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  1. J

    Ron Davis latest: more evidence of "something in the blood" (Simon M blog)

    Regarding the thing in the blood, while I think it would be important to figure out exactly what it is, finding it wouldn't necessarily solve the puzzle. There was another thread about failed Alzheimer's research. The prevailing hypothesis used to be that amyloid beta was the factor that caused...
  2. J

    Ron Davis latest: more evidence of "something in the blood" (Simon M blog)

    I think this image might be the most important experiment in the nanoneedle study. What it shows is that even healthy cells start behaving oddly if subject to ME/CFS plasma. It doesn't tell us for sure what is going on in vivo, but it seems to strongly indicate that something in the plasma of...
  3. J

    An Alzheimer treatment: lecanemab (Biogen)

    This is why I like what Ron Davis' group is doing. They haven't established a strong hypothesis towards any particular direction, which I think would be a huge mistake especially in something as poorly understood as ME/CFS. Instead they rely on observation and data as the first step, then share...
  4. J

    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    Which goes back to the earlier interesting discussion in this thread regarding how to evaluate evidence. Mod note: please continue the discussion about how to evaluate evidence in general on the linked thread.
  5. J

    Signs of Intracranial Hypertension, Hypermobility and Craniocervical Obstructions in patients with ME/CFS (Pre-print 2019/published 2020) Bragée et al

    In the study plan document, they outline the only reason sending patients to London is due to lack of upright machine in Sweden (or anywhere closer for that matter). The London part is an extended study where only 10% of patients are included and according to the same document it would be...
  6. J

    Open Cervicocranial dysfunction, neuroinflammation and infection in ME/CFS compared to healthy subjects, Bragée & Bertilson [MEPRO study]

    In the study plan document, they outline the only reason sending patients to London is due to lack of upright machine in Sweden (or anywhere closer for that matter). The London part is an extended study where only 10% of patients are included and according to the same document it would be...
  7. J

    Do Medical Journals Publish Original Work Anymore? Enough already with meta-analyses

    What they are doing is by definition how Einstein defined insanity. I wonder in what other research career you can keep proposing the same hypothesis for decades after decades if it only produces muddled, let alone negative results. PACE has solved one part of the problem, but it seems the next...
  8. J

    A proposal for ME Action: a commitment to evidence-based medicine

    Breaking down the pyramid, in terms of ME/CFS treatments: 1. Meta-analyses & systematic reviews: none on ME/CFS drugs. 2. Randomized controlled trials: should probably split further into phase 1, 2 or 3 trials. Some phase 1 trials, nothing close to phase 3 after the rituximab failure. 3-5...
  9. J

    Antibiotic exposure and risk of Parkinson's disease in finland: A nationwide case‐control study

    https://www.ncbi.nlm.nih.gov/pubmed/31737957 Given how incredibly common it was for kids in my generation to get prescribed antibiotics for ear and sinus infections, I wonder what other disease it could presuppose to...
  10. J

    Low-dose naltrexone in the treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), 2019, Polo et al.

    This wasn't a trial so they couldn't do any measurements, this is just based on Polo's own observations from seeing a couple of hundred Finnish patients, among which I was. Apparently Polo tried to get a real blinded trial for LDN started several times, but it failed for reasons I don't know...
  11. J

    Livestream: Ron Davis to speak at Columbia University

    Regarding diagnostics and markers, it would be nice to have something to show skeptical doctors from Davis' research. Obviously they have already found lots of things, the nanoneedle etc., but how would you explain that to a layman or even a doctor in a couple of minutes? There needs to be...
  12. J

    Livestream: Ron Davis to speak at Columbia University

    Regarding infections and pathogens, they confirmed over a year ago that they didn't find DNA viruses more often in the patients than in controls. But what about RNA viruses, bacteria, fungi, protozoa etc? This was still not done in the last slide set I saw. Indeed it seems to me that a lot of...
  13. J

    Open Cervicocranial dysfunction, neuroinflammation and infection in ME/CFS compared to healthy subjects, Bragée & Bertilson [MEPRO study]

    I'm confused by your message. First of all, they already have observations from 200 patients from being examined in their clinic, which has initiated this study, so it can only be assumed they have already seen something in the MRI images. Secondly, the default position is always to not believe...
  14. J

    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    The fact that Bergquist as an established scientist and professor is involved is exactly the part which makes it impossible to ignore for me. Maybe someone should invite him here, because Jonathan Edwards is now the only medical authority on this forum. Frankly I can't see how Bergquist has his...
  15. J

    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    I wasn't aware of all the backgrounds of the persons involved. On the other hand, it doesn't surprise me. Probably 9 out of 10 doctors in Europe who worked with ME/CFS have some connections to the BPS ideas, they are deeply rooted simply because it was the main paradigm for over 20 years...
  16. J

    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    Thanks for providing the link to the study proposal. Having skimmed through it, I don't agree with or understand most of your objections. In the document, they outline the goal of the project to describe clinical, laboratory and radiologic findings in ME/CFS patients and comparison of those with...
  17. J

    Intra brainstem connectivity is impaired in chronic fatigue syndrome, Barnden et al., 2019

    The good thing is that it isn't true that no one recovers. Ron Davis in one of his seminar talks this year described how one of his former students got very ill with ME/CFS and had to quit university. A few years later, Davis saw this girl back on her feet. Apparently she had minimized her...
  18. J

    Naltrexone restores impaired transient receptor potential melastatin 3 ion channel function in NK cells from ME/CFS patients, Cabanas et al, 2019

    Most drugs produce some sort of side effects. It usually doesn't prevent from using them in blinded trials, otherwise we would have no approved drugs for anything. But yeah, I'd be really curious to know why he suspended the trial. I sometimes wonder if it's again the curse on ME/CFS at play...
  19. J

    The use of the labels ME, CFS, ME/CFS

    Not my experience at all. CFS and ME are almost always used interchangeably in my country, but usually it's just referred to as CFS, probably at least in part because ME doesn't translate well and is difficult to pronounce. Patient organizations use the term ME/CFS. If a doctor diagnoses CFS...
  20. J

    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    Yeah, agreed. I'm more interested in what are going to be the next steps in this CCI thing. A trial sounds good at first, but I presume there are no blinded trials with placebo surgeries. If so, wouldn't a trial for CCI surgery carry the same weakness as the unblinded smaller rituximab trial? It...
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