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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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    Royal College's Report on CFS (1996)

    Agree with Valentijn here. While in theory Glycon's hypothesis sounds plausible it baffles me that PACE's et al. results are that bad considering their loose inclucion criteria. Surely those kind of 'patients' should respond to these interventions yet even then the 'results' are piss poor.
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    CFI Spinal Fluid study from Lipkin and Hornig is out.

    It's the same study. These results really make me eager to see the results of the Anakinra trial the Nijmegen group is doing.
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    Antibodies to ß adrenergic and muscarinic cholinergic receptors in patients with CFS

    Probably not the best topic to post this, but because of this study the last 3 weeks I've been trying clenbuterol (a beta 2 agonist). Dosed up from 20 mcg to 120 mcg and I didn't notice a difference in ME/CFS symptoms. Kinda makes sense since there are no reports of propanolol (beta 2...
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    Cytokine inhibition - a randomized placebo-controlled, double-blind trial

    I'm not as negative as most of you. Sure, the inclusion criteria (CDC) are a bit to broad and I know Radboud doesn't really have a good reputation re: ME/CFS, but I believe they genuinely want to give this drug a fair go and are open to change their opinion if it demonstrates benefit. You know...
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    NIH awards total of $1.3m to Lipkin, Klimas, Hanson

    Interesting observation. I read Davis' letter yesterday and I believe he stated he didn't apply to NIAID because they don't fund ME/CFS research. Yet at the same they did fund Lipkin's research. Would it be as easy as just reapply the grant proposal to NIAID? Wishful thinking, I know. Edit...
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    Jarred Younger on Neuroinflammation in ME/CFS and Fibromyalgia

    It's much less actually. When translating an animal dose to a human equivalent dose (HED), you need to take into account the animal's body surface area. The entire HED formula is explained here:http://www.fda.gov/downloads/Drugs/Guidances/UCM078932.pdT The study used gerbils and I'm not sure of...
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    Jarred Younger on Neuroinflammation in ME/CFS and Fibromyalgia

    Never really been a fan of phytochemicals and curcumin and resveratrol in particular have terrible bioavailability. Interestingly I was prescribed minocycline last year and I was pretty excited to hear my GP was giving me that particular antibiotic (knew about the it's purposed microglia...
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    KPAX Synergy (methyphenidate/Ritalin) trial results are out

    Like others I expected this study to fail. Stimulants have already been studied with little success and some herbs and antioxidants aren't going to do anything. Still, the high placebo rate seems kinda odd. Wasn't it Wessely who claimed that the placebo rate in ME/CFS is very low? I really...
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    CFI Spinal Fluid study from Lipkin and Hornig is out.

    I really wonder how the ongoing trial of anakinra (IL-1 receptor antagonist) from the Nijmegen groups fits into this. On the one hand this study shows a depressed level of IL-1, so one could hypothesize that anakinra could make PWME feel worse. On the other hand I believe Lipkin and Horning...
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    Anti-HERV antibodies and interferon-beta therapy

    Huber's search for HERV-K18 expression in ME/CFS was negative, so I'm not sure this would be the best area to study with the limited funds available. http://www.ncbi.nlm.nih.gov/pubmed/23408682
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    New pilot study in the loop from the researchers at Haukeland

    PEM for me isn't really that significant (have a pretty constant and severe baseline no matter what I do), but I can definitely relate to the orthostatic symptoms. In fact the autonomic symptoms (dizziness etc) are one of my major complaints. Don't really have the myalgia aspect either. Still...
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    New pilot study in the loop from the researchers at Haukeland

    Ok, I probably should have read the entire thread before responding, but this is what I expected you were referring to. I always suspected the delayed onset *might* not be that strange. As you might know in resistance training cycles it's very well known that muscle pain can take up to 3 days...
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    New pilot study in the loop from the researchers at Haukeland

    What is it that you're most puzzled about? The often reported delayed onset, the length or only the mechanism of action per se?
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    New Clinical Case Definition for ME/CFS: Fears It Will Be Labeled “Behavioral Health”

    *might* be not so bad afterall: Lucinda Bateman @LBatemanMD · 56 min.56 minuten geleden Tired but happy after briefing Capitol Hill; advance peek at the IOM report for interested parties. #MECFS #theIOM Fingers crossed!
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    Invest in ME/Prof Jonathan Edwards statement on UK Rituximab trial, 30 July

    This is it indeed- quick find! This picture got lost in the translation though: A rough translation for the non-Dutch speakers since it can't translated by digital software: 46 ME/CFS patients...
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    Invest in ME/Prof Jonathan Edwards statement on UK Rituximab trial, 30 July

    I always thought it was the other way around. Whenever the ME/CFS centre wanted to do a study they collaborated with a specific Radboud department. So whenever Van der Meer or Bleijenberg wanted to do a neurological study, they set up a study with Radboud's neurological department. I'm actually...
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    Invest in ME/Prof Jonathan Edwards statement on UK Rituximab trial, 30 July

    Prof. Edwards, Apparently the Nijmegen ME/CFS centre is starting a RCT to study Anakinra in 46 female ME/CFS patients. Maybe you're not that familiar with this centre, but they're very notorious for their biopsychosocial model. So seeing this study coming from them is pretty huge and...
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    High vitamin D serum levels correlate with higher prevalence of eczema

    Unfortunately it is just an observational study and thus unable to demonstrate cause-and-effect. I don't know much about eczema, but vitamin D levels might be just a proxy for sun exposure or dietary factors. It also might be that vitamin D levels do have a causative role in eczema. Nobody...
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    Invest in ME/Prof Jonathan Edwards statement on UK Rituximab trial, 30 July

    Prof. Edwards, I've noticed you mentioned interferon several times in your earlier posts. I find it quite interesting since there is some (circumstantial) evidence interferon might be implicated in this disease. As you know, interferon-alpha therapy produces a lot of the same kind of...
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    Invest in ME/Prof Jonathan Edwards statement on UK Rituximab trial, 30 July

    I'm pretty sure the Lipkin comment was made at a lecture at the WPI. It was the same lecture where he mentioned what ME/CFS research he would if someone donated $1 million. He has to be referring to the paper posted above by Bob. That was his only ME/CFS research before the XMRV saga. No sure if...
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    New Medical Director of WPI--Kenny De Meirleir M.D., Ph.D.

    I don't know how you got this idea, but that's absolutely not true. It's no my intention to offend anyone, but I have had very bad experiences with this doctor. He has so many conflicts of interest it really make me gag. He has a financial stake in the company (RedLabs) he orders tests from...
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    Quercetin's Effect on Mitochondial Production & Fatigue

    It's much less actually. When translating an animal dose to a human equivalent dose (HED), you need to take into account the animal's body surface area. The entire HED formula is explained here: http://www.fda.gov/downloads/Drugs/Guidances/UCM078932.pdf Since this study used mice the HED would...
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    The Double Standard

    Let me first say that I agree with your statement about many patients/forum members using double standards. It's not only unscientific, but also unnecessary to ''prove'' ME/CFS is not a psychological illness. Everyone agrees (even the psychiatrists and psychologists) ME/CFS is likely a...
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    [Fascinating] Depression: An Evolutionary Byproduct of Immune System?

    I just noticed it was published and automatically remember you asked for it. It seems my long(er)-term memory is not really effected afterall :D
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    [Fascinating] Depression: An Evolutionary Byproduct of Immune System?

    Interestingly, dr. Miller also published a paper* about cytokine effects on the basal ganglia and dopamine function. In light of the recent CDC findings regarding the involvement of the basal ganglia in ME/CFS, this paper is probably very relevant for us. I'll give it an own topic after I've...
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    [Fascinating] Depression: An Evolutionary Byproduct of Immune System?

    The paper was published last month! http://www.ncbi.nlm.nih.gov/pubmed/22945416 The results are not really mind-blowing but might be hopeful for depressed people with hs-CRP. It certainly points to an immune component in a subset of depressed people, but the sample size is pretty small. More...
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    A Multicenter Blinded Analysis Indicates No Association between CFS/ME and either XMRV or pMLV

    Yes it did. Many people on this and other ME/CFS forums still believed in XMRV/PMLVS/HGRVS as a cause of ME/CFS, even after all the negative studies. Personally, it frustated me because the science was clear a long time ago. Now, I've yet to see one patient that still believes in a connection...
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    Dr O'Keefe - Paper accepted for publication

    It might be something like the Rnase L findings earlier implicated in prostate cancer. Yes, O'Keefe may believe these finding can be explained by MLVs, but until she publishes a paper where MLVs are actually found in PC, her findings are replicated and she's able to demonstrate cause-and-effect...
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    Dr O'Keefe - Paper accepted for publication

    I don't think this paper has anything to do with MLVs honestly. It's quite common that labs are involved in several different research projects. If it was really about MLVs I'd quess such a signifcant finding would be mentioned in the title.
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    Fibromyalgia Trial Shows Promise...For Chronic Fatigue Syndrome? Mast Cells and Ketiotifen in FM an

    Note that quercetin's oral bioavailability is really low ( around 1%), so the in-vitro results of Theoharides research are very hard/impossible to reach with oral quercetine supplementation. This could definitely explain the very few positive logs of quercetin supplementation. Another...