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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. D

    Hillary Johnson to be interviewed on radio on Friday, July 28. Can listen online.

    Chances are there are subsets of this illness that require co-infections or specific strains of pathogen. Contagion may be applicable to some subsets but not others. Read about all the teachers and students that became ill in a cluster at Truckee HS CA near Lake Tahoe in the 1980s. That had all...
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    Hillary Johnson to be interviewed on radio on Friday, July 28. Can listen online.

    This is the definitive history of why the disease is so misunderstood and not researched properly by the American government. The book chronicles all the major players heroes and villains, events, and names names in the cover up to keep the public from realizing that a disease was savaging a...
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    In Memory of Cheryl "beaker"

    Cheryl's obituary and upcoming memorial service information is here. http://www.thedailynewsonline.com/bdn03/cheryl-lynn-gates-20161010
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    In Memory of Cheryl "beaker"

    Cheryl, who used the name "beaker" on this website passed away early October 2016. She was ill for 30 years with this damn disease until she succumbed from pancreatic cancer. She was the one of the sweetest beings around and would help others even though her illness was severe enough she was...
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    Acclaimed County Durham Doctor [Chandy] Banned from prescribing vitamins [B12] mustn't treat CFS now

    I'm not advocating using the ME/CFS Wikipedia article as a treatment guide, but sometimes it can be useful for basic research on studies and reviews. For example, at the main article on ME/CFS, the Treatment section has a sub article named Chronic fatigue syndrome treatment. Under that article...
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    P2P: DHHS Systematic Review: Diagnosis and Treament of ME/CFS 01 May 2014

    This appears to be the principal investigator for the systematic evidence review by the Oregon Health & Science University. PI: Beth Smith, DO Submitted through EPC (The Pacific Northwest Evidence-based Practice Center) AHRQ (Agency for Healthcare Research and Quality Title: Diagnosis and...
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    CDC's BAD NEW STUDY

    @ Legendrew and Gijs. The CDC has ridiculed this disease from the very beginning. I've waited 25 years for them to do serious research for this illness, and I'm still waiting. I don't expect to live another 25 years. The AIDS epidemic has shown that if patients don't take things into their own...
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    CFS prevalence in Hong Kong

    Yes the author is confused and Richard Lord cites a fatigue study not an ME study. http://repository.ied.edu.hk/dspace/handle/2260.2/12464
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    Experimental antibody GNbAC1 to target retrovirus in MS patients

    Very interesting. A quick medline search came up with this (among others) : Human endogenous retrovirus type W envelope expression in blood and brain cells provides new insights into multiple sclerosis disease. http://www.ncbi.nlm.nih.gov/pubmed/22457345 The human endogenous retrovirus link...
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    Ampligen On the Clock: Hemispherx's 'Complete Response' Means Ball is Now in FDA's Court Now

    Reply to grosolo, Sorry grosolo, but your information is missing a vital component. Ampligen is not simply Poly I:C as described in the links you presented. Ampligen is a specifically modified form of Poly I:C that retains TLR3 activity but is designed to have a much shorter half-life in the...
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    Influence of Symptom Expectancies on Stair-Climbing Performance in CFS: Effect of Study Context

    Free link to this article. Influence of Symptom Expectancies on Stair-Climbing Performance in CFS: Effect of Study Context http://www.springerlink.com/content/d1732014xm733xx3/fulltext.pdf
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    Kinesiophobia, catastrophizing and anticipated symptoms before stair climbing

    Sorry if this has been previoulsy posted in this thread but I just found a link where I could download the paper for free. http://www.springerlink.com/content/d1732014xm733xx3/fulltext.pdf Oops sorry wrong thread this link is for, "Influence of Symptom Expectancies on Stair-Climbing...
  13. D

    San Francisco Bay Area Ampligen study (AMP 511) approved

    For 18 months I get the equation: 18 mo * $4400/8 wk * 4.34812 wk/1 mo = $43,046.39. Still a staggering amount of money but I wanted to get the figure correct.
  14. D

    San Francisco Bay Area Ampligen study (AMP 511) approved

    The San Francisco Bay Area area practice of physician (Dr. Raj Patel) has been IRB approved and has started baseline testing patients for the FDA open label Ampligen treatment study protocol (AMP 511).. Dr. Patel stated Ampligen can be started within a few weeks after a patient's baseline test...
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    CDC Patient Outreach Call starts in 30 min

    Just got connected15 listening in at this time.
  16. D

    Ampligen On the Clock: Hemispherx's 'Complete Response' Means Ball is Now in FDA's Court Now

    Ampligen has been used in the US for over 20 years outside of FDA approved double blind studies under Investigational New Drug (IND) status. "Treatment IND is submitted for experimental drugs showing promise in clinical testing for serious or immediately life-threatening conditions while the...
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    Ampligen On the Clock: Hemispherx's 'Complete Response' Means Ball is Now in FDA's Court Now

    No. Hemispherix does not/never made Immunovir to my knowledge. Immunovir was developed and produced by Newport Pharmaceuticals Limited and their subsidiaries. http://www.rivexpharma.com/products_imunovir.html
  18. D

    Supreme Court Lets Affordable Health Care Act Stand....Implications for ME/CFS

    I'm proud to say I support the healthcare bill. The government probably will not implement it as efficiently as everyone would like, but in my opinion it's a great major step forward to improve health care access in this country. I will not vote for a candidate that is determined to undo it.
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    Evidence of sleep problems and post-exertional fatigue in CFS

    That's the Fukuda 1994 definition. Wessely and Lloyd were only part of the working group. http://www.annals.org/content/121/12/953.abstract Full text: www.ncf-net.org/patents/pdf/Fukuda_Definition.pdf The main authors listed for this paper are: Keiji Fukuda, MD, MPH; Stephen E. Straus...
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    Very sad news from Denmark:

    Danish Board of Health may commit seriously ill ME-patient to a psychiatric hospital From another list I belong to, please don't e-mail me for more details as this is all I know about it. Very sad news from Denmark: Danish Board of Health threatens to commit seriously ill ME-patient...
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    Ampligen Treatment Study (AMP 511) starting in San Francisco Bay Area

    Update: 03-20-2012 A San Francisco Bay Area area physician (Dr. Raj Patel) with experience administering Ampligen will very shortly be starting open label Ampligen treatment in Los Altos, CA according to Hemispherx Biopharma. The study paperwork has been approved by the IRB board except for...
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    Ampligen Treatment Study (AMP 511) starting in San Francisco Bay Area

    Update: 02-11-2012 A San Francisco Bay Area area physician with experience administering Ampligen is working with Hemispherx Biopharma to start an open label Ampligen treatment protocol in the lower Peninsula Bay Area. According to Hemispherx Biopharma the paperwork should be ready for approval...
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    MAF 314 - All Natural GcMAF Plus Probiotics

    lobba123, Do you know what probiotic strains are in the kefer you received from http://www.kefir.it? Thanks,
  24. D

    Ampligen Treatment Study (AMP 511) starting in San Francisco Bay Area

    This is an open label study going on at other centers so the data will pooled between many patients not just two. This data is used to develop better methods of endpoint measurement and drug knowledge rather than evaluation of effectiveness which is usually based on double blind placebo...
  25. D

    Ampligen Treatment Study (AMP 511) starting in San Francisco Bay Area

    Updated Study Updated Study Two Bay Area ME/CFS patients have qualified to receive Ampligen under the open label treatment protocol, submitted deposits, and the study paperwork will be starting soon.
  26. D

    In Memory of Amberlin Wu.

    That is wonderful Nielk! You really captured many of her attributes perfectly. I am going to pass a link of your post to our SF Bay area group. PS Can you think of an N sentence to go after an i sentence for Amberlin?
  27. D

    This Requires A Very Good Explanation

    This thread basically continues at http://phoenixrising.me/forums/showthread.php?14009-Ruscetti-Acknowledges-Reuse-of-WB-Image .
  28. D

    This Requires A Very Good Explanation

    Honestly, I don't understand all this "them over at that forum vs. us in this forum" mentality. Hurling accusations at each other is futile. What's done is done. We're all in the same boat. IMO we need to support each other and intelligently and respectfully discuss the best way to support...
  29. D

    NY Times story on BWG results & Science partial retraction of XMRV study

    No, I believe he just knows about the illness from others.
  30. D

    Please vote for IiME as cause of the month

    I voted. Invest in ME is now only 5 votes behind. We should be able to get at least 100 votes per day, come on people, Vote.