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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. S

    High Altitude and ME

    I recently arrived home from the trip and would like to share my experiences: We spent a total of eight days at altitudes ranging from 11150 feet to 13500 feet and then six days at 8000 feet. I took 250mg of Diamox twice a day as a precaution during the visit at the highest altitudes and that...
  2. S

    Picariello, Chalder et al: "It feels sometimes like my house has burnt down,[...]"

    The CFS definition is quite broad, often misunderstood and could allude to a list of conditions of an almost astronomical number. One can wonder what underlying diagnosis they are refering to in the study. To name a few: AIDS, MS, anemia, congestive heart failure, bronchitis, hypoglycemia...
  3. S

    High Altitude and ME

    Interesting about B12. I follow Fredd's B12 protocol and perhaps that'll help should I chose to go through with the trip. May I ask if the altitude made your condition worse, lingering even after reaching sea level again? The reason for me asking is because I've a chance, at long last, to...
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    High Altitude and ME

    I would like to ask if any of you have any experience with high altitudes after you came down with ME. I'm talking altitudes between 8000 and 12500 feet. For how long did you remain on such an altitude and what effect did it have on your condition?
  5. S

    CDC $5.4 million annual CFS budget under threat with proposed funding cuts

    Of all the cuts proposed by Trump the NIH cut will probably be the hardest to implement. There will be a lot of protests from "high ranking" people, and probably even from congress.
  6. S

    The Guardian picks up the NYT story! - an opinion piece from a patient

    A good article. It's an interesting development that has been set in motion in the media world. I hope it's only the beginning. I disagree with one thing from the article however; I most certainly do not believe we're decades from effective treatments. But I guess the comment was probably meant...
  7. S

    Speech Difficulties

    I've been stuttering for almost my whole life and since I got afflicted by ME it got considerably worse. I used to think it was merely due to a decline of my psychological health or because of my general drowsiness and tiredness. However, after reading a recent study about a possible cause to...
  8. S

    Weakness after tonsillitis

    Penicillin V (phenoxymethylpenicillin) for ten days.
  9. S

    Weakness after tonsillitis

    I recently had tonsillitis for about 7 days, with 3 days of fever. I got antibiotics from my doctor fairly early and experienced an improvement after a few days. I've had me/cfs for about two years and it has been a very slow progress with many improvements and crashes. I've managed the disease...
  10. S

    B-12 - The Hidden Story

    I take 500 mg "L-carnitine-L-tartrat" every day. I don't feel anything after taking it. Perhaps http://www.iherb.com/product-reviews/doctor-s-best-best-l-carnitine-fumarate-855-mg-180-veggie-caps/4939/?p=1 will work better. It's worth a try. By ALA you mean alpha lipoic acid? I take...
  11. S

    B-12 - The Hidden Story

    I've been on Freddd's B12 protocol for about one month and I'm a bit perplexed. I've had me/cfs for about 9 months and my illness has been progressive; slowly building up during the months. It can still be regarded as mild and I'm able to work full time, but my occupation is far from mentally...