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@dave30th Thanks for your reply. Yes that newsletter #3 is bizarre and inappropriate. I had not seen it before but looked it up today. Quite honestly I was shocked when I read Downing Street. Could not quite believe it ....but I suppose nothing is unbelievable with this lot. The research...

https://www.s4me.info/attachments/participantsnewsletter3-pdf.4295/ Participants’ newsletter 3 posted by @Sarah has 6 pages, and page 3 seems to be identical to the newsletter earlier on this thread. 10 Downing Street is there.

Thanks @Trish. I jumped to page 251 and found the detail about the newsletters. Issue 3 ( Dec 2008) which is the one posted earlier in the thread was quoted. There were quotes from a doctor and 6 participants which match our copy but no reference to the 10 Downing Street comment. Odd??

Thanks @Dave 30th. I understand absolutely that the Pace trial findings are completely invalid. The intricacies of this are fascinating. Downing Street- I never thought it went as far as that. Totally shocking. Just don’t know what it means. Who authorised it? Could I ask you to clarify my...

@Esther12 @Sasha Thanks. Need to check out the links. @Sasha Can you give me a link to DTuller and Wiltshire’s comments. For myself have never read of 10 Downing Street as far as I remember. I am just so suspicious of Wesley’s influence but not wise to overegg it.

@rvallee That newsletter could be dynamite. Is there any way you could help us identify who/ where/ when it was sent? The veracity needs to be solid. Unless absolutely true, and able to be shown to true, using it could rebound on the community and confirm the negative perceptions of us...

Unbelievable that this should have been sent out. Truly stunned. Was the comment from Downing Street authorised. Who by? I haven’t tried to look up the link at the bottom. Anyone know if this sort of accolade is usual?

@Sasha. Thanks for finding Saturday’s agenda. It was beyond me last night.

This is an 8 hour livestream of Saturday’s symposium at Stanford. The plan is for the separate lectures to be divided and put on the OMF website ASAP but this is available in the meantime. Somewhere earlier in this thread was the day’s schedule-order of speakers. Sorry, I don’t have the energy...

https://www.ncbi.nlm.nih.gov/pubmed/10721121 I note it’s from scientists in the biochemistry department at Oxford. We had scientists in the UK. What happened? ETA: somehow the post did not transfer fully. Please see @Trish For abstract in short sections. #27

Am not a scientist but feel that Dr Davis and collaborators seem to have assembled what looks like a very impressive team.

https://www.omf.ngo/collaborative-research-center-harvard/ Just had a google and names came up for both Nottingham and Birmingham researchers. See link above. Eta: bios of all the researchers provided. UK ones near the end of the list.

I wrote myself a little note from one of the speakers when watching the Stanford symposium lectures yesterday that ‘infection may bring about a cure’.!!!

I think Ron suggested that we may have fewer viruses because our immune systems are up regulated. Please correct me if I got that wrong. I watched Dr Phair and Ron afterall, and learnt a bit about the nature of science which felt exciting. Don’t ask me to repeat it. I didn’t understand Dr...

I watched Drs Fluge and Hanson with a rest between them. Utterly loving Dr Fluge’s talk where he moved between talk of the patients and the data. Didn’t understand a lot but someone?? talked of reducing carbs with benefits. I think it may have been Dr Fluge but he was not recommending it as a...

This thread has been split from the Stanford Community Symposium 2018 thread. (Copied post) I watched Drs Fluge and Hanson with a rest between them. Utterly loving Dr Fluge’s talk where he moved between talk of the patients and the data. Didn’t understand a lot but someone?? talked of...

Hasn’t a paper been submitted, I think on red blood cells? Struggling to remember where that was said. I think- in the bio of one of the new scientists working on ME. ETA: it mat have been in the bio of Dr Mohsen Nemat- Gorgani, but this is from an unreliable memory. If a paper has been...

Thanks @Suffolkres Sounds as if Nice had not fully thought through the selection of stakeholders process. I think I remember at least a couple of other local groups being selected but am not sure if they are still there. I think the issue of getting CBT and GET removed is such a crucial...

I have a vague recollection that there was some confusion about this issue. Were there one or two local ME groups accepted and are they now still stakeholders? I really can’t remember the details. Can anyone else? The local group I belong to was not accepted. I think the process of revising...

https://valerieeliotsmith.com/2018/09/28/karina-hansen-news-a-battle-with-nice-the-uks-national-institute-for-health-and-care-excellence/#comments Valerie describes how her organisation “ Law and Health” was first accepted then turned down as a stakeholder in the Nice review process. EDIT...