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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. Mia Dit

    How often is ME progressive?

    Hi Cheesus, Another variable is the number of people who are too ill to participate. Obviously this only complicates the results since the very sick and the progressively improving people may not be participating. If I had more energy I wouldn't be on my computer. I'd be moving around or trying...
  2. Mia Dit

    How often is ME progressive?

    Great question. You're right absolutely correct he needs to follow through, but I need to learn how to better navigate my appointments and ask more relevant and direct questions. Peace, Mia
  3. Mia Dit

    How often is ME progressive?

    I'm very curious about the immune modulator? Do you mind disclosing what lab work you had where the values were far enough above/below normal to spur your doctor into action. I feel like my doctor is going far too slow with my treatment of symptoms, which he said are mimicking MS. I don't have...
  4. Mia Dit

    How often is ME progressive?

    I hear what you're saying. Bouncing back after pushing myself has not been my experience. My inability to bounce back to previous levels once a setback has occurred is very concerning. Recently I had a bad spell and was bed/sofa ridden for several weeks. Once I started feeling a little better I...
  5. Mia Dit

    The P2P Draft Systematic Review Is Up

    Your most welcome. I submitted a suggestion for review, so we'll see. Thanks for noticing my avatar. I think Friesian horses with all that wavy hair are gorgeous.
  6. Mia Dit

    The P2P Draft Systematic Review Is Up

    Hi WillowJ, I can help with this if you would like. Let me know. Peace, Mia
  7. Mia Dit

    The P2P Draft Systematic Review Is Up

    Thank you for all your hard work. This is a very labor intensive project and I'm grateful you were up to the challenge. One point I would like to offer for consideration regards the harms associated with a diagnosis of CFS. I read the entire proposal and I don't remember seeing this point made...
  8. Mia Dit

    ME patient found dead of heart failure and malnutrition

    Thank you GG, Love the saying. I often remind myself that not all doctors finished first in their class. We have several doctors on my husbands side of the family and my own. Fortunately, I think most finished their studies by more than the skin of their teeth, but I've met a few I seriously...
  9. Mia Dit

    ME patient found dead of heart failure and malnutrition

    jimells, The 58.7 years is the mean average, which means people lived longer than that age. No one knows how long we have and I refuse to give up. This illness affects people so differently. If you haven't seen the YouTube video "I Remember Me" you may want to watch it. Many people continue to...
  10. Mia Dit

    ME patient found dead of heart failure and malnutrition

    Hi SOC, Perhaps the reporter was mystified, but his health care providers must have been in denial. Some reporters miss the big picture as I think this one has, but the medical professionals have no excuse. In a paper published by Pub Med in 2009; Why mylagic encephalomyelitis/chronic...
  11. Mia Dit

    ME/CFS and the Magic of the Canine Factor

    We rescued two adult Airedales (mother and daughter) before I got sick. A year later I got sick and was bedridden for almost four months. I would always have one or both in the bed with me. It was hard for my husband to find room in our King size bed when his bed time came, but somehow we all...
  12. Mia Dit

    Meet the medical student who wants to bring down Dr. Oz

    Hi Catly, Yes, It's Friesian. They are so beautiful.
  13. Mia Dit

    Meet the medical student who wants to bring down Dr. Oz

    Hi TigerLilea I just want to clarify that I did not "knock" Dr. Oz., and I did not claim or imply Dr. Oz is a scammer. I did watch the last few minutes of his program discussing CFS and was not impressed. That said, I do not have enough viewing time to say anything about him or his show. What I...
  14. Mia Dit

    Meet the medical student who wants to bring down Dr. Oz

    It is difficult to see the harm when someone speak about a subject with apparent sincere concern and genuine interest. I agree that shows (not just Dr. Oz) need to be subjected to some type of medical oversight. They are medical doctors and as such even giving an endorsement to a herb or natural...