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  1. InitialConditions

    Perrin Technique

    It's the same article every few years, but Raymond still looks like he's living in the 1980s.
  2. InitialConditions

    Incompetence and “Useless” Research into ME and Long COVID

    There's definitely a lot of bad science / poor papers in this field, and that's largely due to the nature of the illness, being somewhat poorly defined, heterogeneous, and misunderstood. Conflation with normal fatigue is obviously a clear problem and results in myriad terrible papers from people...
  3. InitialConditions

    Blood Volume Deficit in POTS Assessed by Semi-Automated Carbon Monoxide Rebreathing, 2024, Kulapatana et al

    It's probably on purpose, given they had almost enough healthy females to match the POTS group.
  4. InitialConditions

    Preprint Relationship between plasma cortisol concentration and Long COVID symptoms in the post-acute phase of COVID-19 ..., 2024, Dalhuisen/Peluso/etc

    Interesting study and a nice, short paper showing that cortisol differences are minor, but there is evidence of low then rising morning cortisol in the LC-ME/CFS group. Seems they haven't controlled for wake time, which is a weakness. Also interesting to note the high prevalence of HIV in all...
  5. InitialConditions

    Precision phenotyping for curating research cohorts of patients with unexplained post-acute sequelae of COVID-19, 2024, Azhir

    At the risk of sounding like a stuck record, I believe those with life-changing disability and illness due to long covid are at risk of having their illness watered down with prevalence rates such as these, which are based on the very lax WHO definiton of long covid (any lingering (>2 months)...
  6. InitialConditions

    C-reactive protein, CRP

    I've been very consistently (5 results) between 1 and 1.6 mg/L.
  7. InitialConditions

    The clots removed from ischaemic stroke patients by mechanical thrombectomy are amyloid in nature, 2024, Douglas B Kell et al

    Perhaps worth moving this thread to avoid any confusion. This doesn't have anything to do with covid 19 per se. It just happens to be from Pretorius and Kell.
  8. InitialConditions

    Comparison of [CBT] versus activity management, both delivered remotely, to treat paediatric [CFS/ME]: the UK FITNET-NHS RCT 2024 Metcalfe et al

    I did wonder whether this journal was actually peer-reviewed, as I wasn't aware NIHR had their own journals — but it is. So it's unlikely these results will be written up elsewhere.
  9. InitialConditions

    Comparison of [CBT] versus activity management, both delivered remotely, to treat paediatric [CFS/ME]: the UK FITNET-NHS RCT 2024 Metcalfe et al

    A 166-page report, in an NIHR journal. How strange. It seems they've not bothered to plot up the results for the primary outcome and instead have presented the results in a table.
  10. InitialConditions

    Assessing the Relationship in Symptomology of Myalgic Encephalitis/Chronic Fatigue Syndrome and Long Covid, 2024, Hardigan

    Why use 'myalgic encephalitis' in the title and keywords, but 'myalgic encephalomyelitis' in the main text? Can only assume this is sloppiness.
  11. InitialConditions

    United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

    This is an internal event; they usually have something every month. I doubt there will be anyone attending except BACME clinicians.
  12. InitialConditions

    United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

    The problem with the BACME events is that they are always members only.
  13. InitialConditions

    United Kingdom: News from Forward-ME Group

    Just a reminder, or for those that had missed it: I wrote about BACME and the dysregulation 'model' here: https://domsalisbury.github.io/mecfs/bacme_dysregulation/
  14. InitialConditions

    United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

    https://bacme.info/event/severe-and-very-severe-me-cfs-workshop/ Upcoming event: Severe and Very Severe ME/CFS workshop Facilitated by Dr Melissa Sargaison (specialist physician and BACME Board member), Ceri Rutter (BACME PPI Lead) Anna Gregorowski (Consultant Nurse and BACME Chair); Sue...
  15. InitialConditions

    Rituximab Is Ineffective for Treatment of Fatigue in Primary Biliary Cholangitis: A Phase 2 Randomized Controlled Trial 2019 Khanna et al

    Ah ok. I wonder if she's currently working on ME/CFS. I think perhaps not. I can't see any publications on ME/CFS since 2020.
  16. InitialConditions

    Problems with the NHS patient portal used to book hospital appointments

    Like MyChart, I suspect MyCare is another version of a patient portal that some trusts are using. But no, in my case it is neither of these and it's just called the patient portal. It seems my issue is not going to apply to others because it's not the same software system / app.
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