Tom Kindlon

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history
Tom helped reanalyze the PACE trial data and found the published results were untrue

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.[1]

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.[1]

Illness onset and illness course[edit | edit source]

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.[1]

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)).[1]

As of 2015, Tom has been house-bound for 21 years. His full-time carer is his mother, Vera.[1]

Advocacy[edit | edit source]

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YouTube
Video created by Tom Kindlon demonstrating his work, 2017.

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.[2] 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.[1]

Talks, and interviews[edit | edit source]

Notable studies and academic publications[edit | edit source]

  • 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[4]
  • 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[5] - (Full text)
  • 2017, PACE trial claims of recovery are not justified by the data: A Rejoinder to Sharpe, Chalder, Johnson, Goldsmith and White (2017)[6] (Abstract) by Carolyn Wilshire, Tom Kindlon, & Simon McGrath
  • 2017, Do graded activity therapies cause harm in chronic fatigue syndrome?[7] - (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.[7]

  • 2018, Rethinking the treatment of chronic fatigue syndrome—A reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT[8] - (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[9] - (Abstract)
  • 2020, Understanding the economic impact of myalgic encephalomyelitis/chronic fatigue syndrome in Ireland: a qualitative study (Full text)

Awards[edit | edit source]

Chronic Fatigue Syndrome Advisory Committee testimony[edit | edit source]

Online presence[edit | edit source]

See also[edit | edit source]

Learn more[edit | edit source]

References[edit | edit source]

  1. ↑ 1.0 1.1 1.2 1.3 1.4 1.5 1.6 Kindlon, Tom (September 2018). "'No one chooses to have ME - everything changed when I became ill'". Independent.ie. Retrieved September 9, 2018.
  2. ↑ "Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome"
  3. ↑ Johnson, Cort (February 17, 2013). Stukindawski (ed.). "Cort Johnson interviews Tom Kindlon (Introduction)". Phoenix Rising. Retrieved September 9, 2018.
  4. ↑ Kindlon, Tom (2012). "Objective compliance and outcome measures should be used in trials of exercise interventions for Chronic Fatigue Syndrome". European Journal of Clinical Investigation. 42 (12): 1360–1361. doi:10.1111/j.1365-2362.2012.02724.x. ISSN 1365-2362.
  5. ↑ Wilshire, Carolyn; Kindlon, Tom; Matthees, Alem; McGrath, Simon (December 14, 2016). "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". Fatigue: Biomedicine, Health & Behavior. 5 (1): 43–56. doi:10.1080/21641846.2017.1259724. ISSN 2164-1846.
  6. ↑ Wilshire, Carolyn; Kindlon, Tom; McGrath, Simon (January 2, 2017). "PACE trial claims of recovery are not justified by the data: A Rejoinder to Sharpe, Chalder, Johnson, Goldsmith and White (2017)". Fatigue: Biomedicine, Health and Behavior. 5 (1): 62–67. doi:10.1080/21641846.2017.1299358.
  7. ↑ 7.0 7.1 Kindlon, Tom (March 20, 2017). "Do graded activity therapies cause harm in chronic fatigue syndrome?". Journal of Health Psychology. 22 (9): 1146–1154. doi:10.1177/1359105317697323. ISSN 1359-1053.
  8. ↑ Wilshire, C; Kindlon, T; Courtney, R; Matthees, A; Tuller, D; Geraghty, K; Levin, B (2018), "Rethinking the treatment of chronic fatigue syndrome—A reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT", BMC Psychology, 6 (6), doi:10.1186/540359-018-0218-3
  9. ↑ McPhee, Graham; Baldwin, Adrian; Kindlon, Tom; Hughes, Brian M (June 24, 2019). "Monitoring treatment harm in myalgic encephalomyelitis/chronic fatigue syndrome: A freedom-of-information study of National Health Service specialist centres in England". Journal of Health Psychology: 135910531985453. doi:10.1177/1359105319854532. ISSN 1359-1053. PMID 31234662.
  10. ↑ "WEGO Health Awards - Best in Show: Twitter Nominees". WEGO Health Awards. 2014. Retrieved September 9, 2018.
  11. ↑ "Tom Kindlon - Patient Leader". WEGO Health Awards. 2015. Retrieved September 9, 2018.
  12. ↑ WEGO Health (November 14, 2016). "Best in Show: Twitter Finalists - WEGO Health". wegohealth.com. Retrieved September 9, 2018.
  13. ↑ "WEGO Health Awards". WEGO Health Awards. 2017. Retrieved September 9, 2018.
  14. ↑ Open Medicine Foundation (May 27, 2017). "May 26: Meeting with Tom Kindlon in Ireland". Open Medicine Foundation. Retrieved September 9, 2018.
  15. ↑ WEGO Health (September 5, 2018). "Presenting the 2018 WEGO Health Awards Finalists". WEGO Health. Retrieved July 24, 2019.
  16. ↑ WEGO Health (September 22, 2019). "Presenting the 2019 WEGO Health Awards Winners". WEGO Health. Retrieved September 22, 2019.
  17. ↑ WEGO Health (September 22, 2019). "Presenting the 2019 WEGO Health Awards Finalists". WEGO Health. Retrieved September 22, 2019.
  18. ↑ Kindlon, Tom (2009). "Tom Kindlon's Written Testimony: CFSAC Meeting May 2009" (PDF). Health and Human Services (pdf). Archived from the original (PDF) on March 24, 2014.
  19. ↑ Kindlon, Tom (2009). "Tom Kindlon's Written Testimony: CFSAC Meeting October 2009" (PDF). imet.ie (pdf).
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