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  1. Hutan

    International: IACFS/ME - International Association for CFS/ME, IACFSME

    From an email update: a new board member for IACFSME: He sounds good, he has a son with ME/CFS. " Dr. Sigurdsson is a hematologist-oncologist based in Iceland who has been instrumental in advancing care and research of ME/CFS in Iceland and Europe. In 2022, he produced an educational film about...
  2. Hutan

    Is PEM triggered by physical exertion the same as worsening triggered by sensory stimuli, cognitive exertion or emotions? What are the implications?

    The thing is, the effects of sunlight on skin appear to start with any exposure, even with just a few minutes of exposure, and there is a delayed reaction. Small fractions of the UVB dose that result in visible redness cause chemical changes. In that paper I linked above, there was a lot going...
  3. Hutan

    Is PEM triggered by physical exertion the same as worsening triggered by sensory stimuli, cognitive exertion or emotions? What are the implications?

    I'm just going by what I and my son look like when in PEM, and the few photos I have seen of others in PEM. I'm sure about very little these days. But, fatigue due to car travel as a result of constant small muscle adjustments was what I was told about years ago. If fatigue and/or PEM is the...
  4. Hutan

    Is PEM triggered by physical exertion the same as worsening triggered by sensory stimuli, cognitive exertion or emotions? What are the implications?

    People with PEM tend to have puffy faces, puffy eyelids. I am pretty sure that ibuprofen reduces my symptoms - and it reduces pain and reduces swelling. I understand that it works on prostaglandins. Women seem to be likely to produce more prostaglandins than men. Prostaglandins work on...
  5. Hutan

    Is PEM triggered by physical exertion the same as worsening triggered by sensory stimuli, cognitive exertion or emotions? What are the implications?

    A minor point about how travelling in an ambulance might result in PEM (as mentioned in the first post): it is known that the vibrations of a vehicle cause tiredness. This article mentions a study where people sat in a car simulator with and without vibrations, and they became more tired with...
  6. Hutan

    Miranda Hart - British comedian

    I've just caught up with the thread. That Long Covid Advocacy piece discussed back a bit is very impressive. e.g
  7. Hutan

    News from Germany

    We have split off a discussion to a new thread in the Possible Causes and Predisposing Factor discussion subforum: Pre-existing mental illness as a risk factor for ME/CFS
  8. Hutan

    Immune exhaustion in ME/CFS and long COVID, 2024, Eaton-Fitch et al.

    I think the heat maps with their clustering of participants are interesting. Fig 1: Long covid versus Healthy controls Look how the HLA genes (in that dense horizontal band in the middle) really differentiate the long covid people from the controls (LC people mostly on the right side of the...
  9. Hutan

    Review Assessment of the therapeutic potential of salubrinal for ME/CFS and long-COVID, 2024,Warrayat et al.

    There's a paywall unfortunately. This is a team from Barry and Judy Silverman College of Pharmacy, Nova Southeastern University, Fort Lauderdale, FL 33328, USA The snippets suggest that these people understand a lot of the issues around ME/CFS and Long Covid. This isn't a trial though. I...
  10. Hutan

    Use of passively collected actigraphy data to detect individual depressive symptoms in a... 2024 Price et al

    :confused: It looks rather like people who have a job and have to get up in the morning are less likely to 'have depression'. And people who are awake at night are more likely to 'have depression'. Of course, people with ME/CFS, and people with chronic pain are both more likely to be less...
  11. Hutan

    Use of passively collected actigraphy data to detect individual depressive symptoms in a... 2024 Price et al

    Theory-organized: Model Introspection Self-organizing: General Population Model Performance That best model only had a sensitivity of 0.45 and specificity of 0.82. They noted that simple regression models performed no better than chance.
  12. Hutan

    Use of passively collected actigraphy data to detect individual depressive symptoms in a... 2024 Price et al

    Could be useful to have a look to see what they measured with respect to fatigue. The authors seem quite positive about the capacity for measures to predict fatigue.
  13. Hutan

    Pre-existing mental illness as a risk factor for ME/CFS

    From Supplementary Data 1 - the exclusion criteria made it less likely for the ME/CFS participants to have a psychiatric history: So, I wouldn't use the Walitt et al study as evidence of psychiatric illness not being a risk factor for ME/CFS. But there certainly are others, including the...
  14. Hutan

    News from Germany

    Gosh, that was a roller coaster. Good, bad, ugly, confused... This Professor H. Prüß, what role does he have in the fatigue guideline he talks about, and how influential will it be?
  15. Hutan

    Hypothalamus Connectivity in Adolescent Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2024, Byrne et al.

    3.4 Differences in Hypothalamus Connectivity Between ME/CFS and Controls So strength of connectivity wasn't different. Reported confidence intervals for relationships of connectivity degree (as opposed to strength, whatever 'degree' means) straddle either side of zero. So, I don't think they...
  16. Hutan

    Hypothalamus Connectivity in Adolescent Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2024, Byrne et al.

    Brain imaging results are all over the place across various studies, as noted in the introduction of this paper. It's not clear to me how much of the analysis was automated and how much involved manual work that might be subject to bias. There was no statement about the people analysing the...
  17. Hutan

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    It's not bad on this thread, for the reason MrMagoo notes :), but we have converted an existing thread into a place for wearables news: News on wearable technologies for research and have copied Binkie4's post there.
  18. Hutan

    Cost-effectiveness of an extended-role [GP] clinic for [PPS]: results from the Multiple Symptoms Study 3 (MSS3)... 2024 Deary, Burton et al

    We have a number of threads about the underlying study: MSS3 See here Effectiveness of a symptom-clinic intervention ... multiple and persistent physical symptoms, 2024, Burton, Deary et al There are links to the other threads there. MSS3: a morass of mediocrity.
  19. Hutan

    Cost-effectiveness of an extended-role [GP] clinic for [PPS]: results from the Multiple Symptoms Study 3 (MSS3)... 2024 Deary, Burton et al

    A QALY is a year of life lived in perfect health. The mean QALY difference was 0.0447. I make that 16 days. It is set up to be a one-off intervention. And, as @rvallee says, actually as the paper says, the difference was not statistically significant. So, a tiny absolute difference that...
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