Endorsements continued…
“Tom has been a beacon of light for many. He has been a spokesperson and advocate and has worked to ensure that the voices of people with ME are listened to and not forgotten. He has created a sustained social media presence that has benefited the whole ME community and recognition for this would be an honour for him which he will undoubtedly share with the community.”
Sonya Chowdhury
CEO Action for ME
“I am in a unique position to endorse Tom for an honorary degree as I span the two worlds of patient advocacy and professional research into ME/CFS. My daughter has been ill with ME/CFS since the age of 17 and, like many with ME/CFS, has been abused by the system of medical care, despite my best efforts as a medical school professor.
It has been extremely difficult to negotiate and make progress in both worlds for me, and thus one can only be in awe of the accomplishments made by Tom. To be a patient and respected for both advocacy and research is a highly rare accomplishment. I have known Tom for somewhere between 20-30 years, and I consider ourselves as colleagues. Whenever I have a query of work being performed on the other side of the pond, I ask Tom and promptly get a response. I maintain ties to ME/CFS professionals in Europe, Asia and Australia. They all have degrees after their name. Tom has performed the same work as these other colleagues. I ask, "isn't it time to recognize Tom's work for what it is, and award him a degree for the work he has done and continues to do?" Clearly the awarding of an honorary degree is but modest recognition of the accomplishments of this extraordinary man!”
Kenneth J. Friedman, Ph.D.
Adjunct Associate Professor of Medicine, Rowan-Virtua School of Osteopathic Medicine, USA
“I am writing to support the proposal to nominate Tom Kindlon for an honorary degree at Trinity College Dublin.
I do so in my position as Medical Adviser to the ME Association, where I provide clinical information for patients and health professionals and supervise all the research which the charity funds.
I have known and worked with Tom Kindlon for over 20 years.
During this time, and despite his own ill health, Tom has applied high quality academic vigour to the various papers he has authored or co-authored on the subject of ME/CFS as well as providing critical and constructive analysis of other research studies.
He has also played a key role in providing high quality information and support to people with ME/CFS in Ireland and creating educational resources for health professionals through his involvement with the Irish ME/CFS Association.
An honorary degree would provide well deserved recognition for everything he has achieved.”
Dr Charles Shepherd
Medical Adviser to the ME Association
“Since before I had internet access Tom Kindlon's newsletters, both informed and offered hope to me personally, through the first decade of suffering with severe M.E., and distributing information directly to patients and carers is only one facet of his incredible work! As I learnt more about this debilitating disease, through Tom, he was my inspiration to form a patient charity in Northern Ireland in 2011.”
Joan McParland MBE
Founder of the Hope for ME & Fibro charity in Northern Ireland
“Tom is highly organised and professional, and it is an injustice that he missed out on his maths degree due to ME/CFS. He has my absolute support in gaining an honorary degree. With academic rigour, he has made a significant contribution towards improving the lives of patients with ME/CFS.”
Miss Nina Muirhead BA(oxon) BMBCh(oxon) MRCS DOHNS MEd PGDipDerm
“Tom Kindlon is a leader in the global ME/CFS community; he has worked to improve the wellbeing of people with ME/CFS for several decades. He was a key person in initiating patient-led efforts to take a scientific approach to analyzing ME/CFS research. This resulted in publications highlighting substantial flaws in studies claiming to provide evidence for certain treatments and in the documentation of the harms these treatments caused. His contributions to ME/CFS literature and advocacy have helped to fundamentally change the understanding of the disease and its clinical care.”
Committee of Science for ME forum
“Not only has Tom Kindlon been a long-standing and dedicated advocate for people with ME, he has also made numerous and significant contributions to research in the field, both nationally and internationally. I worked closely with Tom on a project examining the economics costs of ME in Ireland and his deep knowledge and thoughtful contributions were key in incorporating the patient voice in the research and in interpreting our results and findings. I strongly believe that Tom would be a highly-deserving recipient of an honorary degree from Trinity College Dublin.”
Dr. John Cullinan
Professor in Economics, University of Galway
“As an organization that advocates for ME/CFS patients at the European level, we fully endorse the nomination of Tom Kindlon for an honorary degree at Trinity College Dublin.
We think Mr Kindlon would be most suited for this degree. His detailed analysis of the scientific literature and advocacy has empowered patients and strengthened evidence-based medicine in the ME/CFS community. This is particularly important for an illness of which the pathology is poorly understood and where patients are desperate to alleviate their suffering.
Kindlon’s commentaries, papers and insights have ignited an important change in the treatment of ME/CFS that had worldwide implications. Prestigious medical institutions such as the CDC and NICE have changed course rather drastically in response to the reports of harm following rehabilitative treatments. Much of these changes can be brought back to the work of Kindlon, in particular his re-analysis of the PACE trial which showed that treatment effects were overestimated.
Kindlon’s work has important implications that transcend the ME/CFS field and can be seen in recent guidelines on Long Covid and other post-infectious illnesses. Mr Kindlon was a pioneer in a heavily under-researched field, the importance of which is now recognized much more widely, in the wake of Long Covid. Despite the severity of his illness, he has made an invaluable contribution to society.”
The European ME Coalition
“Tom Kindlon inspired me to become a patient advocate and start an ME/CFS charity in Belgium. From Tom, I learned how important it is to study the scientific literature and analyse the raw research data. His analysis of the PACE trial is a prime example of how patient advocates can make a meaningful contribution to the literature.
At the same time, Tom always stresses the importance of uniting patients, creating a community, and raising funds to stimulate more scientific research. He empowered patients worldwide to actively participate in the search for a cure for ME/CFS. His optimism and persistence is contagious.”
Michiel Tack
ME/CFS advocate
"Tom's tireless work for the ME community – especially in providing useful scientific information – has been instrumental in making the ME community so scientifically literate."
Adam Lowe
Member of the NICE Guideline committee for ME/CFS
“It’s very unlikely that hundreds of thousands of people around the world would be benefiting from better and safer clinical guidelines today if it wasn't for Tom.
His published work set the standard, and he persuaded many of us to join him in engaging rigourously with scientific research. Above all, Tom changed the terms of the debate about treatment, focusing it on the quality of the scientific evidence and what conclusions could safely be drawn about the effectiveness of existing treatments.”
Simon McGrath
Independent ME/CFS researcher and advocate
"Tom is a courageous, important and authoritative voice both for those who suffer with ME and those who want to understand the impact of this awful and misunderstood illness."
Sean O'Neill
Bereaved father; Times journalist
“Although I have never met Tom in person, he is one of the best known activist in the ME community. His international efforts to provide information and services to patients and to his ongoing efforts to update researchers on the latest scientific discoveries make him a most worthy candidate for this honorary degree.”
Leonard A. Jason, Ph.D.
Professor of Psychology, DePaul University, USA
"I am pleased to support Robert Saunders' nomination of Tom Kindlon for the award of this proposed honorary degree by Trinity College Dublin.
I have worked with Tom in the past and found him to be most generous with his time, energy and knowledge.
Despite living with the severe limitations imposed by the illness myalgic encephalomyelitis (ME) for nearly thirty years, Tom continues to share as much information about the illness as possible with the wider patient community. His work as Assistant Chairperson of the Irish ME/CFS Association over many years has provided an invaluable resource to both the local and the international ME community.
Tom's analysis and criticism of much of the scientific research concerning this illness has benefited the ME community enormously. His work has contributed significantly to the public understanding of ME and improved the outcomes of many advocacy initiatives and institutional reviews.
Academic and advocacy work are draining even for those who enjoy good health. For those who battle daily with a chronic, stigmatised and underfunded illness, it is a labour of love which defies description. The award of this proposed degree would go some way towards recognising the achievements of a highly respected and talented member of the international ME community."
Valerie Eliot Smith
Barrister and Visiting Scholar, Centre for Commercial Law Studies, Queen Mary University of London
“Tom Kindlon has been an unwavering beacon of knowledge and support within the ME/CFS community for many years. His diligent efforts to keep patients, caregivers, and researchers informed through his advocacy, blogs and gathered postings about the latest publications and research projects have been invaluable. As the Assistant Chairperson of The Irish ME/CFS Association, Tom has demonstrated exceptional dedication and leadership. His tireless advocacy and commitment to enhancing the understanding of ME/CFS make him a deserving candidate for an honorary degree. Tom's contributions reflect the very essence of community service and the advancement of medical knowledge, resonating deeply with the values we uphold at Open Medicine Foundation. We wholeheartedly support the recognition of Tom Kindlon's profound impact on the ME/CFS community through an honorary degree.”
Linda Tannenbaum
CEO and Founder of Open Medicine Foundation, USA
“It is undoubtedly the case that Tom Kindlon’s devoted, skilful, and determined work on behalf of all those affected by ME/CFS has enriched the debate on numerous issues vital to the lives of those affected by the disease – not least in the fields of research but also in public engagement and awareness raising. Tom’s detailed knowledge of issues has formed the bedrock of transformative change e.g. the re-analysis of the PACE trial resulted in fundamental policy shifts in the UK and beyond but all has been achieved from a position of knowledge and with an authoritative voice.”
Stewart Walker
Operations Director, ME Research UK
“I personally do not know Kindlon and can only judge him through the achievements he has demonstrated, most profoundly as an influential patient voice with many inputs to papers and public policies on ME/CFS treatment and patient care. I really think his work has made a great impact on the whole research field and the attitude to and handling of ME/CFS patients. I was not aware that he had so severe ME/CFS, but knowing that now places his dedication and efforts even higher in my understanding. I believe he fills the criteria for the honary award very well and will cordially support the initiative!”
Olav Mella, MD, PhD
Emeritus Professor of Oncology, Haukeland University Hospital, Bergen, Norway
“We are more than happy to support this nomination. Tom has been an important source of reliable information for WAMES for the 20+ years we have been in existence.”
Welsh Association of ME & CFS Support (WAMES)
“I wholehearted, support this proposal to honor Tom Kindlon. He has, after contracting ME, dedicated much of his life to supporting and advocating on behalf of ME sufferers, for many years.”
Simon Lawrence
Chairperson, 25% ME Group – support for severe ME sufferers, UK
“Despite not knowing Tom Kindlon personally, I am convinced that his nomination for an honorary degree at Trinity College Dublin, is a just recognition of his unwavering contributions for high quality research in ME/CFS. His work also provided evidence to change and improve the health services provision for people with ME/CFS. I am honoured to endorse his nomination for being awarded with an honorary degree by the University of Dublin.”
Dr Eliana M Lacerda
Clinical Assistant Professor, London School of Hygiene and Tropical Medicine, UK
"When I began investigating flawed research into ME/CFS, and in particular the PACE trial, Tom Kindlon was an invaluable guide. As I read more and more, it seemed Mr Kindlon had responded formally to each problematic claim or journal article on the matter with polite, cogent letters that easily cut through much obfuscatory and often absurd argumentation and theorizing. I was amazed that he was able to conduct this oversight function with such rigor and intelligence, consistently over almost two decades, despite his severe illness. Mr Kindlon and his impressive body of work have been an ongoing source of inspiration. He richly deserves this honor."
David Tuller, DrPH
Senior Fellow in Public Health and Journalism, University of California, Berkeley, USA
“It is extraordinarily difficult for most people to understand the personal sacrifices and enforced deprivations endured by an ME patient like Tom Kindlon, in order to make such an outstanding contribution to clinical research, education and funding for research into ME/CFS. Severe ME patients are deprived of, or must restrict things that most people consider essential – social life, family life, physical activities and even aspects of personal care – in order to focus their very depleted energies, over time, on achieving something amazing in the wider world. It also takes great courage, optimism and support from others. This process isn’t without risks, as is demonstrated by the severe deterioration in health experienced by some who have undertaken such attempts. As a carer for my daughter, severely ill for decades with ME, I wholeheartedly support this nomination.”
Natalie Boulton
Project Lead, Wellcome Public Engagement Fund Award: Dialogues for a neglected illness, UK
“As an Irish health professional with severe ME/CFS, finding Tom Kindlon and the Irish ME/CFS association was the turning point in accessing good quality information about the illness. His publications in peer-reviewed scientific journals are impressive in their own right – insightful, well-reasoned and restrained. It is outstanding that Tom has contributed meaningfully to the scientific literature on his own illness, despite not having been able to complete his third-level education due to that illness. The regard in which Tom is held by the scientific community is exemplified in a Lancet editorial discussing an ME/CFS paper, where Prof Daniel Clauw of the University of Michigan referenced three of Tom’s publications:
https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(17)30577-9/fulltext#
ME/CFS patients not just in Ireland, but globally, have benefitted from Tom’s competence, professionalism and altruism – qualities that Trinity College Dublin would be immensely proud of. Without his disability, I have no doubt that Tom would have achieved multiple higher degrees and excelled in his chosen field. With his disability, Tom has become a leader and exemplar of what can be achieved when patients are involved in research: the bar is raised.”
Karen D Kirke
Speech & Language Therapist, Graduate and Foundation Scholar of Trinity College Dublin
“Tom Kindlon’s campaigning, research and communication skills are outstanding and thoroughly deserving of an honorary degree from Trinity College Dublin. Tom has worked unrelentingly for many years for other people with ME and inspired others to become involved. He has been exceptionally generous with his time and energy and is an invaluable source of information for people suffering with ME.”
Denise Spreag and Janet Sylvester
#MEAction UK and #MEAction Scotland
“Invest in ME Research proudly supports the nomination of Tom Kindlon for an honorary degree at Trinity College Dublin.
Despite facing personal and severe challenges with myalgic encephalomyelitis (ME), Tom has demonstrated exceptional commitment by dedicating his life to raising awareness and to counter misinformation about the disease.
His selfless efforts have not only positively impacted individuals affected by the disease but have also contributed significantly to dispelling misconceptions within the healthcare community about the disease.
Tom has always been extremely supportive of the charity and his steadfast backing for Invest in ME Research has been extremely valuable in our efforts to develop solid foundations for biomedical research with our conferences, our research funding, our European collaborative network initiatives and the development of the centre of excellence for ME.
Tom is a true advocate, and we believe his unwavering dedication makes him a deserving candidate for this prestigious award.”
Invest in ME Research, UK
"Tom Kindlon has done some very important academic research that has served to demand increased rigor in the field of complex chronic illness research."
Michael VanElzakker, PhD
Harvard Medical School & Massachusetts General Hospital, USA
“There is no doubt in my mind Tom deserves this award. His intellectual rigour has played a major role in improving understanding of ME/CFS and in particular recognition that the previously favoured approach was flawed and potentially harmful. His generosity, patience and knowledge have also meant that he has been an inspiration, support and counsel for many, including me.”
John Peters
Patient for 38 years, Wales, UK
“Mr Kindlon is a scholar with a precious perspective; one who lives with the disease he researches. The endurance of balancing the needs of living with an energy-robbing chronic disease with his prolific work as a researcher, educator, and advocate is a perfect example of living the Trinity College Dublin’s motto. Countless people living with myalgic encephalomyelitis, clinicians, supporters, allies, and advocates worldwide have benefited from his work. It is through this body of work that Mr Kindlon has embodied the mission and vision of TCD, making him worthy of the honorary degree for which he has been nominated. Thank you, on behalf of an entire global community, for giving his nomination full consideration.”
Todd E. Davenport, PT, DPT, PhD(c), MPH
Professor & Vice Chair, Department of Physical Therapy, University of the Pacific, USA
“Tom has the insightful mind of a research statistician, with the benefits of years of working with relevant data and scientific studies. He provided extremely important feedback for my own work in ME/CFS research when I needed to communicate about its strengths and weaknesses to science journalists and the lay public. His mathematical insights had a direct and positive impact on the outcome of my analysis, and therefore on the quality of science reporting across the United States.”
Rebecca Goldin, PhD
Professor, Mathematical Sciences, George Mason University, USA
