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  1. M

    Boom and bust, another ME/CFS myth? - ME/CFS Skeptic blog

    This boom and bust phrase is also used when people are being treated for depression. Tablets take a long time to work, and the person may need to try several, before finding one that does. Typically it takes 6 or more weeks, then when they do start working towards the end of that period, some...
  2. M

    Maeve Boothby O'Neill - articles about her life, death and inquest

    Timing of this lack of supervision from above report p11 Whilst there is evidence of some monthly supervision being held, there is evidence from the supervision records which shows a gap of five months between October 2020 and March 2021. From p6: The complaint was raised by Devon County...
  3. M

    Maeve Boothby O'Neill - articles about her life, death and inquest

    Regulatory concerns and concerns recommended for closure While registered as a social worker and employed by Devon County Council; Regulatory Concern 3 You did not exercise adequate management oversight of Adult A’s case in that: i. You did not hold regular supervision with the allocated...
  4. M

    Maeve Boothby O'Neill - articles about her life, death and inquest

    Brief summary of Juliet |Hill's case: Her management oversight of a member of her team dealing with a vulnerable adult was lacking. Were there enough regular meetings? Informal or formal? What records of these meetings with proporsed actions were there. From the final case examiner decision...
  5. M

    Maeve Boothby O'Neill - articles about her life, death and inquest

    I spoke with both Bob's sisters and his Mum, following the funeral and we exchanged a few emails. I was keen to share what he had gone through with the DHSC and sent a couple of emails to Vicky to ask if they would like to send in an outline of what he had gone through. I did not hear back, but...
  6. M

    Preventing medication nonadherence: a framework for interventions to support early engagement with treatment 2024 , Chapman, Chalder et al

    For many people the cost of a prescription puts them off. Also those living on very low incomes may not have the money to buy a 3 or 12 month prepayment certificate (PPC). These save money if you need regular prescriptions: "There are 2 PPC options: a 3-month PPC costs £32.05 and will save you...
  7. M

    Trial design for drug trials for ME/CFS - discussion thread

    I tyhink David Strain isn interested in Ampligen
  8. M

    A quest to manage CYP with ME/CFS and [LC] under one MDT service – evaluation of a regional centre for CYP ME/CFS and [LC] services, Anbu et al, 2024

    I have heard that the Liverpool CYP service is pretty much BPS. There were only 5 responses from there in the MEAction UK report for NICE gdl development. https://www.meaction.net/wp-content/uploads/2019/10/Your-experience-of-ME-services-Survey-report-by-MEAction-UK.pdf P52 one response...
  9. M

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

    Also on their Facebook page. (21 hrs ago at 11am) ETA: Link on here goes to survey
  10. M

    The UK Covid Inquiry - 2023 onward

    The S4ME Committee have now signed this letter.
  11. M

    ME Association funds development of new protocol for Dysautomnia

    His comments in a letter to the BMJ in 2020 on the LC NICE GDL include some good comments: "The guidance mentions screening blood tests (such as full blood count; clotting profile; renal, liver, and thyroid functions; and C reactive protein) and tests of both cardiac and lung function to capture...
  12. M

    Esther Crawley

    I've asked on a parents' site if anyone has seen Crawley recently, linking to the acknowledgement in the BMJ paper. Was shocked, but not terribly surprised that currently, several families are having their youngsters diagnosed as FND!!!
  13. M

    Esther Crawley

    Yes and the leaflets that are linked on the clinic website, #204 seem to be unchanged
  14. M

    UK: University College London hospitals (NHS)

    @Old Monkey are you on the Facebook Group: Parents of children with ME/CFS support Group? https://www.facebook.com/groups/295809457153118 There are many stories on there re UCLH, Bath and others. TYMES also has a great deal of experience of defending children from being pushed to do more...
  15. M

    UK: University College London hospitals (NHS)

    I have heard of families being threatened with social serices if they don't do xyz. One example was a teen spending too much time on their phone! Back in 2011, when we were at GOSH, which moved to or combined with UCLH, Anna Gregorowski, told us that screen time should not be more than an hour...
  16. M

    Esther Crawley

    Let's hope she's not one of those doctors who needs to retire at 60 for pension purposes, then after a certain period, pops up again, eg in private practice.
  17. M

    Esther Crawley

    Wow, this could be Brilliant news, hopefully she has retired from any medical interaction with children. The Bath Clinic she runs/?used to run, now makes no mention of her, still the same old info and leaflets...
  18. M

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

    If much of ST's work has been with strokes, i presume the average age would be higher. There may also be some problems with using some if paralysed on one side.
  19. M

    Webinar 4th June 2024: Royal College of Physicians Edinburgh RCPE: ME/CFS and Long COVID

    Have been able to register, with my area of interest being medical education. I can access the webinar for £20. I'd certainly be interested in Danny Altmann's latest research. Am very familiar with Dr Gall and his work on POTS/orthostatic intolerance. Probably not much else is new or can't be...
  20. M

    Webinar 4th June 2024: Royal College of Physicians Edinburgh RCPE: ME/CFS and Long COVID

    I wonder if recordings will be available afterwards @PhysiosforME
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