Interview with Professor Chris Ponting of the University of Edinburgh

[@GemmaElwes]

As a PWME, since 1987, triggered by shingles, I want to thank you both from my tired heart for raising your voices for us

[@finette4444]

Thank you Chris and David. I like your analogy of the world where those of us with M.E.exist. I have expressed this in some of my poetry. It's like we live in a parallel world and nothing is the same. We feel isolated and forgotten.

[@medicalerrorinterviewspodc4294]

Thanks David and Chris --- if it takes lived experience, or witness a loved one's experience with MEcfs, to understand the medically embedded marginalization of ME funding / research / treatment, then c*v*d is increasing those with, and witness to, lived experience -- at some point the sheer number of those affected will reach a political tipping point and that will be the paradigm shift needed to disrupt the harm embedded in the current medical system.

[@FionaC1]

Sobering thoughts there. Thank you both for your continued work to change things

[@naomijo9633]

Thank you Chris and David.

[@heretoday788]

Very impressed with Dr. Ponting. Thank you for this excellent interview!

[@timoluetk]

Great interview, thank you both! 💙

[@rhyothemisprinceps1617]

Thanks so much! I look forward to reading the DecodeME results.

[@GailH-y6i]

You're sadly a fool, unfortunately. Your genome belongs to YOU and only YOU. HELLO DOLLY! Wakey wakey wakey

[@FionaEm]

I thought Chris' article was excellent! I wish more researchers would speak out about this aspect of ME, but I think they worry about losing funding opportunities. It's a hard slog for PWME to do advocacy ourselves. More help from ppl whose scientific knowledge gives us more gravitas with medical practitioners and media would go a long way 😊

[@EndersWorlds]

Thanks Chris. Good listen.

[@loisaddy8461]

Really interesting to listen to thankyou.

[@combabus]

Only firstborn males have been spared from ME/CFS susceptibility in my family. It is almost makes a case for primogeniture.

[@burgermind802]

I'm a firstborn male with ME/CFS.

[@combabus]

@@burgermind802 I can only speak for 3 gens of my fam. Mileage may vary.

[@GailH-y6i]

Ever had any in jections near your spine Epi dura vs. Sub dura pregnancy/delivery You people need to realize EU gen icists have never been more adamant about human modification Get out of your mental slumps and think

[@annettewilford7568]

Earth angels u guys . From an m.e sufferer( worse again since cv19)

[@GM-yq5wk]

How do you feel about epilepsy and why or how this affects epileptic patients? Is this connected?

[@nitelite78]

Just on the point about it being hard to understand how people can hypothesis mass psychological problems following covid. I totally agree with Tuller here. I find it highly perplexing that anyone can make observations of people en masse getting so sick and conclude the issue is psychological. I would use Dianna Cowern (AKA Physics Girl) as an individual example. Here we have a hugely successful, happy, just married human who got sick with Covid and now has developed ME. How anyone can observe people like this (of which there are many) and hypothesize psychological factors is absurd to me. The only thing we can say is that the people making such hypothesis are being irrational. Science starts with observation but those observations need to be rational. BPS observations just aren't rational.

[@annettewilford7568]

Its deliberate. End of

[@octrosie20]

I was impressed by Ponting's moral compass. He seems to be a very decent man. The misogyny observation is a good one although, as he alludes, is one we female patients take so much for granted as being the case that we can be forgiven for not giving much thought. It's an automatic default in medicine. Wrt the generation 'lag' in terms of where the science is, mmmm I think we're closer to a '2 generation' gap. My illness dates back to 1970 and things are no better now than then. Wrt DecodeME I'm one of those pesky patients that have issues with any protocol not using ICC, and although I know a questionnaire was added to try to 'draw out' different diagnostic groups it lacked rigour imo. So I appreciate Ponting's humanity. And I really want his project to have found 'something' but the looser the described cohort is the less I feel confident in what might be discovered. After 54 years of this disease, I hope you understand my cynicism.

[@GailH-y6i]

Females get pregnant. Are you seeing the big picture? Why the want for the human genome? Well hello Dolly!....or is it now Dicky?

[@gwilkins4617]

👍

[@annettewilford7568]

Gaslighting and abuse

[@GailH-y6i]

EUGENETICIST