Prof Chris Ponting's stirring speech about reseach at Glasgow Millions Mission event

Prof @Chris Ponting made a cracking seven-minute speech at the Glasgow millions missing event, captured here

It really is worth a listen. He talked about a range of things including progress in science, that ME scientists are listening to legitimate questions and concerns about science and designing projects in dialogue with the community.

And he said it would be an absolute scandal if the best research proposal to study ME in the UK was not backed by public funds.

He summed up saying that scientific facts are showing ME for what it is — a series of devastating diseases, likely stemming from many causes.

Large-scale scientific projects working with the ME community can and will unlock the secrets of these diseases.

And his key point is that now is the time scientific funding and scientific action.
See what you make of it.

(Edited to include updated video just of Chris's speech, thanks to Mods: Mod edit: MEAction Scotland have shared a video that only features Prof Ponting's speech, see this here)

Code:

https://www.facebook.com/meactionscot/videos/2246803518782724/

 

He was also interviewed earlier in the day, which you can watch here,

about why we need much more research funding, his immune signature study and why he wants to see a huge genetic study with up to 20,000 patients.

 

Any way to view this if not on FB?

Thanks in advance.

 

Really great speech. Thanks for sharing.

By the way: this Millions Missing event in Glasgow seems very big and professional. It's like a music festival!

 

Thank you @Chris Ponting

 

Do they not work for you at all?

 

Thanks @Andy - on my cell phone I get sign in to FB,and nothing else - on my PC I get video - no sound - have the speaker on - oh well...

Checked online with MEAction Scotland - no other posting of this so far....

Thanks for your reply.

 

I was very moved by your words. Thank you so much @Chris Ponting !!!!!

 

Would really appreciate any videos like this being posted on YouTube as well, if possible.

 

Sometimes I need to click on the speaker icon to unmute the sound (some things auto-mute it).

 

On my PC it plays with no sound at first, but if you mouse over the icon of a speaker with an x next to it and click the x, the sound will then work. It just starts off with the sound disabled for some reason.

ETA: Cross-posted with Sasha!

 

The interview runs from about 4.45 to about 10.15.

 

Your instructions were better, though!

 

I am glad he’s attending events, doing research, cares for the community and nice he apologised but he’s just one man who had only just got involved so he hasn’t really anything to apologize for. The MRC has neglected ME for years and it has, MEGA or whatever the gene focus study is now called isn’t the only thing the U.K. could and should have done, even now we are mainly just focusing on one thing which has interest rather than trying to financially stimulate the field to attract other researchers from diverse backgrounds.

I can’t accept the now is the time stuff (although I appreciate it can have different meanings) or the excusing lack of effort in the past NIH style, whilst technology is certainly our friend now, how many years have Americans bring doing CPET CFS exercise studies with hardly a whiff of it in our exercise as treatment focused country, how many years has Peterson been trying too look at spinal fluid but nothing in U.K., how many years have PET scans been used in other illness whilst very little CFS brain imaging done in U.K. even basic epidemiology research regarding the severely ill and work on subgrouping to better draw up criteria and response to behaviour interventions hasn’t been done properly. We were all supposed to just get better, that’s the point, there was no particular effort to inspire people start to unravel ME because it was seen as unnecessary or invalid.

From this the genetics study application has yet to be submitted . Any news on the Karl Morten study submitted in January.?

 

No, no decision yet from the MRC.

 

Thank you @Chris Ponting. I have put it on my Facebook page. I post a lot about ME there but I have asked that if friends read/ listen to only one thing about ME, will they please make it this.

 

Thank you very much @Sasha, and @EzzieD for both your sets of instructions.

They worked; it was great to hear Professor Ponting's words about research.

Cheers!