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ME/CFS Research Newcastle UK - Team Newton

Firestormm

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
I just wanted to start a thread where I can keep us all up to speed with the ongoing advocacy and research that is being performed by Professor Julia Newton and her team 'up' in Newcastle.

You can of course follow developments - as I do - by 'liking' their Facebook page, here.

26 September 2013

"We had a research meeting last week where our friends from Northumbria University presented the results of our ongoing studies.

We are now having these Faculty meetings every month and have applied to the university for status as a University Research Centre.

We went to Southampton last week to talk to the Neurosciences Group which was a great meeting and a number of possible collaborations have come from that.

Next week off to BACME to talk about 'managing autonomic problems: translating research into clinical practise'.

The week after its a talk to the Sunderland patient group (they are interested in our rituximab trial for fatigue in PBC and whether it might apply to ME) and then we have a visit from Action for ME to Newcastle (to see the work we are doing) and in the same week we are talking at the Action for ME AGM.

Then the most scary talk is the Minimedical School where we are talking to sixth formers interested in applying for medical school - 500 have registered for the session that Jason and Julia are doing.

Busy busy busy ....

These opportunities to talk about how terrible the disease ME is, and how it destroys lives, and how research can change our understanding and management of the disease are valuable - as they allow us to change perception and if it improves the experience of patients when they see doctors and empowers sufferers - then its an important part of our work."
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Marco

Marco

Grrrrrrr!
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2,386
Location
Near Cognac, France
Given that autonomic problems have been consistently reported in recent research and are associated with serious long term health consequences, autonomic testing and appropriate treatment is probably the best 'palliative' treatment you could provide for us while the condition remains 'complex'.

Don't hold your breath;)
 
Firestormm

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
ME / CFS Research Newcastle · 1,068 like this
7 hours ago ·

Thanks to Eric for highlighting the review just published.

This was a real added benefit. Cara the main author is an undergraduate student at Newcastle University doing a Biomedical Sciences Degree who contacted us wanting to work with us over the summer holidays.

She applied for a Wellcome Trust Vacation Scholarship (really competitive) which she won - and did a fabulous job during her 8 weeks in the lab. She now wants to come back and work with us to do a PHD. This is one of the added benefits of us having a team of researchers here.
Off to do a talk at BACME tomorrow in Milton Keynes - talking about 'managing autonomic symptoms in CFS - from research into the clinic'. Then in a couple of weeks we have a very very scary experience ahead of us. We have been asked to talk to 500 sixth formers for minimedical school !
We also have Ollie starting a masters project - he is a medical student taking a year out before he qualifies .. All good fun...
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Firestormm

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Website advertising a conference that Newcastle are attending made an error which was quickly rectified following Newcastle's prompt intervention:

Hi - I just saw the medineo ad for you upcoming CFS/ME conference. The heading for it is "A must for any healthcare professionals working in the field of Personality Disorder" . Could you please explain?

http://www.medineo.org/newsletter/Newsletter_CFS_2013_web.html
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ME / CFS Research Newcastle · 1,079 like this
October 11 at 7:30am ·
Thanks Leela - we are appalled at this link - and have asked the company to remove it ASAP. The conference is being organized by a private company who are doing all the running around. We have explained that we will not be associated with any suggestion that CFS/ME is not a physical, biomedical illness.
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Medineo Meuter
Apologies to everybody. This link has not been posted by ourselves to this facebook page. Thank you for pointing this out. We have been in contact with the webmaster of this page asking them to correct the title. This title refers to a previous conference, which has nothing to do with this current event.
Regards, Medineo Meuter
Unlike · Reply · 3 · October 11 at 12:21pm
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Doesn't it make you wish that others were as supportive? :)
 
Firestormm

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
ME / CFS Research Newcastle · 1,082 like this
28 minutes ago ·
Today was the launch event for the Northern Association for Persistent Physical Symptoms - a great event in Gateshead, over 70'delegates and speakers covering lots of different areas. Prof Newton talking about fatigue and autonomic dysfunction, Jason Ellis and Zoe Gotts talking about sleep, Kate Hackett about Sjogrens syndrome and Karen Heslop breathlessness and COPD.
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I'm not too sure what that event was all about. I had read some people's concerns about it. Would need to take a closer look...
 
rosie26

rosie26

Senior Member
Messages
2,446
Location
NZ
You got me laughing PeggySue, everytime I head into my facebook I feel like exiting straight away. Like you said " so disjointed" I don't get it, !!! x
 
Shell

Shell

Senior Member
Messages
477
Location
England
Esther12 said:
Saw this on Newton's talk:



https://twitter.com/NAPPSymp/status/390404915467534337

Event does look politically dodgy to me, but that's only a hunch.
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I hope not. We could do with having Julia Newton on side. She's done a lot for POTsies with NMH but I've had a sense she's so focused there that Dysauto of a different flavour passes her by.
If she is looking at the autonomic aspects of ME that would be very good - IF she is allowed to do it without political interference.
 
Firestormm

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
peggy-sue said:
Yesterday I got exposed to a facebook page for the first time and could not make any sense of it whatsoever.:rolleyes:

Today, it would appear that I have seen twit stuff for the first time - and it is every bit as uninformative, disjointed, messed up and incomprehensible.:rolleyes:
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Hear hear!! You'd think it was easy designing new websites etc. for people with ME, wouldn't you? :D
 
Esther12

Esther12

Senior Member
Messages
13,774
Shell said:
I hope not. We could do with having Julia Newton on side. She's done a lot for POTsies with NMH but I've had a sense she's so focused there that Dysauto of a different flavour passes her by.
If she is looking at the autonomic aspects of ME that would be very good - IF she is allowed to do it without political interference.
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From that tweet, and the others I saw, Newton seemed 'on side', there were just aspects of the organisation that smelt a bit bad.
 
Firestormm

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
https://www.facebook.com/permalink....16162929&id=526359017390431&notif_t=notify_me

ME / CFS Research Newcastle · 1,086 like this
15 hours ago ·
A few posts recently about the clinic. The team have recently started a new clinic based at the Campus for Aging and Vitality (old NgH hospital site). it's an NHS clinic and GP can refer. All the clinics in the building follow a model called a CRESTA clinic. This stands for Clinics for Research & Service in Themed Assessments. Ours is a Fatigue and POTS CRESTA. The focus of these clinics is applying a multidisciplinary assessment in conditions that haven't previously had the benefit of such an assessment. The clinic environment is open and spacious with easy parking. We have autonomic testing equipment for use in the clinic. There is still the local CFS service and our clinic is aimed at Investigating and managing fatigue in chronic diseases and in people where autonomic dysfunction and POTS are suspected.
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Our studies suggest upto 30% of Cfs/ME patients have PoTS if tested formally. We have just had a paper with POTS Uk accepted by BMJ open will post the link when it's published
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Esther12

Esther12

Senior Member
Messages
13,774
Just saw this on-line from the conference:

maxwhd ‏@maxwhd 18 Oct
Vincent Deary We now class #mecfs as Persistent Physical Symptoms (PPS) - Video 6 http://vimeo.com/album/2550924 password = NAPPS001
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Probably worth having a couple of people saving copies of the videos.

I was watching a few of the videos, thinking: 'If this is how they view patients, no wonder they think that they should assert authority over the psychosocial aspects of our lives", when my partner wandered past saying "Ha ha - they really do think that patients are morons, don't they?"

The person acting as the patient is so irritating. I'd love to see equivalent videos from the 70s, with a mental health expert acting out a gay person, and the problems which perpetuate their dysfunctional sexual desires. It's not as if a diagnosis of CFS or ME or 'Persistent Physical Symptoms' requires good positive evidence of being unable to think reasonably about one's life, if it did, then this view of patients would be less repulsive.
 
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Esther12

Esther12

Senior Member
Messages
13,774
Bob said:
'Persistent Physical Symptoms'

So is this to now replace 'functional somatic disorder', which replaced all the other names that describe symptoms originating in the mind?

They seem to come up with a new name once a year now.
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'How strange, the label that we give to those patients who we think deserve to be psychosocially managed without their informed consent, and despite them not suffering from identifiable cognitive distortions seems to have become stigmatised again. Most peculiar. I expect that we'll have better luck with the next one though - words are so important.'
 
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