ME/CFS Research Newcastle UK - Team Newton

[lansbergen]

The muscle paper has been rejected from a journal today - very frustrating process. We will turn it around and resubmit to another journal.

Damn

 

[Ruthie24]

Couldn't agree more Iansbergen!

 

[biophile]

I hope Newton is not too good for PLoS?

It annoyed me when Mikovits complained about having lots of papers no one would publish. Particularly when the sloppily rushed but highly influential XMRV-negative study which first cast doubt over the WPI's findings was published by PLoS.

Better to have it published in PLoS than not at all or with a major delay (some journals take over a year to publish).

 

[Firestormm]

Programme Grant Award to Newcastle University

http://bit.ly/1kJVzV1

The trustees of ME Research UK were at Newcastle University Medical School on May 16th 2014 for a site visit to hear about progress of the research studies they are funding, and to unveil a plaque marking the charity’s latest award – a Programme Grant to Prof Julia Newton. The funding awarded will be used to advance scientific investigation into severely affected ME/CFS patients (read more http://bit.ly/S2yeDx), and to pump-prime smaller ‘proof-of-concept’ or early experimental investigations.

As our Chairman Dr Vance Spence (pictured with Julia) said, “ME/CFS is an ‘orphan’ illness in terms of clinical recognition and research, and Prof Newton leads one of the most successful and dedicated teams researching the condition anywhere in the world. The Programme Award made by ME Research UK is a measure of our confidence in the research undertaken by Julia and her impressive team of senior collaborators at Newcastle University.”

 

[Firestormm]

Received 3 June 2014

Dear friends.

A new step in our much appreciated project Science to Patients is being taken.

We are proud and happy to be able to mail you the links and transcripts of the first two of seven short webinars with Dutch subtitles of prof. Julia Newton of Newcastle, UK, in which she introduces herself and talks about neurocognitive problems in ME:

43. Introduction - experience with ME
http://youtu.be/6lJJApibUAY

44. Neurocognitieve problems in ME

Why new? Because prof. Newton, who also spoke during the 9th Invest in ME conference in London last Friday, is the first English speaking researcher within our project to deliver short talks on topics patients rose. We do hope to find and invite many more of the kind who will follow after her, so that the whole ME-community will be provided with the latest scientific developments by top-scientists for years to come

We are also attaching a short biography of prof. Newton, which you may use to introduce her talks on your own website or fb-wall. We once more want to do a strong appeal on all of you to share these talks with as many as possible, as to empower patients all over, in their strive for recognition of the severity of their symptoms and the bitter reality of their illness

Chat Session

Prof. Newton has been so kind as to agree with answering English questions from all over for half an hour via chatwing (http://chatwing.com/mecvsvereniging.wvp) on Fridays 20th June and 1st August, both at 5 p.m. ECT. Please mail to wvp@me-cvsvereniging for any questions and suggestions.

We wish you pleasant and informative reading and watching the next two months.

Best wishes to all of you
on behalf of team Science to Patients
of the ME/cvs Vereniging, the Netherlands
Rob Wijbenga/coordinator

Biography and Transcripts Attached

 

[Allyson]

Damn

yes very frustrating muscle research is so important - hang in there @lansbergen
ALly

 

[Firestormm]

Guidance for GPs and other health professionals on autonomic dysfunction fatigue in ME-CFS

Published on June 12, 2014 by Action for ME

Professor Julia Newton (Newcastle Hospitals NHS Trust, Dean for Clinical Medicine, Newcastle University), on autonomic dysfunction and fatigue in ME/CFS.

The presentation draws out practical guidance for General Practitioners, Practice Nurses and Allied Health Professionals, based on recent research evidence - followed by a question and answer session for webinar participants.

 

[MeSci]

Sorry - I don't have 45 mins to spare! Can someone summarise it?

Guidance for health professionals from Julia Newton sounds great. Hope it overrides that of Clare Gerada and Trudie Chalder eek

(Probably a bit over-optimistic there)

 

[Firestormm]

Dear reader.

We are happy to send you the link to the newest webinar of prof. Julia Newton of Newcastle, UK in the series Science to Patients. In this webinar prof. Newton talks about sleep, and more specifically about
sleep disorders in ME, bodily functions involved in sleep disorders in ME, how to deal with sleeplessness and the cause of the extreme sweating at night many ME-patients complain of:
http://youtu.be/75hpNfhau9A

Moreover in attachment you wil find the transcript of this webinar, as well as of a Q&A-session prof. Newton granted on July 3, 2014 to a Dutch speaking audience (so don't mind the at times not too perfect English in the questions).

You may use all these materials at your own discretion, mentioning their source www.me-cvsvereniging.nl.

Please share them with all the members of your group or the readers of your site or fb-wall, or on twitter.

Kindly note that on Friday 1 August there will be a last Q&A-session with prof. Newton from 5:00-5:30 pm CET

Positive criticism and input for future colleges and questions for sessions are most welcome at WVP@me-cvsvereniging.nl

With best wishes to all of you

Team Science to Patients
of the ME/cvs Vereniging, the Netherlands
Rob Wijbenga, coordinator

And the latest from Newcastle's Facebook Page:

ME / CFS Research Newcastle
Yesterday at 12:56pm ·
The BMJ open are very happy - as the paper is one of their most downloaded ever - so hopefully this will encourage them (and others) to accept research in ME & PoTS more readily.
The MRC study has now finished recruiting - so we are in the process of setting up mechanisms to analyse the huge amount of data collected - which is exciting.
The second MRC study is collecting blood samples from the clinic - so that too is all going well.

 

[Bob]

Good news, and interesting, re the BMJ article being one of the most downloaded.
Thanks for posting Russ.

 

[Firestormm]

NEWCASTLE RESEARCH CONFERENCE IN NOVEMBER - DATE FOR THE DIARY PLEASE

The ME Association and ME North East will be co-sponsoring a research conference at Gosforth Civic Hall, Newcastle upon Tyne, on Tuesday, November 4.

The event will showcase the varied work of the ME/CFS research unit at Newcastle University and also feature a talk by Professor Stephen Todryk of Northumbria University who is leading a study into immune system responses in ME/CFS, particularly after infection, which is being co-funded by the MEA and Action for ME.

All will be welcome and the cost for admission will be £5. For the moment, this is just a date for you to pencil in to your diaries. We will give out more information as we get it.

 

[Hell...Hath...No...Fury..]

Does anyone from PR go to these conferences? I'm usually at the newcastle ones

 

[Mark]

Does anyone from PR go to these conferences? I'm usually at the newcastle ones

It would be great if we could have more people attending conferences like these and reporting back for PR, perhaps in the form of a short article (it certainly needn't be as long as one of mine!). We can help to make any necessary arrangements and also help you prepare and write the article(s), and we can pay for article(s) and also pay some expenses for attending the conference. So if anyone's ever interested in doing this, please contact me.

Cheers,

Mark

 

[Hell...Hath...No...Fury..]

I'd be willing to do the newcastle one as long as my dictaphone doesn't cock up on the day

 

[Mark]

I'd be willing to do the newcastle one as long as my dictaphone doesn't cock up on the day

Cool. I've started a conversation with you; hopefully we can work something out.