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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. MishMash

    FDA Drug Development Workshop: Part One

    A brand new immune modulating drug was just approved for MS. It's called BG-12. It is being prescribed now to patients (literally starting this month). The stock of the company of Biogen shot through the roof because the trial results were so convincing. It really WORKS, in other words, unlike...
  2. MishMash

    FDA Drug Development Workshop: Part One

    All of this could have been put out by the Chronic Fatigue Association of America back in 1997. Do you really think any of this info adds anything valuable to the discussion? The fact that people get PEM? They get cognitive issues? There is absolutely no room for common sense in any of this...
  3. MishMash

    Comment by 'MishMash' in 'Antidepressants - the universal treatment'

    Serotonin-based anti-depressants (SSRI) are proven to be about 5% more effective than placebo. Basically, barely statistically significant. They are a fraud. Their effect is entirely psychological. Some people like stimulating properties (hey! more epinenphrine!!) or maybe sleep-inducing...
  4. MishMash

    FDA Drug Development Workshop: Part One

    There is going to be a parts 2 and 3? I can hardly wait. To be told by an FDA doctor to take anti-depressants, Lyrica, Cymbalta, anti-convulsives, anti-seizures meds. More horse dung. Stuff they were conned, forced into approving by greedy companies, supposedly for "pain." I really hope you...
  5. MishMash

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    Ally, Another interesting feature of EDS. I wonder if EDS patients have a higher rate of glaucoma? That's too much pressure in eyeball. No one knows why the fluid ducts in the eyeball stop working. Could it be they collapse on themselves? Enquiring minds would love to know. Having EDS...
  6. MishMash

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    One of the popular treatments nowadays for fibro is Ketamine infusions. Ketamine is a anesthesia which was found to have brain rebooting properties. This was first discovered in severe depression patients, who felt instant relief from symptoms. It was later tried out on certain pain patients...
  7. MishMash

    Fecal Transplants

    PNR, I'm not trying to desensitize you to the awfulness of human waste, or anything. But you know in Urdu and Hindi, there is no euphemism for the word referring to human excretory function. This is a western concept. In India, Pakistan, they just use the verb "to s**t" (pakna). So when...
  8. MishMash

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    If anybody can step forward with a a more widely shared anatomical abnormality than "connective tissue disorder," for patients with some kind of "chronically fatiguing illness," please step forward and be heard. Obviously, there are post-polio syndrome, true Lyme disease, and other sources than...
  9. MishMash

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    Was living in Augusta. Which is on 20, about an hour and a half from Atlanta. It is not as nice or exciting as Atlanta. In fact, the young kids call the town "Disgusta." Most leave after high school.
  10. MishMash

    Fecal Transplants

    BTW, the worst allergies I ever experience in my life were when I visited the Hague, in the Netherlands. I was utterly crippled in my hotel room. It was so sickening. But the Dutch love the trees. I mean, what are they going to carve all of those shoes and canal boats out of..
  11. MishMash

    Fecal Transplants

    Here in MD we had levels of tree pollen two Thursdays ago that were historic (at least according to the Washington Post) "High" pollen is considered over 1000. Here it reached over 2800! Do you know what pollen is? It is tree sperm. Basically, male and females are mating, and we are caught in...
  12. MishMash

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    Sharon, Thanks for your excellent input. I happen to agree that most ME/CFS is rooted in some form of connective tissue disorder (I hesitate to use the term EDS, because it has so many variations!) Your posts present a strong case. It is just so damned depressing, because there is no...
  13. MishMash

    McCleary's role at CAA changes

    CAA = a camp surrounded by barbed wire, with a keep-out sign planted in front. (But i'm sure Kim will be highly missed)
  14. MishMash

    American Gut Project - Anthrophology of Microbes

    NPR radio report last week that the rate of serious allergies in children, has DOUBLED in the past ten years. Serious means, potentially life-threatening, life-altering. Not just the sniffles or a bit of diahhrea. I have heard, anecdotaly, that almost all autoimmune disesase is on the rise...
  15. MishMash

    Using Diuretics For Intracranial Hypertension

    RA, Do you have an personal theories as to why your body would want to increase its brain pressure, then decrease it later on? I ask because you seem extremely well-educated about this illness. I absolutely believe you, but it does sound so confusing. On the one hand, we need extra fluids and...
  16. MishMash

    Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

    Well said, Marco. So many theories; only a few have merit. Many are called, few are chosen. Too much glutamate has more proof than any other ideas floating around. Treatment with Ketamine has been shown to wipe out Major Depressive Disorder. And reduce many intractable pain disorders...
  17. MishMash

    Leaky Gut, IBS, etc & GMOs

    PBS.org reported that in the past 10 years the rate of childhood allergies has doubled. The researcher blames epigenetics; the ability of the bodies to genes to change after birth. It may triggered by the environmental toxins or the foods we are now eating. http://video.pbs.org/video/2014838470
  18. MishMash

    Using Diuretics For Intracranial Hypertension

    RA, Is IH your only problem? Do you have other CFS symptoms (fatigue, exercise malaise, flu-like sickness, etc). Do you have reactivated viruses? If it is only IH you are suffering from you might have found your cure. Also, how do you take the turmeric? Straight from the spice bottle? In...
  19. MishMash

    Head injury and hypopituitarism

    Head injuries can cause collapse or damage to the pituitary gland. Which can be seen in a scan (sometimes). This usually correlates, but not always, to symptoms of low pituitary function. But the number of people who have collapsed pituitary gland, and hence low pituitary function, due to...
  20. MishMash

    Here is a real winner of a cardiologist...

    Most people who get SSD are paid on the basis of their income prior to becoming ill. So a young person, or a poor house wife is going to have to get by on $8000 or $10,000 a year. That's a beggar's life. I wonder if the good doctor knows the numbers. Probably a Romney supporter. Watches Fox...
  21. MishMash

    Oxidative Stress May Be Target of New MS Drug

    Basically, Biogen took a common psoriasis drug in Germany, Fumaderm, and "did something to it" so now they can sell it for fantastically high amounts. This is completely absurd. How they were able to get a patent for this is beyond me. People wonder why Medicare is bankrupting us, and no...
  22. MishMash

    Anticipation of a Seasonal Relapse

    Spitfire, One of the reasons I think that CFS/FM is a disease that originates very high up in the brain center is because not only do I react to mold and dust coming out the heat registers during the winters; but I'm pretty sure the shortening of the days causes my already jacked up body cycles...
  23. MishMash

    Fecal Transplants

    Dr. Klimas, for all the negative things I've said about her practice and theories, IS AN ABSOLUTE NINJA when it comes to lab testing. In fact, she is board certified in "laboratory testing." She is a absolutely obssessive that her lab handles the specimens properly, and the specimens are tested...
  24. MishMash

    ME or CFS, what do you call it?

    Ally, Thanks for keeping this critical topic alive with your posts. There is literally a hair's breadth difference between the symptoms of EDS and CFS. SO MANY CFSers have some form of connective tissue weakness, it is astounding. I found a post on the EDS support website, and I am copying...
  25. MishMash

    Fecal Transplants

    God no! Don't put a tube down your throat for that purpose. Or for any reason. I can't imagine the results of an accident. Talk about a new low in life. I think the do-it-your-selfers are referring to the up-the-butt method. But as you said, getting the donor, without outting yourself as...
  26. MishMash

    "Chronic Fatigue and Personality: A Twin Study of Causal Pathways and Shared Liabilities" (incl CFS)

    You totally contradicted yourself by posting the wiki article. You categorically state above that narcissists totally lack empathy, which is, of course, total nonsense. Almost all narcissists have some empathy, some more, some less. Very few have NO empathy. Read the article, then reassess what...
  27. MishMash

    "Chronic Fatigue and Personality: A Twin Study of Causal Pathways and Shared Liabilities" (incl CFS)

    I'm not just talking about meeting people at conferences. I'm talking about the people I used to see every week, for years at a time, who had CFS, at support group meetings. If you don't like categorizations of human personalities, well, that's your irrational conclusion. The psychiatric field...
  28. MishMash

    Fecal Transplants

    The Spitfire Unfortunately, the nasopharyngeal (tube down your nose, into your small intestine) technique is more effective than the up-the-butt technique (at least according to most studies). Apparently, most of the pathogenic bacteria are centered in the small intestine. So changing the flora...
  29. MishMash

    Fecal Transplants

    Spitfire, There is an office in Oregon that sells s**t for this purpose. According to their website, it costs a mere $7000, but that includes "careful preparation" (probably using a blender the doc bought at Walmart), PLUS a "retreat" where after getting the "transplatation", you go off to...
  30. MishMash

    Imaging study may show brain changes in Gulf War illness

    I wish Klimas would offer some logical reason why the "cause and physiology are different." They were soldiers (human beings) put through a hugely stressful process of being mobilized and put into a war situation in a hostile land. A fraction of them reacted the same way many of us would have...