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  1. Binkie4

    Henrick Vogt: "intense negativity spread by individuals/CFS groups/researchers" partly to blame for family's suicide

    Thanks @JohnTheJack . I am usually in safari but when I moved to chrome, I was offered a translation. It is a very, very sad story.
  2. Binkie4

    Henrick Vogt: "intense negativity spread by individuals/CFS groups/researchers" partly to blame for family's suicide

    Do not seem to have an English translation? ETA: am worse brain fogged than ever. What am I missing?
  3. Binkie4

    NZ Herald running a series on EDS

    So sorry you experienced this @DigitalDrifter, and that you had a permanent worsening of your level.
  4. Binkie4

    ME charity income versus other illness charities in the UK

    This irks me too @Sunshine3. It also makes me more determined to post about ME on my personal fb page, and I do. Not that I get many likes. But I keep doing it despite this. I ought to look harder at those posts that get an occasional like and replicate those. But for me, I think it’s more that...
  5. Binkie4

    Genome-epigenome interactions associated with ME/CFS, 2018, McGowan et al.

    https://www.tandfonline.com/doi/full/10.1080/15592294.2018.1549769?scroll=top&needAccess=true Abstract published. Article behind a paywall. Research financed by Solve ME/cfs.
  6. Binkie4

    Wesselys Mental Health review could also replace Mental Capacity Act

    I found it a great shock to hear this said in the middle of (mostly) discussions about Brexit which like Nellie Pledge I have been watching intently. It really does feel that he gets everywhere. Terrifying question. Might he have political ambitions? Please delete that if you think it might...
  7. Binkie4

    Wesselys Mental Health review could also replace Mental Capacity Act

    Live TV- BBC news channel, 107 here. ETA: about 12.35/40.
  8. Binkie4

    Wesselys Mental Health review could also replace Mental Capacity Act

    Merged thread Original title: Prof Sir Simon Wessely was thanked by MP today, and thanks were repeated by Teresa May! Presumably this will be in Hansard tomorrow. So he even gets in the middle of Brexit. ETA: comment was not about Brexit but the Mental Health Act
  9. Binkie4

    Erythrocyte Deformability As a Potential Biomarker for Chronic Fatigue Syndrome, Davis et al (2018)

    Can I add another blood condition which creates more likelihood of clots? https://en.m.wikipedia.org/wiki/Factor_V_Leiden I have it but I don’t know if there is any link with ME. There are no noticeable daily symptoms, but it is genetic and can throw severe clots. I have seen a couple of...
  10. Binkie4

    30th Nov: Cochrane 'have not approved publication of the [Larun] re‐submission' - but old version not withdrawn either.

    MP Sir Edward Davey brought up this point in the June Westminster Hall Debate, not specifically focussed on Cochrane, more on Nice.
  11. Binkie4

    Low-dose Naltrexone articles and experiences

    Many thanks @andypants.
  12. Binkie4

    Caroline Struthers' correspondence and blog on the Cochrane Review: 'Exercise therapy for chronic fatigue syndrome, 2017 and 2019, Larun et al.

    I find it hard to believe that Tovey could retain any credibility at all if he walked back from his statement to Reuters. Point 12 in Caroline’s complaint. Will try to add the link where this was discussed here. ETA...
  13. Binkie4

    Low-dose Naltrexone articles and experiences

    Thank you @Sbag. I think I’m sorted. Thanks for the helpful info. ETA: will be discussing with doctor to check advisability in my case.
  14. Binkie4

    Low-dose Naltrexone articles and experiences

    @andypants. After a very heavy year, my functioning has deteriorated and, added to new comorbidities needing frequent hospital appointments, I would welcome the chance to retrieve some ground. Are you able to tell me where I can get LDN to U.K., PM is fine? Many thanks.
  15. Binkie4

    2018: Discussion on the NICE procedure: what to expect next?

    Thank you @Michiel Tack for reviewing the process followed in 2007, and reminding us/ revealing what a distorted process that was.
  16. Binkie4

    Reply from Nice

    Just for information- we wrote a 4 page non template response to Sir Andrew, posted on 1st Nov. Not even acknowledged until we emailed a few days ago whereupon we received the standard email from the Communications Unit. We have received focussed responses from Sir Andrew in the past. They are...
  17. Binkie4

    Increasing symptom intensity

    Did you go to a specialist EDS clinic? From what I understand there has been a lot of development in this area in last couple of years, and not everyone is up to date. Apologies if this is an inappropriate suggestion. The EDS fb sites contain info about the well respected diagnosticians. Also a...
  18. Binkie4

    Carol Monaghan has applied for a debate in UK House of Commons main chamber

    It seems to have been announced by Dr Shepherd after a Forward ME meeting. Minutes not yet released. Perhaps @Russell Fleming can confirm.
  19. Binkie4

    Carol Monaghan has applied for a debate in UK House of Commons main chamber

    I came back on just before I sent my last post. Am not opening the freezer.....should be ok. Off for 2-3 hours. The really alarming thing is that the underground substation is right outside one school and opposite another. 10 hours later and the pavement would have been full of children going...
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