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

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  1. Whit

    Very severe ME patient Millie being abused by Royal Lancaster Hospital

    An update posted on Twitter from Etta
  2. Whit

    Very severe ME patient Millie being abused by Royal Lancaster Hospital

    @Countrygirl Can you get my “Letter To A Psych Ward” to Millie or her family? It is a letter explaining why she cannot be committed and why mistreatment could kill her based on my personal experience. You can edit it to fit Karen’s situation. It’s available to download in multiple formats...
  3. Whit

    Need to find button that sends a text to my caregiver or to a pager

    this does exactly what I want, but the reviews look pretty bad, it almost looks like all the positive reviews are shills and the honest ones are all negative. And I couldn't hold a button down for a whole second anyways. LINK I'm really surprised there isn't a button/beeper system for...
  4. Whit

    Need to find button that sends a text to my caregiver or to a pager

    I already have my iPhone Home Screen covered in little buttons that with one touch send a specific text to a specific person (caregiver or parents), but if I got a lot worse, I couldn't touch my phone at all and would even need to use my elbow to push a physical button. :( I already have a...
  5. Whit

    Need to find button that sends a text to my caregiver or to a pager

    Hi everyone, I'm usually really good at finding tech gadgets like this that help make my life work better. I love finding ways to make things work more smoothly and take less energy. I have gadgets and little setups that use less energy everywhere around me. I'm getting worse right now...
  6. Whit

    Attitudes towards ME/CFS Researchers

    This is flat out false. We are way ahead of where we were 10 years ago, I hear it everyday, they know all kinds of things, they are piecing things together and building a map of the cause of ME/CFS. Right now all of the pieces are starting to fit together into one theory which is extremely...
  7. Whit

    Attitudes towards ME/CFS Researchers

    I don't want to turn into the spokesperson for Ron Davis, that's not a job I want. I just am able to clarify some things sometimes because I'm around him so much.
  8. Whit

    Attitudes towards ME/CFS Researchers

    I can verify this is true.
  9. Whit

    Attitudes towards ME/CFS Researchers

    I'm sorry but I disagree with this. Your perception is because of all the things you just don't know because Ron can't talk about everything. He IS following every avenue as his budget allows, nothing that looks promising is just left. He talks all the time about the problems with researchers...
  10. Whit

    Attitudes towards ME/CFS Researchers

    MODERATION NOTE: THE FIRST 21 POSTS IN THIS THREAD WERE RELOCATED FROM 'Abilify- Stanford Clinic Patients' We have many many brilliant minds working on ME/CFS now. It's not like it was 10 years ago or has been for decades. I think in general we should assume we are dumber than the...
  11. Whit

    Abilify tolerance

    Lastly it would be greatly appreciated if you could see if your dad could reach out to academic experts in the psychopharmacology field to see if they might have any suggestions regarding overcoming tolerance to Abilify, as this seems to be a common problem for MECFS patients. He already has of...
  12. Whit

    Abilify tolerance

    Has anyone had Abilify stop working and then start working again without changing the dose or stopping it? Or has anyone heard of this happening? It's stopped working for me, and I actually think I've gone in the opposite direction and it's causing some depressive symptoms. My theory...
  13. Whit

    Flame Retardant and other chemical free pillows, beds, furniture - let's make a list of sources!

    Yes, definitely but that is much more difficult to find, especially from bed.
  14. Whit

    Flame Retardant and other chemical free pillows, beds, furniture - let's make a list of sources!

    This is great! It only refers to couches though, I wonder about other products sold by these companies like bedding pillows.
  15. Whit

    Flame Retardant and other chemical free pillows, beds, furniture - let's make a list of sources!

    I found this company that has a page on their site specifically talking about the dangers of flame retardant chemicals and that they are not used in any of the products on their site. I'm going to maybe get one of their pillows for Christmas :)...
  16. Whit

    Flame Retardant and other chemical free pillows, beds, furniture - let's make a list of sources!

    I don't see it discussed in the ME/CFS community much, but there is a law in California that requires huge amounts of flame retardant chemicals to be added to most furniture items around your house including your pillows, couches, carpet, curtains, etc. Since it is a law in California...
  17. Whit

    Does anyone know a non toxic alcohol wipe alternative to isopropyl alcohol?

    I've been told that most food grade alcohol contains sugar and other stuff that would encourage bacterial growth overtime and so is not a good idea for decontamination. Like trying to use really high proof rum or vodka. Everclear I've been told is very pure, but impossible to get here in CA...
  18. Whit

    Does anyone know a non toxic alcohol wipe alternative to isopropyl alcohol?

    I'm using it to clean my jtube feeding tube, so it will get pumped into my GI tract and injected, so I definitely don't want to use that. I'd like to find pure alcohol. I need some super strong bootleg whiskey :)
  19. Whit

    Does anyone know a non toxic alcohol wipe alternative to isopropyl alcohol?

    I use isopropyl alcohol wipes to clean the opening of may jtube and the tips of the syringes that get screwed into it. it's not much isopropyl alcohol but it's a little and we're sensitive and it's not supposed to be ingested. So I'd love to know if there is a way to get alcohol wipes...
  20. Whit

    Whitney Dafoe's 38th Birthday Fundraiser for Ronald W. Davis's research

    Ron would give one of his legs to cure ME/CFS. He racks his brain for solutions and workarounds and ways to get things done. He dreams about ME/CFS experiments.
  21. Whit

    Whitney Dafoe's 38th Birthday Fundraiser for Ronald W. Davis's research

    No worries! :). Thank you for donating!
  22. Whit

    Whitney Dafoe's 38th Birthday Fundraiser for Ronald W. Davis's research

    Ok now I'm certain you're writing Spotify instead of Spotfund. Spotify is a music streaming service, Spotfund is a fundraising platform. If you clicked the link to Spotfund on this thread or any of my pages, you went to Spotfund, and 100% of your donation went to Ron Davis's lab. So not to...
  23. Whit

    Whitney Dafoe's 38th Birthday Fundraiser for Ronald W. Davis's research

    Hi Lenora, I have no idea how a Spotify (did you mean to write Spotify or Spotfund?) donation works unfortunately. If you make a donation to my fundraiser on Spotfund, the funds all go to Ronald W. Davis's lab. I will leave this fundraiser up for the next year until my next Birthday because it...
  24. Whit

    Whitney Dafoe's 38th Birthday Fundraiser for Ronald W. Davis's research

    It’s my birthday! For my 38th birthday on October 3rd I would like to ask for donations to Ron’s research. Here is a link to a Spotfund fundraiser where 100% of donations will go to OMF and they will give all of the funds to Ron’s lab. Please celebrate with me by coming together and giving...
  25. Whit

    it seems ron davis may have a new potential treatment

    It’s not possible to be certain with science. But 10 years is not realistic. I feel confident it will happen much sooner. I’m not going to spill any more beans to explain why but this particular treatment will likely be available much sooner than that. Under a year. But it has been...
  26. Whit

    it seems ron davis may have a new potential treatment

    Any donations made to my 2020 birthday fundraiser which is still live on Spotfund go 100% to Ron’s research. https://www.spotfund.com/story/6a6c7fa4-be86-4d7d-8bb8-bf8d20a242a7 You can also donate directly to OMF and write in the notes section that you want your donation to go to Ronald Davis...
  27. Whit

    Smart Youthful Energy

    Any good/bad experiences with this?
  28. Whit

    Juicing

    No. Its full of heavy metals.
  29. Whit

    Juicing

    I hv severe gastroporesis and can hardly eat. Want to juice to get nutrients because i can't eat more thn 2 bites veggies. but not sure how healthy it really is. http://www.thehealthyhomeeconomist.com/think-raw-veggies-are-best-think-again/...