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  1. NelliePledge

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

    Re-educating the body and increasing tolerance for activities It is not fear of activity :banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead:
  2. NelliePledge

    MEA are updating their Disability Rating Scale - they are asking for comments on current version

    I think there’s something wrong with the pdf formatting the headings and sub headings don’t work properly when text is split by a page break
  3. NelliePledge

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    I was working part time and had to reduce work by 1/3 to keep going to the cfs clinic group I couldn’t manage it as an additional active day.
  4. NelliePledge

    Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

    I haven’t got an allowance. But I have reduced the activity that I do on a minimum day. Washing using wet wipes or flannel rather than a shower. Stay in pyjamas. Ignore the dishwasher and washing. Just make easy food. Microwave rice. Soup or something ive batch cooked.
  5. NelliePledge

    Post-Exertional Malaise - a discussion including defining and measuring PEM

    Ok thanks I imagine that’s not one many are familiar with
  6. NelliePledge

    Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

    Hi @MrMagoo I’ve only got the free version so don’t know about the daily allowance and how that’s calculated are you cutting out some activities on that one day to see if you’re doing too much generally.
  7. NelliePledge

    Opinion 'Long covid' and how medical information is causing illness: A philosophical issue affecting public health, 2023, Garner, Vogt

    He should try taking a look at the wolf in sheep’s clothing psychosomatic philosophy of medicine.
  8. NelliePledge

    Trial Report Exploring the content validity of the Chalder Fatigue Scale using cognitive interviewing in an ME/CFS population, 2024, Gladwell

    This questionnaire has been in use by these people for decades yet only now they are seeing any problems or challenging it. If this paper had been done in 2013 you might have given them a bit of credit but really this is a lightweight attempt at performance of showing distance from the previous...
  9. NelliePledge

    Primary intramedullary extradural Ewing sarcoma 2024 Damer et al

    Genuine question based on not knowing anything. Has anyone in oncology or other areas done any work on common misattributions. It’s all very well doing TV ads as in uk to encourage people to go to their GP but systemic issues need addressing. My guess would be psychosomatic thinking is causing...
  10. NelliePledge

    UK: Voting in government elections

    Voter id card is free https://www.electoralcommission.org.uk/voting-and-elections/voter-id/applying-a-voter-authority-certificate
  11. NelliePledge

    Post-Exertional Malaise - a discussion including defining and measuring PEM

    what about the unplanned things that happen. Unexpected contact from other people, situations that happen like fridge breaking down, not sleeping all night etc etc. You can’t plan for those only record the effect retrospectively. So pacing can never eradicate PEM, it can help mitigate
  12. NelliePledge

    USA Minnesota - Dr Tam

    @Kitty is on fire this evening :D
  13. NelliePledge

    Medical assistance in dying when natural death is not reasonably foreseeable, 2023, Wiebe and Kelly

    Agreed. And to be honest part of the problem with my parent was the onset being late 50s and physically relatively fit and recovered a few times from infections because they weren’t frail. But even when frail nursing home staff called in paramedics a few times. An A&E consultant actually wrote...
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