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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. kaffiend

    Cochrane Review protocol: Exercise therapy for chronic fatigue syndrome (individual patient data)

    Inexpensive GPS activity monitors are widely available for dogs. Unfortunately they'll keep rooting through the existing pile of dung (completed GET/CBT studies) for the time being, but I can't see the lack of objective data being acceptable much longer.
  2. kaffiend

    Leaky gut article mentions chronic fatigue syndrome

    http://www.thedailybeast.com/articles/2014/03/27/new-research-shows-poorly-understood-leaky-gut-syndrome-is-real-may-be-the-cause-of-several-diseases.html
  3. kaffiend

    A new primary immunodeficiency affecting Mg2+ regulation of immunity against Epstein-Barr virus

    I haven't seen this paper discussed anywhere on the forum but it looks highly relevant and is cited by the paper on this thread. I'm surprised I missed it. They used magnesium threonate. http://www.sciencemag.org/content/341/6142/186.full Mg2+ Regulates Cytotoxic Functions of NK and CD8 T...
  4. kaffiend

    Disease Mechanisms and Clonidine Treatment in Adolescent Chronic Fatigue Syndrome

    I have taken Tenex (guanfacine) for several years. It's a pre-synaptic alpha2A agonist similar to clonidine but it's more centrally acting. It has worked quite well for the "wired" part of the the wired/tired feeling. There is also a lot of research showing how guanfacine can improve working...
  5. kaffiend

    'Recovery' from chronic fatigue syndrome after treatments given in the PACE trial

    So they used the mean and SD of THIS distribution?! WTF? That looks like an exponential function. They should have log transformed the scores or used a non-parametric measure.
  6. kaffiend

    'Recovery' from chronic fatigue syndrome after treatments given in the PACE trial

    The SF-36 scores don't seem like something they would be normally distributed. Has anyone ever plotted the probability density function or done a test for normality? If it's not, parametric measures to define recovery such as standard deviation would be inappropriate without some transformation...
  7. kaffiend

    FINE trial nurse training materials

    I glanced through the slides and was really struck by the certainty, without reference to any study, with which they make statements about what patient responses will be. It's creepy - they're indoctrinating, rather than training, a fleet of workers who are not encouraged to think critically...
  8. kaffiend

    Childhood stressors in the development of fatigue syndromes: a review of past 20 years of research

    I was neither abused nor neglected as a child yet have CFS. Therefore childhood abuse is neither a necessary nor sufficient condition for the development of CFS. As the biological evidence builds, the serious minded researchers will see these meta-analyses for what they are: Junk science.
  9. kaffiend

    NAD+ controls circadian clock (in mice)

    There was an interesting report in Science today. They showed that when the circadian clock was experimentally disrupted, NAD+ supplements could restore function to the mitochondrion. Press release NAD+ supplements used to make me feel 100% normal for a day and then result in a severe crash...
  10. kaffiend

    Mood Is Influenced by Immune Cells

    Just a mouse study of "stress" effects but interesting nonetheless. http://www.sciencedaily.com/releases/2013/08/130821151602.htm
  11. kaffiend

    Researchers Find Biological Evidence of Gulf War Illnesses

    http://www.nytimes.com/2013/06/15/us/researchers-find-biological-evidence-of-gulf-war-illnesses.html?hp
  12. kaffiend

    Cognitive deficits in cfs and their relationship to psychological status, symptomatology, function

    I used to test my reaction times on various measures (computer based with millisecond precision) and they were extremely slowed or I simply couldn't come up with a response during crash periods. I still have a worsening of "effortful recall" on PEM days. By effortful recall, I mean anything that...
  13. kaffiend

    Blogpost by James Coyne PhD (renegade research psychologist) complaining re: peer reviewer's review

    Comic relief. Turn off sound if you speak German. Scientific Peer Review, ca. 1945
  14. kaffiend

    Probiotic increases natural killer cell activity in smokers

    British Journal of Nutrition (2012) Daily intake of Lactobacillus casei Shirota increases natural killer cell activity in smokers Abstract Dietary probiotics supplementation exerts beneficial health effects. Since cigarette smoking reduces natural killer (NK) activity, we evaluated the...
  15. kaffiend

    Double-Blind Study: Probiotics and Emotions in CFS patients

    L. Reuteri has been great for me. I take that and Garden of Life Primal Defense. I try to stop taking them once in a while because they're pricey, and within a few days, food sensitivities, brain fog, low mood and skin problems show up.
  16. kaffiend

    new clues to epstein-barr virus

    http://www.sciencedaily.com/releases/2013/02/130221152738.htm
  17. kaffiend

    Is this post exercise malaise?

    I used to experience crashes during physical activity (e.g., grocery shopping or walking around). Magnesium malate and adrenal cortex extract or low-dose hydrocortisone was very helpful. I still separately experience PEM starting at 24hrs after activity and continuing for 2-3 days. I mostly...
  18. kaffiend

    San Fran Chronicle: CF patients frustrated with FDA [Ampligen]

    Barbc, I have no interest in Ampligen as I don't think it would be an effective drug for me, but the statistics in that PLoS One paper are solid. That guy from thestreet.com has a degree in political science and appears to have an ax to grind with hemispherx biopharma. He clearly does not know...
  19. kaffiend

    'Recovery' from chronic fatigue syndrome after treatments given in the PACE trial

    It is baloney, evidenced by the very study they cite, since van der Werf et al (it appears the study is from 2000, not 2001) found group differences (CFS/controls) in General physical activity, Peak amplitude, Peak duration, Duration rest after peak, and % activity reduction after peak. In any...
  20. kaffiend

    'Recovery' from chronic fatigue syndrome after treatments given in the PACE trial

    In the discussion section of White et al. 2013, there is a throw-away line about objective measures being left out. --------------- "Objective measures of physical activity have been found previously to correlate poorly with self-reported outcomes (Wiborg et al. 2010), which may be related to...
  21. kaffiend

    'Recovery' from chronic fatigue syndrome after treatments given in the PACE trial

    Thanks for the info. I'm writing a letter that focuses on self-report bias, lack of objective outcome measures, and inappropriate sociodemographic matching when defining 'normal' on the PF subscale scores. Another methodological concern relates to patient self-selection. Inclusion criteria...
  22. kaffiend

    'Recovery' from chronic fatigue syndrome after treatments given in the PACE trial

    Has anyone identified a clear case in which the change to the Chalder Fatigue Questionnaire (CFQ) from binary scoring to Likert scale had an effect on meeting case definition criteria? Is it possible to score worse at 52 weeks and be classed as recovered? The study has a heavy reliance on this tool.
  23. kaffiend

    'Recovery' from chronic fatigue syndrome after treatments given in the PACE trial

    Pasted below is nice article (with references) on the validity of fatigue scales used in CFS. The article recommends using the Fatigue Severity Scale - at a glance it would appear to be very sensitive to CFS type fatigue. http://www.cfids.org/archives/2002rr/2002-rr4-article02.asp Is there...
  24. kaffiend

    'Recovery' from chronic fatigue syndrome after treatments given in the PACE trial

    It's known as social desirability bias and there are countless studies demonstrating it. The website below does a good job of detailing the problems with self-reports. http://www.sciencebrainwaves.com/uncategorized/the-dangers-of-self-report/ Even an undergraduate psychology project would...
  25. kaffiend

    'Recovery' from chronic fatigue syndrome after treatments given in the PACE trial

    It seems easy to make a few legitimate* criticisms of the paper. A reviewer should have asked for (at least) the following: 1) The Post-hoc definition of recovery is not adequately justified. This new definition should be validated in a separate study before its use here. 2) The paper should...
  26. kaffiend

    'Recovery' from chronic fatigue syndrome after treatments given in the PACE trial

    Have the means and standard deviations of the outcome measures (the selected ones) for each trial arm been reported anywhere? I don't fully grasp the use of the odds ratios analysis. A cynical reader would note that such a statistic allows for playing with the threshold for recovery. I'm...
  27. kaffiend

    GABA & autoimmune inflammation

    I had never tried GABA supplements because they don't appear to cross the blood brain barrier (GABA & glutamate are synthesized from the amino acid glutamine). However, there are some studies showing anti-inflammatory effects in the periphery through immune-modulation. One fairly recent paper...
  28. kaffiend

    No serological evidence for a role of HHV-6 infection in chronic fatigue syndrome ?!

    There was a case study published last year reporting HHV-6 infection as the cause of fatal myocarditis (found on tissue biopsy). The paper states that only low levels of IgG were found both pre- and postmortem in serum. So, it's possible to have a reactivated infection without serological evidence.
  29. kaffiend

    My study published in PNAS

    Unfortunately it's not ME/CFS research, but I just had a study published in PNAS (although the methods could be applied to any neurological diseases with cognitive problems) Dynamic network structure of interhemispheric coordination http://www.pnas.org/content/early/2012/10/23/1216402109 I'm...