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  1. Hutan

    Off label use of Aripiprazole shows promise as a treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Crosby et al. 2021

    Looking at all of the participants, the change in reported levels of fatigue went from an average of about 6 to 4, on an 11 point scale (0 to 10). There might even have been a little bit of unintended bias from the clinicians. Records were only evaluated for patients seen twice or more...
  2. Hutan

    Article: How to Report with Accuracy and Sensitivity on Contested Illnesses. 2021. Julie Rehmeyer

    It's a pretty good article. It reminded me just how hard it is for journalists coming into the ME/CFS story cold to get enough knowledge to write without mistakes and mis-representation.
  3. Hutan

    Off label use of Aripiprazole shows promise as a treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Crosby et al. 2021

    I'm just trying to assess the findings, as we do for the BPS and other papers, and questioning if we can really say this is a positive result. Sure, it's not a negative result. But, if the paper is not showing anything more than what might be expected with a placebo response in an open label...
  4. Hutan

    Off label use of Aripiprazole shows promise as a treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Crosby et al. 2021

    I guess I'm questioning whether we can view this paper as a 'positive publication'. The results don't exceed the response to placebos that we've seen in blinded ME/CFS trials. When I look at that report, I think, 'there is no response'. They seem to have taken out the 25% of participants...
  5. Hutan

    Why is an ordinary life not good enough anymore? — Alain de Botton

    I like Alain de Botton. I've appreciated his 'The Consolations of Philosophy' when things have been tough.
  6. Hutan

    Off label use of Aripiprazole shows promise as a treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Crosby et al. 2021

    I'm not being critical of the paper, sorry if it came across like that. I find the evidence for aripiprazole helping people with ME/CFS underwhelming, not the paper. I agree it's helpful that the authors published. What I don't find helpful is Janet Dafoe, who should know better, suggesting...
  7. Hutan

    Off label use of Aripiprazole shows promise as a treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Crosby et al. 2021

    I guess a placebo drug dosage could be titrated according to feedback in the same way that the aripiprazole was?
  8. Hutan

    Off label use of Aripiprazole shows promise as a treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Crosby et al. 2021

    To be fair, my weight change point was rather weak. When I'm in a good patch, my weight goes down because I can be more active (and vice versa when I'm not well). But I know that some people with ME/CFS struggle to take in enough calories for various reasons; so improvement in ME/CFS for them...
  9. Hutan

    Off label use of Aripiprazole shows promise as a treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Crosby et al. 2021

    This is underwhelming, and I think it's premature to be suggesting that doctors should be prescribing it outside trials. First, there are no controls, so we don't know if people who weren't treated with aripiprazole would have responded similarly. It's quite likely that patients have become...
  10. Hutan

    Medical scientists and philosophers worldwide appeal to EBM to expand the notion of ‘evidence’, BMJ Evidence Based Medicine 2020

    Wow. Oh, I think you are wrong, it's quite logical. You are just focusing on the wrong outcomes, outcomes like 'better health'. Think of outcomes more like knighthoods, feelings of moral superiority and insurance company largesse, and it becomes quite logical.
  11. Hutan

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Yes, you are doing terrific work @Caroline Struthers. Thank you. I guess when the rewrite of the exercise review was announced, we all, including Hilda and even Cochrane, expected it would happen faster than it seems to be happening. I get that Covid-19 has slowed things down, but really, the...
  12. Hutan

    Review article: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Where Will the Drugs Come From? 2021, Toogood et al

    As an off-the-wall and circuitous answer to the question "where will the drugs come from?": Ciguatera poisoning can cause long term sequelae that look a lot like ME/CFS - fatigue, brain fog and pain, with relapses triggered by exercise. The mechanisms are better, although still not well...
  13. Hutan

    Review article: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Where Will the Drugs Come From? 2021, Toogood et al

    Yes, this feels like quite a step forward. A lot of the possibilities were written up rather more positively than I think is warranted though, although I understand that the purpose of attracting interest requires some hopeful statements. For example this one for NADH and CoQ10: my...
  14. Hutan

    News from Aotearoa/New Zealand and the Pacific Islands

    It was a fairly helpful interview, in terms of increasing public understanding of the illness. Dr Vallings does refer to the illness as CFS/ME or Chronic fatigue syndrome which is slightly annoying. She said that there's no reason to think that Long Covid is not a post-viral fatigue syndrome...
  15. Hutan

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    https://www.healthrising.org/blog/2021/02/01/garner-recovery-long-covid-recovery-story/ Cort Johnson has written about Garner's recovery. Cort does not appear to have read Garner's previous blogs (edit - and facebook posts), as he does not appear to know that Garner was attempting to run long...
  16. Hutan

    Dr Norman Swan: ME/CFS is more psychosomatic than long-COVID

    I know that's what Swan is doing. But, he isn't the only person running the show these days, it seems. It is progress, even if it is of the 'water on stone' sort.
  17. Hutan

    Low oxygen SPO2 anyone?

    Sorry to hear about the relapse AWNTY. I don't have a SPO2 meter, but I was thinking of the tendency of my hands to go numb when elevated as I read this thread. It happened a lot to me and my two children in the first year we became sick, and it happens these days when I've overdone it. It's...
  18. Hutan

    Are there subgroups of chronic fatigue syndrome? An exploratory cluster analysis of biological markers, Asprusten et al, 2021

    Notwithstanding this, (that PEM is fundamental to a definition of ME/CFS), I have been wondering if ME/CFS symptoms are a particular subset of possible symptoms arising from related processes during and after an infection. One of the prompts for the wondering is the case of chikungunya on...
  19. Hutan

    News from Aotearoa/New Zealand and the Pacific Islands

    I think the name used for the disease in this 'fully revised edition' - 'Chronic Fatigue Syndrome/ME' - is a good indicator of the likely content. Sort of right, but a bit out of date, and with more than a touch of BPS. Assuming it's like Dr Vallings' previous books, people can get better, and...
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