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‘Matter over mind: The strange case of the ME study’ | WDDTY magazine | October 2016

Tom Kindlon

Senior Member
Messages
1,734

Tom Kindlon

Senior Member
Messages
1,734
Last edited:
Messages
22
This magazine is notorious for being full of scare-mongering & pseudoscience. It's terrible. If I knew nothing about me/PACE, and saw this published there, I'd assume the criticisms were unfounded. It's good the word is getting out there but it's a shame it's through this particular publication!
 

Glycon

World's Most Dangerous Hand Puppet
Messages
299
Location
ON, Canada
This magazine is notorious for being full of scare-mongering & pseudoscience. It's terrible. If I knew nothing about me/PACE, and saw this published there, I'd assume the criticisms were unfounded. It's good the word is getting out there but it's a shame it's through this particular publication!

The magazine's title is a dead giveaway, even if one is not acquainted with the contents.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
The magazine's title is a dead giveaway, even if one is not acquainted with the contents.
We can expect anti-doctor and anti-psychiatry groups to pick this up more and more, though its also the case that more moderate and careful media will also do so. On the specific publication (WTDDTY) I have nothing to say as I have not investigated myself. I will say that the public needs to be educated about the medical system, including its failings, as do doctors themselves. As long as the reporting is accurate I am not much worried about articles in more dubious media sources, and this looks like a good article. If it gets too hyped then I become worried, for just as we were against the PACE findings for rational reasons, so we should be against anti-PACE hype. The facts are enough.
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
It feels odd to have my story featuring in this when the journalist didn't interview me.

It's a pity it doesn't mention our reanalysis http://www.virology.ws/2016/09/21/no-recovery-in-pace-trial-new-analysis-finds/ , led by Alem Matthees, which found that CBT or GET didn't lead to recovery in the PACE Trial. However the article may have been written before this data was released.
The biographical details looked like a paraphrasing of those in the David Tuller article, I'd guess they mainly copied that, changed it a bit, and threw in a couple of other things they found from other sources. Kind of on the level of a lazy student.

From David Tuller:

Tom Kindlon, six feet tall and bulky, can only stand up for half a minute before dizziness and balance problems force him back down. He has a round face, wire-rimmed glasses, an engaging smile, and beard scruff. Direct light hurts his eyes. He wears a baseball cap to shield them.

Kindlon, 43, still lives with his parents in the two-story, four-bedroom house where he grew up. His mum, Vera, is his primary caretaker. He remains close with his three younger siblings— Ali, 40, and twins David and Deirdre, who are 35. All live nearby and help out when needed.

For the last 15 years, Kindlon has harnessed his limited energy for what he perceives as his primary mission: reviewing, and responding to, the literature on the illness. He has published more than a dozen peer-reviewed letters in scientific publications and regularly posts on the public forums and “rapid response” sections of journal websites, politely debating, dissecting and debunking questionable research claims.

“I haven’t read a fiction book in 20 years,” he noted, during a series of conversations ranging across Skype, Facebook, Twitter, and e-mail. “I need to be blinkered in what I do and don’t read, to concentrate and use my mental energy for this material.”

As a teenager, Kindlon loved playing rugby, cricket, tennis and soccer. When he was 16, he spent five days in western Ireland on a hiking and sailing trip with high school classmates. It was February, damp and chilly, and he was already suffering from a cold or some other bug; back in Dublin, he felt worse and stayed home for several days.

When he returned to school, he discovered something weird: After a round of sports, he now experienced muscle pains and a paralyzing exhaustion unlike anything he’d previously encountered. “I’d be totally whacked by the end of the day,” he recalled.

He saw a physiotherapist and then an orthopedic surgeon, who told him to exercise more. He tried swimming, but that also left him depleted. In 1991, despite his health struggles, he entered Trinity College. He slogged through two years of math studies but suffered more and more from problems with memory and concentration. “I was forgetting things, making silly errors,” he said.

Toward the end of the second year, he could no longer hold a pen in his hand. He developed tendonitis, first in one arm, then in the other. When he drove, pushing the pedals caused severe ankle pain. “Everything was magnified now,” he said. “I was just breaking down.” He took a leave from Trinity. His health continued to slide.

From WDDTY:

Tom Kindlon is a strapping six footer, yet his physical presence belies the reality he is forced to live every day, He can only stand for just 30 seconds before feeling dizzy, and his mother, Vera, is his full-time carer in the family home near Dublin, Ireland, As he can’t stand in the shower, she has to give him bed baths. “I know I only have so much energy and have to be cautious how I use it, I haven’t read a fiction book in over 20 years,” says Tom, 44.

He was diagnosed with CFS/ME (chronic fatigue syndrome/myalgic encephalomyelitis) in 1994, around the time when there was a sudden surge in cases of this mysterious condition. “I can remember how it happened. I developed an infection the day before going on a school trip when I was 16. I decided to still go. We went to an adventure centre, canoeing hill-walking, abseiling and orienteering. It was February and it was cold and rainy throughout the trip – not the place to be when you’re unwell. I was ill for some days after I came home.”

That was the last time Tom was to feel well. He was able to struggle through the rest of school and university, but always felt tired and his muscles ached. He went to see an orthopaedic surgeon, who recommended exercise, so he started swimming three our four times a week.

But he often had muscle strain afterwards and, after exams at college, he suffered a major relapse, which included a constant sore throat, high temperature and pain in his lower stomach.

A gastroenterologist diagnosed irritable bowel syndrome but, eventually, a consultant pinpointed his problem to ME, or post-viral chronic fatigue syndrome. Tom was a classic case, he said.

Looks like you've got a year older (43 to 44) and gone from "bulky" to "strapping", so good for you :).
 

Glycon

World's Most Dangerous Hand Puppet
Messages
299
Location
ON, Canada
We can expect anti-doctor and anti-psychiatry groups to pick this up more and more, though its also the case that more moderate and careful media will also do so. On the specific publication (WTDDTY) I have nothing to say as I have not investigated myself. I will say that the public needs to be educated about the medical system, including its failings, as do doctors themselves. As long as the reporting is accurate I am not much worried about articles in more dubious media sources, and this looks like a good article. If it gets too hyped then I become worried, for just as we were against the PACE findings for rational reasons, so we should be against anti-PACE hype. The facts are enough.

That, Sir, is an excellent post! :thumbsup:
 

Tom Kindlon

Senior Member
Messages
1,734
It feels odd to have my story featuring in this when the journalist didn't interview me.

It's a pity it doesn't mention our reanalysis http://www.virology.ws/2016/09/21/no-recovery-in-pace-trial-new-analysis-finds/ , led by Alem Matthees, which found that CBT or GET didn't lead to recovery in the PACE Trial. However the article may have been written before this data was released.

Somebody sent me this:
Here's your chap. http://bryanhubbard.net/about-bryan/ runs the magazine what docs don't tell you in uk. I imagine he would be overjoyed to have a story on the new results. Give it a bit of the old suspense/breathless. AMAZING! SECRET! EXPOSED! Then again maybe he's the sober type.
I don't feel inclined to do it myself at the moment but somebody else could if they wanted.
 
Messages
22
Given that a comment above shows the article is basically plagiarised from David Tuller's one, a reckon he's not a good 'journalist' to target.

Out of interest, is Ben Goldacre & the All Trials campaign aware of the re-analysis? Given their aims are for all trials to be published & the data made available, a large-scale studying fighting not to release their data, then when that data is re-analysed it shows their conclusions were wrong, seems right up their street.
 

Tom Kindlon

Senior Member
Messages
1,734
Somebody has told me it has now appeared in the Polish edition of the magazine:
Materia nad umysłem: zawikłana historia badań nad CFS
Tagi: mózg, zdrowe żywienie, służba zdrowia
Część lekarzy wciąż uważa, że zespół chronicznego zmęczenia (CFS) rodzi się w głowie pacjenta, jednak silna presja społeczna skłoniła ich, aby przyznali się do wyolbrzymienia danych przedstawionych w badaniach.

http://oczymlekarze.pl/profilaktyka...-nad-umyslem-zawiklana-historia-badan-nad-cfs