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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. BruceInOz

    Poll: How many steps do you take a day?

    My samsung phone counts my steps and keeps a history going back to when I got it. From that I see I take between 2000 to 3000 steps most days. It used to give me a trophy if I walked more than 6000 in a day which I very rarely did (and usually suffered for it later) but I just noticed it is now...
  2. BruceInOz

    Some concerns about homeopathy

    I assume this was supposed to come out as 1:10 to the power 60 (i.e. 1:1 followed by 60 zeros).
  3. BruceInOz

    The effects of therapies for ME and CFS should be assessed using objective measures

    But remember that in the double blinded comparison of albuterol with placebo for asthma (www.ncbi.nlm.nih.gov/pubmed/21751905) the subjective measure showed 50% improvement for albuterol and 45% for placebo but the objective measure showed 20% improvement for albuterol and 7% for placebo. So...
  4. BruceInOz

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

    But if each of your 10 or 20 studies were for a homeopathic treatment and all were unblinded with subjective endpoints I think I would be perfectly justified in ignoring all of them and concluding there is NO evidence for the treatment. That is the situation here. Lots of bad studies don't...
  5. BruceInOz

    Cytokine signature associated with disease severity in chronic fatigue syndrome patients

    Although this may provide an interesting piece of the puzzle, I can't see that it leads to a diagnostic test as claimed in some of the media reporting on the study. The plots of the different cytokine levels for controls, mild, moderate and severe that Simon included in his post above are...
  6. BruceInOz

    Correspondence with the Mayo Clinic re ME/CFS! (amazing response) - UPDATE

    Worried about yourself or worried about your mayo?:woot:
  7. BruceInOz

    PACE trial commentaries in the Journal of Health Psychology to be made open access

    This is not a safe thing to do with your credit card number. Your number will be flying around the world unencrypted!
  8. BruceInOz

    PACE trial authors continue to ignore their own null effect - JHP by Mark Vink

    Surely, given that approx 30% of data is missing in each group for the 6 minute walk, quoting a great p value and claiming statistical significance is meaningless? The 95% confidence interval they quote suggests they are 95% confident the "true" value (assuming normal distribution) of the 6mwt...
  9. BruceInOz

    What are seminal studies in ME research?

    Has anyone mentioned the two day CPET?
  10. BruceInOz

    Bad news to the MEA from NICE: no review considered necessary

    This point should be made strongly since NICE's diagnostic criteria say PEM but none of the CBT/GET studies take PEM seriously.
  11. BruceInOz

    PACE Trial and PACE Trial Protocol

    Yes, I think the proper interpretation of his quote is that he would call it "cargo cult science", a term that Feynman coined. Interestingly, Wikipedia says the following about cargo cult science: (https://en.wikipedia.org/wiki/Cargo_cult_science) Yes, that does sound like PACE and today we...
  12. BruceInOz

    PACE Trial and PACE Trial Protocol

    Being a theoretical physicist myself, Richard Feynman has always been something of a hero of mine. This quote reminded me of another of relevance to the PACE saga that I once posted here somewhere: But, in looking it up on wikiquote, I found a longer quote that expands somewhat on the ideas...
  13. BruceInOz

    Practical management of chronic fatigue syndrome or myalgic encephalomyelitis in childhood

    I presume you chose a Fourier series so you could represent (with suitable choices of the a_n and b_n in your equation) the sudden crash and slow recovery that is PEM. Not a sine wave at all!
  14. BruceInOz

    GETSET (white) in Lancet 22/06/17

    @Karen Kirke, the interquartile range (IQR) you quoted for the control group (75-570) is actually from the next line in the table for Physical activity (min per week). The correct values for Duration of illness (months) are GES group: median = 46, IQR = 23-114 Control group: median = 42, IQR =...
  15. BruceInOz

    Crawley & O'Dowd - Early Intervention In Fatigue: A Feasibility Study

    The real problem with negative results not being published is that when Cochrane etc produce a review of the literature they only find positive results. Biased review guaranteed. (Or can their protocol catch unpublished studies?)
  16. BruceInOz

    Trial by Error, Continued: More on Graded Exercise from Peter White and The Lancet

    And yet our perceptions are to be believed at the exclusion of all objective measures when it comes to primary outcomes! Surely if they believe our perceptions are unreliable they should be falling over backwards to make sure they only use objective measures.
  17. BruceInOz

    Experiences with sleep apnea treatment amd ME/CFS

    I have been using a CPAP machine (actually a BPAP - the B is for bi since it has higher pressure when breathing in than breathing out) for over a year now and ME for 22 years. I have not noticed any improvement in my ME symptoms. If anything I have been deteriorating a little over the last...
  18. BruceInOz

    Ron Davis, Ashley Haugen, Linda Tannenbaum and Raeka Aiyar at IiME #OMF

    I don't understand this. How can stuff presented at a meeting possibly be confidential? Confidential from whom? Who decided who could hear it and who could not? How is that science?
  19. BruceInOz

    Dr Naviaux's Suramin & Autism Trial - publication and interview

    This certainly bothered me when I read Naviaux's metabolomics paper when it first came out a while ago. Not just that I could find no references to the Cell Danger Response other than those authored by Naviaux, but that he spoke about it as if it were well established. Of course, science needs...
  20. BruceInOz

    Dr Naviaux's Suramin & Autism Trial - publication and interview

    That would depend on where it was. On the face and/or hands might be tricky.
  21. BruceInOz

    Dr Naviaux's Suramin & Autism Trial - publication and interview

    They do sound like they have fully recognised the problem. One would hope they make sure in future studies that examiners are fully blinded to treatment group and the presence of rash and the mood of the parents. And exclude parent's perceptions from primary outcomes.
  22. BruceInOz

    Dr Naviaux's Suramin & Autism Trial - publication and interview

    A study of the incidence of me/cfs in a group with high functioning autism would be an interesting check of Naviaux's theory though.
  23. BruceInOz

    Dr Naviaux's Suramin & Autism Trial - publication and interview

    In the n=1 sample of my son, the gradual onset of POTS is clear in hindsight (although it was not so clear at the time).
  24. BruceInOz

    Dr Naviaux's Suramin & Autism Trial - publication and interview

    Autism covers a large spectrum. Not all are non verbal. My interest is I have an adult son with Aspergers who has developed POTS recently (diagnosed via tilt table). With me having ME for 23 years, I find the connection interesting.
  25. BruceInOz

    Dr Naviaux's Suramin & Autism Trial - publication and interview

    In the interview linked to in the original post, Naviaux said: I would have thought this suggests there should be a higher incidence of me/cfs in people with autism than the general population. Are there any studies that suggest this?
  26. BruceInOz

    Layering in ancient teeth reveals history of vitamin D deficiency

    I am left puzzled what their point is: If D deficiency was 4 times lower then they were getting more D way back then, not less so why is that counterintuitive. They were outside more getting more sun so less deficiency as expected. ETA: I guess maybe they were surprised there was any...
  27. BruceInOz

    Distinguishing CFS - New Zealand Research

    I assume this is a pun on the fact that Ron's device measures the electrical resistance of cells, presumably by employing an electric circuit? Very subtle humour @TiredSam :cool:
  28. BruceInOz

    Sleep Apnea

    I also wonder this. My ME was sudden onset after virus in 1994. Ten years ago I had a sleep study which showed obstructive sleep apnea but normal if I sleep on my side. I managed it for years by forcing myself to sleep on my side but always worried about whether I really was controlling it. I...
  29. BruceInOz

    Lost Years

    My avatar is my clumsy attempt at representing my lost years without freezing a number in time. I was last well in 1994.
  30. BruceInOz

    "Once again, the PACE authors respond to concerns with empty answers" - JHP by David Tuller

    And: