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  1. Binkie4

    Petition: Remove CBT/GET from NICE guidelines NOW (ALL COUNTRIES can sign)

    Errrm........All I have done was post the GET petition on their fb page. What am I missing? What might they have joined? Along with @Gary Burgess? @Barry. Am very perplexed.
  2. Binkie4

    Petition: Remove CBT/GET from NICE guidelines NOW (ALL COUNTRIES can sign)

    @Sly Saint Re: nothing from Action for ME I posted the GET petition on their fb page this afternoon. How long it remains- who knows?
  3. Binkie4

    Sir Vince Cable has signed up to Dr. Myhill’s MAIMES Campaign

    I noted in the debate that Nicky Morgan asked the Minister a question about having a full debate to which she seemed to respond very positively. Then did some Wikiing and found that the Minister ( Caroline Dineage) had been Parl Private Secretary to Nicky Morgan when the latter was in the...
  4. Binkie4

    Sir Vince Cable has signed up to Dr. Myhill’s MAIMES Campaign

    I am hoping that a group of MPs will form and work to support Carol Monaghan's request for a debate in the full House. I have asked my MP (also Libdem) to do this. He has signed the petition. The more supportive MPs the better. Several MPs tweeted support on the day of the debate including...
  5. Binkie4

    Petition: Remove CBT/GET from NICE guidelines NOW (ALL COUNTRIES can sign)

    Numbers are a bit stagnant. Have just posted it to a local group. Can we do any more? Would hate Nice to think they can get away with leaving it till 2020, or even leaving it on an ongoing basis. That decision hasn't been made. How much publicity is this getting? My impression is that I see Dr...
  6. Binkie4

    How to follow up on the Carol Monaghan debate in Westminster

    Pleased to hear she will fight GET and CBT remaining in the guidelines. Has she signed the petition? It's an action that can be taken now. EDIT: have written to thank my MP for support including signing petition and asking him to work with Carol and other MPs to obtain a full Commons debate.
  7. Binkie4

    Petition: Remove CBT/GET from NICE guidelines NOW (ALL COUNTRIES can sign)

    My MP has written today that he has signed the petition.
  8. Binkie4

    May 12th/ME Awareness Month - suggest how S4ME might get involved.

    Am very glad @Liv aka Mrs Sowester that you have had such a supportive response from your choir and friends. We love Cornwall but the journey there is so long. If my heart op works and my antivirals have really kicked in, well....let's see.
  9. Binkie4

    " Archers fans in tears over sepsis death storyline"

    A 37 year old woman with young children, but I ........you beat me to it @Trish.
  10. Binkie4

    " Archers fans in tears over sepsis death storyline"

    https://en.m.wikipedia.org/wiki/The_Archers Doesn't sound like Archer but they both seem very popular with big fan base!
  11. Binkie4

    " Archers fans in tears over sepsis death storyline"

    Just read article by Nicola Harley with above title in Sunday Times today, 25th Feb 2018. Gives a short outline of the condition, comment from the Sepsis Trust, and interviews with listeners who had to pull off the road in their cars because they were so distressed while listening. It's a...
  12. Binkie4

    Petition: Remove CBT/GET from NICE guidelines NOW (ALL COUNTRIES can sign)

    Same here. I think that's what has been putting me off. But it might be becoming a necessity in this line of work!
  13. Binkie4

    Petition: Remove CBT/GET from NICE guidelines NOW (ALL COUNTRIES can sign)

    Great idea. Sorry, don't tweet but am considering it after last few days. I want to know the MPs who have tweeted support to send their names on to my MP in the hope that a group will form to push things on.
  14. Binkie4

    How to follow up on the Carol Monaghan debate in Westminster

    Thanks @MeSci. I will link my letter to my MP to the above so that he can gauge possible interest there.
  15. Binkie4

    How to follow up on the Carol Monaghan debate in Westminster

    Apologies before I start. Am in a full flare. Sasha's question was asked in the context of @Indigophoton's statement that we need to push for a full debate. I shall be taking this to my MP. Have written him a holding email ( couple of sentences) today saying that I think the debate gave us a...
  16. Binkie4

    Tues 20 Feb | UK parliamentary debate: PACE trial and its effect on people with ME - Carol Monaghan, MP

    Thank you Russell. Now watched but I found the format difficult when trying to identify points that would be useful to take forward. Some were obvious ( Nicky Morgan) but others will need further review, having got lost in the shuffling. My brain fog is particularly bad. I think Carol Monaghan...
  17. Binkie4

    Tues 20 Feb | UK parliamentary debate: PACE trial and its effect on people with ME - Carol Monaghan, MP

    Is there a recording of the debate anywhere? Very disappointed to miss it but my worsening sleep schedule put me to sleep at 10 to 7 this morning, and it was over when I woke. Your reports sound good......I could do with some good news.
  18. Binkie4

    UK: Short, simple letter to your MP to ask them to attend the Carol Monaghan PACE debate on 20 Feb

    Can you get him to commit to writing to Jeremy Hunt about issues you choose to highlight after tomorrow's debate? My MP has suggested I read the debate in Hansard and write to him to pick up any issues I think need taking further or challenging.
  19. Binkie4

    Tues 20 Feb | UK parliamentary debate: PACE trial and its effect on people with ME - Carol Monaghan, MP

    I saw a letter from Jeremy Hunt in response to a letter sent to him saying he would be unable to attend due to diary commitments.
  20. Binkie4

    UK: Short, simple letter to your MP to ask them to attend the Carol Monaghan PACE debate on 20 Feb

    Have written to my MP who is unable to attend. He is sympathetic however and has advised me to follow up with him depending on what comes out of the debate which I will do. Good advice on how to use the Parliamentary process to address issues that were not raised, reinforce any positives that...
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