• 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.

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  1. helen41

    In memory of Louise Ramage

    RIP Louise. I know you were terrified that harm would come to you as a result of being forced off of opiates for your pain. Whatever the autopsy says was the cause, we all know the cause was ME
  2. helen41

    The Synergy Trial: Ritalin and Micronutrients

    what an interesting thread! I was put on Modafinil about 4 years ago and it was like a life saver for me. I tried a couple of times to stop it, but my speech would slow, and I could fall asleep anywhere (even the Costco food court LOL) I am better now than I was, I think primarily due to rest...
  3. helen41

    Daily Vote To Help Nat'l ME/FM Action Network Win $2,000!

    this link should take you directly to the original entry. http://www.karmacanada.ca/contest/organizations/national-mefm-action-network/?search=helen there has been a bit of confusion, as it looks like people need to register to vote, and that registration is a pain. Registration is not needed...
  4. helen41

    Questions about Anaerobic Threshold and Exercise

    this is a thread from long ago about VO2 max testing, and what is now the workwell team http://forums.phoenixrising.me/index.php?threads/pacific-fatigue-lab-disability-testing.6174/
  5. helen41

    Questions about Anaerobic Threshold and Exercise

    I had my VO2 max done, and was advised not to allow my heart rate to go above 113. At the same time, they said that walking at a normal pace, whatever my HR, would deplete my energy and was not sustainable. I understand the HR measure as just one more indication of when I am overdoing things...
  6. helen41

    OI with high BP?

    I have had BP probs for 3 years, well controlled by Ramipril. I was put on a second BP med (clonidine) for night sweats, and a whack of supplements by the complex diseases clinic in Canada a few months ago. It was magic. I went to my family Dr last month, telling her it was really helping, but...
  7. helen41

    Aviva! Your vote can help fund a year of ME/FM awareness in Canada!

    we ended up in 7th in our category (medium)
  8. helen41

    Aviva! Your vote can help fund a year of ME/FM awareness in Canada!

    we are doing well. One group (Cultural Cafe) has dropped way down. I saw this on their FB page "Hi all, sad to inform you that we will loose over 1000 votes from our Aviva project. Unusual voting method has been used to vote for us. I know this is a good project to support, however, let us do it...
  9. helen41

    Sept 30th - Oct14th: Vote daily, Facebook or not, in Aviva contest for Canadian ME charity

    here is a link to the medium leaderboard. we are in 10th right now, but only by 11 votes :eek: http://www.avivacommunityfund.org/search/list/level:all/sortby:most-votes/cost:2 we need more!
  10. helen41

    Sept 30th - Oct14th: Vote daily, Facebook or not, in Aviva contest for Canadian ME charity

    The Aviva contest is live. Please give your daily vote for the next 15 days to support ME awareness in Canada. Anyone can vote! http://bit.ly/18sKKjH#.UkWUQGAa2lg
  11. helen41

    Win $5,000 for Phoenix Rising and PANDORA in One-Time Facebook Vote!

    We won $2500 for both Canadian groups (ME/FM Action Network and MEFM Society of BC). Unfortunately, we didn't manage to win for either PR or PANDORA in the American part. the vote numbers there were very high Still, another $5000 for our community is wonderful!
  12. helen41

    ONE TIME VOTE for PR and for PANDORA too!

    We won $2500 for both Canadian groups (ME/FM Action Network and MEFM Society of BC). Unfortunately, we didn't manage to win for either PR or PANDORA in the American part. the vote numbers there were very high Still, another $5000 for our community is wonderful!
  13. helen41

    Win $5,000 for Phoenix Rising and PANDORA in One-Time Facebook Vote!

    I think you should just go ahead. The top voted canadian group only has 22 votes right now, from what I can tell. Plus, I does strike me that if we win all 4 prizes, the optics might look like we are pretty greedy ;)
  14. helen41

    ONE TIME VOTE for PR and for PANDORA too!

    Bogs just responded to a question on their wall and clarified there are 2 US prizes AND 2 Canadian prizes. We haven’t been able to read the rules, so we had no idea. May12th nominated ME/FM Action Network http://woobox.com/nopbx5/vote/for/1007334 Please give them a one time vote. I have a call...
  15. helen41

    Win $5,000 for Phoenix Rising and PANDORA in One-Time Facebook Vote!

    Bogs just responded to a question on their wall and clarified there are 2 US prizes AND 2 Canadian prizes. We haven't been able to read the rules, so we had no idea. May12th nominated ME/FM Action Network http://woobox.com/nopbx5/vote/for/1007334 Please give them a one time vote. I have a call...
  16. helen41

    Win $5,000 for Phoenix Rising and PANDORA in One-Time Facebook Vote!

    I already had the photo contest app installed, so I guess I didn't see that you had to give it permissions. I suppose you could simple allow the app and delete it right away. Your vote would still count.I do an app sweep every couple of months, and deleting them is not difficult. If you delete...
  17. helen41

    ONE TIME VOTE for PR and for PANDORA too!

    there are 2 entries for both Pandora and PR each in this contest. Ignore the 2 extras please. We just need votes on the links above. Both original entries were submitted minus the webpage address so they both had to be redone. We have asked the sponsor to delete the 2 extras.
  18. helen41

    ONE TIME VOTE for PR and for PANDORA too!

    there are 2 prizes available, each for $2500 from Bogs Footwear. Please vote once for each before July 24 What a statement it would be if we won both!!! PR http://woobox.com/nopbx5/vote/for/994822 Pandora http://on.fb.me/11MLLm3 ME/FM Action Network is entered in the Canadian side...
  19. helen41

    ONE TIME VOTE for Pandora

    Please vote only the entry by Tina, at the link posted above. There was an error on the other entry so they resubmitted and have asked for the first one to be removed from the gallery.
  20. helen41

    ONE TIME VOTE for Pandora

    One time vote needed before July 24th. http://on.fb.me/11MLLm3 there are 2 prizes available, each for $2500 from Bogs Footwear. We are hoping another ME group will enter as well, and we have feelers out, but at this time, the above entry is the only one in.
  21. helen41

    Oral anti-fungals

    I have been taking it for over a week now, and have had no problems with the medicine at all. I have not had a history of chemical sensitivities, so maybe I am just lucky. My next liver enzymes are in a month, so I will let you know if any are more unusual than usual
  22. helen41

    Oral anti-fungals

    thank you all. After doing some reading, and also, being afraid I will infect my husband as well, I decided to give it a try. First dose today, and I don't feel any negative effects thus far
  23. helen41

    Oral anti-fungals

    My toenail fell off recently, and a culture showed a fungal infection (charming! LOL). My Dr.'s office just called, saying she called in a prescription for me (Lamisil, I think). I tend to be the one in charge of my care, who knows what I can and can't take, but I don't see posts about this...
  24. helen41

    Use whole body vibration exercise for weight loss, bone density and muscle building

    I have a good chance of winning one of these, but honestly, I am nervous about trying it. Doe anyone have an update? Snowcat, are you still using it?
  25. helen41

    Vote Now, Vote Daily, Vote from Anywhere - Photo Finish in the Nature's Bounty Charity Contest!

    I think they made it pretty clear they will not address the problem. I guess it is their contest, their money, their decision. We sent a few screenshots, including one of someone saying they were making up emails and voting 50 times a day and they responded "Thank you for your e-mail. We...
  26. helen41

    Vote Now, Vote Daily, Vote from Anywhere - Photo Finish in the Nature's Bounty Charity Contest!

    we all need to remember that we also have almost 30,000 ballots into the random draw. Some screenshots of people mentioning voting with multiple accounts were sent to the sponsor (one even mentioned voting 50 times and making new accounts as he did). Whether the sponsor chooses to address it...
  27. helen41

    Vote Now, Vote Daily, Vote from Anywhere - Photo Finish in the Nature's Bounty Charity Contest!

    We also need to remember that every vote we cast is also another chance in the draw for $5000. Someone looked at the numbers, and posted elsewhere that it looks like a 1/3 chance if the birds maintain their lead and we didn't win the voted prize.
  28. helen41

    Nature's Bounty $20,000 Voting Contest:help, FAQs and Updates (Vote from any country)

    WOOHOO! We have an alliance with Reach for the Rainbow!! (thank you Kina for your wonderful negotiating) When voting for National ME/FM Action, please take a moment and also vote for Reach for the Rainbow. Many of us are posting our vote numbers on this post...
  29. helen41

    Vote Now, Vote Daily, Vote from Anywhere - Photo Finish in the Nature's Bounty Charity Contest!

    WOOHOO! We have an alliance with Reach for the Rainbow!! (thank you Kina for your wonderful negotiating) When voting for National ME/FM Action, please take a moment and also vote for Reach for the Rainbow. Many of us are posting our vote numbers on this post...