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  1. Hutan

    Comparing Idiopathic Chronic Fatigue and ME/CFS: Response to 2-day CPET, two papers males & females, 2021, Van Campen & Visser

    For the female study, there were 24 people diagnosed with ME/CFS and classed as severe who somehow managed to do two CPETs, appropriately spaced. They were left out of the analysis due to them not being appropriately matched with the ICF, which is fair enough. Van Campen did a study...
  2. Hutan

    Comparing Idiopathic Chronic Fatigue and ME/CFS: Response to 2-day CPET, two papers males & females, 2021, Van Campen & Visser

    Sure, I'm just not sure what RERs were reported in the studies- I haven't looked. @Snow Leopard mentioned about effort perhaps being less than full based on heart rates. Edit - the RERs look fine >=1.1 in both males and females, ME/CFS and ICF.
  3. Hutan

    Comparing Idiopathic Chronic Fatigue and ME/CFS: Response to 2-day CPET, two papers males & females, 2021, Van Campen & Visser

    Yes, but look at the change in Vo2 at the ventilatory threshold in both males and females: Male Female The split looks suspiciously too perfect for the paired CPET to not be playing some part in the diagnosis decision. I mean, assuming the diagnosis was made before the CPET, what if an ICF...
  4. Hutan

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

    Yaay, I'm so glad that you found that study @cassava7. So this is about children and young people reporting on treatment acceptability and whether their symptoms improved. It pretty much eliminates Crawley's modus operandi. Maybe Bergman will be good.
  5. Hutan

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

    So, these are the reviewers (again). Consumers: Mary Dimmock (USA, carer, person with ME/CFS advocacy background), Kay Hallsworth (UK, person with ME/CFS); Clinicians: Todd Davenport (USA, physiotherapy), Julia Newton (UK, medical); Systematic reviewers with relevant methodological expertise...
  6. Hutan

    "Instead of believing my reports of pain, experts told me to have a baby or see a psychiatrist"

    Thanks @Sean, there's lots of good bits to quote in that article. e.g.
  7. Hutan

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

    (Coincidentally, speaking of Glasziou and previous Cochrane Exercise Therapy Reviews and natural progressions) I was having a look at David Nunan, really wanting him to be a person I could have confidence in. Turns out we already have a thread on a paper that he has co-authored, here: Key...
  8. Hutan

    Key Concepts for Informed Health Choices: a framework for helping people learn how to assess treatment claims and make informed choices.

    From the description of the paper in google scholar: So, apparently Ugandan primary school children with poor reading skills were taught to apply key concepts - these ones: Treatments can harm.*† Anecdotes are unreliable evidence.*† Association is not the same as causation.† Common...
  9. Hutan

    Key Concepts for Informed Health Choices: a framework for helping people learn how to assess treatment claims and make informed choices.

    Oh, the irony. Here's the full list of authors: Iain Chalmers, Andrew D Oxman, Astrid Austvoll-Dahlgren, Selena Ryan-Vig, Sarah Pannell, Nelson Sewankambo, Daniel Semakula, Allen Nsangi, Loai Albarqouni, Paul Glasziou, Kamal Mahtani, David Nunan, Carl Heneghan, Douglas Badenoch I was looking...
  10. Hutan

    Comparing Idiopathic Chronic Fatigue and ME/CFS: Response to 2-day CPET, two papers males & females, 2021, Van Campen & Visser

    It's not about being a diagnostic marker - it's to demonstrate that there is a real consequence from exercise, that it can make people very sick. And exercise every day has a cumulative effect. Still, many people do not believe that. If there are CPETs, there is data to accompany what people...
  11. Hutan

    Comparing Idiopathic Chronic Fatigue and ME/CFS: Response to 2-day CPET, two papers males & females, 2021, Van Campen & Visser

    Fair enough, it certainly wouldn't be for everybody. But people are still talking about GET trials, and trials of CBT to convince people they need to increase their activity levels - and ethics boards are approving them. People are putting their health at risk every day already. If you got a...
  12. Hutan

    Comparing Idiopathic Chronic Fatigue and ME/CFS: Response to 2-day CPET, two papers males & females, 2021, Van Campen & Visser

    I don't think we can know that from the information in the papers. They say the CPETS were done to assess exercise intolerance. It seems unlikely that the male study did not have a single person diagnosed with ME/CFS who did not show a drop in performance. That's a pretty impressive diagnosis...
  13. Hutan

    Comparing Idiopathic Chronic Fatigue and ME/CFS: Response to 2-day CPET, two papers males & females, 2021, Van Campen & Visser

    I would do it, because if there is a constant decline during that period, it says a lot about how GET is damaging. And I don't want my son and all the other young people now and to come to have to live in a world where the BPS view about ME/CFS has credence. ...Well, maybe I'd do a week. And...
  14. Hutan

    Comparing Idiopathic Chronic Fatigue and ME/CFS: Response to 2-day CPET, two papers males & females, 2021, Van Campen & Visser

    This is useful I think. 22% of the ME/CFS females did not qualify as being 'deconditioned' as defined here (i.e. their VO2 peak was at least 85% of that predicted for their age). Note how only 16% were not deconditioned one day later. So over a fifth of the ME/CFS sample would not meet the...
  15. Hutan

    Comparing Idiopathic Chronic Fatigue and ME/CFS: Response to 2-day CPET, two papers males & females, 2021, Van Campen & Visser

    235 patients undergoing CPETS for clinical reasons 170 met ICC and Fukuda criteria = ME/CFS + 65 did not meet the criteria = ICF Of the 170 ME/CFS, 57 only had 1 CPET, and 38 had CPETs spaced too far apart, leaving 75 ME/CFS with two CPET spaced appropriately Of the 75 ME/CFS with two...
  16. Hutan

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

    Where I am, there isn't really anything in the way of services for people with ME/CFS at all. Hardly anyone is going to actually be prescribed GET; it's more likely the doctor will just say 'perhaps you could try getting out and about a bit more?' and not advocate for help with household tasks...
  17. Hutan

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

    Yes, I agree. I'm not completely sure that the CPET studies are rock-solid yet (and I've done a CPET and shown the performance drop, so I'm biased towards them being evidence) - we could use more replication from some independent exercise physiology researchers. But it is does look like...
  18. Hutan

    UK: Priority Setting Partnership for ME/CFS

    Another research area that we need work on is the paired CPET studies. More replication from independent researchers would be good - more paired CPETs in ME/CFS vs really well matched healthy controls - so even match the activity levels as measured with monitors over several months Are they...
  19. Hutan

    Comparing Idiopathic Chronic Fatigue and ME/CFS: Response to 2-day CPET, two papers males & females, 2021, Van Campen & Visser

    I've just caught up with this paper and have still only skim read it. But to me, it has a serious methodological problem. The sample is of males who have done CPETs as part of a diagnostic process. To be clear - no new CPETs were done as part of this study, the authors just looked at existing...
  20. Hutan

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

    This. The Cochrane reviews are a major obstacle to getting better guidelines in place around the world. A finding that GET is useful for ME/CFS would be a tremendous set-back. I feel uncomfortable gambling on that, for the sake of Cochrane sorting out its internal issues. Cochrane seems to...
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