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  1. InitialConditions

    Has anyone else here struggled with a persistent verruca?

    I love a story with a happy ending.
  2. InitialConditions

    BACME position paper on the management of ME/CFS, 2020, updated 2022 - discussion thread

    I didn't. At the time I was part of the CMRC PAG and some of these thoughts made it back to BACME members via feedback we were asked to give on a talk Vikki McKeever and Peter Gladwell gave. Also, Sue Pemberton, who had by then left BACME, messaged me on the subject of my blog, so it made it to...
  3. InitialConditions

    BACME position paper on the management of ME/CFS, 2020, updated 2022 - discussion thread

    I will share again my blog on this Position Paper: https://domsalisbury.github.io/mecfs/bacme_dysregulation/ I did try to be nice.
  4. InitialConditions

    UK Invest in ME conference 2025

    I think any conference would have more value if different orgs collaborated, but unfortunately they all seem to want to do their own thing.
  5. InitialConditions

    UK Invest in ME conference 2025

    They are calling it 'International Conference Week' now as there are several events/conferences running consecutively, as is usual for IIMER. More details here: https://www.investinme.org/meconferenceweek2025.shtml
  6. InitialConditions

    Review Defining and measuring long COVID fatigue: a scoping review 2024 Thomas et al

    Thanks for posting this Andy. These corrections have been made after I contacted the journal editors about the issues as well as Reviewer 1's 'I clearly didn't even bother to read the paper' review. BMJ tells me that "[they] have verified that the standard of peer review met the journal's...
  7. InitialConditions

    Open ReMEdi clinical trial, UK [Lindus Health, Alfred E. Tiefenbacher GmbH]

    I think we can safely conclude that it seems they don't want patients to know which drug this is, but they are probably underestimating our ability to figure it out (I think Amifampridine is a good guess).
  8. InitialConditions

    Open ReMEdi clinical trial, UK [Lindus Health, Alfred E. Tiefenbacher GmbH]

    There are some on X speculating that it might be Amifampridine, a potassium channel blocker.
  9. InitialConditions

    Open ReMEdi clinical trial, UK [Lindus Health, Alfred E. Tiefenbacher GmbH]

    I think we'd just be guessing at trying to make sense of this drug identifier. There are so many different possibilities, including that the identifier doesn't really mean much at all.
  10. InitialConditions

    Open ReMEdi clinical trial, UK [Lindus Health, Alfred E. Tiefenbacher GmbH]

    I'm wondering if this is not more likely to be some sort of supplement formulation, given Dr Godlewska was doing work on creatine (I think).
  11. InitialConditions

    Open ReMEdi clinical trial, UK [Lindus Health, Alfred E. Tiefenbacher GmbH]

    I think Lindus Health is just running the trial — the 'CRO'. They aren't a pharmaceutical company. They seem like a healthcare startup for doing clinical trials. The trial sponsor seems to be Alfred E. Tiefenbacher GmbH.
  12. InitialConditions

    Open ReMEdi clinical trial, UK [Lindus Health, Alfred E. Tiefenbacher GmbH]

    Seems to be related to work of Dr Beata Godlewska at Oxford, discussed here: https://s4me.info/threads/university-of-oxford-cfs-study-researching-the-biochemistry-of-chronic-fatigue-syndrome-closes-30th-dec-2022.23609/#post-394994
  13. InitialConditions

    Open ReMEdi clinical trial, UK [Lindus Health, Alfred E. Tiefenbacher GmbH]

    Myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) affects around 1% of the population, bringing significant challenges to daily life. There is an urgent need for new, effective treatments to improve the quality of life for those affected. If you've been living with ME/CFS symptoms for...
  14. InitialConditions

    Incidence and Prevalence of Post-COVID-19 Myalgic Encephalomyelitis: A Report from the Observational RECOVER-Adult Study, 2024, Vernon +

    I have commented below this post about how this is likely an overestimation. Not to mention that this prevalence figure is based on people infected with COVID, not the general population.
  15. InitialConditions

    Can small fiber neuropathy present like ME/CFS?

    Do SFN patients feel really unwell. Like, really unwell ME-unwell? Physical *and cognitive* exhaustion? Immune (flu-like) symptoms, sore throat, tender lymph nodes, worse in PEM/crashes..? From what I've read that's not the case, although there is of course significant symptom overlap. I guess...
  16. InitialConditions

    [UK] Is it possible to obtain your own NHS scan imagery?

    It should be easy enough. You submit a SAR and the form should include an option to get all imagery. If not then add that request yourself. The hardest part is dealing with the file formats and reading the imagery files, because different trusts use different packages and you'll need to install...
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