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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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Search results

  1. Levi

    Epstein–Barr virus infection induce chronic fatigue syndrome

    Too bad nobody is researching the non-ubiquitous EBV Type 2 virus in relation to ME/CFS. http://jvi.asm.org/content/72/5/4352.abstract
  2. Levi

    Extreme intense itching

    ME patients seem to be a generally itchy lot: http://forums.phoenixrising.me/index.php?threads/have-i-got-non-hodgkins-lymphoma.19159/ Good luck!
  3. Levi

    Have I got Non-Hodgkin's lymphoma?

    Hi Rustyj, Sorry to hear of this problem you are experiencing. If the symptoms are worse at night, that is a tell tale sign of scabies infestation: http://www.medicinenet.com/scabies_pictures_slideshow/article.htm These mites are hard to diagnose and get rid of. They are often missed and...
  4. Levi

    Kogelnik, Friedman and Silverman on the Radio

    Quote of the night by Dr. Kogelnik (maybe exact/possibly paraphrased): "Without a clear diagnostic marker for ME/CFS, we Dr.'s will be left scrambling . . ."
  5. Levi

    Dr. William Reeves dies

    But Floydquy, William Reeves WAS indeed a remarkable man. How could you hold otherwise when a foremost medical expert in CFS states in an email to an LA Times reporter that XMRV is a ubiquitous pathogen, and could not be causal for the illness? I am still in awe of that sort of Chutzpah . . ...
  6. Levi

    Dr. William Reeves dies

    Right currer, All you say is true. It is now very unlikely that any government entity will step up to the plate and do what is right for the patient community. We have had our 15 minutes in the media spotlight with XMRV research and that did not turn out so well for us - it sunk like the...
  7. Levi

    Dr. William Reeves dies

    Hmmm, I have been around those 30+ years and have NEVER seen the collective "Nicey nicey" approach vis-a-vis CEBV, ME, CFS, ME/CFS or whatever you care to call it. Maybe some "leadership" factions have done it briefly, but it has been never fully supported. What I have seen is monumental...
  8. Levi

    Dr. William Reeves dies

    Right Yogi, As we speak, there are numerous and plentiful scientific researchers and grad students lining up and chomping at the bit to do some real scientific research/publishing on ME/CFS . . . So they can make a name for themselves.
  9. Levi

    Dr. William Reeves dies

    All good points, but even as a hypothetical matter of style there is no point in shooting ducks in a barrel, so to speak. Even with a ubiquitously thick "brain fog" on, it would be possible to be subtle enough to make your point and still remain respectful to the man's friends and family.
  10. Levi

    Dr. William Reeves dies

    Of course, condolences to friends and family for their loss. Personally, I believe it is ubiquitous bad form to speak ill of the recently demised. Looks like his employer the CDC will need to invest some resources in order to update his bio: http://www.cdc.gov/osels/leadership/bios/reeves.html
  11. Levi

    Crazy insane itching! Somebody make it go away!

    Kinda a gross topic, but scabies can be tricky to sort out. At any given time, most folks affected have only a half dozen mites or so on the body. However, as they feed they inject a systemic toxin that causes a severe global itching reaction in the victim. The hallmark symptom is worsening of...
  12. Levi

    CBT/GET vs massage therapy

    Hey George, saw Facebook post of yours recently, nice stuff. When you dial up any medical website about ME or CFS, you get this "the only known effective treatment is CBT/GET". Actual rates of improvement are dismal, if you factor in the way the statistics are juggled by researchers. I...
  13. Levi

    CBT/GET vs massage therapy

    A simple poll to get a feel for ME/CFS patients opinions about these two treatments. I see lots of published work by the CBT/GET crowd. But not much to go on for what may be a very useful treatment given the role that recent research is attributing to inflammation. There are some new scientific...
  14. Levi

    Statins for CFS?

    Red yeast rice combined with CoQ-10 makes more sense for someone doing a trial to investigate if statins help. First, do no harm . . .
  15. Levi

    Jason and Evans: To PEM or not to PEM? That is the question for case definition

    I guess i must have missed it. Where is the discussion of the objective biomarker for PEM/PENE that will hold up under double blind research conditions?
  16. Levi

    A modest proposal

    With regard to the FITNET trial results, I have a modest proposal. Its serious, but will sound weird. I am putting up a poll for it. I will make it real short, and we can expand on it if there is interest. Here are the steps: 1) Poll the top 10 ME/CFS MD doctors in the world based on a...
  17. Levi

    Why are not more ME and CFS patients involved in advocacy?

    It would be nice if the world ME/CFS community could even agree about a place to start. A simple plan. IMHO, identification of patient subsets and biomarkers for those subsets should be the starting place. Not improving the definition(s). Not changing the name(s). Those efforts have failed...
  18. Levi

    Is Viral DNA in the blood the only way to diagnose CFS caused by EBV, HHVG, or HCMV?

    http://www.cdc.gov/ncidod/diseases/ebv.htm
  19. Levi

    Why are not more ME and CFS patients involved in advocacy?

    Good question Alex. I have thought about this over the decades. It is my belief that a major cause of ineffective advocacy is that for whatever reason, ME/CFS patients do not get along very well with each other and can never coordinate efforts effectively. Another factor is that there are...
  20. Levi

    Biomarkers

    Many biomarkers that are interesting and at least initially supported by published research are experimental, esoteric, not generally available to the public, and expensive to test for as well. Intelligent weighting of the reliability of a palette of biomarkers will include a measure of...
  21. Levi

    Biomarkers

    Initially, biomarkers should be used to define ME/CFS subsets, NOT to identify of diagnose individual patients. Then additional research should be done to study these subsets and replicate and validate the data on a larger scale. Finally, the biomarkers should be cross-referenced and grouped to...
  22. Levi

    Dr Wakefield sues the BMJ in Texas.

    Sorry Sallysblooms, it just seems to me like the demographics favor Texas for jury selection over the UK for for the Wakefield libel suit. Which is the thread topic. I was not slamming individual Texans, since like you correctly say, stereotypes are problematic. Not trying to drift into...
  23. Levi

    Dr Wakefield sues the BMJ in Texas.

    http://thinkprogress.org/politics/2010/02/19/82946/texas-evolution/?mobile=nc Note: Some of my best friends do not believe in human evolution and believe that man and dinosaurs co-existed. I do not hold it against them in any way. Seriously. We just agree to disagree.
  24. Levi

    Do I have CFS, ME, ICL, or AIDS?

    I respectfully disagree. HIV is accepted by the mainstream scientific community and medical orthodoxy as the cause of AIDS. I believe they are correct; the evidence is overwhelming. You are welcome to your opinion about that subject, but you are NOT welcome to confound ME or CFS with AIDS here...
  25. Levi

    Do I have CFS, ME, ICL, or AIDS?

    cfsboston is stated here to have the very rare syndrome Idiopathic CD lymphocytopenia: http://en.wikipedia.org/wiki/Idiopathic_CD4%2B_lymphocytopenia It is also sometimes called Non-HIV AIDS. It is associated with blood cancers, and has an unknown cause. It is a distinct nosological entity...
  26. Levi

    Do I have CFS, ME, ICL, or AIDS?

    Terrific Alex! Feel free to PM me with your list when you are ready to share it. Sounds like we are both interested in this topic. All that is needed is ONE biomarker. Just one. Then we would have subset(s) to study in depth. Then we could address the CBT psych lobby with evidence based data...
  27. Levi

    Do I have CFS, ME, ICL, or AIDS?

    Alex, A lot more than three findings await additional research and validation: http://www.flimecfsforum.com/forum/index.php?f=4&t=587&rb_v=viewtopic#p990
  28. Levi

    Rituximab in the USA - Dr. Kogelnik

    Great, Wait a little bit longer and ME/CFS patients will be able to get a melamine flavored Chinese Rituximab generic at a fraction of the cost . . .
  29. Levi

    Dr Wakefield sues the BMJ in Texas.

    Well, for one thing Wakefield lives in Texas. Although Texas does have a punitive damages limit, it is pretty generous and a probably better deal than for the UK. Plus, Texas citizens are mostly anti-science and do not even believe in evolution. Definite home team advantage there.
  30. Levi

    Epidemic outbreak of ME/CFS in Durban, South Africa?

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2425322/pdf/postmedj00263-0008.pdf