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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

    Extreme Pacing

    My experiences of pacing are similar to both of yours. First my ME was stabilized then a slow process of improvement begun. I haven't had PEM for over a year and I enjoy living now. I don't know if I'll ever reach full remission with the current speed of improvement but there is no alternative...
  2. S

    Extreme Pacing

    peggy sue and Bob: how long have you used your current pacing principals? Do you ever experience any major setbacks/PEM using your versions of pacing? Are you still making overall improvements?
  3. S

    Extreme Pacing

    best of luck to you too taniaaust1 and thank you for sharing your experiences. Your experiences shows that we always have to be cautious, even when we reach full remission.
  4. S

    Extreme Pacing

    What I mean by extreeme pacing is pacing that completely prevents PEM. I didn't know about the term ART but it's more or less what I tried to express. What caused you to fall out from full remission? Here is another example of how to do pacing. It's called the 70 %-rule, I learned it from my...
  5. S

    Extreme Pacing

    Has anyone exercised extreme or very strict pacing over a long period of time (minimum 6 months)? It would be interesting to know about your experiences; good and bad, side effects etc.
  6. S

    Has anyone been completely cured of CFS?

    This is old news but the clip shows two ME patients who was cured from the illness: Press subtitles if you don't see subtitles in english I have to add that I don't know what happened after the treatment and how the patients are doing now.
  7. S

    Why ME/CFS is NOT an appropriate name

    I notice a lot of "could be", "it's probably", "it's possible" and so on. I don't have any problems with speculations, assumption or possible causes but they shouldn't be viewed as conclusive evidence. If you give an illness a name the name should be based on conclusive evidence otherwise there...
  8. S

    Why ME/CFS is NOT an appropriate name

    I'm sorry but I don't understand what you mean, could you please be more clear and specific.
  9. S

    Why ME/CFS is NOT an appropriate name

    What about the 1/2 to 2/3 of the patients who didn't have inlammation in the brain, how do you explain that?
  10. S

    Why ME/CFS is NOT an appropriate name

    I don't see any harm in discussing if Me is an appropriate name or not. This is after all a ME/CFS forum and the purpose of a forum is to share thoughts and have discussions. ME means that our symptoms is caused by an inflammation of the brain and spinal cord, don't you think that's misleading?
  11. S

    Why ME/CFS is NOT an appropriate name

    I don't understand this part, is it name suggestions?
  12. S

    Why ME/CFS is NOT an appropriate name

    You just wish they could have a taste of our exhaustion at those moments. Tell them to breathe through a straw next time, that would give them a glimpse of the difference.
  13. S

    Why ME/CFS is NOT an appropriate name

    I totally agree, in addition such names would distinguish our illness from all other diseases and disorders.
  14. S

    Why ME/CFS is NOT an appropriate name

    These names already exists as an umbrella name for a couple of diseases including CFS. M.E. would definitely qualify to be in this group but that wouldn't solve the name issue. http://en.wikipedia.org/wiki/User:Djagnow/Neuro_Immune_Dysfunction_Syndromes http://www.nids.net/
  15. S

    Why ME/CFS is NOT an appropriate name

    I wouldn't be surprised if the mechanisms that cause M.E. are the same mechanisms that causes Fibromyalgia, Rheumatism and CFS.
  16. S

    Why ME/CFS is NOT an appropriate name

    I don't have any statistics but I don't think there is a correlation between difficulty and credibility. Cancer is an easy name and yet it has undoubted credibility. On the other hand most names have a medical term in latin that is difficult to pronounce so I guess we can both have what we want...
  17. S

    Why ME/CFS is NOT an appropriate name

    Best names so far. My brain told my body to laugh my ass off but my body replied that there is no energy for that. I know what you mean but we've come so far now and we know, for example, that PEM is waiting around the corner after excessive physical activity. My suggestion would be GECNBA...
  18. S

    Why ME/CFS is NOT an appropriate name

    I want to modify this part. There are no requirements that names for diseases or disorders have to be easy to remember and pronounce for patients but Myalgic Encephalomyelitis is difficult to pronounce for most people, even doctors. My doctor struggles with the pronunciation every time he tries...
  19. S

    Why ME/CFS is NOT an appropriate name

    I had some thoughts about this recently that I want to share. Lets take on ME first. First of all, as many have mentioned before, it's very difficult to pronounce and remember the name Myalgic Encephalomyelitis. This make ME a very stupid choice since cognition difficulties is one symptom of...
  20. S

    Pain in chest area

    Thanks to everyone for your feedback. If you have more suggestions just post it on this thread, I will take all suggestions and advices into consideration. It would really be a relief to get rid of this symptom. maryb: I've tried lymph drainage a couple of times and it eased the pain and the...
  21. S

    Pain in chest area

    Thank you all for your responses. I've done x-ray on my upper body and nothing wrong was found. Actually I was in a car accident when I was about 5 years old. I car drove in to me and I was thrown away a couple of meters. I don't now the speed of the car. According to my parents I was sent to...
  22. S

    Pain in chest area

    Willow J and SOC: nice to meet you and I appreciate your concern. I've done every examination you can possible imagine but the doctors could only confirm that everything is fine with all my organs. That was good to hear but I still don't have any explanation to this symptom. It's not as acute as...
  23. S

    Pain in chest area

    Hi, I have a very strange symptom that I want to describe and if anyone recognizes this symptom, please let me know. The symptom I experience is pain in the chest area (left side). The epicenter is somewhere between my armpit and my chest but when the pain grows it spreads both downward and...