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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. K

    Brain fog: The Research

    Just a few notes. There is quite a bit of objective evidence of slowed information processing in at least subgroups. And Beth Unger did say that some patients showed substantial cognitive issues and others did not so apparently there are subgroups. Whether or not cognitive issues are found...
  2. K

    Did CFSAC's 'High Priority List' Illegally Bypass Public Input?

    I believe there was supposed to be a decision made regarding the ICD CM criteria for CFS in January.
  3. K

    Depression Questionnaires in ME/CFS

    The HADS instrument is also fairly reliable. It is designed for medical patients and avoids questions about physical symptoms of disease. What it does not assess however is whether anxiety or depression were pre-morbid or whether they are a normal reaction to the psychosocial overlays common...
  4. K

    Rituximab: Norwegian multicenter study fundraising

    The current exchange rate is 1.00 NOK = 0.19 USD. In general payments through PayPal have lower fees.
  5. K

    Comment by 'Kelly' in 'Simon Wessely and letters condemning ME / CFS patients to continued illness and stigma'

    This will not be a popular response, but what I'm hearing in general is "only my side of the story can be told." Oh wait, that's both sides. What it comes down to is if you want to have freedom of speech you will probably have to grant others the same right whether you agree with them or not...
  6. K

    Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Webinar: Working Together for Change

    Many diseases have been down this road even cancer! If you want to learn more about MS you might want to read this book: http://www.nejm.org/doi/full/10.1056/NEJMbkrev0804949 The review states in part: "..The best aspect of the book is Talley's discussion of multiple sclerosis societies that...
  7. K

    Your $1 is worth $40 in Simmaron’s biomarker funding challenge

    Please do not construe this as saying this should not be funded, but there are already biomarkers - researchers just have to start using them. At the CFSAC meeting the comment was made by I believe Nancy that biomarkers must be accepted by the entire medical community. This is a catch-22. Most...
  8. K

    Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Webinar: Working Together for Change

    This was addressed in the meeting. It has to be a research definition. The CCC and the ICC are not research definitions - they are clinical definitions. Research definitions work best when they have the fewest possible elements and still differentiate between people who don't have a disease and...
  9. K

    Comment by 'Kelly' in 'Fresh wind blowing through psychological research'

    “Powerful people tend to hang on to the opinions that made them powerful even if there is no longer sufficient evidence to support their views..” Dr. Paul Ewald - evolutionary biologist I'm not defending anyone or any theory, but if you look at it in terms of human beings being human of course...
  10. K

    Prevalence of DSM-IV Personality Disorders in Patients with Chronic Fatigue Syndrome: A Controlled S

    Actually they do do these kinds of studies in other biological diseases - the difference is that they don't use it as a reason to not do biomedical studies. As for why they did this study on personality disorders in CFS, other studies have found that personality disorders are often found more...
  11. K

    what are the symptoms of xmrv?

    XMRV is a virus not a disease - there are no "symptoms" per se. Nor are there any accurate, inexpensive tests at this time. There is no reason to test until XMRV is proven to be a human pathogen as Esther 12 states and that hasn't happened yet and realistically may never happen although it...
  12. K

    "Chronic fatigue syndrome in the media: a content analysis of newspaper articles"

    I believe Dr. Jason's group is also working on a similar paper. Not sure when it will be published.
  13. K

    Article: The Biggest Research Funder in the World on ME/CFS: The NIH on ME/CFS in 2012 Pt. I

    "Interestingly enough, the next NIH priority is on why moderate alcohol consumption causes such fatigue and debilitation in ME/CFS an intriguing but wholly unstudied subject which suggests this group is well versed in ME/CFS symptoms." What this suggests is that Dr. Susan Maier has a...
  14. K

    Letter to NCHS

    Chiropractor Just for clarification Dr. McLaughlin is a chiropractor.
  15. K

    Letter from Annette Whittemore, "Our Responsibility", IP removed from WPI, 11/11/11

    I really think this line of commentary needs to stop right here and immediately. It is highly unlikely that any of the parties named above had anything to do with this debacle nor is there any evidence this is the case. Trying thinking it through rationally. Just because you disagree with...
  16. K

    Article: Treatment Breakthrough (and Paradigm Shift) For CFS? Rituximab Trial Promises Hope

    Drug companies unlikely to pursue trials for drugs with a "low" success rate An issue that is rarely addressed is whether drug companies are interested in exploring treatments that appear to only work on a small percentage of patients. I think Ampligen works for about 15 % of patients and...
  17. K

    Article: Treatment Breakthrough (and Paradigm Shift) For CFS? Rituximab Trial Promises Hope

    I wonder what Dr. Chia thinks. He uses the herb oxymatrine to treat subgroups of patients, but warns that if the patient has a family history of autoimmune disease that it might not be a good option. The herb has been known to trigger autoimmune reactions. This highlights the possibility that...
  18. K

    List of historical ME research papers and articles (wiki) - please help

    http://pmj.bmj.com/search?author1=A.+M.+Ramsay&sortspec=date&submit=Submit
  19. K

    Maldarelli XMRV Study Underway

    Paranoia, half truths and misinformation ....Paranoia is a thought process heavily influenced by anxiety or fear, often to the point of irrationality and delusion. Paranoid thinking typically includes persecutory beliefs concerning a perceived threat towards oneself. There is so much...
  20. K

    Article: The CFIDS Association: the Last Ten Years - An Overview

    Some mistakes may never be made right Just an observation: Politicians also know this. Unfortunately, some mistakes are ones that dog you until the end of time - in the case of the CAA Peter White is one such example. Sometimes, for many people, it comes down to - apology not accepted...
  21. K

    Atlanta Unfiltered - CDC insider to run research on chronic fatigue syndrome

    CDC rep supports ban on donated blood If you read the article at the start of the thread the CDC rep on the blood supply safety committee specifically states that he believes CFS patients should not donate blood. Obviously he isn't buy the psychiatric explanations. No one gets a psychiatric...
  22. K

    Atlanta Unfiltered - CDC insider to run research on chronic fatigue syndrome

    Impractical Jackson - that proposal was actually put forth by Rebecca Artman a few CFSAC meetings back and it was hastily explained that would mean no funding in other key areas. Check the transcripts for the full explanation.
  23. K

    Atlanta Unfiltered - CDC insider to run research on chronic fatigue syndrome

    A new article on the CDC has been posted on the investigative journalism site Atlanta Unfiltered. http://www.atlantaunfiltered.com/2010/12/21/cdc-insider-to-run-research-on-chronic-fatigue-syndrome/
  24. K

    State of the Knowledge Workshop for ME/CFS at the NIH, April 7-8th, 2011

    They do plan to webcast this workshop, speakers and agenda to come in January.
  25. K

    State of the Knowledge Workshop for ME/CFS at the NIH, April 7-8th, 2011

    So does this mean they are trying to work quickly and are bypassing the usual standards in order to do so? How will this affect the information given? Any word on who the presenters will be or what will be presented. And yes, the logos on the bottom represent the various agencies under the...
  26. K

    Article: Letter to Fred Friedberg and All IACFS/ME Officers

    Most of what I wrote was explanatory in nature - facts are just facts. But, that probably didn't make them seem any less negative. Although I've not attended all that many CFSAC meetings, due to the nature of my work I've covered what seems like a billion govt. meetings at all levels and they...
  27. K

    Article: Letter to Fred Friedberg and All IACFS/ME Officers

    Demanding? I don't mean to shoot you down, you have the kernel of some good ideas, but I would recommend starting by listening to committee members who have more experience in the government arena and then attempting to structure within the limitations rather than demanding based on...
  28. K

    Article: Letter to Fred Friedberg and All IACFS/ME Officers

    Yes, he could run a tighter ship, but give the man some slack, he's a researcher not a parlimenterian. I think part of the problem is that patients expect these researchers to walk on water when they aren't be all things to all people. Obviously patients are frustrated and legitimately so, but...
  29. K

    Article: Letter to Fred Friedberg and All IACFS/ME Officers

    Straw man No offense intended, but determining the effectiveness of Dr. Snell's leadership based on adherence to Robert's Rules is a straw man argument. There is no evidence quoted here guaranteeing that if Dr. Snell or any other chairman adheres to Robert's Rules that it will magically...