UK ME/CFS Biobank hosting Unrest screening with livestreamed Q&A after, Thurs 2nd Nov

[Andy]

Screening being held at the London School of Hygiene and Tropical Medicine tonight with a livestreamed Q&A afterwards with Dr Charles Shepherd and Prof @Jonathan Edwards

 

[Jonathan Edwards]

Guess I'd better find a shirt without paint stains!

 

[Andy]

Here's your chance to see @Jonathan Edwards without any paint on him (presumably)!

 

[NelliePledge]

Shirt and jacket no sign of paint

 

[Joel]

thanks @Jonathan Edwards . I would thank Charles and Drs Cliff and Nacul but they are not members here. I hope they might consider joining, we can be a very welcoming bunch and it's good to have something positive going on in the UK.

 

[Sasha]

Somebody (memory, memory ) said that in a few days, the LSHTM CureME group will be announcing a Justgiving fundraiser for £10k to raise money to fund a study to be run using biobank samples (researchers will have to apply and have their application assessed). I think a stretch-goal may be £25k, if I've got that right.

 

[Sasha]

They're going to put a recording up at some point.

 

[NelliePledge]

Wondering if the live streaming is an Unrest thing or LSTM. Good if other medical school events are also live streamed I want to see the Sheffield one

 

[Esther12]

Here's your chance to see @Jonathan Edwards without any paint on him (presumably)!

I was too slow.

Looks like it will be available to rewatch soon:

 

[Helen]

I´m watching it now...

https://panopto.lshtm.ac.uk/Panopto/Pages/Viewer.aspx?id=3f756fa1-4190-454f-83a5-71a1063508bd

 

[Esther12]

I´m watching it now...

https://panopto.lshtm.ac.uk/Panopto/Pages/Viewer.aspx?id=3f756fa1-4190-454f-83a5-71a1063508bd

It's still live! We can hear them discussing their biscuits... gossip, gossip, gossip.

 

[Esther12]

Okay, it's no longer live (have they got spies here?!) but if you go back to the start, there's quite a long recording of someone laying out the table. It's nearly as good as the biscuit talk.

 

[Skycloud]

@Esther12 try 3 hrs 30 - begining of panel

 

[Trish]

I forgot when it was on, but from the link above I've just watched the panel answering questions. It starts at about 3 hours 25 mins into the recording. Good overview of what the biobank is doing. They will be doing a Just Giving Christmas appeal.

 

[Sasha]

Photos from the screening:

https://www.facebook.com/pg/mecfsbiobank/photos/?tab=album&album_id=1590864407627663

 

[Sly Saint]

This link still works and takes you straight to the discussion.
https://panopto.lshtm.ac.uk/Panopto/Pages/Viewer.aspx?id=3f756fa1-4190-454f-83a5-71a1063508bd

very interesting QandA. I didn't realise that the Biobank don't have samples from children. Another reason why Crawley is so keen on the MEGA biobank idea(?)

Question: Dr Jackie Cliff (Biobank researcher) said that they had not found evidence of the Natural Killer Cell problem; but in Unrest, Nancy Klimas says this is something she found......

Which is right? Have I misunderstood(?) @alicec @Woolie @Hip

 

[NelliePledge]

Can't remember seeing anything about the brief exchange between Jonathan Edwards ad Charles Shepherd about NICE in the Q&A at the bio bank. Seemed like they or at least Charles are aware of more positive developments to come. I can only think that either
- NICE are going to put interim wording in place about GET/CBT
Or
- the new guidelines committee is being constituted and there are some good biomedical people signed up

 

[Scarecrow]

@NelliePlede

re: NICE guidelines

The minutes of the Forward ME group aren't public yet but they'll be available here:
http://www.forward-me.org.uk/Minutes.htm

 

[Scarecrow]

@NelliePledge I still can't type!!!

See above

 

[alicec]

Question: Dr Jackie Cliff (Biobank researcher) said that they had not found evidence of the Natural Killer Cell problem; but in Unrest, Nancy Klimas says this is something she found......

Which is right? Have I misunderstood(?)

My understanding is that there is no consensus that there is low NK cell activity in PWME. There have been too many inconsistencies and failures to replicate results.

I believe there is an international study which is trying to replicate results but really I am not up with the latest.

@Jonathan Edwards should know more about this.