Quotes from scientists who appreciate the support of PWME

[Diwi9]

At the panel discussion after a screening of Unrest tonight at Berkeley, Dr. Davis mentioned that the $5million donation to OMF by the Pineapple Fund was in part driven by patients who went online and made the case. The video recording should be up in a few days for a direct quote, it is made during his opening comments.

 

[MSEsperanza]

Just thought this thread could do with a bump and an update -- sorry not able to do the latter myself

 

[MSEsperanza]

At least would like to add these individual endorsements to @Tom Kindlon

Last year I had the idea to nominate Tom Kindlon for an honorary degree at Trinity College Dublin, where he was studying for a degree in mathematics before severe ME/CFS forced him to drop out.

Endorsements from supporters of the nomination in no particular order [...]

Brian M. Hughes
Professor of Psychology, University of Galway:

"Tom Kindlon is an immensely impactful individual who has devoted his abilities to helping others. A precocious scholar whose formal academic career was tragically cut short by illness, he has never wavered in his dedication to advancing the scientific and medical understanding of ME/CFS, the condition he himself has lived with for thirty years. His knowledge of the area is exceptional and his appreciation of the relevant empirical and statistical methods is truly immense. Tom is also a thoughtful and considerate individual, passionate in his commitment to the most vulnerable. That he has accumulated such renown despite the severest physical debilitations is genuinely inspiring."

Brian M. Hughes
Professor of Psychology, University of Galway

Chris Ponting
Professor of Medical Bioinformatics, University of Edinburgh:

“Tom has done so very much for people with ME, a disease that took so much from him. So it’s timely and well-deserved if he were to receive this honour.”

Chris Ponting
Professor of Medical Bioinformatics, University of Edinburgh

Dr Vance Spence
Co-founder of ME Research UK:

"I have personally known Tom Kindlon for over 20 years and I endorse his nomination for an honorary degree at Trinity College Dublin. The award would be a recognition of his outstanding contribution to people suffering from myalgic encephalomyelitis (ME), indeed, the illness has severely impacted Tom's own life, contracting ME while studying for a degree in mathematics at this very university. Tom has provided unwavering support to many individuals with ME within Ireland and indeed to a much wider global population of sufferers. His dedication is rooted in a genuine compassion for people who, like himself, have to cope with the unique struggles that their illness presents.

Tom has also made connections with many academics and researchers across the world. He positioned himself between academics and an online community of patients, assisting with research fundraising and also providing an invaluable service by interpreting and disseminating complex research data back to a population of people desperate for new developments. I was one of the researchers who benefited from Tom's generosity; I struggled to get research grants for what is, and remains, a contested illness but I was eternally grateful to Tom and others for their fund-raising efforts allowing me to complete several projects and to publish in peer-reviewed journals.

I firmly believe that Tom Kindlon is a deserving candidate for an honorary award. His contributions have made a real difference for an incalculable number of ME patients and, hopefully, he has set an example for others to follow. Recognising Tom's achievements would not only validate his own efforts but act as a source of inspiration for others who feel similarly disenfranchised.

Thank you for considering this nomination. I am confident that by honouring Tom the university will not only celebrate his unwavering commitment to improving the lives of an especially vulnerable disabled group but also shed light on a greatly misunderstood and enigmatic condition."

Dr Vance Spence
Co-founder of ME Research UK

For many more, see original thread.

 

[rvallee]

During a US senate budget hearing on May 23, Monica Bertagnolli, NIH director, said:

"I want to say about Long COVID and ME/CFS: we are so grateful for our partnership with the people that are affected by this. They have taught us over the last two years what we needed to do, now we just need to deliver for them."

https://twitter.com/user/status/1793765700886241724

 

[Sean]

If you really mean that, Director Bertagnolli, then your first step must be to immediately remove Wallit from his leadership of any ME/CFS, LC, and GWI programs.

Otherwise it is just more empty words from the top.