• 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 (FM), 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. N

    Reductions in Cerebral Blood Flow Can Be Provoked by Sitting in Severe Myalgic Encephalomyelitis... (Van Campen et al. 2020)

    I’m happy with this sort of research. I have always known this. When i was very severe and would try to sit upright i would get very spaced out, light headed, would become very pale and became unable to form coherent sentences. It is a very serious symptom that most doctors and people could not...
  2. N

    Does anyone with CFS get back to 100% ever?

    100% full recovery seems rare (<10%) , but slowly over the years “recovering” up to fairly normal functioning is common. Pacing would still be necessary . Like being able to work full time, socialize, but no exercise.
  3. N

    Hard to Talk

    Hey. I have gotten a lot better. I still can’t talk for entire days straight but i can actually talk for a few hours a day now, even when sitting upright. I was bedbound and only able to talk a few sentences a day in 2016. I can only suggest to just talk as much as you are able to. If it’s too...
  4. N

    Forever worrying I’ve let my children down

    I’m sorry you are going through this. It’s not your fault. Your children know you love them, that really is the most important thing. Kids are resiliant. I myself grew up with a mentally disabled sister and a single mother (different situation but also sort of a strain on the family and my mom)...
  5. N

    Article about new potential treatment by Victoria Bohne, in Norwegian

    Maybe it’s the difference between soluble and insoluble oxalates that’s importanot here?
  6. N

    Article about new potential treatment by Victoria Bohne, in Norwegian

    This can’t be that difficult to do at home? Or am I missing something?
  7. N

    Article about new potential treatment by Victoria Bohne, in Norwegian

    Hi @Janet Dafoe (Rose49) Has Ron seen this?
  8. N

    Janet Dafoe in hospital

    :bouquet:Best wishes :heart:
  9. N

    Article about new potential treatment by Victoria Bohne, in Norwegian

    So, does any one have more information about what happened with this?
  10. N

    $1,000,000 donation to OMF!!!!!

    Lovely
  11. N

    Woman 'with ME' won world kickboxing champs

    Obvious misdiagnosis is obvious
  12. N

    The effects of therapies for ME and CFS should be assessed using objective measures

    Yes! I want patients to be able to walk longer distances, sit up more often, socialize more often, and go back to school/work. Not feel less fatigued but still unable to be more active. o_O
  13. N

    Do Chronic Lyme Patients experience Post-Exertional Malaise?

    I think there's a lot of chaos. I know of a few patients who have quite a classic ME/cfs picture with severe limitations in daily life, crashes after very minor exertions (PEM) etc. who "identify" as chronic Lyme patients. They talk on Lyme forums and try antibiotics that don't work. Some seem...
  14. N

    Daily Express doctor covers ME/CFS (22/8/2017)

    Some people seem to only be worried about the symptoms they can see their selfs when some one is sick. Especially when it's not cosmetically pleasing lol. When I got ill my acne got a lot worse and some people and 1 doctor seemed to be more worried about my terrible looking skin than about the...
  15. N

    Psychiatry starts to lose its grip on anorexia nervosa

    Interesting. I have a friend who had anorexia for years and has completely recovered with psychological treatment. She has a normal weight and eating pattern now. In her case it seemed to be mainly psychological.
  16. N

    Progressive Insomnia before my crashes

    No, severe fatigue is a signal that you need to rest. Exercise is good for healthy people, but when you have ME/cfs exercise is not tolerated well, as you are noticing with your symptoms. You have to listen to your body and take things slower. If that means you can't work full time then that's...
  17. N

    Progressive Insomnia before my crashes

    Yes, this has happened to me too a lot in the past so now I have learned to avoid it as much as possible. You cannot recover when you keep crashing.
  18. N

    Intermittent fasting and CFS/ME?

    I am female too and used to undereat a bit. I think I ate 1500 calories a day. My weight was stable (BMI of 19). I then decided to eat a lot more, between 2200 and 3000 calories a day and noticed an increase in energy. I still weigh the same but am eating much more and am more functional. I eat...
  19. N

    Intermittent fasting and CFS/ME?

    I eat all my meals between 12 and 8 pm and feel fine with that. I do have to eat A LOT in a small window of time. I eat 2500 calories a day and sometimes can't fit all that food in my stomach LOL. I want to add that I think caloric restriction and fasting for entire days is one of the worst...
  20. N

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    I'm so excited! And I just can't hide it :lol: Seriously though I am really looking forward to following everything Saturday from the comfort of my own home :D
  21. N

    New breakthrough research: video games to activate people with ME

    LOL! Can you imagine you - as a serious adult- going to a doctor for severe CFS and energy production problems and the doctor seriously being like "I'll prescribe you an Xbox" :lol::cry:
  22. N

    In memory of Merryn

    Oh noo:cry::cry: Rest in peace Merryn :heart:
  23. N

    Development of a recumbent isometric yoga program for patients with severe CFS/ME: A pilot study

    Hahaha! Yoga! A "feasible and acceptable treatment for patients with ME/cfs". A TREATMENT! These people are seriously nuts and will look like complete fools once we have an objective diagnostic that will show yoga is not treating anything or even makes the disease worse if patients (this study...
  24. N

    Dr. Ronald W. Davis Answers Patient Questions: Q and A follow-up to 2/21/17 Research Update

    Interesting what he said about antibiotics. I was on multiple courses of different antibiotics (for acne :bang-head::bang-head:) in the year I began getting ill. Might have been a factor in triggering the disease. Just made another donation :)
  25. N

    Cytokine Inhibition in Patients With Chronic Fatigue Syndrome: A Randomized Trial

    That's what happens when you include people with "severe fatigue" in a CFS study :cautious::bang-head:
  26. N

    Feeling very heavy - symptom that rarely gets mentioned

    I have this exactly and have explained it to numerous doctors like that. It feels like I am on an other planet with much higher gravity, I feel like I am being pushed in my bed when lying down and it makes my entire body extremely heavy. It was one of my first symptoms and absolutely has to do...
  27. N

    Cort's Blog: The NIH's 5 Million Dollar Funding Increase for Chronic Fatigue Syndrome(ME/CFS).

    This is great news for people who will develop ME in 2062 but not for the millions of people very ill right now. This is moving way too slow. :aghhh:.
  28. N

    The Lost Years

    I got sick age 18, almost 5 years ago. Last year housebound and mostly bedridden.