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  1. Dx Revision Watch

    The future and funding of UK ME/CFS charities

    He was dismissed as paid Medical Advisor in May 2003 and his contract terminated. See these links I provided in my previous post: BMJ Report Third Sector Report Yes, Val Hockey had been CEO. She took a redundancy package in late 2003-early 2004, after a number of trustees had left and a new...
  2. Dx Revision Watch

    The future and funding of UK ME/CFS charities

    Unlike AfME, the MEA is constituted as a membership organization. Under company and charity law, the members have the right to request a copy of the Members Register and to call an EGM, at which for example (and theoretically) a vote of no confidence in the running of the organization might be...
  3. Dx Revision Watch

    The future and funding of UK ME/CFS charities

    But first, the MEA's Board of Trustees (or the membership) has got to want to engage a CEO. As things currently stand, the BoT has complete control over policy, direction and how funds are spent. And if Dr Shepherd were to become a salaried Medical Advisor, he could not remain a trustee. Also...
  4. Dx Revision Watch

    Coming soon; BBC Radio 4 investigation into IAPT Sep 2019

    Thanks for flagging this up @Sly Saint On 18 September, Mike Scott posted dates in the Comments to his blog: "The broadcasts are as below Broadcasts Next Tuesday 20:00 BBC RADIO 4 Sun 29 Sep 2019 17:00 BBC RADIO 4 Will do a blog"
  5. Dx Revision Watch

    Updates on status of ICD-11 and changes to other classification and terminology systems

    Extract from Dx Revision Watch post #354: World Health Assembly adopts ICD-11: When will member states start using the new edition? https://dxrevisionwatch.com/2019/06/17/world-health-assembly-adopts-icd-11-when-will-member-states-start-using-the-new-edition/ Harold Pincus, MD co-chaired...
  6. Dx Revision Watch

    Updates on status of ICD-11 and changes to other classification and terminology systems

    The U.S. National Committee on Vital and Health Statistics (NCVHS) serves as the statutory public advisory body to the Secretary of Health and Human Services for health data, statistics, privacy, and national health information policy and the Health Insurance Portability and Accountability Act...
  7. Dx Revision Watch

    Updates on status of ICD-11 and changes to other classification and terminology systems

    Full transcripts of the two day NCVHS ICD-11 Expert Roundtable meeting, which took place in August, have recently been added to the Expert Roundtable meeting page: The U.S. National Committee on Vital and Health Statistics (NCVHS) serves as the statutory public advisory body to the Secretary of...
  8. Dx Revision Watch

    The future and funding of UK ME/CFS charities

    Anyhoo, I really shouldn't be here, having retired. Should I ever win the lottery (which isn't very likely since I've only ever bought one ticket the night the National Lottery launched), but if I did and won millions, after buying the leather biker jacket I've hankered after for years, I'll...
  9. Dx Revision Watch

    The future and funding of UK ME/CFS charities

    But how would you set about achieving that? Last year, AfME pulled in £1,268,718; no figure available for Year end 2018 for MEA, but for Year end 2017, £325,997. MEA operates with far fewer staff and no CEO or other senior management other than Gill Briody. One might assume that rather than...
  10. Dx Revision Watch

    The future and funding of UK ME/CFS charities

    In theory, under Company law, the membership of the MEA has the right to request a copy of the Members Register, call an EGM and propose a vote of no confidence in the Board. AfME "members" can't do that. So if you were to envisage folding the MEA and several of the smaller orgs into AfME (or...
  11. Dx Revision Watch

    The future and funding of UK ME/CFS charities

    And AfME isn't constituted as a membership org in the same sense that the MEA is. Only the BoT of AfME has a vote - not the "members". There was a time when even its AGMs weren't open to the "members". Even now, I don't think AfME's "members" vote in the trustee election processes.
  12. Dx Revision Watch

    The future and funding of UK ME/CFS charities

    And rolling up a number of orgs into one would mean putting an awful lot of trust and faith in the direction and policies of one org. Let us not forget AfME in the era of Sir Peter Spence; or prior to that, Chris Clarke. In 2002/3 the words "and chronic fatigue" suddenly appeared on AfME's...
  13. Dx Revision Watch

    The future and funding of UK ME/CFS charities

    For a start, and leaving aside whether MERUK would want to merge with a patient membership org, perhaps MERUK might not wish to merge with an org like AfME, whose research committee has Stephen Holgate on it.
  14. Dx Revision Watch

    The future and funding of UK ME/CFS charities

    You might think I'm being overly negative - but there is a great deal of politics between the membership orgs: AfME > MEA > AYME > TYMES Trust > 25% Group.
  15. Dx Revision Watch

    The future and funding of UK ME/CFS charities

    You're not going to get Jane Colby working alongside what remains of AYME staff.
  16. Dx Revision Watch

    The future and funding of UK ME/CFS charities

    The closure of MEPF wasn't just about lack of health: Statement from two of the MEPF Trustees, Dr Claudia Gillberg and Geoffrey Jones GoogleDocs Link: http://bit.ly/statementMEPF
  17. Dx Revision Watch

    The future and funding of UK ME/CFS charities

    I think the best chance would be a completely new membership org, independent of the existing orgs - but that would take time and £££££.
  18. Dx Revision Watch

    The future and funding of UK ME/CFS charities

    MERUK isn't constituted as a membership org.
  19. Dx Revision Watch

    The future and funding of UK ME/CFS charities

    But TYMES charitable objectives are specifically for children and young people and what exactly would they bring to a larger org? 31 May 2018 Income: £11,761
  20. Dx Revision Watch

    The future and funding of UK ME/CFS charities

    BRAME is essentially Christine and her daughter and BRAME does not run consultation exercises with patients and as far as I can see, when Christine or Tanya are present as reps of BRAME at meetings, like Forward-ME, or local services they are representing themselves. The BRAME website doesn't...
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