• 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. kauri

    The Family Member ME/CFS Prevalence Poll Take II

    My family is myself and 4 adult children. Only my youngest son (7 years old then), and I lived together when we both became sick. We both came down with a flu-like illness within about a week of each other, and took several years to deteriorate to the point of having to stop work and school...
  2. kauri

    Interactions with Medical Professionals

  3. kauri

    Our Stories of Stigma and Support from Providers and Others

    I'd say that doctor had a pathological lack of empathy. Not only that but ignorant. We now know that viruses are implicated in over 60% of obesity. You are sadly right that not only ME/CFS patients are abused by doctors. Unfortunately, a self-regulated culture with very real power to wield...
  4. kauri

    Spanish HIV Experts Give Aid to ME/CFS

    Thank you for bringing this so interestingly and clearly to our attention. You summed it up so well and drew connections with other research to set it in context beautifully. I liked the photo too, nice to see the people involved, people working to help us. I find it striking that a team very...
  5. kauri

    Our Stories of Stigma and Support from Providers and Others

    Thank you for describing your experiences so clearly. This is a major problem in the U.S. as well. The excuse for dumping ME/CFS with primary care, rather than assigning specialists, has been, "Well since you have a multi-systemic illness, the primary care physician can be the gate-keeper and...
  6. kauri

    ME/cfs News coverage in Spain

    This could be exciting. One of the things we need most is to encourage doctors to diagnose ME/CFS and bring those 80% of wandering sick people wME/CFS in out of the cold to access support. I like the approach, instead of focussing on one criterion, look for a characteristic group, a...
  7. kauri

    Our Stories of Stigma and Support from Providers and Others

    I like both your ideas, separating them and altering the "Stories" title. I'm fading now so have to postpone, but will follow your good ideas. Hopefully tomorrow. Thanks Sasha.
  8. kauri

    The ME/CFS Stigma

    It is just too much to ask of each on of us, sick as we are, to repeatedly try to counteract the willful ignorance of the people in our lives. This illness is far too complex to easily explain. And we shouldn't have to. There are literally hundreds of peer reviewed scientifically controlled...
  9. kauri

    Our Stories of Stigma and Support from Providers and Others

    I so much appreciate your suggestions. What happened was this. Originally, my concern was with gathering stories and the poll was an afterthought. Gathering the stories is still a priority and they are slowly coming, each one a treasure (a tragic treasure, a bit like the AIDS quilt). I slowly...
  10. kauri

    Our Stories of Stigma and Support from Providers and Others

    Your story sadly demonstrates behaviour that is outrageous but not uncommon, and that is why it is so wonderful that you have been able to speak up in such a clear and obviously sane voice. It will definitely be included with the petition packet I am preparing. The stories will be grouped under...
  11. kauri

    Our Stories of Stigma and Support from Providers and Others

    It's exciting to see the polls numbers rising. If we could get 40 respondants, it would be a strong addition to the petition for better understanding among providers. A little explanation of the poll might help. The petition is for the AMA to be held responsible for properly educating...
  12. kauri

    Our Stories of Stigma and Support from Providers and Others

    Thanks so much for taking the time to do this. I have read your stories and they are very moving, and so well boiled down, which makes them really hit home. You really understand that "less is more". What comes across is someone refusing to give up in the face of a prolonged and callous absence...
  13. kauri

    Our Stories of Stigma and Support from Providers and Others

    This is exactly why I am doing this. The government gives doctors power over us and requires us to get their signature to receive medical benefits, so they have the responsibility to hold the doctors accountable for their treatment of us.
  14. kauri

    Our Stories of Stigma and Support from Providers and Others

    Thank you so much for sharing this, it is a valuable, expressive and succinctly written testament. The treatment you have and are experiencing is horrific and I am so sorry that you have had to endure this. You have raised a very important point that had been missed. The very real danger we get...
  15. kauri

    Short Survey for Center in Southeast

    Is this related to the center of excellence that has just opened in the Southeast, in Florida? Nancy Klimas is there. It's called Nova Southeastern?
  16. kauri

    Our Stories of Stigma and Support from Providers and Others

    It's so good to hear your doctor is doing that. Statistically, she is in a small minority. At the moment I am focussed on an effort to bring pressure on the leaders of the medical establishment, to require more doctors to act like yours, who sounds exceptional. The stories were originally for...
  17. kauri

    Our Stories of Stigma and Support from Providers and Others

    Oh yes. That's important to include. Thanks If you have more suggestions, they'd be appreciated.
  18. kauri

    Our Stories of Stigma and Support from Providers and Others

    Yes, my family situation is the same. All at a distance. It wouldnt work for us. It sounds as if you have very little free (functional) time that you can spend how you like. "A good handout" is a really good idea. I'll give it thought. Thanks for your suggestion. Did you want to say any more...
  19. kauri

    Our Stories of Stigma and Support from Providers and Others

    Thanks for reminding me to clarify. We're proposing doctors also have remedial education. Of course you're right. We know so much more about our illness than our doctors, almost always.And they need to respect that. That's a subject for another article. I do exactly what you do, give my doctor...
  20. kauri

    Our Stories of Stigma and Support from Providers and Others

    Thank you! Private Messaging me with stories is fine and I'm happy to edit.
  21. kauri

    Our Stories of Stigma and Support from Providers and Others

    Thank you for voting. I would appreciate your story. I am willing to gather UK stories and send an adapted packet to the UK official with the power to influence policy. It will include a letter, a suggested remedial curriculum for providers, an appropriately edited version of the article, the...
  22. kauri

    Our Stories of Stigma and Support from Providers and Others

    Thank you so much. I understand many stories cannot be compressed into 2 or 3 paragraphs. Just do the best you can. And thank you again. These stories are incredibly valuable and it can be very hard for us to write.
  23. kauri

    Phoenix Rising: Worth as much as Vogue?

    I'm a new member and this has drawn my attention to the Amazon source of funding. I shop with Amazon all the time, being bedfast, and loving their truly no-hassle return guarantees. I'm very appreciative of keeping the fundraising presence unobtrusive and think occasional reminders of things...
  24. kauri

    The ME/CFS Stigma

    NEW Thread on "General CFS News! I'd very much appreciate your responses to a poll I've started which asks "Have your providers initiated education of your family and support network?" We could really use some numbers on that. I have started a thread in the "General CFS News" section named "Our...
  25. kauri

    Our Stories of Stigma and Support from Providers and Others

    Stories are the most powerful way to change atttitudes. We need your story of a time when a doctor, or someone in your life, reacted to your ME/CFS in a way that was either unsupportive or supportive. You may want to share the impact on you. Please try to keep your replies short, under 250 words...
  26. kauri

    The ME/CFS Stigma

    No they should'nt. I want to try to change this. President Obama is an extraordinarily open president.This a unique opportunity for action. The President had placed ME/CFS on high priority and these are the 18 months of his presidency when he is most easily able to get things done. May, ME/CFS...
  27. kauri

    The ME/CFS Stigma

    Thank you for sharing this. It makes me happy I wrote it
  28. kauri

    The ME/CFS Stigma

    Here in the U.S. its a perennial problem because the old name "Chronic Fatigue Syndrome" is the only one most health practitioners are aware of. Avoiding naming the illness is sometimes necessary, but sometimes not an option, and also not so great for our advocacy. Every apparently sane person...
  29. kauri

    The ME/CFS Stigma

    This is the best advice. And having the words to poke back helps. What can you say to the classic "I'm tired too"?
  30. kauri

    The ME/CFS Stigma

    You make a very important point. This is medical abuse and many of us are traumatized by it. When doctotrs tell him he should try to exercise more, the very thing he is heartbroken not to be able to do., my son calls it "poking our wounds". .