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[[File:Tom Kindlon.png |thumb|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 [[Pediatric myalgic encephalomyelitis and chronic fatigue syndrome|16 years old]]. He was also naturally academic.<ref name="everythingchanged" /> Tom struggled for many years trying to regain his health and continued [[Exercise|exercising]] through swimming. Physical and mental [[exertion]] made him worse. He now lives with [[Severe and very severe ME|severe ME]], is housebound, uses a wheelchair, and needs a full-time carer.<ref name="everythingchanged" /> == 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.<ref name="everythingchanged" /> 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 [[Fever|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 [[Abdominal pain|pain in his lower stomach]], and [[diarrhea]]. He was diagnosed with [[irritable bowel syndrome]]. He was finally diagnosed [[Post-infectious Fatigue Syndrome|post-viral chronic fatigue syndrome]] (now usually diagnosed as either ME, or [[chronic fatigue syndrome]] (CFS)).<ref name="everythingchanged" /> As of 2015, Tom has been house-bound for 21 years. His full-time carer is his mother, Vera.<ref name="everythingchanged" /> == Advocacy == {{Video|id=lPvvNzeFz2Q|service=youtube|dimensions=550|description=Video created by Tom Kindlon demonstrating his work, 2017.|alignment=right|urlargs=start=2&autoplay=0&rel=0}} 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.<ref>[http://iacfsme.org/PDFS/Reporting-of-Harms-Associated-with-GET-and-CBT-in.aspx "Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome"]</ref> His extensive body of work is on [http://www.researchgate.net/profile/Tom_Kindlon2/publications ResearchGate] and [http://www.ncbi.nlm.nih.gov/pubmed/?term=kindlon+t PubMed]. His comments are [http://www.ncbi.nlm.nih.gov/myncbi/tom.kindlon.1/comments/ listed here on PubMed Commons]. Tom is Assistant Chairperson of the [[Irish ME/CFS Association]]. He was profiled in an Irish publication in 2015.<ref name="everythingchanged" /> ==Talks, and interviews== *2013, [http://phoenixrising.me/archives/15567 Cort Johnson interviews Tom Kindlon (Introduction)]<ref>{{Cite news | url=http://phoenixrising.me/archives/15567 | title = Cort Johnson interviews Tom Kindlon (Introduction) | last = Johnson | first =Cort | date = Feb 17, 2013|work=Phoenix Rising|access-date=2018-09-09|archive-url=|archive-date= | editor-last = Stukindawski|language=en-US}}</ref> *2015, [http://www.independent.ie/life/health-wellbeing/health-features/no-one-chooses-to-have-me-everything-changed-when-i-became-ill-34153140.html "No one chooses to have ME - everything changed when I became ill"]<ref name="everythingchanged">{{Cite news | url=http://www.independent.ie/life/health-wellbeing/health-features/no-one-chooses-to-have-me-everything-changed-when-i-became-ill-34153140.html | title = 'No one chooses to have ME - everything changed when I became ill' | last = Kindlon | first=Tom | date = Sep 2018|work=Independent.ie|access-date=2018-09-09|archive-url=|archive-date=|language=en}}</ref> *2021, [https://www.newstalk.com/podcasts/highlights-from-moncrieff/chronic-fatigue "Chronic Fatigue Syndrome" including discussion of long Covid and his story] *2020, [https://youtu.be/2hrPnK1OWXQ 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 [https://www.researchgate.net/publication/23959477_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 [https://www.researchgate.net/publication/26883969_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 [https://www.researchgate.net/publication/44655939_Criteria_used_to_define_chronic_fatigue_syndrome_questioned (Full text)] *2010, FINE trial for CFS. Missing data [https://www.researchgate.net/publication/232266282_Missing_data (Full text)] *2011, Educational Programs for Chronic Fatigue Syndrome Need to Take Cognizance of the Condition's Abnormal Response to Exercise [https://www.researchgate.net/publication/51173855_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 [https://www.researchgate.net/publication/216572185_Reporting_of_Harms_Associated_with_Graded_Exercise_Therapy_and_Cognitive_Behavioural_Therapy_in_Myalgic_EncephalomyelitisChronic_Fatigue_Syndrome (Full text)] *2011, Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome [https://www.researchgate.net/publication/49734986_Harms_of_Cognitive_Behaviour_Therapy_Designed_to_Increase_Activity_Levels_in_Chronic_Fatigue_Syndrome_Questions_Remain (Full text)] *2012, Internet-based CBT for adolescents with chronic fatigue syndrome [https://www.researchgate.net/publication/230652781_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<ref>{{Cite journal | last = Kindlon | first=Tom| date = 2012 | title = Objective compliance and outcome measures should be used in trials of exercise interventions for Chronic Fatigue Syndrome|url=https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1365-2362.2012.02724.x|journal=European Journal of Clinical Investigation|language=en|volume=42|issue=12|pages=1360–1361|doi=10.1111/j.1365-2362.2012.02724.x|issn=1365-2362}}</ref> *2014, Elements of rehabilitative strategies associated with negative outcomes in CFS/ME: The need for further investigations [https://www.researchgate.net/publication/264866467_Elements_of_rehabilitative_strategies_associated_with_negative_outcomes_in_CFSME_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<ref name="Wilshire,et al, 2017" /> - [https://www.researchgate.net/publication/312464313_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)<ref>{{Cite journal | last =Wilshire | first = Carolyn | last2 = Kindlon | first2=Tom | last3 = McGrath | first3 = Simon | date = 2017-01-02 | title = PACE trial claims of recovery are not justified by the data: A Rejoinder to Sharpe, Chalder, Johnson, Goldsmith and White (2017)|url=https://www.researchgate.net/publication/315482747_PACE_trial_claims_of_recovery_are_not_justified_by_the_data_A_Rejoinder_to_Sharpe_Chalder_Johnson_Goldsmith_and_White_2017|journal=Fatigue: Biomedicine, Health and Behavior|volume=5|issue=1|pages = 62-67 |doi=10.1080/21641846.2017.1299358}}</ref> [https://www.researchgate.net/publication/315482747_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?<ref name=":0">{{Cite journal | last = Kindlon | first=Tom | date = 2017-03-20 | title = Do graded activity therapies cause harm in chronic fatigue syndrome?|url=http://journals.sagepub.com/doi/10.1177/1359105317697323|journal=Journal of Health Psychology|language=en|volume=22|issue=9|pages=1146–1154|doi=10.1177/1359105317697323|issn=1359-1053}}</ref> - [http://journals.sagepub.com/doi/10.1177/1359105317697323 (Abstract)]<blockquote> Reporting of harms was much better in the PACE ([[Pacing]], graded Activity, and [[Cognitive behavioral therapy|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.<ref name=":0" /></blockquote> *2018, Rethinking the treatment of chronic fatigue syndrome—A reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT<ref name="Wilshire, 2018">{{Citation | last1 = Wilshire | first1 = C | authorlink1 = Carolyn Wilshire | last2 = Kindlon | first2 = T | authorlink2 = Tom Kindlon | last3 = Courtney | first3 = R | authorlink3 = Robert Courtney | last4 = Matthees | first4 = A | authorlink4 = Alem Matthees | last5 = Tuller | first5 = D | authorlink5 = David Tuller | last6 = Geraghty | first6 = K | authorlink6 = Keith Geraghty | last7 = Levin | first7 = B | authorlink7 = Bruce Levin | title = Rethinking the treatment of chronic fatigue syndrome—A reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT | journal = BMC Psychology|doi =10.1186/540359-018-0218-3 | volume = 6 | issue = 6 | page = | date = 2018 | url = https://www.researchgate.net/publication/322568480_Rethinking_the_treatment_of_chronic_fatigue_syndrome-A_reanalysis_and_evaluation_of_findings_from_a_recent_major_trial_of_graded_exercise_and_CBT}}</ref> - [https://www.researchgate.net/publication/322568480_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<ref>{{Cite journal | last =McPhee | first = Graham | authorlink = Graham McPhee | last2 = Baldwin | first2=Adrian|author-link2 = | last3 = Kindlon | first3=Tom | author-link3 = Tom Kindlon | last4 = Hughes | first4 = Brian M | authorlink4 = Brian Hughes | date = 2019-06-24 | title = Monitoring treatment harm in myalgic encephalomyelitis/chronic fatigue syndrome: A freedom-of-information study of National Health Service specialist centres in England | url =http://journals.sagepub.com/doi/10.1177/1359105319854532|journal=Journal of Health Psychology|language=en | page = 135910531985453 |doi=10.1177/1359105319854532|pmid=31234662 |issn=1359-1053|quote=|via=}}</ref> - [[pubmed:31234662|(Abstract)]] * 2020, Understanding the economic impact of myalgic encephalomyelitis/chronic fatigue syndrome in Ireland: a qualitative study [https://www.researchgate.net/publication/347362940_Understanding_the_economic_impact_of_myalgic_encephalomyelitischronic_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<ref>{{Cite web|url=https://awards.wegohealth.com/nominees?award_id=third-annual-health-activist-awards-best-in-show-twitter | title = WEGO Health Awards - Best in Show: Twitter Nominees | last = | first = | date = 2014 | website = WEGO Health Awards|language=en|archive-url=|archive-date=|access-date=2018-09-09}}</ref> *2015, Fourth Annual Wego Awards - Nominated for Health Activist Hero<ref>{{Cite web|url=https://awards.wegohealth.com/nominees/230 | title = Tom Kindlon - Patient Leader | last= | first = | date = 2015 | website = WEGO Health Awards|language=en|archive-url=|archive-date=|access-date=2018-09-09}}</ref> *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&__tn__=%2CO*F 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<ref>{{Cite web|url=http://blog.wegohealth.com/2016/11/14/best-in-show-twitter-finalists/ | title = Best in Show: Twitter Finalists - WEGO Health | last =WEGO Health | first = | date = Nov 14, 2016 | website = wegohealth.com|language=en-US|archive-url=|archive-date=|access-date=2018-09-09}}</ref> *2017, [https://www.wegohealth.com/2017/09/25/announcing-6th-annual-wego-health-awards-finalists/ Sixth Annual Wego Health finalist for "Best in Show-Twitter" for a health activist]<ref>{{Cite web|url=https://awards.wegohealth.com/nominees | title = WEGO Health Awards | last = | first = | date = 2017 | website = WEGO Health Awards|language=en|archive-url=|archive-date=|access-date=2018-09-09}}</ref> *2017, Certificate of Appreciation from the [[Open Medicine Foundation]]<ref>{{Cite news | url=https://www.omf.ngo/2017/05/27/may-26-meeting-with-tom-kindlon-in-ireland/ | title = May 26: Meeting with Tom Kindlon in Ireland | last =Open Medicine Foundation | author-link = Open Medicine Foundation | date = 2017-05-27|work=Open Medicine Foundation|access-date=2018-09-09|language=en-US}}</ref> *2018, Seventh Annual Wego Health finalist for "Lifetime Achievement" for a health activist<ref>{{Cite web|url=https://www.wegohealth.com/2018/09/05/presenting-2018-wego-health-awards-finalists/ | title = Presenting the 2018 WEGO Health Awards Finalists | last =WEGO Health | first = | author-link =| date = 2018-09-05 | website = WEGO Health|language=en-US|archive-url=|archive-date=|access-date=2019-07-24}}</ref> *2019, [https://www.wegohealth.com/2019/09/20/presenting-2019-wego-health-awards-winners/ Eighth Annual Wego Health winner for "Lifetime Achievement" for a health activist]<ref>{{Cite web|url = https://www.wegohealth.com/2019/09/20/presenting-2019-wego-health-awards-winners/ | title = Presenting the 2019 WEGO Health Awards Winners | last =WEGO Health | first = | author-link =| date = 2019-09-22 | website = WEGO Health|language=en-US|archive-url=|archive-date=|access-date=2019-09-22}}</ref> *2019, Eighth Annual Wego Health finalist for "Best in Show: Twitter" for a health activist<ref>{{Cite web|url = https://www.wegohealth.com/2019/09/06/announcing-the-2019-wego-health-awards-finalists/ | title = Presenting the 2019 WEGO Health Awards Finalists | last =WEGO Health | first = | author-link =| date = 2019-09-22 | website = WEGO Health|language=en-US|archive-url=|archive-date=|access-date=2019-09-22}}</ref> *2021, Selected as an Honorary Fellow of Doctors with ME <nowiki>https://twitter.com/TomKindlon/status/1409502007933669376</nowiki> <nowiki>https://doctorswith.me/home/about/honorary-fellows/</nowiki> *2023, (unsuccessfully) nominated for a honorary Sc.D. degree in Trinity College Dublin by people from a variety of backgrounds [scientists, medical professionals and other academics (44); journalists, broadcasters and politicians (7); advocates, patients, carers and representatives of charities and organisations (21); charities and organisations (14)] https://www.s4me.info/threads/tom-kindlon-nominated-for-an-honorary-degree-at-trinity-college-dublin.37428/#post-518044 ==Chronic Fatigue Syndrome Advisory Committee testimony== *May 2009, [https://wayback.archive-it.org/3919/20140324194827/http://www.hhs.gov/advcomcfs/meetings/presentations/kindlon_0509.pdf Written Testimony for May 2009 meeting]<ref>{{Cite web|url=http://www.hhs.gov/advcomcfs/meetings/presentations/kindlon_0509.pdf|archive-url=https://wayback.archive-it.org/3919/20140324194827/http://www.hhs.gov/advcomcfs/meetings/presentations/kindlon_0509.pdf | title = Tom Kindlon's Written Testimony: CFSAC Meeting May 2009 | last = Kindlon | first=Tom | date = 2009 | website = Health and Human Services|archive-date=2014-03-24|url-status=dead|access-date=|type=pdf}}</ref> *Oct 2009, [http://www.hhs.gov/advcomcfs/meetings/presentations/kindlon_1009.pdf Written testimony at Oct 2009 CFSAC meeting]<ref>{{Cite web|url=http://www.imet.ie/imet_documents/CFSAC-meeting-october-2009/Tom%20Kindlon.pdf | title = Tom Kindlon’s Written Testimony: CFSAC Meeting October 2009 | last = Kindlon | first=Tom | date = 2009 | website = imet.ie|type=pdf|archive-url=|archive-date=|access-date=}}</ref> ==Online presence== *[https://twitter.com/TomKindlon Twitter] *[https://www.facebook.com/tomkindlonmecfs Facebook - Tom Kindlon's ME CFS & related page] *[https://www.facebook.com/tom.kindlonpwme Facebook - Tom Kindlon-pwme] *[https://www.pinterest.com/tomkindlon Pinterest] *[http://myalgicencephalomyelitiscfstom.tumblr.com/ Tumblr] *[https://www.researchgate.net/profile/Tom_Kindlon2 ResearchGate] *[https://www.instagram.com/tomkindlon/ Instagram] *Mastodon https://disabled.social/@tomkindlon *Bluesky https://bsky.app/profile/tomkindlon.bsky.social *Threads https://www.threads.net/@tomkindlon *LinkedIn https://www.linkedin.com/in/tom-kindlon-0848b720/ == See also == * [[Pediatric myalgic encephalomyelitis and chronic fatigue syndrome]] * [[Severe and very severe ME]] * [[Doctors with M.E.]] == Learn more == * [https://awards.wegohealth.com/nominees/230 Wego Health profile description] ==References== <references> <ref name="Wilshire,et al, 2017">{{Cite journal | last =Wilshire | first = Carolyn | last2 = Kindlon | first2=Tom | last3 = Matthees | first3=Alem | last4 = McGrath | first4 = Simon | date = 2016-12-14 | title = 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|url=https://doi.org/10.1080/21641846.2017.1259724|journal = Fatigue: Biomedicine, Health & Behavior |language=en|volume=5|issue=1|pages=43–56|doi=10.1080/21641846.2017.1259724|issn=2164-1846}}</ref> </references> [[Category:People with ME, CFS, and/or FMS]] [[Category:Advocates or allies]] [[Category:Irish advocates or allies]] [[Category:PACE trial critics]] [[Category:Citizen scientists]]
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