Valerie Eliot Smith blog (6th Sept) - 'stepping back'

B

bobbler

Senior Member (Voting Rights)
https://valerieeliotsmith.com/2022/...sLf08tVaZ3zzOXcbm3NYOwTR8bI1UvQjk5sWp8fWkMreU

I couldn't spot or haven't noticed this being mentioned since 6th Sept - please do point me to the right place and delete if I've somehow missed it if it has been discussed

This blog seems to around the last para say that Valerie is stepping back - maybe stopping her work -? (I haven't been sharp enough to be specific on the detail there):

"At this point, I have reached the inevitable conclusion that my efforts are of minimal value in bringing forward positive change for the ME community therefore the personal costs of continuing my work can no longer be justified."

Last section:

"Somewhere towards the end…..

I will leave the blog here as a resource for as long as it retains any practical use or relevance to the work of ME advocates worldwide. However, without wider recognition, support and institutional engagement, the personal cost of continuing my work on behalf of the patient community is no longer sustainable.

The sole purpose of my work has been to facilitate meaningful change at scale for the ME community. That purpose has been on life support for some time.

At this point, in September 2022, my work is approaching “somewhere towards the end”.

As generations of advocates before me have learned, enough is enough. It’s time to step back.

Thank you to the many people who have assisted and supported me in my work, in particular, my husband, Robin Callender Smith and Robert Courtney, ME patient-advocate who died prematurely in 2018.

Thank you for reading this blog."
 
Thank you @Valerie Eliot Smith for your always thoughtful blog and your work behind the scenes helping with ME advocacy.

I haven't always agreed with everything you have said, but I am still glad you said it. We need people willing to put different perspectives and shouldn't be afraid of open discussion of where we agree and disagree in order to help us all understand the complexities and to consider our options and possible ways forward.

I too wish we had a really strong and effective media and advocacy body in the UK registered as a charity and answerable to a strong well informed set of trustees that could cut through once and for all the ongoing media and medical misinformation about ME and provide justice for us all. I am at a loss to know how that can be progressed.

I know there are well meaning and hard working advocates within and outside ME organisations doing their best, some achieving notable successes in particular aspects. It's hard to ask for sea change without criticising the efforts of some very dedicated people who have in many cases put their own health at risk by working on our behalf.

As someone who has spent the last 5 years daily working to support the smooth running of this forum, and now wondering how much longer my health will allow me to continue, and whether the effort has been worthwhile, given the flack we get from some people who themselves have quite prominent voices in ME advocacy for daring to allow open discussion and critique of their work, I have some fellow feeling.

It can be an uphill and sometimes thankless task trying to do our best for pwME. I think part of the answer is that there is not really any such thing as the ME community. We are just many thousands of sick people struggling to cope with difficult lives and with few of us with anything left for advocacy work, and ground down by medical gaslighting and lack of wider community support.

Thank you for your work. I wish you well for the future.
 
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Thank you, @Trish and @MeSci for your kind comments. I very much appreciate what you have both said.

I am stepping back for the reasons I explained in my post and in the linked document. I am also going to be moving home (again) over the next six months and I need to be able to focus on that and maintain enough energy to get through the whole process. However, I am not planning to disappear completely, just adjusting my priorities for the foreseeable future, as well as taking some time to regroup.

I will check in from time to time as I need to keep monitoring ME-related events for my own interest. This forum, thanks to the brilliant work of all its staff members, is always one of the best places to come for information and discussion. Thank you to everyone who contributes to both.

Best wishes to everyone.
 
Peter Trewhitt said:
I would also like to thank @Valerie Eliot Smith for her valuable advocacy work.

She does not shy away from challenging topics and like @Trish, though I have not agreed with everything she concluded, I can not but acknowledge that she has raised very important issues in a timely fashion and that all she says deserves most serious consideration.
Click to expand...
this.
sorry only up to quoting atm
 
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