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  1. Binkie4

    Dr Myhill’s complaint to GMC about PACE authors.

    Yes. He has another commitment but hopes to be there for part of Carol's debate. We focussed our discussion on that hopefully to some effect. I have an appointment at the Brompton tomorrow, leaving home about 2.30pm. Will this debate be recorded? I will listen to the first hour then leave...
  2. Binkie4

    Dr Myhill’s complaint to GMC about PACE authors.

    @NelliePledge - thank you.
  3. Binkie4

    Dr Myhill’s complaint to GMC about PACE authors.

    @NelliePledge - help -i am brainfogged to the extreme having crossed the Atlantic both ways in the last 2 weeks. Could you say a bit more about the difference between adopters and supporters ( signed in red)? I think I understand supporters but MPs as adopters? I hope to see my MP tomorrow-...
  4. Binkie4

    Correspondence from the DWP for 2005

    Not sure where we stand on being told to do GET in order to convince the powers that be that we have cooperated in trying to recover. I was already retired and in receipt of a pension when I became severe enough to need a diagnosis and treatments so I escaped this fate. When I was milder, I...
  5. Binkie4

    The ME Show

    Just listened to episode 5, @Gary Burgess and @Trish talking. Thank you both so much for expending your precious energy on this. I think it gave a really good view of what it is like to live with ME. I agree with you about the hrm @Trish. Extra steps leads to a crash. I am surprised at how few...
  6. Binkie4

    UK 21 June 2018 | 3-hour ME debate in Westminster Hall, secured by Carol Monaghan

    Just to ask again- does anyone know who will be supporting Carol in the debate? It's 3 hours so there is a lot more time for other MPs to speak. Not sure what the format is. Anyone? She is deputy Chair of Forward for ME now. Is there support for her in the Commons from there? She had taken on a...
  7. Binkie4

    UK 21 June 2018 | 3-hour ME debate in Westminster Hall, secured by Carol Monaghan

    I have been in correspondence with Nicky Morgan and don't think she can be there. She has a royal visit to her constituency that day but "will be there in spirit." Is obviously still supporting the issue. Anyone know who will be supporting Carol in the debate? My MP, Ed Davey, has a Chair...
  8. Binkie4

    UK 21 June 2018 | 3-hour ME debate in Westminster Hall, secured by Carol Monaghan

    I have asked my MP to attend, Ed Davey. He currently has a commitment but may be able to be there for part of the time. Won't know until the day before. He is Libdem and said they would only usually be allocated one person to speak. I don't know if this is set in stone.
  9. Binkie4

    Briefing paper for parliamentary debate.

    i agree with @Esther12 that the words " not psychological" also need to be removed from the offending sentence so that it reads "Recognise that ME is biological in line with growing international consensus" http://www.margaretwilliams.me/2018/highlights-of-prof-anthony-komaroff.pdf Prof...
  10. Binkie4

    Briefing paper for parliamentary debate.

    @NelliePledge's above post is admirably clear. We are at the point where discussion about ME is about to go out into a wider world that has no knowledge of the historical background about disputes. Do we want to cause confusion or give a clear picture? If we aren't conveying a clear message, I...
  11. Binkie4

    Briefing paper for parliamentary debate.

    http://www.margaretwilliams.me/2018/highlights-of-prof-anthony-komaroff.pdf I have literally only just seen this but a quick glance at page 1 is very relevant to this conversation. I am seeing my MP and will find it very hard to explain 'primarily'. Do we know why this was included? EDIT: Prof...
  12. Binkie4

    Briefing paper for parliamentary debate.

    Would it not be easy to remedy this particular issue very simply by just omitting 'primarily' from briefing document, edition 2? Depends on what the writer of this section meant to convey I suppose. I would be happier if the word primarily was omitted.
  13. Binkie4

    Briefing paper for parliamentary debate.

    For MOD attention https://www.s4me.info/threads/uk-tues-5-june-2-30-pm-live-on-parliament-tv-carol-monaghan-to-ask-for-debate-on-me.4435/ This thread and that with the recording of the Parliamentary clip overlap in items discussed but different S4ME members seem to be reading them. I...
  14. Binkie4

    UK Tues 5 June 2:30 pm - live on Parliament TV - Carol Monaghan to ask for debate on ME

    @Gecko I would need to think about your theory but I am going away in 12 hours time! It would be good to understand a bit more about the workings of Parliament; how the Parliamentary process can be used to progress our agenda. I think we need to use that. This is a big story. I am not sure...
  15. Binkie4

    UK Tues 5 June 2:30 pm - live on Parliament TV - Carol Monaghan to ask for debate on ME

    When I wrote to my MP a while ago, he later sent me a copy of a letter he has sent to Jeremy Hunt and Esther McVeigh (DWP)so very glad he is pursuing this two Dept approach. Have not heard if he has had a reply from either. I hope to see him soon.
  16. Binkie4

    UK Tues 5 June 2:30 pm - live on Parliament TV - Carol Monaghan to ask for debate on ME

    Thank you for the link @Gecko .@Andy, and any others. I watched it and have just written to my MP to ask him to use his influence to progress the issue to a full debate. We have already had the WH debate in Feb. I don't know if it's usual to have more than one. Nicky Morgan spoke well again...
  17. Binkie4

    Forward ME Group minutes 1st May 2018

    http://www.forward-me.org.uk/1st May 2018.htm Long agenda with some interesting topics: 1. Carol Monaghan becomes deputy Chair 2. Afme's new advocacy member based in Geneva is introduced 3. An ME patient, Mrs Nina Muirhead was introduced by CS. She is a doctor, a surgeon, did not cover ME in...
  18. Binkie4

    Janet Dafoe - The Whitney Plea

    In so far as the Davis/Dafoe's spiritual life is anything to do with us, and I don't think it is- freedom of belief etc-, I think they follow the Native American Indian Cherokee tradition. If I remember correctly, Ron and Janet led a song from that tradition at the first #MillionsMissing...
  19. Binkie4

    Janet Dafoe - The Whitney Plea

    For me there are two issues 1. Is the Whitney plea. I didn't want to participate in that and didn't. OTOH I don't feel so strongly as others that it's awful. It's an advocacy tool, and not all advocacy tools are wise etc ( I do think #MillionsMissing, #CanyouseeME now? And the shoes are great...
  20. Binkie4

    Merryn Crofts - media and inquest

    Have posted whole article in a new thread. MOD- do we need to combine.
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