Search results

  1. A

    Lost Time

    For the past year my daughter has had unnerving " lost time" experiences.. She' s adamant that she dosnt fall asleep but is unaware of time passing : so it could be that 40 mins or 2 hours has elapsed and she simply has not experienced it. Checking the time has been upsetting and worrying ...
  2. A

    Endoscopy - sedation ?

    My daughter is scheduled for an endoscopy in April. This will be tricky to manage in energy terms - the info pack from NHS suggested this procedure could take up to 4 hours : the last time we were over 1 hour on hospital for a procedure was way back in 2017 for an ACTH test, and her condition is...
  3. A

    Rheumatology appointment - queries

    My daughter ' s rheumatology referral has finally got to appointment stage . She's very nervous . It's at 9am and her sleep cycle is between 5-6am til around 2pm. She will probably try and stay awake which will probably make cognition pretty awful. TBH , she probably wouldn't sleep anyway, so an...
  4. A

    HRA (Health Research Authority) & Bristol University's report on E. Crawley's CFS/ME Studies over registration to the Research Ethics Committee (2019)

    Not off top of my head sorry. It may come to me later ( usually in wee small hours )
  5. A

    HRA (Health Research Authority) & Bristol University's report on E. Crawley's CFS/ME Studies over registration to the Research Ethics Committee (2019)

    I may have picked it up wrongly, but I'm sure a recent study has been flagged up on S4ME with the same issues . It might even have been the same rec code?
  6. A

    Trial Report Possible Markers For Myalgic Encephalomyelitis / CFS Developed In Long Covid: Utility Of Serum Ferritin And Insulin-like Growth Factor-I,2023,Yamamoto

    This is quite good re heme/ ferritin functions etc . Touches on inflammation, signalling etc. ETA low copper status affects ferritin formation . https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3961798/
  7. A

    Trial Report Possible Markers For Myalgic Encephalomyelitis / CFS Developed In Long Covid: Utility Of Serum Ferritin And Insulin-like Growth Factor-I,2023,Yamamoto

    My aunt who is severely affected has humongous ferritin levels . No problems on iron panel and no haemachromatosis. Ferritin us an inflammatory marker . Her sister , who dosn't have ME developed very high ferritin levels too . Again iron panel ok. Recently diagnosed ( after bring fobbed off re...
  8. A

    Long Covid in the media and social media 2023

  9. A

    Cardiovascular and haematological pathology in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): A role for viruses, 2023, Nunes, Pretorius

  10. A

    myHSN NHS Health Service Navigator website: What are examples of MUPS (medically unexplained physical symptoms)?

    Not circles again !
  11. A

    Long Covid in the media and social media 2023

    I'm working with a project team on a job , most of whom have had COVID . All are fine .... except those who ran regularly either don't at all or have hit a new lower limit, and generally they are all feeling more tired - but hey everyone is right , it's just a thing at this time of year.... It...
  12. A

    Two symptoms can accurately identify post-exertional malaise in myalgic encephalomyelitis/chronic fatigue syndrome 2023 Davenport et al

    PEM affects gut here ( motility slows, food intake decreases but can have acute carb craving due to low energy state ) Gut key to providing basis for neurotransmitter functionality ?
  13. A

    ER Stress-Sensor Proteins and ER-Mitochondrial Crosstalk—Signaling Beyond (ER) Stress Response, 2021, Kumar and Maity

    Interesting - this stood out for me as glycolysis has been shown to be an issue "Nutrient stress due to glucose starvation demands a cellular energetic shift from cytosolic glycolysis to mitochondrial oxidative phosphorylation (OXPHOS) system in order to maintain cellular growth and survival...
  14. A

    Long Covid in the media and social media 2023

  15. A

    Well-known, famous people with ME/CFS (public thread)

    I'm sorry if she has a friend with ME, but am deeply cynical about this post. Replies can be cherry picked as has happened with others in the past.
  16. A

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

    An Ianucci sketch on this might have more effect ....
  17. A

    Long Covid in the media and social media 2023

    Wow - a viral.infection impacts real life risk factors ( Acute sarcasm)
  18. A

    Long Covid in the media and social media 2023

    Crutches and Spice , a long time disability advocate / activist on the impact of COVID on women - increased levels of disability https://www.instagram.com/reel/CpxlgV-DTsu/?igshid=YmMyMTA2M2Y=
  19. A

    Long Covid in the media and social media 2023

  20. A

    Long Covid in the media and social media 2023

Back
Top