• 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. A

    Different recovery stories

    Regarding Raelan Agle: in my opinion, she is not to be trusted. You can read what people think of her in this reddit thread, including one user who found out that she's listed on a fraud alert website: She's clearly got some sort of marketing deals worked out with various people selling...
  2. A

    Mold toxins as a cause for ME/CFS?

    This makes a lot of sense to me. I was exposed to some sort of nasty black mold before I got ill. But I always assumed mold wasn't an important factor for me for two reasons: 1. My understanding is that mold is only a problem if your immune system is already weak. Mold attacks weak plants, weak...
  3. A

    What ME/CFS based YouTube channels would you recommend?

    Drs. Jacob Teitelbaum and Sarah Myhill have some excellent content. Not CFS/ME specific channels per se though. The Optimum Health Clinic's Channel has helped me a lot. https://www.youtube.com/@TheOptimumHealthClinic https://www.youtube.com/@DrTcomprehensive What do people think of Raelan...
  4. A

    HealthRising: "ME/CFS and the Coronavirus Vaccine: Is There a Better Way?"

    I got 3 jabs of COVID-19 vaccine. It didn't worsen my CFS/ME, thankfully, but I did end up with lichen planus - a painful, itchy, auto-immune skin condition commonly triggered by vaccines - immediately after my third jab. Of the known causal factors, the only one that applied to me was...
  5. A

    ME/CFS Comic Series

    These are great! I may try to come up with some ideas too. I super appreciate being validated in entertaining ways. There's so little out there for people like us.
  6. A

    Newbie looking for advise

    Dr. Myhill developed a test for mitochondrial dysfunction, which effectively doubles as a test for CFS/ME. You have to pay out of pocket for it though. Never seemed worth it to me; I can tell my mitochondria don't work based on my symptoms alone. Plus I did another test that also confirmed my...
  7. A

    Is your worst fatigue in the morning too?

    I believe my pattern is similar to yours, at least these days. I find it easier to get up early, like 5am. But if I do that too many days in a row, it starts to bring me down. I normally get up around 7:30-8:00am. I wake up feeling like absolute garbage. It takes everything I have to get out...
  8. A

    How to Lay Down and Watch TV sans Neck Pain?

    As I'm sure most of you can relate, I spend a lot of time laying down and/or watching TV. Sometimes I'd like to be able to do both, but I inevitably find it impossible to get comfortable. Maybe I just don't have the right pillows for the job. Invariably I get neck pain and then a neck...
  9. A

    Full remission after 7 years of ME/CFS - What worked for me

    Thanks for sharing what worked for you! Congratulations on getting better. It is inspiring that you did it beyond that 5 year mark. I've been sick for 8 years now with no improvement and in fact some decline in the past 7 years. It helps to know that people who have been sick as long as (some...
  10. A

    Is your Hypothalamus up the creek?

    That's a very inspiring article. An undiscussed implication: cortisol damages the hypothalamus, which would explain why so many driven type A folks end up with CFS/ME. It also means that stress reduction is an important part of healing, (although I think we probably all know that already and...
  11. A

    Should we be vegan? Short answer: No

    Like many people, I was vegan for a few years before I got sick. I fell for the fraudulent and unfortunately ubiquitous health claims (almost all of which are based on Campbell's now thoroughly discredited China study, and the rest of which are probably also invalid because they lack a control...
  12. A

    Have you always had sinus problems with infections all throughout your ME?

    I've had chronic sinusitis for about 27 years and CFS/ME for the past 7. I've tried to treat the sinusitis twice with minimal success. The second time was recently. I would say I nearly eliminated it, but not quite. I still use my neti-pot daily. And my other friend with CFS/ME has a chronic...
  13. A

    CFS is not an auto-immune disorder

    I just read yet ANOTHER article talking about CFS/ME as if it is an auto-immune condition. HELLO. I HAVE CFS/ME and I DO NOT HAVE AN AUTO-IMMUNE DISORDER. Like a lot of folks with CFS/ME, my immune system swings the other way, towards HYPOarousal. (I, for example, have low platelets and a low...
  14. A

    POLL: Do you have THIS symptom? (If you click please answer either way to avoid sample bias)

    I went to school for psychology and spend a lot of time reading up on and learning about the nervous system. I still had to pause for a moment to remember what the sympathetic nervous system was responsible for. You may want to define that before asking people about it.
  15. A

    Brief Hyperventilation Episodes

    I keep having these little mini episodes where I hyperventilate, moan, and my whole body spasms. I am compelled to thrash about like a fish in a bucket. The episodes only last a few seconds or so, and then I relax again. Sometimes it's like my whole body is trying to wring itself out like a...
  16. A

    Started Ubiqinol (Q10) Interested in how it worked or not for others

    I tried various forms of Co-Q-10, all useless. The knock-off brands gave me constipation and had no other discernable effect. Ubiquinol is expensive but I was able to try a bottle. It didn't make me constipated but also had no discernable effect. However, I don't seem to respond at all to any...
  17. A

    Is your Hypothalamus up the creek?

    I'm too brain-foggy to read all of this, let alone make sense of any of it. But I do believe that the hypothalamus is crucially involved in CFS/ME, along with the mitochondria. The causal relationship is by no means certain though. Dr. Teitelbaum says that the hypothalamus becomes...
  18. A

    Should PWCs donate organs and tissues after death?

    The donating my body specifically to CFS/ME research idea is interesting, but how does one choose where to donate their organs etc? On the thing I have to fill out, I can choose to donate my body to "science," but that's as specific as I'm allowed to get.
  19. A

    Should PWCs donate organs and tissues after death?

    I did find this article, which seems to suggest it may be okay for PWMEs to donate organs, but only tissues if they are in recovery. So I guess I can donate everything but my skin? https://meassociation.org.uk/2011/10/can-people-with-mecfs-donate-tissues-and-organs/
  20. A

    Should PWCs donate organs and tissues after death?

    I live in Ontario (Canada) and just got my licence renewed. I have the option to fill out an organ donor card. If I choose to donate my organs and tissues, I have the option of selected certain organs and tissues that I don't want to donate: A. Kidneys B. Heart C. Eyes D. Bone E. Liver F. Lung...
  21. A

    Starting the Protocol, Have questions

    Thank you, Learner! What sort of testing would you recommend before taking a high dose of 5-MTHF?
  22. A

    Whole genome done - now what?

    I'm confused - you went to a HOSPITAL, and they are HELPING YOU? What country do you live in? What hospital is this? I live on land stolen and occupied by the government of Canada, and I can't even find one doctor who knows what CFS/ME is. And when I went to the hospital they told me they only...
  23. A

    Starting the Protocol, Have questions

    I got my genetic testing results and plugged them into Genetic Genie! Looks like I may have a Caspase-8 deficiency (which maybe explains my abnormal blood tests / low WBC and platelet counts / lack of immune function?) and (quelle surprise) an MTHFR deficiency (thermolabile variant). (Called...
  24. A

    Confused about 23andMe's packages

    Update: I ordered the cheaper package, and I did get all my SNPs and everything I need from that. AND it turns out there is an option to upgrade to the more expensive package later if I had wanted or needed to (which I don't).
  25. A

    Starting the Protocol, Have questions

    Okay so I'm about 6 weeks into the methylation protocol. I've increased my doses every 2 weeks. So far no noticeable effects. Nothing. These were my starting doses: 1, One Pure Encapsulations "UltraNutrient" multivitamin. 2. 2000 mcg hydroxycobalamin (under the tongue) 3. 200 mcg folinic acid...
  26. A

    Anyone had experience with the optimum health clinic UK?

    I've been following the OHC for a couple years now and have gleaned some useful knowledge from their free materials. The psychological aspect is only one part of a holistic, multi-pronged approach that includes diet, testing hormone levels, etc etc. I deeply respect this approach and it is very...
  27. A

    Confused about 23andMe's packages

    I'm not sure if I can help you avoid getting bamboozled. I'm working with a Naturopathic doctor who happens to be super nerdy about genetics.
  28. A

    Confused about 23andMe's packages

    That's kinda what I figured, but this makes me feel more confident. Thanks!
  29. A

    Confused about 23andMe's packages

    So I'm planning to order genetic testing from 23andMe, but there are two options for testing: a basic "ancestry and traits" package for $129, and a "health, ancestry, and traits" package for $249. I don't want to waste my money, but I'm scared of paying $129 and not getting the results I need...
  30. A

    Which genetic testing provider to use for methylation status?

    Ahmo, are you able to say more about what you learned from Ben Lynch and Amy Yasko that helped you, and what you mean by "sequential healing"? I'd love to hear more about this. Thanks, A