Tom Kindlon

Source: www.me-net.combidom.com

Tom Kindlon is known for his extensive analysis, publications and correspondence with ME/CFS researchers, particularly in relation to the PACE trial. He became ill with Myalgic Encephalomyelitis in February 1989, when he was just 16 years old.

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

Kindlon studied Mathematical Sciences in Trinity College Dublin, giving him the background to analyze and publish a paper on the reporting of harms associated with ME/CFS graded exercise therapy.

Kindlon's extensive body of work is on ResearchGate and PubMed. His comments are listed here on PubMed Commons.

Talks, Interviews, Articles

• 20 March 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."

• Jan 2017, PACE trial claims of recovery are not justified by the data: A Rejoinder to Sharpe, Chalder, Johnson, Goldsmith and White (2017) by Carolyn Wilshire, Tom Kindlon, & Simon McGrath
• Dec 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", by Carolyn Wilshire, Tom Kindlon, Alem Matthees & Simon McGrath in Fatigue: Biomedicine, Health & Behavior
• 2015, 'No one chooses to have ME - everything changed when I became ill' by Tom Kindlon in Irish Independent
• 2013, Cort Johnson interviews Tom Kindlon - Phoenix Rising

Awards

• 2016, Fifth Annual Wego Health finalist for "Best in Show-Twitter" for a health activist
• 2015, Fourth Annual Wego Awards - Nominated for Health Activist Hero
• 2014, Third Annual Wego Health finalist for "Best in Show-Twitter" for a health activist

CFSAC testimony

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

Online Presence

• Twitter
• Facebook - Tom Kindlon's ME CFS & related page
• Facebook - Tom Kindlon-pwme
• Pinterest
• Tumblr
• ResearchGate
• Google+

PACE trial A controversial study which claimed that CBT and GET were effective in treating "CFS/ME", despite the fact that its own data did not support this conclusion. Its results and methodology were widely disputed by patients, scientists, and the peer-reviewed scientific literature.

pacing The practice of staying within one's "energy envelope" or personal limit by combining periods of activity with periods of rest or avoiding exerting beyond a certain level. ME/CFS patients use pacing to avoid or reduce post-exertional malaise (PEM). Some patients use a heart rate monitor to help with pacing.

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.

cognition Thought processes, including attention, reasoning, and memory.

physiological Concerning living organisms, such as cells or the human body.  Physio logical (as in physio) is not to be confused with psych ological (emotional stress).

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.