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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. C

    Eagles Syndrome, how is this possible? Also possible reason for CFS sore throats

    I have had a lump doctors thought was a cyst in the back of my throat for many years. It started getting painful lately. They finally did a CT scan and said I have a rare disorder called Eagles Syndrome. So rare that you have a zero percent chance of having it. To be precise 0.16 percent chance...
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    Astounding Norwegian research breakthrough with Rituximab can solve CFS mystery!!!

    So the question is, do we have to wait a year or two as they say or is there a way to get this treatment, maybe Mexico? I know its got risk, but at this point, I would do anything.
  3. C

    Perhaps its not CFS, your input is greatly appreciated

    Yes I do feel better after laying down for awhile, sometimes much better after like a 10 minute nap, which is hard for me to nap its rare
  4. C

    Perhaps its not CFS, your input is greatly appreciated

    Forgot to answer your question About post malaise, as I was continuing to exercise for about 5 or 6 years and it didn't seem to have any ill effects, that is in the mostly brain fog days. Now I am just pretty much permanently wiped out, but exercise didn't seem harmful for awhile anyway. So I...
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    Perhaps its not CFS, your input is greatly appreciated

    Thanks guys. I guess I didn't consider the fact that it could have been the immune system trigger, then I just bounced back, but the next trigger pull could have been even worse. Yes, perhaps someday there will be true diagnostic tests for this, it is just so frustrating. I'm sure there is...
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    Perhaps its not CFS, your input is greatly appreciated

    Im beginning to wonder if I am on wrong track the last decade. I was perfectly healthy, got a head cold woke up foggy ears ringing. It lasted until cold was gone then I was fine for 2 months, until I got another head cold. Ears ringing, foggy again. Over the course of years it finally turned...
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    ABC News report Norwegian Study

    Yes unfortunately just by going that site I helped pay ABC! The worst thing is I shared that link with a family member before viewing the video. The family member thinks its a disease in our heads and simply goes away, that video will confirm that belief, ugggggggh!
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    How to join and start a Rituximab trial

    Anything is better then this sickness. This is the first thing I have seen that absolutely makes sense to me. The only thing is how many years do we have to wait before its something they will freely give us? I honestly think I will be dead before something actually gets done. By the time...
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    ABC News report Norwegian Study

    It just made the news today http://abcnews.go.com/Health/Wellness/chronic-fatigue-syndrome-study-supports-autoimmune-disease-theory/story?id=14801908 But they attached that stupid video of that athlete that cured herself with vigorous exercise! Haha come on are they kidding? That has...
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    Article: WPI Says No to Retraction Request/ Levy Study Dashes Hopes /NCI Shuts the Door on XMRV

    I wonder though My big thing is this. Its been over 2 years since they found this link to XMRV and nothing else has really happened since. How many more years for any progress if it is the cause? There is no doubt it has something to do with the immune system, but the evidence is still...