• 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.

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  1. ixchelkali

    CDC Conf Call-Follow-up Poll: Would YOU do 2-day CPET if in CDC Multi-Site Study?

    I absolutely would. If I'm going to participate in a study, I want it to yield accurate results, and in ME/CFS that means a two-day test. Post-exertional malaise is a hallmark of the disease; that's when the real abnormalities show up. Research that doesn't take that into account is a waste.
  2. ixchelkali

    Phoenix Rising and Me

    Hi, Jody. Nice to see you here again. I remember you from those earliest days of the forum. Like you, I had been reading Cort's articles for quite a while. As I was first wading through the scientific papers on ME/CFS (or CFIDS, as I thought of it then) it was so helpful to have him translate...
  3. ixchelkali

    Dr. Chitra Bhakta

    Dr. Chitra Bhakta, in Santa Ana, CA: does anyone know anything about her? Her website says she treats ME/CFS, and she has a section on methylation detox, written by Rich, summerizing a talk she gave on it. I'm intrigued but also leery, because she talks about a lot of very expensive...
  4. ixchelkali

    OMG!!! Ear piercing = MAJOR relapse???

    I'm sorry to hear you're having such a bad flare. The problem is that there are so many things than can cause a flare it's often impossible to identify the trigger. You may have been exposed to a bug and your wonky immune system has gone into overdrive. Or maybe it's that stress you...
  5. ixchelkali

    2012 Aviva Contest--Funding Opportunity for Medical Equipment for ME

    39th place! We're making progress. But not enough. I'm bumping this up as a reminder, because most of us have short-term memory problems. Please vote every day. And please remind me.
  6. ixchelkali

    Negative publicity on PWME - the motive?

    Well, I don't know what the OP was thinking of by negative publicity, but the headline in The Telegraph health section "'It's safer to insult the Prophet Mohammed than to contradict the armed wing of the ME brigade"...
  7. ixchelkali

    2012 Aviva Contest--Funding Opportunity for Medical Equipment for ME

    The good news is that we're moving up and are now rank 64th. The bad news is that so far there are only 383 supporters. The good news is that I know we can do better. C'mon people. If we aren't for us, who will be? This one is really easy to register for and you don't have to give them...
  8. ixchelkali

    CFSAC meeting Oct 3-4, 2012

    Thanks, that's what I was looking for.
  9. ixchelkali

    HHV-6A and HHV-6B now recognized as two distinct viruses

    I'm hoping that was rectal swabs. :p I know, it's not fair to make fun of brain-fog dyslexia, but that one was too good.
  10. ixchelkali

    CFSAC meeting Oct 3-4, 2012

    Does anyone know if they're having live streaming video this time? I didn't see anything about it on their website. I sent an e-mail asking, but haven't heard back yet.
  11. ixchelkali

    What and how to cook, when you can't cook

    Italian Beef – Crockpot This one does use a mix, Italian dressing mix. But if you can handle that, it’s pretty easy and tasty. 10 servings 3 lb beef round roast 2 packages Good Seasons Zesty Italian Dressing mix 4 cups beef broth 1 bell pepper, sliced Trim any visible fat off roast. Put...
  12. ixchelkali

    What and how to cook, when you can't cook

    Crockpot Chicken with Salsa 4 Servings 4 chicken boneless skinless chicken breast halves 1 16-oz jar salsa 1 large onion, cut in wedges 1 sweet red pepper, diced* 1 green pepper, diced* 1 yellow pepper, diced* Place chicken in Crockpot & pour salsa on top. Turn on low. After 1 hour, add...
  13. ixchelkali

    2012 Aviva Contest--Funding Opportunity for Medical Equipment for ME

    I found this easier to register and vote for than the Chase contest. I could even do it brain-fogged. And they don't require access to your Facebook data. C'mon, folks, let's help Canadian patients get a treatment center set up. If we don't help us, who will?
  14. ixchelkali

    2012 Aviva Contest--Funding Opportunity for Medical Equipment for ME

    Overview: Well over 1 million Canadians suffer from chronic illnesses such as myalgic encephalomyelitis (also known as chronic fatigue syndrome), fibromyalgia, multiple chemical sensitivities and Lyme disease and do not get adequate care and treatments by our health care system. A new Complex...
  15. ixchelkali

    What and how to cook, when you can't cook

    Pork Chops with Dijon Cream Sauce Yield: 4 Servings 4 boneless center-cut pork loin chops (1/2 inch thick)* 1 Tbsp. olive oil salt and pepper to taste 1/3 cup chicken broth 1-1/2 Tbsp Dijon mustard 1/3 cup evaporated milk Trim fat from chops. Sprinkle both side of chops evenly with salt...
  16. ixchelkali

    What and how to cook, when you can't cook

    Crockpot Pineapple Chicken 4 servings 4 boneless, skinless, chicken breasts paprika black pepper 1 (19 oz) can unsweetened pineapple tidbits (undrained) 2 Tbsp Dijon mustard 2 Tbsp soy sauce 2 cloves garlic, minced Put chicken in bottom of Crockpot. Sprinkle with paprika and pepper...
  17. ixchelkali

    What and how to cook, when you can't cook

    Split Pea Soup This one takes a little more prep, but I’m posting it because I like it, and you can do the prep a little at a time (or do the prep one day and cook it the next). 8 servings 2 cups dry split peas (about a lb) 7 cups water 2 carrots, diced 2 stalks celery, finely chopped 1...
  18. ixchelkali

    What and how to cook, when you can't cook

    Quick and Easy Black Bean Soup 6 servings 1 can (or 2 cups) chicken broth 1 can refried beans 1 can black beans, drained and rinsed 1 can corn 1 cup salsa 1 cup cooked skinless chicken or turkey (you can even use canned) Note: all cans are about 15 oz, the medium sized ones. In a...
  19. ixchelkali

    What and how to cook, when you can't cook

    Taco Soup Yields 12-15 cups Easy because the only prep is chopping an onion and opening cans. Yummy. 1 large onion, chopped 1 packet taco seasoning mix 2 cups whole kernel corn, frozen* 1 can or 2 cups chicken broth 1 can black beans, undrained 1 can white beans, undrained 1 can...
  20. ixchelkali

    What and how to cook, when you can't cook

    Egyptian Rice Yields 4 servings 1 lb 93%-95% lean ground beef 1 small onion, chopped 32 oz. beef broth 2-3 Tbsp soy sauce 1 tsp Worcestershire sauce 1 cup sliced mushrooms (or one can, drained) 1 cup raw brown rice* salt and pepper to taste plain yogurt or sour cream Brown hamburger &...
  21. ixchelkali

    What and how to cook, when you can't cook

    North African Style Stovetop Casserole 4 servings 1 lb extra lean ground beef 1 onion, chopped 1/2 cup raisins 1/2 cup lentils, half-cooked or leftover cooked 1 cup brown rice, half-cooked or leftover cooked* 1 tsp cloves 1 tsp cinnamon 2 cups beef broth In Dutch oven or heavy pot, brown...
  22. ixchelkali

    What and how to cook, when you can't cook

    Chicken Adobo 4 servings Ingredients: 4 pieces of skinless chicken, breast or thigh 2 tsp canola oil 1/3 cup soy sauce 2/3 cup vinegar 1/2 medium onion, chopped Instructions: In a Dutch oven or heavy skillet, brown the chicken in oil. Add other ingredients, cover and simmer on low heat...
  23. ixchelkali

    What and how to cook, when you can't cook

    I also use the frozen brown rice that urbantravels mentioned, available at Trader Joe's and at Fresh & Easy. You can make your own, too. Make a big pot of brown rice and freeze it in freezer containers or baggies. It reheats in 2-3 minutes in the microwave. Boxes of organic broth + precut...
  24. ixchelkali

    A Multicenter Blinded Analysis Indicates No Association between CFS/ME and either XMRV or pMLV

    You've contradicted yourself here, because 2 of the six people who selected the patient cohort for this study, Lucy Bateman and Nancy Klimas, were authors of the ICC.
  25. ixchelkali

    A Multicenter Blinded Analysis Indicates No Association between CFS/ME and either XMRV or pMLV

    Once again, I must disagree with you on this. A scientific paper must list the tests that were done as part of the study, as this one does. However, it doesn't have to list all of the tests that may have been performed on the patients prior to the study in the process of diagnosing them. In...
  26. ixchelkali

    In Memory of Rich Van Konynenburg.

    Thank you for letting us know, and condolences on your loss. This is hard news. Rich was a kind and generous member of our community. I will truly miss him. Posting through tears.
  27. ixchelkali

    What causes weight loss?

    Here's an article that discusses many of the possible causes of unintended weight loss in the eldery: http://www.temple.edu/imreports/Weekdocs/approach%20to%20elderly%20weight%20loss.pdf
  28. ixchelkali

    What causes weight loss?

    There is a condition called cachexia, the loss of lean body mass, which can occur as the result of several diseases, including some autoimmune diseases. It's most commonly seen in the eldery and in AIDS patients. They don't know what causes it, but they think that proinflammatory cytokines play...
  29. ixchelkali

    A Multicenter Blinded Analysis Indicates No Association between CFS/ME and either XMRV or pMLV

    I disagree with your reasoning. They said that the patients met the Fukuda and Canadian Consensus Criteria. If that is true, then the clinicians would have ensured that they did, meaning that they would have performed the tests, found the symptoms, and ruled out the other diseases, to meet the...
  30. ixchelkali

    A Multicenter Blinded Analysis Indicates No Association between CFS/ME and either XMRV or pMLV

    You're right, and I intended to be referring to XMRV and those pMLVs, but I didn't make that clear. Thank you for the correction.