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  1. NelliePledge

    United Kingdom: Bath paediatric CFS/Fatigue clinic - Esther Crawley; Phil Hammond

    Wow that’s a brilliant advocacy action by Rachel Ephgrave i hope Phil Hammond has the guts to take up her offer…….
  2. NelliePledge

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    these people are so convinced they are such geniuses on ‘CFS/ME’they think they can say whatever they like about their ‘model’ and it will be believed despite evidence of what they always used to say being available
  3. NelliePledge

    NICE ME/CFS guideline - Stakeholder submissions to the draft and NICE responses - published 29th October 2021 - discussion thread

    LP ‘support’ i suspect boils down to us & them mindset. One of them in particular ie Crawley is l8nked to it, criticism of her due to LP connection isn’t reacted to by them ‘reading the paper’ and understanding the criticism. it is unthinking, knee jerk one of us is challenged, we are all...
  4. NelliePledge

    NICE ME/CFS guideline - Stakeholder submissions to the draft and NICE responses - published 29th October 2021 - discussion thread

    I feel like every single one of these people sending in comments from their organisation needs basic awareness of ME. A copy of the Purple book and link to Nina Muirheads CPD module to each would be a starting point. Don’t think it’s feasible as presumably NICE wouldn’t release the contact...
  5. NelliePledge

    NICE ME/CFS guideline - Stakeholder submissions to the draft and NICE responses - published 29th October 2021 - discussion thread

    It’s passive aggressive behaviour - the whole thing was set up for them to discuss like adults but….
  6. NelliePledge

    Supporting patients with long COVID return to work, 2021, Madan, Briggs and Chew-Graham

    I was back starting very gradual phased return within 6 weeks of finally getting a diagnosis. I tried for months and months to increase hours worked. That was based on the AFME ‘pacing up’ booklet written by a member of BACME. Went to the CFS clinic in 2016 and did their ‘programme’ which...
  7. NelliePledge

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    BMJ i seem to remember Ingrid Torjesen had hashed up a previous BMJ article about ME
  8. NelliePledge

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    Go for it Brian we’ll get the popcorn ready :thumbup:
  9. NelliePledge

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    Could be automatically generated by the content management system based on recent relevant information- presumably using ME/CFS will have pulled through Nina’s blogs.
  10. NelliePledge

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    I note RCP statement has at the bottom links to other relevant content which is two blogs by Nina Muirhead. It is ironic their statement could result in medics going to those blogs where they will get decent info about ME
  11. NelliePledge

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    :banghead: Clueless Eta that is definitely worth an @dave30th blog all of its own
  12. NelliePledge

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    I agree @Arvo it used to be a quote from ME Patient organisation was thrown in at the end of articles now it’s White whinging.
  13. NelliePledge

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    Agreed. The hardened GET proponents are not going to change much if anything due to these guidelines. However they are a minority and there will be a large group of people who will work within whatever approach their employers set for them. Ensuring implementation by getting the manuals and...
  14. NelliePledge

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    Ugh. presumably they have a list of post publication tasks. I would have thought taking a superceded guideline down was a fairly routine task but maybe there’s more to it with repointing links and so on so they will do it in normal working hours.
  15. NelliePledge

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    Chalder and White just looking like sour grapes, churning out same tripe. Miller subverting the new guidance already. They still blinkered about their so called evidence, need to be sat down to watch Graham’s videos for their education!!
  16. NelliePledge

    Dehydration-like feeling next day after exertion?

    Yes definitely takes practice and you can end up missing the target
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