Search results

  1. A

    Prevalence and predictors of long COVID among non-hospitalised adolescents and young adults: a prospective controlled cohort study, 2022, Wyller et al

    I don't think it's insignificant that the organisations picking up long COVID implications / extent recently were insurers. This is groundhog Day .
  2. A

    UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward

    Depending on FOI data could this get a " lift" from ME awareness day media reporting ?
  3. A

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

    We're in Scotland and there is no SIGN for ME/CFS - a form of clinical guidelines . Advice is to follow NICE guidelines , however there is no infrastructure to facilitate this ( previously not a bad thing) . There needs to be ownership of this condition. Having no specialist consultant capable...
  4. A

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

    Sadly, until all medics have some form of education re ME/ CFS this is all but guaranteed to continue. Unless you yourself or a loved one have experience of ME / CFS there is no hint for a clue about what truly is a parallel universe in which people exist.
  5. A

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

    Thank you. She didn't expect much , but there's always a glimmer of hope that it might be different.
  6. A

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

    So so concerning and depressing. Recent rheumatology appointment was a gold plated exercise in gaslighting. Daughter pulled up for having a stick , ( she refuses to use a wheelchair for any appointments after paediatric experience and so pays for this afterwards ) and told to exercise and build...
  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

    Non ME aunts ferritin is currently 660mcg/L. She had bloods done last week and they have been repeated so will see if it's confirmed next week. She asked for blood tests as she is constantly feeling tired and is light headed on and off. Practice nurse is taking an interest and discovered kidney...
  8. A

    Endoscopy - sedation ?

    Thanks for this - very useful . It's an upper endoscopy which may take a biopsy ( as I currently understand it , there is a patient info leaflet through in today's post which I have to look at later ) It's always better to be prepared and we will be in touch with the department prior to bottom...
  9. A

    Endoscopy - sedation ?

    Thanks @Arnie Pye .
  10. A

    Endoscopy - sedation ?

    Thank you @Leila
  11. A

    Endoscopy - sedation ?

    Yes, we will thanks for the suggestion
  12. A

    Endoscopy - sedation ?

    Thanks @Sasha My daughter is now 21. She has had swallowing issues but these are a bit better. Anaesthetic worries her a bit. I think her biggest fear is her neck muscles seizing during the procedure
  13. A

    Endoscopy - sedation ?

    Thanks @Binkie4 . Good to hear it was not a bad experience. Hopefully it will pan out ok here too.
  14. A

    Endoscopy - sedation ?

    Thank you . Hopefully her experience may be similar
  15. A

    Rheumatology appointment - queries

    Thanks. Sadly she's all too aware of the lack of interest. Usually this means she limits what she says as too many symptoms provoke incredulity . FND is being slapped on everything here at moment .
  16. A

    Lost Time

    Thanks. It would be good to know how common it is and if it's a feature in conjunction with other things. Brain fog is getting worse at moment too , but that could be entirely coincidental.
Back
Top