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  1. Valentijn

    A Novel Nutriceutical Treatment of ME/CFS, 2017, Comhaire

    I would have preferred the objective measurements be the primary ones, but there was at least one objective secondary outcome. There might be a placebo effect. We don't know, because it's subjective outcomes with no control group. My concern is not with the preliminary study failing to use...
  2. Valentijn

    Help for bedbound aunt

    I'll PM you with contact info.
  3. Valentijn

    Unrest - reviews and general articles

    He's ... nice. And very good at dumbing things down. A bit too good, perhaps :-P He has a tendency to promote a lot of things without a good evidence base, but he'll treat his guests and topics very compassionately. It looks like he's covered it several times, but has simplified it. Eg...
  4. Valentijn

    A Novel Nutriceutical Treatment of ME/CFS, 2017, Comhaire

    I didn't realize the file you uploaded was a different study you co-authored. I appreciate that you seem to view ME as an immune disease and reject the psychosomatic paradigm and treatments. Though I don't think your beliefs regarding the influence of psychosocial factors such as stress...
  5. Valentijn

    A Novel Nutriceutical Treatment of ME/CFS, 2017, Comhaire

    Yes, fatigue is nothing to me. It's not pleasant, but I can ignore it. I can't ignore PEM or more immediate muscle weakness and orthostatic intolerance. I love it when I get a cold - I feel more fatigued, but my capacity for activity improves a bit, and I can do more than usual. I feel yucky...
  6. Valentijn

    Tymes Trust - No reported harassment of staff at Bristol University

    Exactly. They didn't have any records or other evidence for the FOIA request, but are still happy to take Crawley's accusations at face value and repeat them to a wider audience. They need to put up or shut up (after apologizing, preferably).
  7. Valentijn

    A Novel Nutriceutical Treatment of ME/CFS, 2017, Comhaire

    The problem with this is that we don't care about "fatigue". Fatigue isn't what disables us, or makes our lives more unpleasant. When we initially go to a doctor, it usually isn't because we are fatigued. It's because we're disabled, in pain, can't stand up without getting light-headed, or a...
  8. Valentijn

    Esther Crawley

    Motive is almost never a required element of a crime, so doesn't have to proven. But motive is often featured by the attorneys in court cases, especially if there's a jury, so that they feel like they have a full story that they can judge. What is usually required is intent - not necessarily...
  9. Valentijn

    Migraines caused by ME - How to discuss with Neuro?

    This is the relevant bit from a very helpful booklet at http://www.amdf.org.au/wp-content/uploads/2014/05/Mito-Medical-Info-Booklet-201405-web.pdf . They have a lot of other good stuff on their site, especially in the resources section:
  10. Valentijn

    Quotes from scientists who appreciate the support of PWME

    I think @Jonathan Edwards says we're awesome from time to time. Maybe he's got a good quote already, or would like to come up with a new one :emoji_smirk:
  11. Valentijn

    Does anybody else walk as though they're drunk?

    I saw the perfect comeback for that while watching an old episode of Ray Donovan last night (naughty language warning): :angel:
  12. Valentijn

    Does anybody else walk as though they're drunk?

    It's possible that's what helped me at well. During onset, my walking wasn't too bad, but I couldn't keep my sense of balance on a bicycle, and would veer off the path or fall over (not fun with a heavy Dutch bike). I started sublingual hydroxoB12 even before seeing a doctor about treating...
  13. Valentijn

    post-Lyme vs ME: comparative study (France - dec 2017)

    It's one of those articles which is a bizarre mix of biomedical evidence and psychosocial bullshit. Basically they seem to be suggesting that psychological factors can perpetuate a disease which they don't seem to question as being biomedical. So completely biomedical symptoms cause...
  14. Valentijn

    A Novel Nutriceutical Treatment of ME/CFS, 2017, Comhaire

    The problem with citing the failure of CBT/GET or other previous treatments to create an ongoing placebo effect, is that the placebo effect wears off eventually. For example, PACE showed mild subjective improvements from CBT/GET months after those therapies ended, but the 2.5 year followup...
  15. Valentijn

    Complex Chronic Disease Program (CCDP) Patient Engagement Findings

    From what I recall, they weren't given the budget needed for the necessary appointments with the specialist, or testing. I think there was quite a waiting list as well. Basically the entire thing was set up to only be capable of functioning like a British- or Dutch-style BPS fatigue clinic...
  16. Valentijn

    Migraines caused by ME - How to discuss with Neuro?

    A sample taken from urine was tested via Long Template PCR and Ion Torrent PGM. Urine isn't 100% sensitive for detecting heteroplasmic mutations, but it's pretty close, and much better than testing blood. I do have a rare homoplasmic (normally inherited) mitochondrial mutation, A3796G, which...
  17. Valentijn

    Tymes Trust - No reported harassment of staff at Bristol University

    Why is it in the research governance section? This is how that team is described on Bristol's website: It sounds like the Research Policy or Programme Management teams would be more likely to deal with this sort of thing, or the university's public relations, human resources, or publicity...
  18. Valentijn

    Action for ME AGM (UK) is live streaming now

    Discussing other forums in a positive manner would be very likely to attract dissenting opinions, so all discussion regarding events on other forums is disallowed.
  19. Valentijn

    Action for ME AGM (UK) is live streaming now

    Yes, Rule 11 doesn't apply to behavior on remote platforms, so people can certainly discuss other forums elsewhere without facing any consequences for it here. From the Consequences of Rules Violations: So basically behavior elsewhere is only taken into account for serious and nasty offenses...
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