Tom Kindlon

Tom Kindlon is a researcher and patient advocate for myalgic encephalomyelitis (ME). As a very active young man, he participated in soccer, table tennis, life-saving, tennis, cricket, and cross-country running, until he became ill with ME when 16 years old. He was also naturally academic.

Tom struggled for many years trying to regain his health and continued exercising through swimming. Physical and mental exertion made him worse. He now lives with severe ME, is housebound, uses a wheelchair, and needs a full-time carer.

Illness onset and illness course
The day before a school trip he developed an infection but decided to still go to an adventure center with canoeing, hill-walking, abseiling, and orienteering. It was a cold, rainy February day and was ill for several days after coming home. He was never the same after that.

He struggled through school and then university for four years living a hermit-like existence. An orthopedic surgeon recommended exercise but kept straining muscles. He had over 100 physiotherapy appointments dealing with muscle and tendon strains. But after the mental exertion of an exam, his throat swelled up and he could barely swallow. He developed flu-like symptoms and a high temperature. Still trying to remain active, he found that the reaction to exercising was more severe. He developed an almost constant sore throat, developed pain in his lower stomach, and diarrhea. He was diagnosed with irritable bowel syndrome. He was finally diagnosed post-viral chronic fatigue syndrome (now usually diagnosed as either ME, or chronic fatigue syndrome (CFS)).

As of 2015, Tom has been house-bound for 21 years. His full-time carer is his mother, Vera.

Advocacy
Kindlon is known for his extensive analysis, publications and correspondence with ME/CFS researchers, particularly in relation to the PACE trial. He studied Mathematical Sciences in Trinity College Dublin, giving him the background to analyze and publish a paper on the reporting of harms associated with graded exercise therapy (GET) for ME/CFS patients. His extensive body of work is on ResearchGate and PubMed. His comments are listed here on PubMed Commons.

Tom is Assistant Chairperson of the Irish ME/CFS Association. He was profiled in an Irish publication in 2015.

Talks, and interviews

 * 2013, Cort Johnson interviews Tom Kindlon (Introduction)
 * 2015, "No one chooses to have ME - everything changed when I became ill"
 * 2021, "Chronic Fatigue Syndrome" including discussion of long Covid and his story
 * 2020, ME/CFS Alert, Episode 119: Interview with Tom Kindlon - video
 * 2022, "ME: ‘I spend 20 hours a day lying down. I have four upright hours in the day’" (Irish Times) https://www.irishtimes.com/health/your-wellness/2022/10/11/me-i-spend-20-hours-a-day-lying-down-i-have-four-upright-hours-in-the-day/

Notable studies and academic publications

 * 2009, Change in grey matter volume cannot be assumed to be due to cognitive behavioural therapy (Full text)
 * 2009, Letter to the Editor: Stratification using biological factors should be performed in more CFS studies (Full text)
 * 2010, Criteria used to define chronic fatigue syndrome questioned (Full text)
 * 2010, FINE trial for CFS. Missing data (Full text)
 * 2011, Educational Programs for Chronic Fatigue Syndrome Need to Take Cognizance of the Condition's Abnormal Response to Exercise (Full text)
 * 2011, Harms of Cognitive Behaviour Therapy Designed to Increase Activity Levels in Chronic Fatigue Syndrome: Questions Remain (Full text)


 * 2011, Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (Full text)
 * 2012, Internet-based CBT for adolescents with chronic fatigue syndrome (Full text)
 * 2012, Letter to the editor: Objective compliance and outcome measures should be used in trials of exercise interventions for Chronic Fatigue Syndrome
 * 2014, Elements of rehabilitative strategies associated with negative outcomes in CFS/ME: The need for further investigations (Full text)
 * 2017, Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy? A critical commentary and preliminary re-analysis of the PACE trial - (Full text)
 * 2017, PACE trial claims of recovery are not justified by the data: A Rejoinder to Sharpe, Chalder, Johnson, Goldsmith and White (2017) (Abstract) by Carolyn Wilshire, Tom Kindlon, & Simon McGrath
 * 2017, Do graded activity therapies cause harm in chronic fatigue syndrome? - (Abstract)"Reporting of harms was much better in the PACE (Pacing, graded Activity, and Cognitive behavioural therapy: a randomised Evaluation) trial than earlier chronic fatigue syndrome trials of graded exercise therapy and cognitive behavioural therapy. However, some issues remain. The trial’s poor results on objective measures of fitness suggest a lack of adherence to the activity component of these therapies. Therefore, the safety findings may not apply in other clinical contexts. Outside of clinical trials, many patients report deterioration with cognitive behavioural therapy and particularly graded exercise therapy. Also, exercise physiology studies reveal abnormalities in chronic fatigue syndrome patients’ responses to exertion. Given these considerations, one cannot conclude that these interventions are safe and risk-free."
 * 2018, Rethinking the treatment of chronic fatigue syndrome—A reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT - (Full Text)
 * 2019, Monitoring treatment harm in myalgic encephalomyelitis/chronic fatigue syndrome: A freedom-of-information study of National Health Service specialist centres in England - (Abstract)
 * 2020, Understanding the economic impact of myalgic encephalomyelitis/chronic fatigue syndrome in Ireland: a qualitative study (Full text)

Awards

 * 2014, Third Annual Wego Health finalist for "Best in Show-Twitter" for a health activist
 * 2015, Fourth Annual Wego Awards - Nominated for Health Activist Hero
 * 2015, ProHealth awarded him $250 for his "dedicated, passionate work" along with $500 for the Irish ME/CFS Association. He said he would donate his award money to the Irish ME/CFS Association https://www.facebook.com/photo/?fbid=10205087305995205&set=a.2699963451206
 * 2016, Fifth Annual Wego Health finalist for "Best in Show-Twitter" for a health activist
 * 2017, Sixth Annual Wego Health finalist for "Best in Show-Twitter" for a health activist
 * 2017, Certificate of Appreciation from the Open Medicine Foundation
 * 2018, Seventh Annual Wego Health finalist for "Lifetime Achievement" for a health activist
 * 2019, Eighth Annual Wego Health winner for "Lifetime Achievement" for a health activist
 * 2019, Eighth Annual Wego Health finalist for "Best in Show: Twitter" for a health activist
 * 2021, Selected as an Honorary Fellow of Doctors with ME https://twitter.com/TomKindlon/status/1409502007933669376 https://doctorswith.me/home/about/honorary-fellows/

Chronic Fatigue Syndrome Advisory Committee testimony

 * May 2009, Written Testimony for May 2009 meeting
 * Oct 2009, Written testimony at Oct 2009 CFSAC meeting

Online presence

 * Twitter
 * Facebook - Tom Kindlon's ME CFS & related page
 * Facebook - Tom Kindlon-pwme
 * Pinterest
 * Tumblr
 * ResearchGate
 * Instagram
 * Mastodon @tomkindlon@disabled.social

Learn more

 * Wego Health profile description