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  1. Woolie

    NYT A Failure to Heal / What happens when a clinical trial fails?

    This is a huge problem in some areas of medicine and psychology that involve drawing on large, pre-existing databases. An example of one of these is the Dunedin study, which tracks a whole bunch of health and other data for over 1000 people over four decades. The problem is that there are no...
  2. Woolie

    Blog: Medical Research Council, Stephen Holgate, "The precision medicine revolution: putting the patient first"

    @Amw66, a lot of what you describe sounds like business hubris. Can you explain the part that is individualised? Is it the actual treatment, or is it more the trimmings?
  3. Woolie

    Blog: Medical Research Council, Stephen Holgate, "The precision medicine revolution: putting the patient first"

    So he's saying that you should ask the patient every now and then whether the drugs you're prescribing and helping or not. Wow - who would have thought of that?
  4. Woolie

    It's not malaise!!!

    Yea, it matters how the term is used and understood amongst lay people. Look at the trouble we had with "fatigue".
  5. Woolie

    It's not malaise!!!

    I like that.
  6. Woolie

    Non-ME harmful/incorrect psychological/psychiatric theories and treatments

    A thread like this wouldn't be complete without a piece on Munchausen's by proxy. Parents demand gag on cot death doctor's lectures (from 2005) Outrage at international acclaim for Meadow Struck by the similarities to some of the babblers in our area, that continue to draw audiences despite...
  7. Woolie

    Article: Not everyone with a disability wants a cure – nor should we expect them to

    I would guess that this idea is totally foreign to virtually all people with ME. And all those with dementia. And all those with cancer. And all those with MS. And all those with severe mental illness. I understand that there is a community associated with some disabilities, that people would...
  8. Woolie

    NYT A Failure to Heal / What happens when a clinical trial fails?

    Just to add to what @Jonathan Edwards says. In clinical trials, people's scores will tend to vary all over the place. So even if you test a treatment that genuinely does nothing (e.g., different dummy pills), you won't tend to see that many people with identical scores at baseline and at the...
  9. Woolie

    It's not malaise!!!

    Absolutely agree, @Esther12. WTF is "neuroimmune exhaustion"? Putting aside the "neuro" for a minute, we definitely feel exhausted, but what's the point of saying "immune exhaustion", what does that add? Who knows for sure that we even have "immune exhaustion"? What if its immune...
  10. Woolie

    Cardiovascular characteristics of chronic fatigue syndrome - Bozzini, Albergati, Capelli, et al

    I haven't looked at the entire paper, but one useful thing is that they provide actual evidence that ME is associated with hypotension. From the abstract:
  11. Woolie

    Is this the mechanism underlying PEM?

    This ADP/ATP account seems to focus on the fatigue part of PEM. But many of us experience it more as an exacerbation of our symptoms, including general sick feeling, accompanied by neural symptoms, sore glands, etc. Yes, you could stretch the ADP/ATP account to all those other things, but in...
  12. Woolie

    Aluminium in brain tissue in autism (2017) Molda et al.

    Yes, and I think postmortems showed high levels of aluminium in some Camelford victims. But this is also a feature of some degenerative diseases, so may not be causal. And there was a lot going on in Camelford, and the aluminium wasn't the worst of it (there was lead and copper poisoning too)...
  13. Woolie

    Trial By Error: The Crawley Chronicles, Continued

    No, no, its exactly the same. When you take into account the perceived value of the person to the company. People not meeting their targets in most companies are a drain and are easily replaced. But some employees in some industries are the product themselves and are not replaceable. Look at...
  14. Woolie

    Is this the mechanism underlying PEM?

    I wasn't that interested in the topic of the paper (which was something about improving performance in athletes). Just the cytokine results.
  15. Woolie

    Is this the mechanism underlying PEM?

    That's interesting, @Hip, thanks for posting. I wasn't thinking that any of the specific cytokines mentioned in the article are "responsible". As you say, that doesn't fit with the wide variability in cytokine profiles in PwMEs. I was thinking it pointed to inflammatory pathways in general...
  16. Woolie

    Is this the mechanism underlying PEM?

    I think this would have an immediate effect, whereas some of the inflammation is delayed (24h to several days).
  17. Woolie

    Is this the mechanism underlying PEM?

    The time frame of the inflammation varies depending on the cytokine. But some cytokines don't peak till 24 hours later, and remain high for several days. That's mentioned in the article, although I forgot to explain it.
  18. Woolie

    Trial By Error: The Crawley Chronicles, Continued

    Germany might still have Universities that are genuine public institutions. But in countries like the UK, Australia and New Zealand, Universities have to make a decent income or they go under. You can't run a University on what the government gives you (if anything). You find ways to make it...
  19. Woolie

    Aluminium in brain tissue in autism (2017) Molda et al.

    I'm not quite sure what to make of this study. Its just that there were so few participants (five). They were of varying ages, and all they had in common was they'd been labelled as having autism spectrum disorder (ASD). I feel like ASD is unlikely to be One Thing. And while this might not be a...
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