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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. J

    Avindra Nath finds T-cell exhaustion in ME/CFS, which weakens immunity, and is possibly caused by the persistent remnants of a viral infection

    My personal view of this study is that no scientific progress will come from it. It will get quoted (it is $8 million government research project, after all), but none of its findings will lead anywhere. The checkpoint drug trials will be unsuccessful, and if more than one checkpoint drugs...
  2. J

    Simmaron research start new rapamycin trial

    The impact of doing it the way Murth describes is three fold: 1. Retrospective studies are well known to be much lower quality than prospective. So other researchers are going to consider any such study to be much worse than any prospective study. 2. The FDA has various requirements to...
  3. J

    Can someone clarify my docs comments re: Rituximab trials???

    I think your doctor is making a classic mistake in interpreting clinical trials, and which is made by lots of people. (Note that I'm assuming that CFS/ME often naturally fluctuates: some days better than others; some months better than others.). He's assuming all improvement seen in patients...
  4. J

    Do we need a miracle ?

    I don't see AI being helpful in the area of ME/CFS research. AI is all about learning from large data sets, and this leads immediately to two problems: 1. There are no large data sets for ME/CFS. Well, maybe one or two two in process of being created, but they will not be truely large for...
  5. J

    Reply from the NIH

    My standard (not from ME/CFS studies), is that if data collection is finished, and the result have not been published within two years, then the study was unsuccessful. In fact, I've found successful results are published within one year, but I wait two years just to be extra safe. However...
  6. J

    severe ME being diabetic

    My "2 cents worth": 1. There are a lot of medicines for type 2 diabetes which are not Metformin. Look into non-Metformin options. 2. I think that low sugar is the first step to low carb, but you should continue with low carb, not just low sugar. Lower your consumption of grains, beans, etc...
  7. J

    What happened with XMRV?

    You would, if it were good science. But it turns out it was very bad science, in two different ways. First of all, and probably more importantly, the CFS patient blood and the healthy controls used in the original study had completely different origins. They had been collected in different...
  8. J

    Game-Changing "Leaky Gut" Treatment (Larazotide Acetate) will soon be available

    The study tested both doses, and the company canceled it, so I think it is fair to say that both doses failed. If even one looked like it might possibly succeed in the future, they surely would have continued with the trial.
  9. J

    Game-Changing "Leaky Gut" Treatment (Larazotide Acetate) will soon be available

    That clinical trial has failed. It is now marked "Terminated by Sponsor" which you can see here: https://clinicaltrials.gov/ct2/show/NCT03569007 And the company involved issued a press release two months ago saying it had failed (in corporate pharma speak, of course, they never used the word...
  10. J

    Osler's Web and And The Band Played On

    Has anyone read both Osler's Web and And The Band Played On and compared them? I'm in the middle of reading Osler's Web and it seems like comparing the events in the two books would be interesting. They both describe the CDC's response to a disease outbreak, just a few years apart. However...
  11. J

    Ubiome shut down?

    It is worse than that, it has moved on to insurance fraud, but based on scientific fraud underneath. You can read more below. I'm curious how much "research" was based on uBiome testing, and how much will be (or should be) retracted because of this. For me, any research based on uBiome tests...
  12. J

    Severe COVID may be caused by 'autoantibodies'

    Just to remind everyone of the obvious, if you test for 2770 antibodies, and you use a p value of 5% (the standard), you will send up with 139 false positives. If you use a much higher standard (like 1% or even 0.1%) you will still end up with 27 or 3 false positives. This study used all of...
  13. J

    What is Ron Davis' financial relationship with OMF?

    I think a lot of people commenting on this thread are misunderstanding the basics of how OMF works. They think that OMF is a "goal funder" like the American Heart Association, the American Cancer Association, and most other medical charities, but it is not. It is a "co-op funder". So people...
  14. J

    Intravenous Cyclophosphamide in ME/CFS, An Open-Label Phase II Study. (Rekeland, Fluge, Mella, 2020)

    Yes, but they didn't even try. An imperfect control group is still much better than no control group at all. Also the combination of a unblinded treatment and all patient-reported outcomes is particularly bad. Not even PACE was that bad.
  15. J

    Intravenous Cyclophosphamide in ME/CFS, An Open-Label Phase II Study. (Rekeland, Fluge, Mella, 2020)

    I think that safety is a personal decision, and no one except you can decide what is safe and what is not. However, In the US a "serious adverse event" is one that requires immediate treatment. That is, a non-scheduled / no-appointment trip to a doctor, clinic, emergency room, or admission to...
  16. J

    Direct Causes of Fatigue (in CFS)

    Are you limiting it to physical disease? I think the most common direct cause of fatigue amoung teenagers is chronic lack of sleep. I can't tell you how many parents tell me "my kid is constantly tired, for months at a time" and I ask them "when does your kid go to sleep" and they say "I don't...
  17. J

    List of various recent interviews with Judy Mikovits

    Here is a fact checking article on Mikovits's video: https://www.sciencemag.org/news/2020/05/fact-checking-judy-mikovits-controversial-virologist-attacking-anthony-fauci-viral I had not realized how nuts some of the things in her video were. The sea cures COVID19? Masks make you more likely...
  18. J

    The best evidence yet that immune system problems can cause ME/CFS? Simon M blog

    I probably should have put my point #5 in the "fatal problems" part of my post. Those are generic excuses that can be used for any research that comes up with tiny results. Sure, it is possible. Any research that comes up with a result too small to be interesting could use these excuses. The...
  19. J

    The best evidence yet that immune system problems can cause ME/CFS? Simon M blog

    If, as you say, that is the "best evidence yet that immune system problems can cause ME/CFS" then I think that theory is dead. There are (at least) three fatal problems: 1. The evidence doesn't even rise to the 80/20 rule. This is a rule of thumb that the minimum evidence to support causality...
  20. J

    what's the followup to the biomarker study that was just published (Spring 2019)?

    I think the next steps in the research are three fold: Run trials which are larger and which are blinded (the first study was not blinded). Run trials aimed at comparing ME/CFS with other fatiguing diseases, and more generally determining if the nanoneedle is measuring a symptom of the...
  21. J

    A nanoelectronics-blood-based diagnostic biomarker for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

    Peer Reviewed Paper Direct test of the "Nanoneedle" on salt-treated plasma. Size: 20 total, 10 active P-Value: very low Blinded: No Official link: https://www.pnas.org/content/early/2019/04/24/1901274116 Net promoter score after publication: +1 Abstract There is not currently a...
  22. J

    Timeline of Research into The Davis Nanoelectronic Assay To Diagnose ME/CFS

    In this blog, I'm going to try to document all scientific sources of information about the Davis Nanoelectronic Assay used to Diagnose ME/CFS. By "scientific sources of information", I mean papers, conference proceedings, blog postings, letters to the editor, and anything else which (1)...
  23. J

    Reuters 13th March 2019: Article with Sharp, Wessely, Per Fink and co attack Dr Tuller and ME patients

    From the BPS point of view, I think the new parts of this article are all aimed at neutralizing Tuller, by trying to make three points. It will be successful if these three points become part of the common narrative and a failure if they do not: 1. Tuller is a paid lobbyist (about $80,000 per...
  24. J

    vertigo

    Another cause of vertigo is Benign Paroxysmal Positional Vertigo (BPPV). If your vertigo comes and goes, and especially bad when you are in bed or just getting up, you might want to look into it...
  25. J

    How Much Longer? ME Advances: Projected Timeline for Tx or Cure

    I think it is a big mistake to equate ME/CFS now with AIDS in the 80s, for at least three reasons: 1. AIDS was not at just one place in the 80s! It started in one place, but ended in quite another. 2. None of the places that AIDS was at in the 80s correspond very well to were ME/CFS is now. 3...
  26. J

    NICE guideline for ME/CFS is unethical – Dr Diane O’Leary, Kennedy Institute of Ethics | 23 August 2

    I'm replying to all the quotes together, because they are all making a similar point. My question was, why are there no studies showing that pacing is better than CBT/GET and no studies showing that Rituximab is better than CBT/GET? And some of the answers were: These all boil down to the...
  27. J

    NICE guideline for ME/CFS is unethical – Dr Diane O’Leary, Kennedy Institute of Ethics | 23 August 2

    I was aware of two studies which "tied" in the sense that CBT (or GET) did no better than the comparison. (And this looks like a third.) However, I'm looking for studies where other treatments did better than CBT or GET. Not ties, but losses for CBT or GET. My experience is that if you do a...
  28. J

    NICE guideline for ME/CFS is unethical – Dr Diane O’Leary, Kennedy Institute of Ethics | 23 August 2

    I still haven't seen even one research study which says that pacing (such as common recommended here "staying within your energy envelope" is better than CBT/GET) Same for Rituximab vs CBT/GET. By my count there are about 18 studies that show CBT/GET is better than other treatments, about 2-3...
  29. J

    NICE guideline for ME/CFS is unethical – Dr Diane O’Leary, Kennedy Institute of Ethics | 23 August 2

    I think that if you can not tell the difference between a letter to the editor, and a research result, then there is not much I can do to help you understand. But just to be clear, I was asking for the result of a experiment or clinical trial which shows that some treatment works better than...