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  1. Binkie4

    United Kingdom: Neighbourhood Health Centres

    I'm just aghast at the speed and the duplicity. On 22nd July we were expecting a long promised plan for ME. Yes, neighbourhood centres were mentioned but not expected in the form of the centres in that press release. I see that that was released on the 9th July and the ME delivery plan followed...
  2. Binkie4

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    Mod - apologies. Think this needs its own thread From mods: a thread has been created here and this post copied: United Kingdom: Neighbourhood Health Centres The delivery plan made reference to neighbourhood services. Below is the press release describing these services. It's worth reading the...
  3. Binkie4

    United Kingdom: Neighbourhood Health Centres

    Copied from the forum thread for the UK Government Delivery Plan for ME/CFS The delivery plan made reference to neighbourhood services. Below is the press release describing these services. It's worth reading the whole press release. How unfortunate that we didn't know about this so we could...
  4. Binkie4

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    In the extended piece in the article by the ME patient, there was a reference to "neighbourhood services" by the DHSC and it came up in the delivery plan . Do we know what these neighbourhood services are? I assumed they must have something to do with GPs. Doctors must be involved somewhere and...
  5. Binkie4

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    Just to say @Trish that this is an excellent description of where we are. Cannot even find words any more. So despondent. edit: In my local area, which was previously served by Dr Bansal, we now have paperwork with the Bacme logo all over it and it has a physiotherapist which it didn't when I...
  6. Binkie4

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    David Tuller's interview with Charles Shepherd about the delivery plan. edit: Does Charles sound less positive than in the initial MEA statement?
  7. Binkie4

    United Kingdom: News from #There for ME

    I find that too @bobbler.
  8. Binkie4

    United Kingdom: News from #There for ME

    Thank you @Dolphin for the #There For ME links Excellent news on the hub that women with ME can now get regular cervical screening at home. edit:https://www.pslhub.org/blogs/entry/8645-at-home-cervical-screening-tests-offered-in-england/ How have I missed absorbing information about the hub? I...
  9. Binkie4

    Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al

    There are too many doctors who have an arrogant belief in their own superior intelligence, competence and knowledge. This is especially dangerous in conditions like ME whose biological basis is still under investigation. I too am horrified that Sarah Boothby's response was not posted in the BMJ...
  10. Binkie4

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    ME Research UK response to delivery plan. Lengthy - not yet read., brief skim. Seems thorough. Apologies if it's published elsewhere. Think I have read most of thread. https://www.meresearch.org.uk/delivery-plan-for-me-cfs-published-research-details/
  11. Binkie4

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    ThereForME's statement yesterday. It's not an endorsement rather a tepid acknowledgement of a disappointing delivery plan statement.. I think we should aim to work with groups like #ThereForMe, who present well on the media, have engaged with the Parliamentary process and share their lived...
  12. Binkie4

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    I don't think we are ever going to make real progress until the festering mess that is underneath everything that happens in ME is exploded into the light of day, a cleansing of the Augean stables. Nothing makes sense in ME unless you know about this. Until this happens everything that is done...
  13. Binkie4

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    Is this the whole of the final plan? Policy paper ME/CFS: the final delivery plan The final delivery plan on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), focusing on 3 main areas to improve care and support for those with ME/CFS. From:Department of Health and Social...
  14. Binkie4

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    Press release "Boost in support for patients with chronic fatigue syndrome or ME Better care for patients living with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, with plans to invest in research and offer closer to home." The first sentence of the press release " invest in research and...
  15. Binkie4

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    =AZXkNF4De52QCcukeVOJA8T2MpQ73mJ0q7lA2aKAnTkO9G4KFZZCNikwCLkHa8u1Lqf1p95SvN5RsImDrBssZMjLuHZgBO3cFueLFCCdqNvGIA&__tn__=-UC%2CP-R-R']Action for ME =AZXkNF4De52QCcukeVOJA8T2MpQ73mJ0q7lA2aKAnTkO9G4KFZZCNikwCLkHa8u1Lqf1p95SvN5RsImDrBssZMjLuHZgBO3cFueLFCCdqNvGIA&__tn__=%2CO%2CP-R-R#?aae']53m ·...
  16. Binkie4

    Sarah-Jayne Lewis - Coroner's report (trigger warning)

    Would Sean be interested in following this up in the Times? It follows the concerns expressed at Maeve's inquest. I think Sean expressed a view that the responses to the concerns were not satisfactory. Now we have a second inquest with Coroner concerns expressed. An article in the Times would...
  17. Binkie4

    Sarah-Jayne Lewis - Coroner's report (trigger warning)

    Is this just the second time a Coroner has issued a "Prevention of Future Deaths Report" following the death of a pwme, Maeve Boothby O'Neill's being the first? The Guardian, Oct 2024 "A coroner has urged the UK health secretary, Wes Streeting, to address the “non-existent” care available to...
  18. Binkie4

    Blood pressure monitors and how to use them; taking a blood pressure measurement; continuous monitoring

    My surgery has been using the electronic ones for some time except for one GP not UK trained, Polish I think, who uses a sphygmomanometer. A friend of mine had his atrial fibrillation picked up by this during traditional BP testing which led to a lot of other tests, heart procedure, medication...
  19. Binkie4

    Trial Report Beneficial effects of intermittent intravenous saline infusion in dysautonomic patients with [ME/CFS]: a case series, 2025, Sjogren et al

    I have had a couple of saline infusions on the advice of Dr Bansal and improved hugely for a temporary period. The circumstances were a 3 day hospital admission for cardiac investigations. My local hospital was proposing open heart surgery to replace a leaking valve and I wanted a second...
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