Your Chance to Endorse Tom Kindlon’s Nomination in the WEGO Health Activist Awards

November 18, 2013

Tom Kindlon has been nominated in two categories for his herculean efforts with regard to health activism on the internet and in particular his work in disseminating the reality of the PACE Trial and GET/CBT as ‘effective’ treatments for ME/CFS. By Firestormm.

Tom KindlonThe other day, I happened to notice a link posted on the Phoenix Rising Facebook page to the WEGO Health Activists competition, and saw that Tom had deservedly been nominated in the “Best in Show: Twitter” and the “Health Activist Hero” categories.

Tom has been one of those ever-present characters in my ME-world for as long as I have felt able to get back online, and his painstaking work on the PACE Trial and on those less than satisfactory, Cognitive Behavioral Therapy and “Exercise” studies, has been truly outstanding.

He is a familiar member here on Phoenix Rising, commenting most thoroughly in the research section, and is an avid ‘tweeter’. He achieved wide acclaim when his own paper “Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” was published in 2011.

A prolific letter writer to scientific and medical journals for many years, including the British Medical Journal, his latest letter received a published response from Professor Peter White, the lead author of the PACE Trial, and the resulting debate has now spilled over into “Rapid Responses”.

But Tom is not only involved with revealing the truth about PACE, and the recommended ‘illness management’ therapies. He also works for the Irish ME/CFS Association, in a voluntary position as the Assistant Chairperson, and through Twitter helps to raise awareness of ME in general and by calling attention to and discussing new research.

It is not very often that we get the chance to do more than say “Thanks” to one of our own, to someone who goes that little bit further in taking our concerns so effectively to a wider audience, but by endorsing his nomination in this competition, at least we can for Tom.

And I also think your endorsement will help to raise the profile of our disease among the wider health activist community.

Tom Kindlon’s story in his own words…

I have Myalgic Encephalomyelitis (M.E.)* since February 1989, when I was just 16. I wasn’t diagnosed till autumn 1994 by which time I was severely affected. Although I am not as ill as I was for the first few months, when I was basically bedbound, only able to read and understand cartoons, I remain severely affected 19 years on, only leaving the home for important appointments or to go to our holiday home for the summer.

I blame the late diagnosis, and following advice to exercise, for the severity of my illness as in the early years I was only mildly affected (able to study full-time, once I cut out most extracurricular activities). After being diagnosed for over a year, I realised there was a good chance I was going to be stuck being quite ill and disabled for a long period, possibly indefinitely, a prospect that wasn’t appealing.

Moreover, I realised that there wasn’t a huge effort to research the illness well; it wasn’t on the radar the way many other conditions were.

NominationsI have been busy for the last 18 years working away as a (voluntary) ME activist. Much of what mum and I concentrated on in the early years was raising awareness and understanding in Ireland. Mum did over one hundred TV and radio interviews and I have done a few dozens and been featured in most of the national newspapers in Ireland. We have also helped arrange for around 120 Irish families affected with ME to tell their story over the years. A lot more people are diagnosed here now and attitudes have improved.

In the last decade, my concentration levels have improved a lot and allowed me to read a lot of research papers in the field. I realised a lot of rubbish was going unchallenged and the pool of people who were trying to respond ever was small, so have spent quite a bit of time responding to papers: I’ve had 15 letters published in various medical journals along with over 100 e-letters.

My proudest achievement was the publication of my paper, “Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” at the end of 2011. I had previously been quite academically able but things are more difficult now with M.E. so it took a lot of work and sacrifice over more around 15 months.

I still live at home with my parents who take care of most of the practical stuff, which frees me up to use the energy I have on ME matters. I follow ME news closely and try to help the ME cause, in Ireland and internationally, as best I can.

Twitter and other outlets allows me to share what I find to a wider audience. I believe there is power in numbers and together we can make a difference; conversely, I feel that if I and others don’t try, we will be ignored and fobbed off indefinitely with rehabilitative therapies like graded exercise therapy and cognitive behaviour therapy based on scheduling increased activity.

*Perhaps better known in some countries as “Chronic Fatigue Syndrome” (CFS), although some definitions for CFS are overly broad.

How to vote

All you need do to help ensure Tom is given a fair crack at winning in the categories, is to hit the link HERE which will take you to Tom’s nomination page.

Then simply select ‘Endorse Tom Kindlon’ which appears beneath his picture, choose the award category (you can vote for either category or for both separately), and complete the short form (name and email address).

You can then choose to post an acknowledgement of your support to Facebook or Twitter to help spread the word.

Endorse TomDetails about WEGO Health (who they are and what they do) can be found HERE and Frequently Asked Question’s HERE.

The competition closes 31 December 2013 but please get your votes in as soon as you possibly can. Thank you.

 

41 comments

{ 41 comments… read them below or add one }

Simon November 18, 2013 at 3:36 am

Thanks @Firestormm, and thanks too to @Tom Kindlon for all the great work.

Note you can only endorse Tom for one category at a time, so if you want to endorse him for Health Activist hero and Twitter best in show that's 2 steps. A pain, but only a small one :)

aimossy November 18, 2013 at 4:22 am

@Firestormm its funny I saw that on fb the day after I was reading toms stuff in pub med…..at the time of reading in pubmed I was thinking yeeeeeeaaah! go tom!!!
Thanks for the reminder because I got distracted and forgot to do it………….Done now!
and thanks TOM KINDLON!:hug:

Sean November 18, 2013 at 5:11 am

I endorse this Tom.

:)

Battery Muncher November 18, 2013 at 9:15 am

Nominated Tom for both categories. It's pretty easy – took me twenty seconds – and is well deserved, I think.

Bob November 18, 2013 at 9:34 am

Endorsed! And deservingly so!

Ren November 18, 2013 at 10:04 am

Endorsed. Thank you, Tom and thanx, Firestormm.

ggingues November 18, 2013 at 10:06 am


Battery Muncher

Nominated Tom for both categories. It's pretty easy – took me twenty seconds – and is well deserved, I think.

Oh, I see, I just visited the page again and endorsed him for both also!

GG

Tom Kindlon November 18, 2013 at 10:44 am

Thanks very much, @Firestormm <blush>.
And thanks guys for the kind words and nominations/endorsements.

I'm just part of a wider team.

In the Irish ME/CFS Association, lots of people have helped over the years esp. my mum and Orla Ní Chomhraí.

And, in the ME world, I've learned from lots of people over the years. And am grateful for the work lots of people are doing now or have done in the past.

Thanks to everyone trying, in whatever way they feel able and feel is best, to make a difference. :thumbsup:

beaker November 18, 2013 at 10:59 am

Mission Accomplished !
Thanks Tom for all you do for all of us !

peggy-sue November 18, 2013 at 11:12 am

All done here too. Thanks to PR for giving me the opportunity to vote for my favourite ME hero.

Lovely to see your cheery face too, Tom.:love:

Kina November 18, 2013 at 12:06 pm

Thanks for the article @Firestormm
Thanks for all the hard work you do @Tom Kindlon.
I have added my nominations. :)

MeSci November 18, 2013 at 1:38 pm


Phoenix Rising Team

View the Post on the Blog

View the Post on the Blog

Already done – good luck, Tom!

MeSci November 18, 2013 at 1:40 pm


Tom Kindlon

Thanks very much, @Firestormm <blush>.
And thanks guys for the kind words and nominations/endorsements.

I'm just part of a wider team.

In the Irish ME/CFS Association, lots of people have helped over the years esp. my mum and Orla Ní Chomhraí.

And, in the ME world, I've learned from lots of people over the years. And am grateful for the work lots of people are doing now or have done in the past.

Thanks to everyone trying, in whatever way they feel able and feel is best, to make a difference. :thumbsup:

You can do all the 'Thank yous' in your tearful acceptance speech!:D

rosie26 November 18, 2013 at 1:42 pm

Appreciate Tom, very much xxxxxx

Tom Kindlon December 12, 2013 at 11:53 am

I see WEGO Health have now put how many endorsements I've got on my Health Activist Awards nomination page: https://awards.wegohealth.com/nominees/tom-kindlon-230.

381 at the moment. Thanks all.

Tom Kindlon December 17, 2013 at 8:21 pm

WegoHealth have just sent out the following:
—–

I've asked my community to endorse me – is that like voting?

Endorsements were created to give community members a chance to participate in the Health Activist Awards without having to nominate their favorite leaders every time. They started out as a way to give a shoutout or virtual hug to your favorite Health Activists but in response to popular demand, this year they have a new function as well! This year, the 3 most endorsed nominees in each Award will automatically be a finalist – so make sure you ask your friends, family, and community members to take a moment to endorse your efforts – they can endorse you once per day and we'll be calculating endorsement numbers on February 1st, 2014. You can find your current endorsement number on your unique Nominee Profile.

—–
Thought I might as well mention it as I had a look at some other people and my endorsement count (393) is higher than any others I saw.

This competition isn't really important so I feel a bit bad mentioning it but I've always had a bit of a competitive streak.

https://awards.wegohealth.com/nominees/tom-kindlon-230

Firestormm December 17, 2013 at 11:15 pm

That's odd, it says in your quote Tom that endorsements can be once a day, which I don't think I knew when writing, but I just tried and it says I have already voted for you, so wont allow me to again.

Oh well. Hopefully, once is sufficient to get you through to the final at least :)

Tom Kindlon December 17, 2013 at 11:21 pm


Firestormm

That's odd, it says in your quote Tom that endorsements can be once a day, which I don't think I knew when writing, but I just tried and it says I have already voted for you, so wont allow me to again.

Oh well. Hopefully, once is sufficient to get you through to the final at least :)

Thanks Firestormm. I hadn't read it closely when I posted it and hadn't noticed about voting daily. To be honest, I find that a bit ridiculous: it's not like a voting competition where a non-profit is up for a prize. I'm hoping that is an error and people can only vote once per nomination (I'm in three categories now). I don't expect anybody to vote daily for me.

Tom Kindlon January 19, 2014 at 10:46 pm

Two other people from the ME/CFS world, that I know of, have pages people can endorse:

Maria Gjerpe

I decided to raise $1.2 million (£780,000, €920,000) in 90 days for a clinical trial on a drug for ME/CFS-patients through the crowdfunding campaign MEandYou – and succeeded.

continues at: https://awards.wegohealth.com/nominees/maria-gjerpe-1919

Maria has 633 votes. As she is in just one category, Health Activist Hero, all the votes are for this category. I imagine this means she has a very good chance of becoming a finalist through votes alone (there are two ways to be a finalist).

Jennie Spotila is up in the "Best in Show: Blog" category for http://www.occupycfs.com

https://awards.wegohealth.com/nominees/jennie-spotila-596

People can endorse either or both of them daily till the end of January.

ggingues January 20, 2014 at 12:32 am


Tom Kindlon

Two other people from the ME/CFS world, that I know of, have pages people can endorse:

continues at: https://awards.wegohealth.com/nominees/maria-gjerpe-1919

Maria has 633 votes. As she is in just one category, Health Activist Hero, all the votes are for this category. I imagine this means she has a very good chance of becoming a finalist through votes alone (there are two ways to be a finalist).

Jennie Spotila is up in the "Best in Show: Blog" category for http://www.occupycfs.com

https://awards.wegohealth.com/nominees/jennie-spotila-596

People can endorse either or both of them daily till the end of January.

Wonder if a thread should be started on this asking for daily voting, since it is acceptable.
GG

Tom Kindlon February 3, 2014 at 2:00 pm

I just got a nice e-mail – I'm a finalist for the Best in Show: Twitter Award in the Third Annual WEGO Health Activist Awards

———-

"I am writing to you because, well, I have some exciting news. You have been selected as a Finalist for the Best in Show: Twitter Award in the Third Annual WEGO Health Activist Awards. Congratulations! The judges were impressed with how active you are in the community, the content you are providing on your social channels, and the passion you have on spreading awareness while educating others.

We’re busy pulling together all of the Finalists and will be holding our Judging Panels over the next few weeks to choose winners for each category. Winners for the Third Annual WEGO Health Activist Awards will be announced in our individual Awards Ceremonies which will be held in March."

———-
Thanks to everyone who nominated and endorsed me as well as to those who unearth interesting things to tweet about.

Tom Kindlon February 3, 2014 at 5:08 pm


Tom Kindlon

Two other people from the ME/CFS world, that I know of, have pages people can endorse:

Maria Gjerpe

I decided to raise $1.2 million (£780,000, €920,000) in 90 days for a clinical trial on a drug for ME/CFS-patients through the crowdfunding campaign MEandYou – and succeeded.

continues at: https://awards.wegohealth.com/nominees/maria-gjerpe-1919

Maria has 633 votes. As she is in just one category, Health Activist Hero, all the votes are for this category. I imagine this means she has a very good chance of becoming a finalist through votes alone (there are two ways to be a finalist).

Jennie Spotila is up in the "Best in Show: Blog" category for http://www.occupycfs.com

https://awards.wegohealth.com/nominees/jennie-spotila-596

People can endorse either or both of them daily till the end of January.

Both Maria and Jennie are also finalists in their respective categories.

Sean February 3, 2014 at 7:11 pm

Congrats to Tom, Maria, and Jennie. All the best.

MeSci February 4, 2014 at 5:55 am


Tom Kindlon

I just got a nice e-mail – I'm a finalist for the Best in Show: Twitter Award in the Third Annual WEGO Health Activist Awards

———-

———-
Thanks to everyone who nominated and endorsed me as well as to those who unearth interesting things to tweet about.

:balloons:Woohoo!:balloons:

Tom Kindlon February 11, 2014 at 10:33 am

[​IMG]
I just got my Wego Health activist awards "Best in Show: Twitter" finalist badge. :)

Firestormm February 11, 2014 at 11:13 am

@Tom Kindlon Congratulations! :thumbsup: :balloons::balloons::balloons:

MeSci February 11, 2014 at 12:55 pm


Tom Kindlon

[​IMG]
I just got my Wego Health activist awards "Best in Show: Twitter" finalist badge. :)

Wear it with pride! :thumbsup:

Tom Kindlon March 5, 2014 at 8:55 am

I just got my finalists' pack for the Wego Health Activist Awards. :)
[​IMG]

peggy-sue March 5, 2014 at 9:08 am

:balloons::thumbsup::balloons:
Lovely picture, Tom, thanks for sharing and congratulations on getting this far.
I've got all my bits crossed for you to win outright.:)

Firestormm March 5, 2014 at 10:23 am


Tom Kindlon

I just got my finalists' pack for the Wego Health Activist Awards. :)
[​IMG]

That's brilliant! Made me LOL. What's in the bottle? :)

peggy-sue March 5, 2014 at 10:26 am

I wasn't going to ask. I assumed it was alcohol-free. ;)

But real champagne should be in order.
(horrible gassy stuff though, and gives you really bad breath.)

Firestormm March 5, 2014 at 10:31 am


peggy-sue

I wasn't going to ask. I assumed it was alcohol-free. ;)

But real champagne should be in order.
(horrible gassy stuff though, and gives you really bad breath.)

It does not! Mind you Scottish champagne might I suppose :lol: I used to like a drop of Veuve Clicquot myself – with my fish and chips of course :rofl:

Ema March 5, 2014 at 10:39 am


Firestormm

It does not! Mind you Scottish champagne might I suppose :lol: I used to like a drop of Veuve Clicquot myself – with my fish and chips of course :rofl:

That seriously might make the cut for my *last meal*.

Tom Kindlon March 5, 2014 at 10:41 am


Firestormm

That's brilliant! Made me LOL. What's in the bottle? :)

Sparkling cider (alcohol free) – it was part of the pack I got, along with the plastic glasses.

[I only noticed that now - I had thought it contained alcohol so hadn't opened it]

Firestormm March 5, 2014 at 10:46 am


Tom Kindlon

Sparkling cider (alcohol free) – it was part of the pack I got, along with the plastic glasses.

[I only noticed that now - I had thought it contained alcohol so hadn't opened it]

Man. I always wanted to try an experiment. And see if I would feel tipsy on non-alcoholic beer/wine/cider if I didn't know it had no alcohol. Bit like the 'pepsi challenge' I suppose – remember that? I never tried this non-alcoholic stuff myself – could never see the point. Not that I drink now – nor have I done for several years: other than the occasional glass of the red stuff :)

Tom Kindlon March 27, 2014 at 4:09 pm

Not surprisingly, I didn't win the WegoHealth health activist award today. The winner was Hypothyroid Mum whose internet level of activity is at a different level to mine e.g. 79,979 likes for her Facebook page.

Anyway, it was nice to be a finalist. Thanks to everyone who nominated or endorsed me.

A recording of the awards ceremony is at:

(it doesn't really start till 3:58)
My bit is at: 7:07 – 8:52.

Thanks for James David Chapman for his help editing my script (which was initially way too long) and then putting the slide show together. I might put up the full piece in a few days.

Roy S March 27, 2014 at 6:03 pm


WHAT? Kindlon didn't win? That's outrageous.
 
Internet, you will pay!
 
 
Is there a contest for the lamest joke?

MeSci March 28, 2014 at 3:50 am


Tom Kindlon

Not surprisingly, I didn't win the WegoHealth health activist award today. The winner was Hypothyroid Mum whose internet level of activity is at a different level to mine e.g. 79,979 likes for her Facebook page.

Anyway, it was nice to be a finalist. Thanks to everyone who nominated or endorsed me.

A recording of the awards ceremony is at:

(it doesn't really start till 3:58)
My bit is at: 7:07 – 8:52.

Thanks for James David Chapman for his help editing my script (which was initially way too long) and then putting the slide show together. I might put up the full piece in a few days.

'They' say it's not the winning but the taking part.

You have raised awareness, Tom, which you are so good at.

Tom Kindlon March 30, 2014 at 9:54 am

For what it's worth, here's my submission for the WegoHealth health activist awards. It skims over my ME work over the last 18 or so years.

I don't have a webcam so you don't see me but it has lots of photos.

My initial piece was over 7 minutes long and they said pieces had to be under 5 minutes. Thanks to James David Chapman and another person for help with the editing of the text. Lots of things that I would have liked to have said got the chop. Thanks also to James for his help putting the slide show together to run in time alongside the text – it is very much appreciated especially as I didn't give him too much time (we were given only a week to make the piece and I was hemming and hawing about doing it so didn't get going for a few days).

Thanks again for the initial nomination and endorsements.

Firestormm March 30, 2014 at 4:04 pm

@Tom Kindlon That was brilliant! Well done. Must have been hard trying to keep it so succinct but I think you achieved it very well indeed.

Tom Kindlon March 30, 2014 at 4:08 pm


Firestormm

@Tom Kindlon That was brilliant! Well done. Must have been hard trying to keep it so succinct but I think you achieved it very well indeed.

Cheers @Firestormm. @Esther12, as well as James David Chapman, helped.

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