Tom Kindlon

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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]

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.[3]

Talks, interviews, and articles[edit | edit source]

  • 2012, Letter to the editor: Objective compliance and outcome measures should be used in trials of exercise interventions for Chronic Fatigue Syndrome[4]
  • 2013, Cort Johnson interviews Tom Kindlon (Introduction)[5]
  • 2015, "No one chooses to have ME - everything changed when I became ill"[1]
  • 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[6] - (Abstract)
  • Jan 2017, PACE trial claims of recovery are not justified by the data: A Rejoinder to Sharpe, Chalder, Johnson, Goldsmith and White (2017)[7](Abstract) by Carolyn Wilshire, Tom Kindlon, & Simon McGrath
  • Mar 20, 2017, Do graded activity therapies cause harm in chronic fatigue syndrome?[8] - (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.[8]
  • 2018, Rethinking the treatment of chronic fatigue syndrome—A reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT[9] - (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[10] - (Abstract)

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. 1.01.11.21.31.41.5 Kindlon, Tom (Sep 2018). "'No one chooses to have ME - everything changed when I became ill' - Independent.ie". Independent.ie. Retrieved Sep 9, 2018. 
  2. "Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome"
  3. "No one chooses to have ME - everything changed when I became ill"
  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. Johnson, Cort (Feb 17, 2013). Stukindawski, ed. "Cort Johnson interviews Tom Kindlon (Introduction)". Phoenix Rising. Retrieved Sep 9, 2018. 
  6. Wilshire, Carolyn; Kindlon, Tom; Matthees, Alem; McGrath, Simon (Dec 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. 
  7. Wilshire, Carolyn; Kindlon, Tom; McGrath, Simon (Jan 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. in press. doi:10.1080/21641846.2017.1299358. 
  8. 8.08.1 Kindlon, Tom (Mar 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. 
  9. 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", ResearchGate 
  10. McPhee, Graham; Baldwin, Adrian; Kindlon, Tom; Hughes, Brian M (Jun 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. 
  11. "WEGO Health Awards - Best in Show: Twitter Nominees". WEGO Health Awards. 2014. Retrieved Sep 9, 2018. 
  12. "Tom Kindlon - Patient Leader". WEGO Health Awards. 2015. Retrieved Sep 9, 2018. 
  13. WEGO Health (Nov 14, 2016). "Best in Show: Twitter Finalists - WEGO Health". wegohealth.com. Retrieved Sep 9, 2018. 
  14. "WEGO Health Awards". WEGO Health Awards. 2017. Retrieved Sep 9, 2018. 
  15. Open Medicine Foundation (May 27, 2017). "May 26: Meeting with Tom Kindlon in Ireland". Open Medicine Foundation. Retrieved Sep 9, 2018. 
  16. WEGO Health (Sep 5, 2018). "Presenting the 2018 WEGO Health Awards Finalists". WEGO Health. Retrieved Jul 24, 2019. 
  17. WEGO Health (Sep 22, 2019). "Presenting the 2019 WEGO Health Awards Winners". WEGO Health. Retrieved Sep 22, 2019. 
  18. WEGO Health (Sep 22, 2019). "Presenting the 2019 WEGO Health Awards Finalists". WEGO Health. Retrieved Sep 22, 2019. 
  19. Kindlon, Tom (2009). "Tom Kindlon's Written Testimony: CFSAC Meeting May 2009" (PDF). wayback.archive-it.org. 
  20. Kindlon, Tom (2009). "Tom Kindlon's Written Testimony: CFSAC Meeting October 2009" (PDF). imet.ie. 

Myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

Graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.

ME/CFS - An acronym that combines myalgic encephalomyelitis with chronic fatigue syndrome. Sometimes they are combined because people have trouble distinguishing one from the other. Sometimes they are combined because people see them as synonyms of each other.

Cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.

Graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.

Cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.

Myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

Chronic fatigue syndrome advisory committee (CFSAC) - (sometimes pronounced SIF-SACK) A US government advisory council that met twice per year, covering current topics related to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Meetings usually lasted for two days and the results were presented to the Secretary of Health and Human Services (HHS). After 15 years, on September 5, 2018, CFSAC's charter was not renewed by the Department of HHS, effectively dissolving the committee without notice or warning.

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From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history.