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

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  1. Unduki

    Lesson learned: Separate ME from CFS

    You may be confused but you've managed to invalidate all of my hurt feelings with one post. Good job. You're almost as good as all the doctors over the past 20 years who told me it was all in my head and I should just get better and quit bothering them. Message received. This is not a nice...
  2. Unduki

    Lesson learned: Separate ME from CFS

    If you are implying that I "lectured" anyone about the importance, you are mistaken. But that was another post. Thank you for satisfactorily answering my question about the topic of this discussion. And to anyone else who wants to challenge my life experiences - I do know about the dark...
  3. Unduki

    CFS is a metabolic condition!

    Oh dear... I don't know whether to laugh or cry... That was a silly mistake. Thanks for telling me MeSci and not calling me stupid. I really, really appreciate that. I get episodic cluster headaches and I'm maybe, hopefully at the tail end of my most recent episode. (It had been 3 years...
  4. Unduki

    Article: Light on ME/CFS III: A Different Herpes Virus for CFS? - Varicella-Zoster, Shingles and ME/

    Thank you for posting this article! I especially like it because Dr. Shapiro's theory is very close to what I worked out for myself over the past 25 years. I took Valtrex for two years and now I'm in remission, I guess. There are times... but even normal people experience fatigue, etc... I...
  5. Unduki

    Article: Light on ME/CFS III: A Different Herpes Virus for CFS? - Varicella-Zoster, Shingles and ME/

    Could the advent of Frankenfood have anything to do with your observation? Frankenfood describes the things we ingest that have had all nutritional worth processed out of them and unnatural, undigestible things added. Trans fats, GMO's, PESTICIDES, chemical preservatives, etc... Things that...
  6. Unduki

    Morning fatigue - low potassium connection

    I've been taking prescription potassium and getting my blood levels checked every 3 months for the past 25 years. My body just doesn't make it. Are you attributing a low potassium level to ME/CFS? Very interesting... My deficiency became known a few years after my CFS dx.
  7. Unduki

    Sore glands in neck when on famvir and other antivirals

    I took Valtrex for two years. I felt pretty ill for the first couple of months and really for almost a year. It felt very similar to sugar withdrawal for me - an all over, almost nauseated heaviness. My doctor encouraged me to stick it out and I did. I think it will work better if you can...
  8. Unduki

    Lesson learned: Separate ME from CFS

    We don't have ME in the United States. We call it CFS. If sounds like you're trying to get rid of all the Americans. I didn't realize this was a British only group.
  9. Unduki

    CFS is a metabolic condition!

    So... just wild speculation/brainstorming in the middle of the night... Something in our metabolism is malfunctioning so that it allows more viruses to attack?? Here's the thing that gets me, after over 30 years dealing with this monster (my mother also suffered from this and, I'm sure, went...
  10. Unduki

    Is chronic fatigue syndrome a neurological condition? A survey of UK neurologists. Wojcik et al 2011

    Hmm, I think CFS is caused by a virus that sits in our brains and attacks the central nervous system as well as every other system.
  11. Unduki

    Cannabidol

    There has been some speculation that the human population at large is suffering from a cannabinoid deficiency. We have, in our oldest genetic material, cannabinoid receptors throughout our bodies and lately, we're not keeping them supplied. Cannabidol is derived from hemp. An inexpensive way...
  12. Unduki

    CFS is a metabolic condition!

    Many, many times. Then they filed the tests away, calling them inconclusive. Doctors have not wanted to have a clue about CFS/Fibro for decades.
  13. Unduki

    CFS is a metabolic condition!

    Herpes VIrus - specifically HPPV 6
  14. Unduki

    CFS is a metabolic condition!

    Excuse me?!!!
  15. Unduki

    The Resistant Starch Challenge: Is It The Key We've Been Looking For?

    To the OP: Maybe this is a lame question, but how would this affect someone with chronic low blood sugar? Would it correct and balance things out or make things worse?
  16. Unduki

    Rest periods and can CFS people get really well?

    One of my doctors told me to lay down for 10 minutes every hour. Can't really do that with a bunch of kids to look after but I managed to lay down 4-5 times throughout the day for about a year of concentrated effort. I think it made things easier - not so much overload. Try it, it's basically...
  17. Unduki

    GP 'very unusual to have ME so bad for so long'. Am i the only one?

    Wow. Maybe you ought to find a doctor who is paying attention. I personally know more than 30 women who have been dealing with this for over 20 years, myself included. These are people I've met in person - not just online.
  18. Unduki

    CFS is a metabolic condition!

    I think it's important to encourage everyone to exercise some. It's really hard to get through to chronically ill people because their lives are so impossible. I remember getting upset at anyone who told me I just needed to get back to working out. (I used to be super athletic B4 CFS) I...
  19. Unduki

    CFS is a metabolic condition!

    Good question, knackers323. I don't think he believes it's all the same thing. He only diagnosed me after the usual blood tests showing the Cytomegalovirus, Epstein Barr, etc... Then he said he thought I would respond best to the Valtrex with CoQ10. He mentioned two other possible treatments...
  20. Unduki

    RiboGen for ME/CFS

    I've been taking RiboGen for almost a week and haven't noticed any changes - which is good for now. It means no side effects. I'm very sensitive and usually get side effects right away. The only change I've noted was a decrease in cluster headaches, but that's most likely from a recent change...
  21. Unduki

    CFS is a metabolic condition!

    Well... I'm a she. I never said I was recovered, I said relatively symptom free. Enough so that I was able to care for my father the last three years of his life. I even managed to take him on a three week trip across country. He was a large man, over 6 ft, and over 200 lbs. He fell often...
  22. Unduki

    CFS is a metabolic condition!

    Gingergrrl - I said relatively symptom free. It's still there, hanging like a shadow but I've been working out and feeling like I did before I got sick. I've gotten so strong. Enough that I think if I could beat these cluster headaches, I could finally go out and get a job - now that I'm...
  23. Unduki

    CFS is a metabolic condition!

    We can improve our health with exercise IF CFS/Fibro lets us. There are simply days when exercise makes the conditions worse. Anyone who claims otherwise isn't paying attention.
  24. Unduki

    CFS is a metabolic condition!

    Thanks, Mij. I'll look into it. :)
  25. Unduki

    CFS is a metabolic condition!

    I got really sick at first and didn't see any sign of getting better for over a year. Dr. K said this was to be expected. This virus wants to live. It's a lot like quitting sugar when you have rampant Candida. Dr. encouraged me to keep at it as long as I could and if it got too bad, we could...
  26. Unduki

    has anyone really benefited ie cured by exercise?

    I concur with the above post. Speaking from decades of experience, CFS is the most inconsistent thing I've ever had to deal with. It does not play fair, ever. That said, our bodies were designed to be used. We were made to move. I don't know about anyone else, but if I don't move, I ache...
  27. Unduki

    CFS is a metabolic condition!

    Dr. Kundargi, in Victorville, CA, who has studied CFS since the 70's and I believe, also suffers, told me it was caused by a virus from the herpes family. He prescribes Valtrex, Valaciclovir, and Co-Q10. After 2 years, I'm relatively symptom free and really, really loving my life. I was very...
  28. Unduki

    Do MEs cause CFS?

    I don't know anything about ME but I have this infectious disease doctor who has been researching CFS since the 70's with a group out of the University of Southern California. He sees patients from all over the US. I don't know how I ended up in his office but he told me CFS is caused by a...
  29. Unduki

    How many people have been ill with CFS/ME for over 20 years?

    I'm coming up on 30 years. I consider myself in remission since 2011 but I'm not fooling myself. It's still there, like a shadow.
  30. Unduki

    RiboGen for ME/CFS

    Hi, re-new here. I left all such groups years ago because I felt the answer wasn't in the synthetic drugs. I've been doing pretty good. There was a deep need within me to get back to the earth and all she offers. I think it was a good choice. I received an email from Pro Health about this...