• 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.

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Search results

  1. J

    Edward Shorter to give talk on CFS at NIH

    So true, Shorter is a kin to Holocaust deniers and flat earthers. The NIH invite is the problem. Engaging this mentality challenged Neanderthal is a waste of energy.
  2. J

    Edward Shorter to give talk on CFS at NIH

    Yes, it's tiring but someone is to blame. I want to know who needs to burn at the(proverbial) stake. But how will we find out?
  3. J

    Edward Shorter to give talk on CFS at NIH

    Shouldn't it? If we are up there butts all the time about this kind of stupidity maybe they will be worried about making sure they are doing the right thing. They need to know we are watching, are unhappy, and willing to do something.
  4. J

    What tests to start with?

    Try this site: http://www.name-us.org/MECFSExplainPages/TestAbnormalities.htm Those are good tests and there is a fairly exhaustive symptoms list on the site too. Some tests your doctor or insurance may not go for though and there are other standard exclusion your doctor's will likely do to...
  5. J

    NIH intramural research program update

    @Sasha, I agree good over all assessment and I am hopeful for what a good study can bring.
  6. J

    NIH intramural research program update

    I see Wallit suspiciously absent from that assessment. The psychobabble that he has used in the past shows that he believes there is a physiological component but also a notable psychological component involved. That with the inclusion of FMD patients leaves me a little suspicious. This could...
  7. J

    NIH intramural research program update

    I disagree, if he knows there is a problem with the lead investigator and does nothing about it he is part of the problem. Regardless of weather some one else appointed Walitt. I think there is a problem, nothing excuses Walitt's wording on FM and ME. Even if he really believes there is a...
  8. J

    Misinformation About a Disease Has Dire Consequences

    After watching the hour long Grand Rounds video I have to say your assessment is quite lacking. Maybe you should watch the video a few times. The language they used was quite clear that it is a biological illness and the CDC seems especially concerned with helping us. I was a little concerned...
  9. J

    Why so little ME/CFS research from France and Germany?

    Certainly right, even though there is some merritt to counseling after the systemic abuse, for decades, from more than one country and organization because of psychiatric pseudoscience, no psych research is acceptable to me.
  10. J

    Cure: A Journey into the Science of Mind Over Body by Jo Marchant

    Yup, journalistic malpractice brought to you by the Guardian.:cautious: They deleted my comment. My guess it was from calling it "journalistic malpractice":rolleyes:
  11. J

    Raw vegan (or almost raw-vegan) issues with CFS

    There are people that say vegan and vegetarian are unhealthy. Humans are dietary opportunist through out evolutionary history which includes meat. Our bodies were not designed for some of the vegetables and grains in the modern diet. Not saying it doesn't work for some people but I think some...
  12. J

    Inflammation & Food Prep

    Trying the 30 day fresh start then add from there is the best method. As you add things in you will find out what works for you. If you don't it makes the process harder. I suggest staying away from fructose as it has many health concerns(including inflation) even when balanced with glucose and...
  13. J

    Inflammation & Food Prep

    Just look for paleo recipes on the internet. If you haven't looked at paleo it is all about anti inflammatory, it's been around for years, and the 30 day fresh start helps eliminate food that are bad for you personally. Generally any method cooking of vegetables is fine even fried if done with...
  14. J

    Possible use of repeated cold stress for reducing fatigue in chronic fatigue syndrome

    There is science behind it http://fitness.mercola.com/sites/fitness/archive/2012/04/27/cold-water-immersion-benefits.aspx
  15. J

    Anyone make money online?

    There are lots of rackets out there like there was in the past for working from home so be mindful of that. Something involving eBay or Craig's List can be a good way to do things if caution is used. I personally have used Craig's List to purchase broken and cheap computer's, refurbish them...
  16. J

    Action for ME Tosses Sir Simon Overboard

    Wishful thinking. You have to remember the pseudoscience psychiatry is not bothered by such a small trifle. Freud would not approve of such hysteria.:cautious:
  17. J

    You think ME is bad - try having a "Psychogenic movement disorder"!

    Another fine product, brought to you by the pseudoscience of psychiatry:rolleyes:
  18. J

    Chronic fatigue/ME or something else?

    It doesn't seem to fit ME. I don't know about CFS with the ever fluid and mutiple definitions. Hey, I don't have a medical degree though. If it was me I would find a D.O. Doctor of Osteopathic if you have already been through a lot of different specialist and tests. Don't think it's something...
  19. J

    Severe ME/CFS - Media coverage in The Sun (UK)

    When you look at the history of psychiatry it has been an embarrassment to the medical community. So many physical conditions have been treated as mental illness. There are no real mental diseases as it doesn't fit the etymology, just illness. At it's worst it's pseudoscience that destroys lives...
  20. J

    Severe ME/CFS - Media coverage in The Sun (UK)

    I have been trying to find solid references to those with no luck. It would be nice to have a concise list to use as ammunition.
  21. J

    Needing to dumb myself down, SNS activation

    Interesting how it helps some. For me it would cause at least a short crash.
  22. J

    Aust govt pins its hopes on NIH ME/CFS research

    Sad part is some smaller European countries are doing more than all the larger ones.
  23. J

    "Another request for data from the PACE trial" 36 more scientists join request for PACE data

    Of course BS never adds up. "You can't make sense out on nonsense".
  24. J

    "Another request for data from the PACE trial" 36 more scientists join request for PACE data

    And indeed it is as a building tidal wave is heading there way.
  25. J

    "Meet the Robin Hood of Science"

    Yes, he is well known in IT circles. His is a story of people on power destroying others that most of us can appreciate. And a powerful and sad one too.
  26. J

    NIH/CDC: Stop the CFS Study Using Reeves Definition & Cancel the Study’s Presentation at the Feb. 16

    People MUST stop putting "empirical" with these criteria even in mentioning them like they did on the petition. There is NOTHING empirical by definition about Reeves. Saying something is empirical implies you are validating it. Some one needs to remove such inflamority wording!
  27. J

    zinc switched the lights back on

    I just started talking zinc and have had a notable improvement. I was reading about KPU and found this http://planetthrive.com/2010/04/hpukpu-protocol-for-lyme-and-autism/ Three quarters of the HPU "potential symptoms" discribe me. Great information, thank you very much.
  28. J

    How would you describe your brain fog?

    Like someone in there eighties that has had a stroke. I talked to my mother about my brain fog and she and my father do a lot of the same things. Both in there eighties both had strokes. I feel general confusion most of the time. I think it's getting worse some times but my memory is so shot I...
  29. J

    What Are Your Most Amusing (Or Disconcerting) Brain Fog Experiences?

    I've done that with family and health care professionals. I start describing it "you know, that thing .............used to ..........change channels"
  30. J

    What Are Your Most Amusing (Or Disconcerting) Brain Fog Experiences?

    My memory is so shot I can't remember recent events well since this major onset. However, I remember a few years ago I was on my computer and the screen said "press any key" I looked for a couple minutes perplexed and I just could not find the "any" key:thumbdown:. Went to the kitchen for a...