• 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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Search results

  1. mojoey

    Recording symptoms: What do you keep track of and how do you measure trends ?

    Glad you think so! Given the multisystemic, relapsing/remitting nature of the disease, I've found that none of the trackers out there with presets really accommodate it.
  2. mojoey

    Recording symptoms: What do you keep track of and how do you measure trends ?

    There are various ways to track, and nothing beats the simplicity of a google doc, but visualizing tons of symptoms and treatments together is a harder problem to crack. To make things easier, we developed a simple, beautiful way of visualizing your symptoms, treatments, events, and other...
  3. mojoey

    Detection of Mycotoxins in Patients with CFS

    I've been following this thread with great interest, as someone that has benefited significantly from dealing with mycotoxins. The thing that I'm most interested in hearing is how people actually do with this treatment. It sounds like there will soon be large enough #'s of people trying this...
  4. mojoey

    Highest Rated Treatments on HealClick

    Hi Kati, Thanks so much for the honest feedback. For the record, I don't look at any of these treatments as a cure, and suggesting that there was a cure on that list was never my intention for posting about it. And we are in agreement that the biggest need is serious research. Whether you...
  5. mojoey

    Highest Rated Treatments on HealClick

    I agree, and that goes for any forum. It goes for the crowdsourced document I put together on gcmaf, and the PR surveys on methylation protocol. It's all limited, and the only ways to get results that get closer to reality are better disease definitions and larger sample sizes. As long as we...
  6. mojoey

    Highest Rated Treatments on HealClick

    The only way to get away from this problem is larger sample sizes. But based on these sample sizes so far, we are not skewed toward any one treatment, mold avoidance or otherwise. It's pretty well balanced if you look at the #'s closely.
  7. mojoey

    Highest Rated Treatments on HealClick

    This list is a survey of personal experiences, not theories (on causation or best treatments for the population) At this point we have slightly more reviews for valcyte than for avoidance, so we're not shutting anyone out or up.
  8. mojoey

    Highest Rated Treatments on HealClick

    Here is the actual infograph: http://bit.ly/1mjAh3j Hover over the bars to see the exact rating. You can also see sample sizes there by clicking "# Ratings"
  9. mojoey

    Highest Rated Treatments on HealClick

    Patients rate on a 1-5 scale (from much worse to much better). Our goal was not just to review treatments but to see how treatment ratings correlate to changes in patients' conditions. I think it'd be a good idea to add a way to indicate a treatment led to recovery, instead of just symptom...
  10. mojoey

    Highest Rated Treatments on HealClick

    I just published this list for the first time today. This list is specific to ME/CFS, and not the "overall" list published last week. This list is generated entirely from our database of ~900 ME/CFS patients, not commentary from me. LDN has a 3.3 / 5 rating with 27 reviews, and Acyclovir has...
  11. mojoey

    Highest Rated Treatments on HealClick

    Here are the highest rated treatments for ME/CFS with 9+ ratings, pulled from 1600+ ratings on our site so far. If you find that this list matches or doesn't match your experiences, the best way to put in your “vote” is to Visit us at HealClick and rate your treatments! See more at...
  12. mojoey

    healclick.com

    We're working on this. Also working on an alternative forum view of the site for users that aren't used to the stream format. Thanks for the input!
  13. mojoey

    healclick.com

    Hi Sushi, The search is working well on my end. What were you searching for, if you don't mind me asking?
  14. mojoey

    healclick.com

    It would be good to know if it's the content feed that's overwhelming, or the fact that we ask for health data that's overwhelming. Two very different things, and the content feed is where users spend 90%+ of their time on our site. I'm planning on adding a "skip this part" link so users don't...
  15. mojoey

    healclick.com

    I totally understand. The facebook stream-style format really isn't for everyone. The treatment reviews should be a more familiar format to you (and others) than the feed. To see this, click "Treatments" at the top. You can filter reviews by condition and sort by highest rating, most reviews...
  16. mojoey

    Healclick

    We just launched our Thunderclap campaign, which is a way to turn patients' voices into a thunderous public announcement about our patient-centered project. We have 6 days left to get 135 more participants! How it works: It sends out our message through all the participants'...
  17. mojoey

    HealClick: Patient Matcher

    Thanks so much for supporting our campaign :)
  18. mojoey

    healclick.com

    Thanks for sharing about us! I would also add that our ultimate goal is research. Patients with multiple conditions definitely need a better way to connect and share, but sharing alone isn't going to produce answers. We need more research. This was my BHAG to use one project to tackle both...
  19. mojoey

    Healclick

    Hi Wayne, it's really good to hear from you. I wanted to add a more detailed reply... We use patient-matching to help patients share treatment experiences, but more importantly, we're trying to turn all these patient experiences into medical research for M.E., Lyme Disease, and other invisible...
  20. mojoey

    Healclick

    I finally worked up the courage to tell my real story. This is what inspired me to start HealClick and why this project is so deeply important to me.
  21. mojoey

    Healclick

    Thanks so much for writing about us Mindy!
  22. mojoey

    Healclick

    A short video update on our campaign:
  23. mojoey

    Healclick

    Thanks for posting about HealClick beaverfury! I agree with the concerns about forums becoming fractured, and surely it was not our intention to dilute fabulous forums such as PR. This has always been one of my top 2 places to get information. But at the same time, I was diagnosed with...
  24. mojoey

    Spring CFSAC Speak up about ME event Friday, May 11, 2012

    Hi Denise: I have a question: how much of our donations (if anything) go to Phoenix Rising and/or Pandora for their fiscal sponsorship? I've only read about donations going through PR & Pandora to "defray costs" but I haven't been able to find any info about what percentage of proceeds actually...
  25. mojoey

    Exercise as Detox

    First of all, Freddd, it's encouraging to hear you don't have to avoid the vast majority of those ex-triggers anymore. At what point (or dosage of methylation supps) did that shift? Was it an abrupt shift or a gradual one? As for the "categorization" debate, I think you had a few things...
  26. mojoey

    Exercise as Detox

    No all I argued for was that perhaps avoidance deserves its own category (or subcategory, technically speaking), unless you consider all the categories that Cort set this forum with "information ghettos." I'm suggesting that the proper framework be given to maximize the productiveness of...
  27. mojoey

    Exercise as Detox

    Hi Freddd, I would argue that hyperreactivity to certain toxins are due to methylation blocks. However, it is a common story to hear of biotoxin avoiders that cannot tolerate or do not benefit at all from taking any dosages of yours or Rich's protocols, until they begin doing avoidance. Then...
  28. mojoey

    Exercise as Detox

    very glad to see this thread opened up again for discussion. it seems like an important topic (considering that we're hearing of such stunning results from people that are trying this,) so it seems a bit of a shame that it's stuck in the "detox" section. Perhaps there could be a section about...
  29. mojoey

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    He's been on it since 9/20, so almost 4 months.