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#my2016MEawards: Acknowledge people and groups in the ME community you are grateful for

Esther12

Esther12

Senior Member
Messages
13,774
Invisible Woman said:
I would like to nominate @charles shepherd .

Year after year, he still chips away at the bricks of "establishment". Progress may be slow but he has been at the coal face for longer than I have been ill, working away despite being ill himself.

On top of the work that we see him do here he is very active with the MEA. Not just with overall policy and publications but directly with members. He has found time over the years to contact me on a couple of occasions when I needed medical advice and had gotten in touch with the MEA.

He does a lot of hard work and puts up with a lot of grief on our behalf.
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Yes. I've found myself disagreeing with @charles shepherd a bit more than usual recently, but am still very grateful for all his work and keen to listen to his views on things.

PS - hugely grateful to all the nominees so far... great picks! I don't want commenting on just a couple to imply otherwise!
 
Jo Best

Jo Best

Senior Member
Messages
1,032
Tom Kindlon said:
https://twitter.com/i/web/status/813500970214821889
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Thank you Tom, so thoughtful of others as ever, and I nominate you for your unrelenting advocacy.

The Let's Do It for ME campaign was launched by people with severe ME in 2011 to show support for the proposal by UK charity Invest in ME (now also registered as Invest in ME Research) to establish a UK Centre of Excellence for ME and to raise funds to enable the research to get underway, knowing the history of government funding (or lack thereof) for biomedical ME research). The idea for the campaign was inspired by this April 2011 article - http://www.edp24.co.uk/news/better_care_for_me_is_a_step_closer_in_norfolk_1_875919

The focus of the IiMER translational biomedical research strategy is infection and the immune system, so the starting point was the gut. The initial fundraising target was £100k to fully fund the 3-year foundation study on the role of leaky gut, which began October 2013. Fundraising has been ongoing for further phases of that work.

Then 6th June 2013, IiMER announced they were in discussions with researchers to plan a UK clinical trial of rituxumab (to be preceded by a B-cell study) and fundraising enabled that too to begin without delay in 2014.

I too, would like to salute everyone involved, too many to name, and most are too ill to be online and unlikely to see this thread. That's why your nomination is especially kind Tom, and why we can't thank enough willing wellies like Mike Harley for outstanding efforts to ensure the success of the IiMER Centre of Excellence projects.
 
Jo Best

Jo Best

Senior Member
Messages
1,032
In their 10th year as a charity, I'd also like to nominate Invest in ME Research (trustees and advisory board) for exemplary team-work, vision, courage, and sheer determination to change the landscape of ME research and treatment, in UK, Europe (founding members of the European ME Alliance) and globally.

They quote as representing the ethos of their international Biomedical Research Colloquiums and Conferences -

"Vision without action is merely a dream.
Action without vision just passes the time.
Vision with action can change the world."

Happy New Year one and all.
 
Demepivo

Demepivo

Dolores Abernathy
Messages
411
We don't want this to become a backslapping love in. Do we?) :D So to widen things out a bit, some people off the top of my head

All the people who have kept me company on the last year especially on the bad days, sharing laughter with a love of violent TV (the Walking Dead, Westworld).

Had pleasure of meeting some of them via MEAction & #millionsmissing. (C'mon folks where are Jen Brea et al?)

Special mentions to the delightful Julia Newton, who talked me to for some time and told me exactly what she thought of certain individuals, everybody at ME Research UK, the Solve ME/CFS Initiative etc etc

Also it would be rather odd if @Cort (Johnson) didn't get several mentions. Wouldn't it?
 
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Esther12

Esther12

Senior Member
Messages
13,774
Understandably, I think that there's a bit of a less celebratory vibe this year. Last year, maybe we were fooling ourselves about the extent to which those in positions of power would care about the truth, once Tuller et al had led the way in showing our concerns about PACE were justified.

We've made a lot of further progress since then, and thanks a lot to all of the many people who have contributed to this, but the fightback has been more committed than expected, especially considering how rubbish their response are. I really thought that either 1) they'd come up with some worthwhile points we hadn't thought of or 2) they'd have to admit they were wrong pretty quickly. There is something a bit depressing about the fact that we're struggling to overcome such appallingly weak arguments.

It looks like the fight against Crawley is going to go on for another decade!

PS: Or maybe it's just me... I've had a cold that just won't shift for far too long, and that doesn't help.
 
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trishrhymes

trishrhymes

Senior Member
Messages
2,158
I'd like to nominate everyone on PR. I only found and joined PR a few months ago after decades of illness. I wish I'd found you all sooner. Thank you for your wonderful support, advice and the humour that keeps me going in the face of a disbelieving world.

I'd also like to nominate every ME sufferer in the world for their courage in getting on with life as best they can in the face of medical negligence and malpractice in so many places.

I'd also like to nominate all the carers and friends and family members who believe and support us.

I'd also like to nominate everyone who, in their quiet way, keeps plugging away at trying to raise awareness by writing letters and articles, even just by sharing tweets - every little helps.

And finally I'd like to nominate all those who have tried to contribute to progress in many ways but been thwarted so far. All those articles written but rejected, all those letters ignored, all those pleas to doctors not listened to, all those actions started but not completed because of overwhelming symptoms. I salute the fact that you tried. I salute the fact that you wanted so much to do more.

You're all heroes in my eyes.

Happy New Year.
 
D

Dolphin

Senior Member
Messages
17,567
Thanks to everyone who donates to and/or fund-raises for the ME/CFS cause in some way.

Money is very important in many situations.

One in particular is research funding. We don't just want research progress, we want it sooner rather than later. I really don't think it is a good strategy just to lobby for research. Outside the US, research budgets tend to be relatively small. I think a lot of people think that because there is universal healthcare then similarly governments are responsible for doing the necessary research. However there are hundreds of major illnesses and thousands of rarer ones and research budgets (outside the US) are relatively small compared to total health spending. Government-funded research (outside the US) on average will only make slow progress. Also researchers often need to collect pilot data to be able to apply for grants which is one reason private money is so important. Also some government funding will sometimes go to research that is not that exciting e.g. CBT research, while privately-funded research tends to be less problematic.

Some research funds have been collated here:
http://phoenixrising.me/resources-2/research-charities

If lots of people chip in by fundraising and/or donating we have great potential to raise serious money. Thanks again to all who have donated and/or fund-raised.
 
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SB_1108

SB_1108

Senior Member
Messages
315
I would like to nominate Terri Wilder. Terri is an activist, HIV/AIDS advocate and social worker who has worked in HIV patient services for over twenty years. Terri was recently diagnosed with ME/CFS and has begun using her experience in HIV/AIDS advocacy to help MEAction with their patient activism efforts. See Terri's CFSAC public comments here: http://occupyme.net/2016/05/18/cfsac-comments-terri-wilder/

Terri played a pivotal role in #MillionsMissing as she helped plan and emcee both the May and September protests. She recruited seven allies from ACT UP New York and the Treatment Action Group (TAG) to attend (and speak at) the New York City demonstration in September.

She also attended two major meetings with the US Acting Assistant Secretary of Health and Human Services, Karen Desalvo: http://www.meaction.net/2016/07/28/millionsmissingto-meet-with-desalvo/

Terri initiated the recent campaign to push NIH to release the RFAs this month: http://www.meaction.net/2016/12/21/...t-miss-your-deadline-release-the-me-foas-now/

Although Terri is new to ME/CFS, the amount she has been able to achieve in such a short time frame is astonishing! The ME/CFS community is incredibly lucky to have her knowledge and support! :trophy:
 
ClarkEllis

ClarkEllis

Messages
55
rosieness said:
I’d like to nominate @ClarkEllis for his initiative earlier this year that united all but one (AYME) of the UK ME/CFS charities in the call for the PACE trial data to be released, with many charities from around the world also joining the call. A huge achievement.
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Thank you Rosie.

I'd like to thank all those who do a great deal in the background, without recognition and without people even knowing they are working hard to change things. There are lots of people like this in the ME world, some I know about and no doubt many that I know nothing about, but all working to make things better for us all.

p.s. happy new year to everyone. I hope this is our year!:balloons:
 
P

packhorse5

Messages
3
If it's not too late I'd like to support those already nominated including Tom Kindlon, Alem Mathees, David Tuller, Dr Charles Shepherd and many more, and also Graham McPhee of ME Analysis fame (has Graham been mentioned? He should be!). And on the 'outside' of ME, James LeFanu, the Telegraph doctor.
At a local level, may I also nominate Katharine Cheston who organised the highly succesful #MillionsMissing Bristol Demo in September. Katharine and her brother Huw, organised the whole thing themselves and generated considerable media interest. This included an interview on BBC Radio Bristol with John Darvall and an excellent double spread piece in the Bristol Post:
http://www.bristolpost.co.uk/100-pa...-city-centre/story-29755005-detail/story.html
 
Mike Harley

Mike Harley

Messages
51
Location
Bristol
packhorse5 said:
If it's not too late I'd like to support those already nominated including Tom Kindlon, Alem Mathees, David Tuller, Dr Charles Shepherd and many more, and also Graham McPhee of ME Analysis fame (has Graham been mentioned? He should be!). And on the 'outside' of ME, James LeFanu, the Telegraph doctor.
At a local level, may I also nominate Katharine Cheston who organised the highly succesful #MillionsMissing Bristol Demo in September. Katharine and her brother Huw, organised the whole thing themselves and generated considerable media interest. This included an interview on BBC Radio Bristol with John Darvall and an excellent double spread piece in the Bristol Post:
http://www.bristolpost.co.uk/100-pa...-city-centre/story-29755005-detail/story.html
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I was at the Bristol demo and fully agree, Katharine, Huw and her family did an amazing job under a lot of pressure.
 
Jo Best

Jo Best

Senior Member
Messages
1,032
I also hope this is not too late but another post has just reminded me that I'd like to nominate @Keith Geraghty for his courage in speaking truth to power about his experience of asking for data from the PACE trial; and as a member of the UK CFS/ME Research Collaborative. I think this is brave as he is a young UK researcher with a career to risk. His comments on the PR Opposing MEGA thread were collated here in November - https://opposingmega.wordpress.com/2016/11/19/dr-keith-geraghty-comments-on-opposing-mega/
 
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