Search results

  1. InitialConditions

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

    It would be good for someone to join for this reason. This is open to all clinicians; it's not a closed event only open to BACME members.
  2. InitialConditions

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

    https://www.bacme.info/civicrm/event/info?id=11 The aims of this event are: To share experiences of the impact of Long-COVID on specialist CFS/ME services, professionals & patients To receive updates on national and local progress on the integration of specialist fatigue management pathways...
  3. InitialConditions

    CBT for CFS Therapist Manual PAEDIATRIC CFS TEAM, ROYAL UNITED HOSPITAL, BATH, UK Loades, M.E. & Starbuck, J. | 2020

    This document has been discussed on Twitter over the weekend. I think it might be worthwhile comparing versions I and II, so here is a comparison of the two documents (if the link works as expected): https://draftable.com/compare/UgEqXBfVchrM
  4. InitialConditions

    Covid-19 vaccination experiences

    That's not what's happening. Dr Strain said he'd like to trial monthly vaccines for long Covid, based on the evidence of some patients improving after jabs.
  5. InitialConditions

    Evaluating Routine Blood Tests According to Clinical Symptoms and Diagnostic Criteria in Individuals with [ME/CFS], 2021, Baklund et al

    Low, not high, ESR has in the past been cited as a potential marker/finding of ME/CFS. I don't think these sorts of studies will lead us anywhere.
  6. InitialConditions

    Yet another NHS reform !

    They never stop f*cking around with the NHS, do they? All the signs are this is not widely supported within the NHS, and that it removes barriers to NHS privatisation.
  7. InitialConditions

    UK: Disability benefits (ESA and PIP) - news and updates 2021 - 2022

    I believe I have what I what, thanks to a generous member.
  8. InitialConditions

    UK: Disability benefits (ESA and PIP) - news and updates 2021 - 2022

    Merged thread Does anyone have the main Benefits & Work PIP guide document that they can share with me? My membership expired in April and I'd like to get hold of this guide. Many thanks!
  9. InitialConditions

    UK: Priority Setting Partnership for ME/CFS

    Ok, so it turns out the Protocol was published on the JLA website, but it’s hidden in the depths of the website. The final Protocol is here: https://www.jla.nihr.ac.uk/documents/me-cfs-psp-protocol/26824 I’ve asked that this and other key documents are added to the ME-PSP website.
  10. InitialConditions

    UK: Priority Setting Partnership for ME/CFS

    Hi @MEMarge @Amw66 (I hope I'm tagging the right people). This page (https://www.jla.nihr.ac.uk/about-the-james-lind-alliance/templates-and-useful-documents.htm) states that the PSP Protocol should be published on the JLA website once it is finalised by the Steering Group. I don't think it has...
  11. InitialConditions

    Covid-19 vaccination experiences

    I had no worsening of symptoms in the days following my vaccines (Pfizer), but I've had a really bad few months, and I'm trying to ascertain whether the vaccines have played a role. My stamina / endurance has reduced from already low levels, less energy overall, and increase in muscle soreness...
  12. InitialConditions

    New Documentary "Living with Chronic Fatigue Syndrome"

    I watched yesterday, and thought it was good. Too many assertions about etiology and following particular hypotheses. And I did not understand the German doctor who used length of crash to distinguish between PVFS and ME/CFS. I think she just made that up.
  13. InitialConditions

    NHS ME/CFS clinics asking patients for feedback RE new guideline and future changes

    I don't think this is unusual now. There's been a gradual move away from GET and in some cases ME-CBT.
  14. InitialConditions

    NHS ME/CFS clinics asking patients for feedback RE new guideline and future changes

    A second letter, from a different postee, but from the same clinic (which means I'm not sure how widespread this feedback exercise is).
  15. InitialConditions

    NHS ME/CFS clinics asking patients for feedback RE new guideline and future changes

    Yep. Also, the clinics—as far as I'm aware—lack any sort of central (national) organisation. The NICE guideline and BACME are the main common threads. I would be interested to know whether this sort of feedback exercise is mandated within the NHS for any new/revised NICE guideline, or whether...
  16. InitialConditions

    NHS ME/CFS clinics asking patients for feedback RE new guideline and future changes

    I saw this on Reddit. Someone had posted saying they received a letter from their ME/CFS clinic, were dreading what it might be, but it turned out to be an invitation to be part of a patient focus group to provide feedback on the new NICE guideline—which they were happy about. I asked the...
  17. InitialConditions

    Spotlight on Long Covid webinar series, The Royal Society of Medicine

    Does anyone have access to this webinar?
Back
Top Bottom