ME advocates & groups you can endorse (=vote for) in the WegoHealth awards 2019

Tom Kindlon · Jul 2, 2019

I thought I would open a thread on this as I'm aware of a number of people who have been nominated.

Also votes numbered in the hundreds seem to have been enough to get into the final so it's not unachievable for people to become a finalist.

For example, some people I recall who were finalists in previous years were:
Jane Colby
Alem Matthees (he wouldn't be well enough to promote himself this year)
Jennie Spotila
myself (four times)

You can endorse as many people as you like

Tom Kindlon · Jul 2, 2019

Jo - A Journey Through the Fog

https://awards.wegohealth.com/nominees/14246

Tom Kindlon · Jul 2, 2019

Jessica Taylor-Bearman
https://awards.wegohealth.com/nominees/18073

Tom Kindlon · Jul 2, 2019

Michiel Tack
https://awards.wegohealth.com/nominees/16070

Tom Kindlon · Jul 2, 2019

Joan McParland
https://awards.wegohealth.com/nominees/4261

Tom Kindlon · Jul 4, 2019

Tom Kindlon (me)
https://awards.wegohealth.com/nominees/230

https://twitter.com/user/status/1146471333313822720

Tom Kindlon · Jul 3, 2019

Char - Chronically Hopeful
https://awards.wegohealth.com/nominees/13830

Tom Kindlon · Jul 3, 2019

ChronicallyHopeful Aby from Tiredgirl Society has also been nominated for the incredible community she's created, support Tiredgirl at https://awards.wegohealth.com/nominees/17985
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Tom Kindlon · Jul 3, 2019

ChronicallyHopeful Another amazing warrior to endorse is Bettie Hough who runs the Millions Missing Voice page. To support Bettie, visit https://awards.wegohealth.com/nominees/18074
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Tom Kindlon · Jul 3, 2019

ChronicallyHopeful Another great advocate is Paolo Maccallini (Italian & English advocacy), to support Paolo, visit https://awards.wegohealth.com/nominees/16004
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Tom Kindlon · Jul 3, 2019

ChronicallyHopeful Mireia Troi is a great advocate for the Spanish community, endorse her at https://awards.wegohealth.com/nominees/18221
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alktipping · Jul 4, 2019

very kind of you tom . I am still getting emails from wego after endorsing you last year . keep up the good work . and thanks .

Arisoned · Jul 5, 2019

Great thread - thanks so much. I think Invest In ME are up too?

Forestvon · Jul 5, 2019

Tom Kindlon said: ↑

Tom Kindlon (me)
https://awards.wegohealth.com/nominees/230

https://twitter.com/user/status/1146471333313822720

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@Tom Kindlon I can only see the two short nominator comments - no profile by you anywhere. Tried all of them. Is it just me?

Tom Kindlon · Jul 5, 2019

Forestvon said: ↑

@Tom Kindlon I can only see the two short nominator comments - no profile by you anywhere. Tried all of them. Is it just me?
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Hi Von,

Thanks for your interest. I wrote a 5000-character description and posted it to what I thought was my profile.
However, the Wego Health system has changed this year and has messed up some people's profiles so they are not linking up properly. Other people are having the same problem. I wrote to the support link on the website and got no reply; then I wrote to a forum on the website. I was told to email another email address. So I did this after a few days I got a reply but the suggestion didn't work. I have been told that the system is going to be fixed on July 8. So hopefully it will be fixed then.

Tom Kindlon · Jul 5, 2019

Amy Robson Harbottle Hi Tom Kindlon-pwme I’ve been nominated for my Instagram www.instagram.com/myillnessmythoughts & patient leader, would you possibly mind adding me to the list please

https://awards.wegohealth.com/nominees/17979

Tom Kindlon · Jul 5, 2019

Arisoned said: ↑

Great thread - thanks so much. I think Invest In ME are up too?
Click to expand...

Yes, I nominated them. I couldn't find them before but have found them now
Invest in ME
https://awards.wegohealth.com/nominees/704

Forestvon · Jul 5, 2019

Tom Kindlon said: ↑

Hi Von,

Thanks for your interest. I wrote a 5000-character description and posted it to what I thought was my profile.
However, the Wego Health system has changed this year and has messed up some people's profiles so they are not linking up properly. Other people are having the same problem. I wrote to the support link on the website and got no reply; then I wrote to a forum on the website. I was told to email another email address. So I did this after a few days I got a reply but the suggestion didn't work. I have been told that the system is going to be fixed on July 8. So hopefully it will be fixed then.
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Thanks Tom I will wait till then and check before forwarding it to non pwme

Tom Kindlon · Jul 5, 2019

Forestvon said: ↑

Thanks Tom I will wait till then and check before forwarding it to non pwme
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Okay. By the way, here is the profile:

I have had 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 & understand cartoons, I remain severely affected 24 years on, only leaving the home for important appointments or to go to our holiday home for the summer. I blame the late diagnosis, & 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 & 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.

I have been busy for the last 23 years working away as a (voluntary) ME activist. Much of what I concentrated on in the early years was raising awareness & understanding in Ireland with the Irish ME/CFS Association. I have done around 50 media interviews & have been featured in most of the national newspapers in Ireland. I have written dozens of press releases & have helped arrange for around 130 Irish families affected with ME to tell their story over the years in over 400 interviews. A lot more people are diagnosed here now & attitudes have improved.

When I became involved, there were only 45 people on the Irish ME/CFS Association mailing list. This made it difficult to respond to some media requests for interviewees. So one of the things I concentrated on was building up the membership. It reached over 450 one stage, though has gradually dropped back now, possibly due to the Internet.

I set up a research fund within the Association in 1996 & gradually with a lot of ground-level fundraising & small donations (I think the largest have been a few donations of €1000 each), we have now raised over €300,000 for much needed research.

We have done mail-outs of information bundles to various information sources incl. to all Irish GPs twice & we are more than 50% through the third one. I was involved in organising our first medical education event for GPs this year.

When I became involved the Association’s newsletter was one or two pages long. As the editor over 22 years, I’ve gradually built it up to a more substantial newsletter which has reached on occasion 80 pages long. I also edit an e-mail bulletin, usually with 10 items that goes out to members around once a week.

I have helped arrange dozens of Irish ME/CFS Association meetings with Irish & international medical & scientific speakers along with dozens of other meetings such as screenings of documentaries on the illness.

I’ve coordinated the Association’s helpline volunteer team for 20 years, dealing with many of the more challenging calls myself. I’ve also dealt with a lot of other enquiries to the Association.

In the mid-2000s, my concentration levels improved & allowed me to read a lot of research papers in the field. I realised a lot of rubbish was going unchallenged & 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 authored or coauthored 7 papers & 17 letters published in various peer-reviewed journals along with over 100 e-letters. Probably my proudest achievement was the publication of my paper, "Reporting of Harms Associated with Graded Exercise Therapy (GET) & Cognitive Behavioural Therapy (CBT) in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". I had previously been quite academically able but things are more difficult now with M.E. so it took a lot of work & sacrifice over more around 15 months. I was also involved with the critique of the £5 million PACE Trial, which was supposed to be the “definitive” of GET & CBT for CFS. In various publications, I or teams I was involved with highlighted flaws in what had been published and eventually reanalysed the data to show that the results were very unimpressive, particularly when objective comes were looked at.

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 & try to help the ME cause, in Ireland and internationally, as best I can. Twitter, Facebook & other platforms allow 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 & others don't try, we could be ignored and fobbed off indefinitely with rehabilitative therapies like GET & CBT based on scheduling increased activity.

*Perhaps better known in some countries as "Chronic Fatigue Syndrome" (CFS), although some CFS definitions are overly broad
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Hopefully people won't be too unkind if they have some problems with what it includes. I could only fit in info on some of the work I've been involved with in the Irish ME/CFS Association.

https://awards.wegohealth.com/nominees/230

ME/CFS Skeptic · Jul 5, 2019

Quite an impressive profile!

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ME advocates & groups you can endorse (=vote for) in the WegoHealth awards 2019

Tom Kindlon Senior Member (Voting Rights)

Tom Kindlon Senior Member (Voting Rights)

Tom Kindlon Senior Member (Voting Rights)

Tom Kindlon Senior Member (Voting Rights)

Tom Kindlon Senior Member (Voting Rights)

Tom Kindlon Senior Member (Voting Rights)

Tom Kindlon Senior Member (Voting Rights)

Tom Kindlon Senior Member (Voting Rights)

Tom Kindlon Senior Member (Voting Rights)

Tom Kindlon Senior Member (Voting Rights)

Tom Kindlon Senior Member (Voting Rights)

alktipping Senior Member (Voting Rights)

Arisoned Established Member (Voting Rights)

Forestvon Senior Member (Voting Rights)

Tom Kindlon Senior Member (Voting Rights)

Tom Kindlon Senior Member (Voting Rights)

Tom Kindlon Senior Member (Voting Rights)

Forestvon Senior Member (Voting Rights)

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ME/CFS Skeptic Senior Member (Voting Rights)

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ME advocates & groups you can endorse (=vote for) in the WegoHealth awards 2019

Tom Kindlon Senior Member (Voting Rights)

Tom Kindlon Senior Member (Voting Rights)

Tom Kindlon Senior Member (Voting Rights)

Tom Kindlon Senior Member (Voting Rights)

Tom Kindlon Senior Member (Voting Rights)

Tom Kindlon Senior Member (Voting Rights)

Tom Kindlon Senior Member (Voting Rights)

Tom Kindlon Senior Member (Voting Rights)

Tom Kindlon Senior Member (Voting Rights)

Tom Kindlon Senior Member (Voting Rights)

Tom Kindlon Senior Member (Voting Rights)

alktipping Senior Member (Voting Rights)

Arisoned Established Member (Voting Rights)

Forestvon Senior Member (Voting Rights)

Tom Kindlon Senior Member (Voting Rights)

Tom Kindlon Senior Member (Voting Rights)

Tom Kindlon Senior Member (Voting Rights)

Forestvon Senior Member (Voting Rights)

Tom Kindlon Senior Member (Voting Rights)

ME/CFS Skeptic Senior Member (Voting Rights)

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