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What a year! Who do you want to thank? The Unofficial 2015 ME/CFS patient awards for...

ahimsa

ahimsa_pdx on twitter
Messages
1,921
@Esther12 - "Most Horrifying Forum: Phoenix Rising"

Yes, it is fascinating to be part of a group that is so frightening to small subset of researchers and bureaucrats.

I mean, it's laughable. This forum has moderators (wonderful folks! they have the patience of a saint!) who edit out even swear words, not to mention any personal attacks on others.

And yet, this group of folks, a bunch of either partly or fully disabled people, many of whom spend most of the day in a recliner or a bed, is somehow seen as a threat to them? I don't think so.
 

Graham

Senior Moment
Messages
5,188
Location
Sussex, UK
Thanks Leela, but I think Annie Gsampel needs an award of her own, for bravely submitting her results up to public scrutiny, knowing she will be harrassed by vexatious members of a most horrifying forum (well, once they find enough energy to respond).
 

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
The 2015 Sisyphus award for endless chores goes to @charles shepherd, not because he's done anything special this year, but because he's done exactly the same thing he does every year

Think Charles had a good year, including a successful complaint against a hugely misleading headline and article by the Daily Telegraph (who agreed a correction was in order) and his article in the Telegraph which he wrote at their invitation. I thought it was a great piece for convincing a general audience, esp an older one (DT readers), starting with the Royal Free outbreak and moving forward, including his experience as an initially-sceptical GP who got ME himself.

Daily Telegraph: It’s time for doctors to apologise to their ME patients (Charles Shepherd) |

@charles shepherd
 

Tom Kindlon

Senior Member
Messages
1,734
I nominate Tate Mitchell as "Best Co-Cure poster" in 2015.

Co-Cure has been going for twenty years now. For many years, it was arguably the best place to keep up to date with ME/CFS news (it's not a discussion list).
Unfortunately, not as many messages are posted these days. But Tate continues to post lots of interesting ME/CFS news from around the internet.

To subscribe, send
Subscribe Co-Cure
to
listserv@listserv.nodak.edu

or you can read the archives at:
https://listserv.nodak.edu/archives/co-cure.html
 

Tom Kindlon

Senior Member
Messages
1,734
Best set of responses to PACE Trial papers in 2015 in the medical literature: Responses to the PACE Trial mediation paper (Chalder et al., 2015)

Published letters in Lancet Psychiatry:

There were also 28 rapid responses on the BMJ site:
http://www.bmj.com/content/350/bmj.h227/rapid-responses
by
Catherine J. Ashenfelter; Sheila Campbell; Sonya Chowdhury; Robert Courtney; Greg P Crowhurst; Heath Davies; Jonathan CW Edwards; Derek Enlander; Nasim Marie Jafry; Tom P Kindlon*; Ian McIlroy; Alem Matthees; Robert Morley; Stephen Powell;Stephen Edward Ralph; Charles Bernard Shepherd; Anna K Sheridan; William RC Weir; Margaret Williams; Carolyn E Wilshire; N A Wright

*Hopefully this won't lead to a disqualification!


 

Tom Kindlon

Senior Member
Messages
1,734
Worst headline of the year/decade/century (?) award: Daily Telegraph (front page)
Chronic Fatigue Syndrome is not actually a chronic illness and sufferers can overcome symptoms by increasing exercise and thinking positively, Oxford University has found.

This for a null study, the PACE Trial long-term follow-up study, which found that the CBT and graded exercise therapy arms of the trial didn't the other two arms of the trial!

Honourable mention:
All those who supplied the journalist with information e.g. the PACE Trial team who spun the results in the press release and one presumes also at the press conference, the Science Media Centre who organised the press conference and are supposed to supply journalists with good quality info, etc.

[Sorry to be a bit negative].
 
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Aurator

Senior Member
Messages
625
[Sorry to be a bit negative].
No apology needed; there's a shedload of awards crying out for recipients.

The Phoenix Rising award for Distorting the Truth in the most flagrant and unctuously self-congratulatory way goes to whoever wrote the Lancet editorial that said "PACE paved the way for the IOM report".

Maybe we need a separate thread.
 
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Messages
15,786
The 2015 award for Best Chili ME Fundraising has to go to Mady Hornig and Ian Lipkin and their team. Not only did they produce an awesome Holywood-quality video trailer for the event, they ingested an impressive variety of hot chilis to raise the funds needed to get their ME research underway.

They have demonstrated incredible dedication to us and to their research, and I don't think we can ever thank them enough for believing in us.
 

K22

Messages
92
I would like to nominate as Outstanding advocate for the severely ill Ron Davis. He's achieved some of the best US press coverage I've seen highlighting the seriousness of the illness, promoting his scientific endeavours, fundraising & higlighting NIH neglect. His charity has a large, first of its kind, fully funded, in depth severe ME study under way; he's has been involved in putting pressure on the NIH; his whole family have been so brave in revealing their & Whitneys private struggle so people learn of what is usually hidden & on top of that he served on the IOM committee & he's helped to challenge the Uk PACE trial! An outstanding contribution from one man to the change we are seeing.