• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Search results

  1. L

    Dr David Tuller:The Crawley Chronicles Resumed Dec 13th 2017

    Looks like a good overview of the flaws in the SMILE trial. If I have one minor criticism it is that I would rather the title was focussed on the trial rather than the lead researcher: personalising it makes it too easy for this to be portrayed as a personal vendetta rather than a dispassionate...
  2. L

    Transforming growth factor beta (TGF-β) in adolescent chronic fatigue syndrome

    Given the selection criteria, I'm not sure there's much we can conclude from this study at all.
  3. L

    Breaking News: Immunotherapy Drugs Cause Autoimmune Diseases in Some Patients

    Interesting. I had already thought that autoimmunity was a known risk of PD-1 inhibitors, given that one of the main purposes of PD-1 is to down-regulate the immune system.
  4. L

    Clinical and cost-effectiveness of the Lightning Process for chronic fatigue syndrome

    This is from an article on an unrelated topic (that the evidence behind 'unconscious bias' is a bit iffy scientifically) that I thought illustrated my point above quite well:
  5. L

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    Not sure if this has been posted elsewhere but the Jackson Lab CRC has started a blog: https://jaxmecfs.com/
  6. L

    Clinical and cost-effectiveness of the Lightning Process for chronic fatigue syndrome

    Except there's precisely zero evidence that ME/CFS is down to vaccines. As evidenced by the fact that vast numbers of patients develop ME/CFS not following a vaccination. Please be aware that every time ME/CFS advocates start making poorly-evidenced claims about vaccines it makes it very easy...
  7. L

    Clinical and cost-effectiveness of the Lightning Process for chronic fatigue syndrome

    Agreed. Having worked in both the public and private sector I’m wary of any government/corporate conspiracy theories because in most cases it requires an implausible level of competence from the parties involved. Taking it one step further, there is no external conspiracy either, in the...
  8. L

    NCNED MRI study

    Is it this one? https://www.ncbi.nlm.nih.gov/pubmed/29152994
  9. L

    Rituximab Phase III - Negative result

    AFAIK, I have neither - but a sister with Hashimoto’s and a half brother with a rare mast cell disorder that almost killed him in the three years it took to get a diagnosis. This, plus a history on that side of the family that includes rheumatoid arthritis and fatal pernicious anaemia, is what...
  10. L

    Rituximab Phase III - Negative result

    I think you’ve articulated what I was trying to say far better than I got across. I understand why the Stanford team want to share early results (and they are fascinating) but whilst they remain unpublished we shouldn’t read too much into them. Which is why I’m so impatient to see them in a...
  11. L

    Rituximab Phase III - Negative result

    Ah ok, I’m out of date. I just wish they’d go ahead and start formally publishing these findings rather than rely on YouTube updates or similar.
  12. L

    Rituximab Phase III - Negative result

    FWIW, I believe the nano-chip test was only on severe patients. But to be honest we have little to go on as it’s not been published in a peer reviewed paper and I will remain wary of the nano-chip findings until it is, so that sufficient detail on possible limitations/confounding factors can be...
  13. L

    Rituximab Phase III - Negative result

    Well this is a kick to the guts. Main question now is whether negative result was p=0.5 (total failure) or p=0.06 (trend but need to test further / weed out unaffected subgroups).
  14. L

    Perrin claims 86% success rate diagnosing ME/CFS

    'Toxins' is one of those words that get thrown about by practioners of stuff like this which sound sciencey but in the context in which they're used are incredily unspecific. See also: 'energy'; 'natural'. Without specifying what one means by the term, it impossible to deny that 'everyone on...
  15. L

    Perrin claims 86% success rate diagnosing ME/CFS

    Colour me unconvinced. Beyond lots of testimonials, what scientific evidence does he have that ME/CFS can, essentially, be cured by a fancy massage? If the mechanism is some sort of failure of the lymphatic system, has there been any experiments that actually try and measure the movement of...
  16. L

    Brain imaging study crowdfunding request from sympathetic Harvard researcher

    Can't speak for NIH specifically but a lot of medical research funders require there to have been some form of pilot study before they'll commit funds. Across a range of illnesse, seed funding is generally provided by charities to provide small sums of money to generate a proof-of-concept study...
  17. L

    New Scientist: it may be the carbs not the gluten making you ill

    Ah yes OK, I was aware that gastrointestinal symptoms were in some criteria, just not that they were specifically linked to wheat/gluten.
  18. L

    New Scientist: it may be the carbs not the gluten making you ill

    Interesting article. Genuine question though: is there any evidence that ME patients are more likely to be sensitive to gluten and/or wheat? ie beyond the 12% cited for the general population?
  19. L

    Daily Mail Today: ME patients might be genuinely ill after all.

    Pains me to say it, but this is still light years ahead of the Guardian. Which has chosen to continue its policy of ignoring any ME story that doesn’t support its earlier reporting of deranged psychopaths claiming to be tired.
  20. L

    Cytokine signature in chronic fatigue syndrome

    Montoya et al have replied to Roerink et al. http://www.pnas.org/content/early/2017/10/26/1714692114.short tl;dr - none of your criticisms as to methodology are valid and thus the TGF-beta findings are still robust.
  21. L

    Cellular bioenergetics is impaired in patients with chronic fatigue syndrome

    New Scientist coverage here: https://www.newscientist.com/article/blood-cells-chronic-fatigue-syndrome-drained-energy/ I think it's paywalled for non-subscribers so I'll just share the opening paragraphs - they're good :)
  22. L

    Cytokine signature in chronic fatigue syndrome

    Isn't this the same team that raised a load of objections to the Naviaux paper, or am I misremembering? Clearly they have an axe to grind. That said, the question they raise about equipment used to quantify TGF-beta is an interesting one and one that I would like to see Montoya's response...
  23. L

    Cellular bioenergetics is impaired in patients with chronic fatigue syndrome

    Agreed, I was being a little unfair. My impression had been that Julia Newton had done quite a bit of epidemiological stuff (e.g. 40+% of ME/CFS referrals having other dignosable conditions) and the biomedical stuff had so far not turned up much, compared to this study. (Not that negative...
  24. L

    Cellular bioenergetics is impaired in patients with chronic fatigue syndrome

    My guess is that I can't see that it would be a good diagnostic test for now. If we take the measurements for which there is the biggest difference between CFS and Controls, say Fig 3.D or Fig 3.E (Maximal Respiration and Reserve Capacity, respectively), whilst there's a highly statistically...
  25. L

    Cellular bioenergetics is impaired in patients with chronic fatigue syndrome

    Just going through it now but my first (parochial) thought is, wow, this is BRITISH research. Actual British research that doesn’t involve false illness beliefs, beat-em-harder exercise techniques, or expensive magic circles devised by tarot practitioners. The tide is turning.
  26. L

    Dr Phil Hammond talks to Jen Brea about Unrest this morning on Radio Bristol

    I’m still to listen to the interview but Dr Hammond has written some stuff elsewhere (‘ME cluster bomb’ in Private Eye) on ME that strikes me that he’s somebody who’s deeply bought into the BPS explanation but who is gradually, and uncomfortably, starting to reconsider those views. It’s slow...
  27. L

    Dozens of leading professionals just slammed Theresa May’s controversial new mental health ‘guru’ [L

    Yeah, I hesitated posting something similar about the journalist who wrote it. Let’s just say that some feel he has a somewhat unfortunate fixation on Jews. As for the RCPsych tweet, my guess is if it’s genuine it’s a bot they have to RT relevant stories that has backfired rather spectacularly
  28. L

    Mass hysteria may explain 'sonic attacks' in Cuba, say top neurologists

    Found it... https://en.wikipedia.org/wiki/Goldwater_rule
  29. L

    Mass hysteria may explain 'sonic attacks' in Cuba, say top neurologists

    Continuing the theme of 'if we can't explain it, then the patient is probably hysterical'. https://www.theguardian.com/world/2017/oct/12/cuba-mass-hysteria-sonic-attacks-neurologists I seem to recall that the Amercian Psychiatric Association or similar had guidance that doctors shouldn't...
  30. L

    Rethinking childhood adversity in chronic fatigue syndrome

    Agreed, that's how I read this as well. It's effectively saying that any study that claims childhood adversity is linked to ME/CFS without controlling for co-morbid lifetime major depressive disorder as a confounding factor is unreliable. Which, I think, is basically all of them. (No...