PAUSE-REVIEW-REFLECT: towards a bigger picture?
January 16, 2017
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
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valerieeliotsmith 
Reblogged this on Short Blogs for the Distracted……… and commented:
Clear and concise.. thank you Valerie for helping so much … rest and enjoy x
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Thanks for all the very hard and fruitful work – good luck with the move!
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Reblogged this on Utting-Wolff Spouts.
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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.
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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.
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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.
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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.
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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
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Thank you for your comment and good wishes, Julia.
Best wishes to you too.
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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
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Thank you for the good wishes, Steve. Wishing you all the best too.
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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 🙂
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Thank you, Jane. I really appreciate your comments and wish you all the best.
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Will miss your calm, considered and careful work, Valerie. All the best for your move, Suzy (Dx Revision Watch)
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Thank you very much, Suzy. Many thanks to you too and best wishes to you and your family.
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