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PAUSE-REVIEW-REFLECT: towards a bigger picture?

January 16, 2017
Still looking for the RESET button...

January 2017 – looking for the RESET button…

One month on, I rewrote this post to clarify certain points. The revised version can now be seen as the next post on this blog. The main changes are in the paragraph towards the end entitled “Lessons?“.

The new version can be viewed at PAUSE-REVIEW-REFLECT: towards a bigger picture? [revised version]

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16 Comments leave one →
  1. January 16, 2017 10:23

    Reblogged this on Short Blogs for the Distracted……… and commented:
    Clear and concise.. thank you Valerie for helping so much … rest and enjoy x

    Like

  2. Veronica Jones permalink
    January 16, 2017 11:15

    Thanks for all the very hard and fruitful work – good luck with the move!

    Like

  3. January 16, 2017 11:21

    Reblogged this on Utting-Wolff Spouts.

    Like

  4. Barbara McMullen permalink
    January 16, 2017 22:03

    I completely understand why you are focussing on your move; it’s important to protect your health. As someone who has ME/CFS, I was disturbed to hear about the attitude you have come across in the ME community. Are you able to be more specific about the types of advice that have been ignored or disliked? I have found your blog to be cogent and have valued it enormously. Thank-you for writing it. You’ll be missed.

    Like

    • January 17, 2017 09:18

      Thank you for your comment and your kind remarks, Barbara.

      I think it would be unfair to quote specific examples in this context. However, I think this problem is one which many advocates will be familiar with. And, of course, it’s not just an issue within the ME community but is a much wider phenomenon generally.

      The ME community is particularly vulnerable because of its appalling treatment over so many years. This makes the internal fractures of even greater concern as it holds back the progress we so urgently need.

      Liked by 1 person

  5. January 17, 2017 09:28

    Don’t underestimate the value of your contribution Valerie. Whilst there are definitely some annoyingly noisy cliques within the ME ranks, there are also plenty of quiet and open-minded ones. I for one, have taken encouragement from your blog and am consequently plugging away in the background with my own advocacy efforts. I’m sure there are many others like me. Not the high profile media blitz that we would all ideally like, but nevertheless, chipping away at the problem bit by bit.
    Like you, we all yearn for the treatment breakthrough, but the research is definitely gaining momentum and it’s heartening that we now have the tools to defeat the psychobabblers, who’s actions appear increasingly desperate.
    Good luck with your move. I hope that it brings you better health and happiness.

    Liked by 2 people

    • January 17, 2017 10:55

      Thank you for your comment and good wishes, Paul.

      For the most part, I agree with you. However, I still maintain that we need that bigger picture. The ME community is up against something far greater than any previous patient group and has been since the 1980’s. That is why we need (and have done for decades) a far-reaching media strategy managed via a broad consensus, both to respond to the shabby stories which we still have to endure AND to set a completely new narrative about the illness. This is particularly the case in the UK.

      Hopefully I’m wrong and things will move forward very soon.

      Best wishes.

      Liked by 3 people

  6. a aa permalink
    January 17, 2017 13:20

    Good luck with the move. Considering the same myself. You know soFIa mirza file is open for permission to use in legal trial. Her mother has always wanted that. But was unable to secure legal help. Good luck with yr move. It’s not easy I’m not in relationship and have traveled before. It takes careful planning. Kind regards Julia

    Like

  7. January 17, 2017 14:33

    Thanks for all your good, careful, work, over the years, Valerie. You’ve certainly provided me with some useful leads while doing my bit to try and get things moving in the right direction. Sometimes there is an opportunity to put just the right bit of info in front of the right person, at the right time. Identifying the person and the time, can’t be done through meetings, committees, or cliques, but chances do arise.

    All the best for your move. I had visions of doing that myself once, but, I guess I’m stuck now. I will keep plugging, while I can still move my thumbs and hold the phone! xx

    Liked by 1 person

  8. Jane permalink
    January 21, 2017 08:32

    Thank you so much Valerie. I have found your articles inspirational and opened my eyes to a lot of issues over the last couple of years since discovering your website. I for one do value the input of experts in the field to keep the correct focus on what is important etc – and you make excellent points in the above post. A very big Thank You for your wonderful work and very best wishes for your move 🙂

    Like

  9. admindxrw permalink
    January 23, 2017 08:59

    Will miss your calm, considered and careful work, Valerie. All the best for your move, Suzy (Dx Revision Watch)

    Like

Trackbacks

  1. Pause-Review-Reflect: Towards A Bigger Picture ? – The York ME Community

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