.edu I have an extensive list of her career but I will only list the...
  22. L

    Dr. Pridgen's 9 different cocktail mix patents & research under Dr. Carol Duffy name

    I was on Valtrex which worked but since the CVID diagnosis, Klimas is changing my strategy. Before it was VALTREX 2 GRAMS, LDN 4.5 MG, Pulsing IMUNOVIR... which all worked damn well... but then I was off a year and now we are doing LDN 4.5 mg, Pulsing Imunovir, Fludrocortisone, and we are...
  23. L

    The third (second open) IOM meeting May 5th

    There are key people here on this post that are bloggers and some may be there... I have found that numerous people do not go to the links as can be seen by what they ask and write. I place the long post here for them. So if it annoys you then just skip on reading it... some of us have vision...
  24. L

    The third (second open) IOM meeting May 5th

    YOU ARE GOOD!!!!! Simon Wessely is on that board too: http://www.theoneclickgroup.co.uk/news.php?id=884#newspost PRIME PROJECT PARRY / WESSELY UPDATE Professor Simon Wessely sits on the Science Advisory Panel of the Science Media Centre of which Vivienne Parry is a member of the Board. As...
  25. L

    The third (second open) IOM meeting May 5th

    Here's an interesting perspective of one person with ME/CFS who did the program. It started to feel like Tom Cruz's group's code of secrecy when she wrote her story... If you read it all the way to the end on the link provided... you read a war of comments, pro and con fighting back and forth...
  26. L

    Dr. Pridgen's 9 different cocktail mix patents & research under Dr. Carol Duffy name

    My eyes have been a nightmare... It first started in 2011 and she found something on an eyetest not closing the circle... can't explain more... then the vision kept going. Then Nov 2012 I suffered a migraine and my eye was fading up till that point. I was admitted for one week and they found...
  27. L

    Dr. Pridgen's 9 different cocktail mix patents & research under Dr. Carol Duffy name

    I have never heard of pulsing VALTREX...
  28. L

    The third (second open) IOM meeting May 5th

    LET'S TAP AWAY ME/CFS... Alex uses this technique too: http://eft.mercola.com I used tapping for a re-occurring nightmare... of when my mom died and it worked but I am not going to use it for ME/CFS. http://www.secretstorecovery.com/prac-course-downloads/ That's his international website and...
  29. L

    The third (second open) IOM meeting May 5th

    From June 2011 until October 2013, Dr Megan Arroll joined OHC as Research Director from UEL. Part of her role included taking over the clinical trials, and actively building an in house research department. http://freedomfromme.co.uk/history/ She got her grant money for her college paper from...
  30. L

    The third (second open) IOM meeting May 5th

    Megan Arroll is currently the Director of Research for The Optimum Health Clinic which provides interventions for individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and related disorders. http://www.uel.ac.uk/psychology/staff/meganarroll/ DOES THAT HELP? SHE IS THEIR...