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
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.
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.
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
I´m watching it now... https://panopto.lshtm.ac.uk/Panopto/Pages/Viewer.aspx?id=3f756fa1-4190-454f-83a5-71a1063508bd
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.
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.
Photos from the screening: https://www.facebook.com/pg/mecfsbiobank/photos/?tab=album&album_id=1590864407627663
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
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
@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
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.
