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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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Search results

  1. K

    Dr Fran Kendall?

    This is a really informative thread! I was under the impression that she would run genetic tests, both for mitochondrial diseases, and other genetic diseases. Was this not the case?
  2. K

    On Disability? Here's what a periodic "review" looks like.

    Absolutely! I just meant that despite the technical definitions, answers to forms and questions should be framed in a way that represents disability rather than ability because a lot of bias is at play here for diseases like cfs and especially if you are younger. Saying that I am housebound is...
  3. K

    On Disability? Here's what a periodic "review" looks like.

    Dainty - Your improvement is so amazing! That is amazing and I'm so happy for you! Congratulations! I hope my body will allow me at some point to go through your past posts to see what you have done to achieve such great results. I wish you continued improvement :) Ema - good point about...
  4. K

    On Disability? Here's what a periodic "review" looks like.

    Wow, that is so helpful. Thank you for sharing! Since you say that you are improving, did you write that you were doing "better" for question 4? I see a vast difference between getting better enough to be functional vs. feeling just a tiny bit marginally better and it doesn't even impact your...
  5. K

    Dr. Chia's treatments

    I had a stomach biopsy about 8 months ago. Because I am so severely sick and because the blood work didn't reflect it, Dr. Chia ordered a biopsy. I had it done back home and there were no specific instructions...other than to take several sections and have it sent to Dr. Chia's lab. You can...
  6. K

    Question about Dr Chia's stomach biopsies

    I travelled to see him and he wanted me to do a stomach biopsy - he does not ask this of all patients though. I think he had me do it because my blood work detected high levels of enterovirus, but not high enough to convince him that it was had issue for me. So I had the biopsy done back home...
  7. K

    Come Discuss The Blue Ribbon film (with Ryan Prior)

    To Ryan who said "If I was teaching a class to medical students, I'd have them memorize definitions. If I wanted to pull heartstrings and move mountains, I would tell stories" I absolutely agree that together we are stronger together and believe me, as a person of color, the civil rights...
  8. K

    Come Discuss The Blue Ribbon film (with Ryan Prior)

    I am also interested on how different and similar this project will be to Voices from the Shadows.
  9. K

    Come Discuss The Blue Ribbon film (with Ryan Prior)

    I agree that well-dressed, fully made up people with wonderful clean hair who speak very articulately should be avoided. But the thing is, many of us do look "fine" even when we feel so far from it, and even when we aren't well-dressed and made up. We look "fine" whenever other people see us...
  10. K

    Come Discuss The Blue Ribbon film (with Ryan Prior)

    Thank you Ryan for answering these questions on Reddit and I am so glad you brought the discussion over to the community at PR. I really do appreciate your open-mindedness and willingness to learn. I think it's difficult for the ME and CFS community to vet your harder, mainly because most of us...
  11. K

    Kickstarter project for excellent US ME/CFS documentary film

    I am very glad they have a Reddit page and are open to questions and discussion. I have to admit that in the beginning (several days ago) when I first came across the idea, I was very skeptical and afraid that they did not have a good enough understanding of the illness to portray and to send...
  12. K

    Stomach biopsy for Dr. Chia

    I'm not sure if I'm going under general anesthesia or just a sedative or twilight anesthesia? It seems to vary from doctor to doctor and I don't actually have an appt with the GI prior to the procedure. Hopefully I'll get to talk to someone about it. For those who have had an endoscopy. what...
  13. K

    Stomach biopsy for Dr. Chia

    Has anyone done this? What was the endoscopy like? Did you suffer a crash? Any tips? I am scheduled to do this (I do not live near Dr. Chia so this whole process has been quite difficult) and am unsure of where to send the slides. Both the staff and my PCP talked to Dr. Chia, and got...
  14. K

    Gaba supplements?

    Thanks for tip. Do you know which neurotransmitter test is the most reliable? I hear the urine one from NeuroLabs is not reliable... Are any of them reliable?
  15. K

    Gaba supplements?

    Wow that is a very low dose of klonopin. That is good news! I will definitely look into Kavinace. Thanks for the info. Curious if anyone has ever tried Sanesco's Lentra? I like the combo of ingredients, but it's kinda pricey...
  16. K

    Gaba supplements?

    Or maybe L-theanine?
  17. K

    Gaba supplements?

    I agree, and I'm still gonna stay on my benzos....but they just aren't helping enough and I need to add something else to it. I was hoping something naturally. I was also under the impression that long term benzo use can lead the body to produce less gaba?
  18. K

    Gaba supplements?

    I'm thinking of taking some Gaba supplements as sleep is one of my worst issues. I do take benzos and they help, but just not enough. Benzos also help a bit with pain too. No other sleep meds help. I feel that it is likely I have low Gaba levels and want to naturally increase them. I'd...
  19. K

    Looking for Dr. recomendations, any location will do.

    I would love hear about your visit with Dr. Nathan whenever you get the chance.
  20. K

    Has anyone ever seen Dr. Bateman?

    Boost Hahaha thanks for the much needed laugh! LaurelW Can you tell me more about your experience with her? What do you like and dislike about her? Does she also help take care of autonomic and sleep disorders, and all the other stuff that comes with ME? Has she helped you? What kind of...
  21. K

    Here is a real winner of a cardiologist...

    My blood is boiling. Thank you Kati for writing a repsonse for those who cannot. I have voted it up! Since I cannot write, I am going to send the articles to the Invisible Disabilities Association and hopefully they can comment too!
  22. K

    Has anyone ever seen Dr. Bateman?

    Has anyone ever seen Dr. Lucinda Bateman? I'd love to hear your experiences, especially if you've had to travel for the appointment. I'd like to know if you felt that the travel was worth it. Is she well-rounded and focuses on all aspects of the disease, or is she more focused on one thing...
  23. K

    Update on Alex3619: in hospital but doing well

    Ouch! I hope you feel better soon Alex! Glad to hear that they are treating you well :)
  24. K

    Anyone seen Dr Neil Nathan in California?

    globalpilot, curious as to why you are travelling all this way to see Dr. Nathan when there are a bunch of docs closer to you? Anyhow, I would be very interested in hearing how your appt goes! Thanks!
  25. K

    Anyone seen Dr Neil Nathan in California?

    That's awesome! Would you mind sharing who? That is too far for me, but I am curious. Please PM me if you don't want to post the doc's name on the board. How did you go about finding such a doc? did you just keeping calling around? It's so difficult...sometimes you never know until you...
  26. K

    Anyone seen Dr Neil Nathan in California?

    The thing I've noticed with doctors is always the "I heard...." or "someone I kind of now...". Not knocking that at all, it is very very useful information. But I'm also curious to hear about anyone's personal experiences with him. If you've seen him, please share! :) Or you can PM me instead.
  27. K

    Methylation Block without gluthathione depletion?

    Thanks so much for the info! I am less confused now :)
  28. K

    Methylation Block without gluthathione depletion?

    I recently had a Spectracell test and it showed that I had adequate levels of gluthathione (slightly above the minimum reference). I was deficient in Vitamin B3 and B6, folate, zinc, and coenzyme Q-10. Is it still possible to have problems with my methylation cycle if I do not seem to have...
  29. K

    Dr. Chia's treatments

    I plan on seeing Dr. Chia soon. I would love to have more information, anything you can tell me. Especially since I will be travelling. Thanks!
  30. K

    CDC Interview on the CFS Toolkit

    Thanks for the reply! I should have phrased my question better. What I meant to say is "Would researchers, clinicians, and government agencies listen if advocacy groups pushed for the use of the ICC in research and clinical settings? Or are advocacy groups already doing this? If not, can...