Sam Cam hosts evening event at No. 10 for ME

[Firestormm]

AFME
Samantha Cameron hosts reception for us
18 June 2013

Samantha Cameron this evening hosted a reception at 10 Downing Street for Action for M.E., the UK’s leading charity for people affected by Myalgic Encephalomyelitis (M.E.).
The Prime Minister’s wife was able to meet many of the 100 guests gathered in the State Rooms at the prestigious event.

M.E. is an illness close to her heart as she has known people affected by it.

The event was held to say a very special thank you to many of the charity’s supporters, many of whom have helped the charity over many years.

Action for M.E. Chief Executive Sonya Chowdhury said, “This was a fantastic opportunity for us to say thank you to some long standing friends and hello to some new ones. When Samantha offered to host the event, we were absolutely thrilled.

“There can be few places in the world as iconic as ‘Number 10’ and we were delighted to be able to celebrate past successes, highlight the much that still needs to be done and share some of our exciting plans for the future at such a high-profile venue.

“Numbers had to be limited, but we were also able to also invite some of the eminent researchers and experts in the field of M.E. who we are funding to this very special event. Bringing people together and working collaboratively to achieve joint aims is a major part of our strategy going forward.

“It is a really exciting time for M.E. research with new findings emerging and the recent launch of the UK CFS/M.E. Research Collaborative bringing real hope of attracting serious investment and new young researchers into the field.”

Among those attending were yachtswoman turned internationally best-selling author Clare Francis, who is President of Action for M.E., and the charity’s Ambassadors, leading businessman Robert Cathery, a long-term supporter of the charity, and six times world champion and double Olympian Anna Hemmings, who became an Ambassador last month.

The reception was addressed by Samantha Cameron, who welcomed people to Downing Street, Robert Cathery and Sonya Chowdhury. Prime Minister David Cameron was not at Downing Street during the reception.

And I pinched this from Newcastle University's Facebook page:

Networking.....

 

[Firestormm]

This just in.... those scientists also in attendance:

• Prof Stephen Holgate, Chair, UK CFS/M.E. Research Collaborative
• Prof Julia Newton, research leader, Newcastle University
• Dr Jason Ellis, research leader, Northumbria University
• Dr Esther Crawley, Reader in Child Health, University of Bristol
• Prof Derek Pheby, Visiting Professor of Epidemiology, Buckinghamshire New University and Action for M.E. Trustee.

Holgate - well you could write a book - I think Crawley was there because she is also vice-chair of the Collaborative having accepted the position when they all gathered at that event; and Pheby is also heading the UK Disease Registry.... more on THAT later peeps Don't know much about Ellis off the top of my head; and I've never heard of Newton before but I'm told she likes posing outside No. 10 and is often seen there causing a nuisance wearing her ME T-shirt

 

[FogLeg]

and six times world champion and double Olympian Anna Hemmings, who became an Ambassador last month.

Thought I'd try and read about Anna Hemmings' story, but... the text in the banner of this page! http://www.annahemmings.com/page48.asp

(I'm pretty sure it's intended as a generic motivational statement, as several others are dotted around the site... a very unfortunate choice though!)

 

[user9876]

I find it worrying that Government will get their view of ME from the Action for ME who still seem to be supporting PACE and I found Pheby and Action for ME's latest paper somewhat worrying and uninsightful.

If this is organised from the new research collective shouldn't some other groups have been included?

 

[Apple]

and I've never heard of Newton before but I'm told she likes posing outside No. 10 and is often seen there causing a nuisance wearing her ME T-shirt

I believe Julia Newton and her team were given a £1,000,000 towards research not that long ago. I'm too tired to search for links, but google her - her research is interesting. She's situated in Newcastle, I think.

I think this is a positive thing.

 

[Firestormm]

I believe Julia Newton and her team were given a £1,000,000 towards research not that long ago. I'm too tired to search for links, but google her - her research is interesting. She's situated in Newcastle, I think.

I think this is a positive thing.

I was being ironic, Apple. Sorry. My humour doesn't always come across very well in text

Prof Newton is a pin-up of mine though I do wish she took time-out for 30 minutes to get her hair done Seriously, she's doing some good things I believe and yeah she and her University got a large proportion of the MRC 'pot' in 2011.

At the launch of the collaboration at Science Media Centre in London, Prof Julia Newton outlined three new studies that are taking place in Newcastle following a £1m Medical Research Council grant to focus on the mechanisms and underlying biological processes involved in the illness.

Prof Newton, a clinical professor of ageing and medicine at Newcastle University and a consultant at Newcastle’s Royal Victoria Infirmary, said: “I believe the North East is leading the way in research as Newcastle is way ahead in a number of areas in understanding chronic fatigue syndrome.

“There has been a problem with doctors and clinicians not recognising the severity of the symptoms and a perception that it is a psychological illness.

“But over the last decade things have improved and there have been scientific advances that suggest there are biological reasons as to why people develop chronic fatigue syndrome and it is not all in the mind.”

The first study involves examining whether the drug Rituximab could be used as a medicine in order to understand more about fatigue mechanisms.

Rituximab is successful in treating rheumatoid arthritis, some cancers and the profound fatigue experienced by patients with an immune liver disease known as primary biliary cirrhosis.

The second trial is aimed at exploring why people with CFS/ME have low blood pressure and whether this could be a target for treatment.

This work includes studies involving newly-developed MRI techniques to examine the muscle, brain and hearts of patients. In addition, further laboratory studies will involve growing muscle cells from CFS/ME patients and examining their reaction to exercise.

The third study lead by Dr Fai Ng at Newcastle University explores the role inflammation might play in the symptoms of fatigue.

Prof Newton said: “The UK CFS/ME Research Collaborative is an opportunity for us to showcase the range of important work being performed in Newcastle that focuses upon understanding the biological basis of this disease.

“The ultimate goal is to develop treatments that will address the chronic and debilitating symptoms that affect people with this condition.

“In five years’ time I would hope that we would be beginning to explore the treatment options available for people with chronic fatigue syndrome.”

http://www.meassociation.org.uk/?p=15220

 

[Firestormm]

I find it worrying that Government will get their view of ME from the Action for ME who still seem to be supporting PACE and I found Pheby and Action for ME's latest paper somewhat worrying and uninsightful.

If this is organised from the new research collective shouldn't some other groups have been included?

Out of interest, user, The MEA Essential's Magazine this month had a really good article from Pheby: 'a key figure on the ME/CFS scene - most recently as head of the ME Research Observatory and now the Disease Registry, which will recruit donors to the recently established UK ME/CFS Biobank'. More on those last two shortly as I said above.

The article was a transcript in the form of notes from his speech in March at the APPG where he revealed exactly why ME matters so much to him and his family:

What happened when Professor Derek Pheby blew the whistle! MEA Essentials Summer 2013 pp.6-7

'...My son fell ill at the age of eight; he is now 42. When he became ill, we immediately became public property, and there was no confidentiality. Social service, without our knowledge or consent, got involved from the outset. We were threatened with care proceedings...'

He goes on but I don't want to continue as I don't have permission at this point. Suffice to say that his professional involvement is stimulated by personal passion. Doesn't mean his opinions and papers shouldn't be critiqued of course - he ain't a god - just thought you'd like a little glimpse at background.

I hope to be writing and publishing an article on the UK Registry and Biobank developments and updating on progress with a couple of interviews if I can - when I can - in the next few weeks.

 

[user9876]

Out of interest, user, The MEA Essential's Magazine this month had a really good article from Pheby: 'a key figure on the ME/CFS scene - most recently as head of the ME Research Observatory and now the Disease Registry, which will recruit donors to the recently established UK ME/CFS Biobank'. More on those last two shortly as I said above.

The article was a transcript in the form of notes from his speech in March at the APPG where he revealed exactly why ME matters so much to him and his family:


He goes on but I don't want to continue as I don't have permission at this point. Suffice to say that his professional involvement is stimulated by personal passion. Doesn't mean his opinions and papers shouldn't be critiqued of course - he ain't a god - just thought you'd like a little glimpse at background.

I hope to be writing and publishing an article on the UK Registry and Biobank developments and updating on progress with a couple of interviews if I can - when I can - in the next few weeks.

Yes I had read the APPG transcript. But I know very little about the UK biobank so it would be good to read anything you write.

I think there was a thread for the Pheby/Action for ME GET paper so I will put more detailed comments on the paper there soon.

 

[Firestormm]

Yes I had read the APPG transcript. But I know very little about the UK biobank so it would be good to read anything you write.

I think there was a thread for the Pheby/Action for ME GET paper so I will put more detailed comments on the paper there soon.

I did think to myself that if anyone had it might be you Yeah be nice to review his paper - probably did but not properly - can't remember; might give me some background. Thanks.

 

[Firestormm]

Yes I had read the APPG transcript. But I know very little about the UK biobank so it would be good to read anything you write.

I think there was a thread for the Pheby/Action for ME GET paper so I will put more detailed comments on the paper there soon.

Minutes are here if anyone else wants to read about Pheby's background and also his 2009 research into Severe ME and the problems with assuming 25% and the general lack of work in this area.

 

[Apple]

I was being ironic, Apple. Sorry. My humour doesn't always come across very well in text

Prof Newton is a pin-up of mine though I do wish she took time-out for 30 minutes to get her hair done Seriously, she's doing some good things I believe and yeah she and her University got a large proportion of the MRC 'pot' in 2011.

Oh, how embarrassing . Sorry! I've noticed your username around on here and FF and did think that it was a bit odd that you wouldn't have heard of her. hahaha. Ooops. Brainfog strikes again.

 

[Firestormm]

Oh, how embarrassing . Sorry! I've noticed your username around on here and FF and did think that it was a bit odd that you wouldn't have heard of her. hahaha. Ooops. Brainfog strikes again.

Crikey. A Foggy Friend-er. Delighted to make your acquaintance. That forum was of great help to me when I was at my worst. Really good place. Supportive. Developed many a friendship from Foggies. Owe them a lot. You've brought back some good memories. Thank you x

 

[Bob]

If this is organised from the new research collective shouldn't some other groups have been included?

My understanding is that this was a private AfME social gathering, with select guests.
So i think it was a private AfME get-together more than anything else.

 

[Bob]

I was being ironic, Apple. Sorry. My humour doesn't always come across very well in text

I'm glad you clarified, Firestormm, cos i was about to tell you that you do know Julia Newton, and provide some links!
(Thought you might be having a bad memory day!)

BTW, your humour is fine (usually)!

 

[Firestormm]

I'm glad you clarified, Firestormm, cos i was about to tell you that you do know Julia Newton, and provide some links!
(Thought you might be having a bad memory day!)

BTW, your humour is fine (usually)!

She's quite a memorable lady and no mistake even with a foggy head. Thanks Bob