Thursday, 28 October 2010

Help save MS Nurses

From the MS Society
Today the MS Society launches a UK wide survey to capture your experiences of MS nurses in order to protect these specialist posts. Take the MS nurse survey now.  For more click here.

BBC - Democracy Live - Health Committee

From the BBC:
David McNiven from the MS Society Scotland, said that many suffering from MS or Alzheimers are losing out on palliative care, because many workers did not understand what it was.  To view click here.

People with MS unable to access the correct benefits

From the MS Society:
The front page of today’s Daily Mail states 75% of benefit claimants are deemed fit to work – but the MS Society says the tests for benefits like Employment Support Allowance (ESA) are flawed and that people with MS who genuinely are in need often face a frustrating and lengthy struggle for support.  To read more click here.

Wednesday, 27 October 2010

Fundraisers’ great feet raises record amount

Article from the Reading Evening Post:

Wow!! What an amazing result from the 2010 Reading Half Marathon, well done everyone :) The 2011 event is tipped to be sold out by Christmas! As the Berkshire MS Therapy Centre is one of the organisers selected charities, we have a number of free places for people who want to run and raise sponsorship for us. If you. are interested please email jackie@bmstc.org but please hurry as they are already in demand! The Reading Half Marathon is now the Centre's BIGGEST fundraising event of the year!

To read article click here.

Long-term conditions conference Tuesday 22nd March 2011, QEII Conference Centre, London

Improving the quality of life for people with long-term conditions is one of the overarching aims of the new NHS Outcomes Framework, currently being developed through consultation, against which all health services commissioned in the future will be measured.


For more information click here.

Interested in working as a Census Field Officer?

 Would you like to work as a census field officer? See http://www.censusjobs.co.uk/ for more details.

Countdown to 2011 Census - Census day is 27th March 2011

Government and local authorities depend on our information to help make sure you get the services you need in your community. And that means asking questions of a lot of people. We want everyone to take part in helping tomorrow take shape. This is your chance to make a difference.
For more information click here.

Buyat BMSTC Webshop - for your all your online shopping needs!

Don't forget to use our webshop for all of your online Christmas shopping! It won't cost you a penny extra and the Centre gets a commission on every item sold!!

Why not save this address in your favourites for future shopping!
http://www.buy.at/bmstc

Phase III study with teriflunomide as adjunct therapy with interferon beta to further explore clinical benefits in multiple sclerosis

From the MS Trust:
TERACLES is the first phase III study of an oral drug as an add-on to standard therapy in relapsing multiple sclerosis.


Sanofi-aventis announced today the initiation of a multinational Phase III study evaluating the efficacy and safety of two doses of once daily teriflunomide (7mg or 14mg) versus placebo in patients with relapsing multiple sclerosis (RMS) treated with interferon beta (IFN beta). Teriflunomide is a novel oral disease modifier developed by sanofi-aventis which is being investigated in a large Phase III clinical development program. It includes studies of teriflunomide in monotherapy for the treatment of RMS and in clinically isolated syndrome as well as adjunct therapy.  Read more here.

Rebif delays conversion to MS in patients with first clinical signs of the disease

From the MSRC:
 Merck Serono, a division of Merck KGaA,Darmstadt, Germany, announced that the two-year Phase III REFLEX 1 study met its primary endpoint by demonstrating that Rebif® (interferon beta-1a) significantly delayed conversion to multiple sclerosis (MS) diagnosed according to the McDonald criteria 2 in patients with a first clinical event suggestive of the disease.  Read more click here and scroll down page.

Liberating the NHS: Greater choice and control

From the MS Trust:
As part of the work to prepare for the implementation of the reforms contained within the NHS White Paper, the Department of Health has launched a consultation entitled Liberating the NHS: Greater choice and control.  For more click here.

Tuesday, 26 October 2010

Reading Borough Council launch a public awareness campaign "Get Involved in Reading"

From Clare Muir, Senior Policy Officer, Reading Borough Council:

Reading Borough Council (on behalf of the Reading Local Strategic Partnership) has launched a public awareness campaign to bring together the many ways that local people can change things for the better through participation and involvement in community activities, the democratic process, and through volunteering and volunteering opportunities.
The campaign is called ‘Get Involved – Reading!’ and is funded through Government Targeted Support Fund
A website has been set up – www.reading.gov.uk/getinvolved which gives examples of how to get involved. It includes filmed interviews of local people talking about the community work they do, the bonus it brings to their neighbourhoods and the benefits they feel personally by making a difference; and there is a survey to find out how local people get involved in their local community and what they would like to do in the future.
Key events in the campaign are a councillor shadowing scheme where members of Reading’s Youth Cabinet will spend time with local councillors to see what their political work involves, and a debate during Black History Month looking at how to involve members of ethnic minorities and disabled people in the democratic process.

There is a Get Involved – Reading! Facebook page where you can follow developments on Facebook and share information about the activities you are involved in and how others can get involved. It would be great if you could become a fan of the page. I will be regularly updating the page with information. The link for the page is


http://www.facebook.com/pages/Reading-United-Kingdom/Get-Involved-Reading/155712367794673?v=wall

http://stayingsmart.org.uk/

From the MS Trust:
As part of the work to prepare for the implementation of the reforms contained within the NHS White Paper, the Department of Health has launched a consultation entitled Liberating the NHS: Greater choice and control.  For more click here.

MS Trust launch Staying Smart

From the MS Trust:
Staying Smart is a website designed for people who want to know (or know more) about how MS can affect thinking. Not everyone with MS will experience difficulties in this area. But for those who do, information can be hard to find. “Cognition” is the general word that covers all aspects of thinking. It includes memory,concentration and planning. To help you work out which type of thinking is tricky for you, the website starts with everyday problems.  Visit their website here.

Salk scientists discover new target for MS

From the MSRC:

Scientists are closer to solving one of the many mysteries of multiple sclerosis and other demyelinating diseases, thanks to a recent study conducted at the Salk Institute for Biological Studies.  For more click here and scroll down the newspage.

MS Trust Chatroom on spasticity on Tuesday 23 November from 10am to 7pm.

From the MS Trust:

The next MS Trust chatroom will look at spasticity -

Spasticity, spasms and muscle stiffness are a major source of mobility problems for people with MS. The chatroom will allow people with these symptoms to share thoughts and questions with specialist health professionals and other people with MS. For more click here.

Monday, 25 October 2010

The Big Society - RVA AGM!

BMSTC were delighted to attend the Annual General Meeting for Reading Voluntary Action. A very interesting evening.  To read more about the event click here.

Calling the MS detectives

From the Herald - Scotland:
Scotland’s community of 10,000 multiple sclerosis sufferers will be focused intently on a hotel in Clydebank this weekend, where the potential of a controversial new treatment will be debated by clinical experts.  To read more click here.






Speaking up for MS: budget cuts 'completely unfair'

From the MS Trust:
A woman with MS from Derbyshire voiced the opinion of a significant proportion of the MS population when she accused the Deputy Prime Minister, Nick Clegg, of "picking on the weakest people in society".   For more click here.

Friday, 22 October 2010

ECTRIMS round up

From the MS Trust:
ECTRIMS (European Committee for Treatment and Research In Multiple Sclerosis) hosts the world's largest conference devoted to basic and clinical research in MS.


This year's meeting took place in Gothenberg from 13-16 October and featured a wide range of presentations, posters and reports of new and ongoing research.  Click here.

What does the Government's spending review mean for people with MS?

From the MS Society:

We look at this week’s Comprehensive Spending Review and spell out the good news and bad news for people with MS.   Read article here






Pauls after thoughts on Strictly

Read Pauls afterthoughts on his Strictly Come Dancing experience here.

Thursday, 21 October 2010

Joint stem cell study to investigate multiple sclerosis

From the Medical News.

A $2.2 million project by Victorian and Californian researchers will assess whether stem cell therapies can be used to combat diseases such as Multiple Sclerosis and Type-1 diabetes, and help organ transplant recipients.  Read full article here.

Last minute availability for introductory 15 day Oxygen Therapy sessions!

We are running the initial 15 day oxygen therapy sessions needed to start oxygen therapy at the Centre and somebody has dropped out at the last minute!  If you have MS and are interested please contact Pippa or Tracy on 0118 901 6000.  Sessions will start at 3.00 p.m. on Monday 25th October and run at the same time, Monday to Friday for 3 weeks until Friday 12th November!

New MSRC website launched

The MSRC launched their new webiste this week take a tour here!

Would you donate at BMSTC using a credit or debit card?

We're weighing up the pro's and con's of accepting debit/credit card payments at the Centre thinking ahead to when cheques are phased out. We would pay a charge for accepting payments this way, although it would be less cash handling and admin for the Centre. What do you think, would you prefer to donate by card or stay with cash?  Email your thoughts to pippa@bmstc.org

Six Thousand Metres a Day for 12 Years

Article sent to share from one of our members.  Keith Atkinson as PPMS!!

72 year old Keith Atkinson, President of Nottingham Rowing Club, has just completed rowing 30 million metres on the rowing machine. It has taken him 12 years - the equivalent of rowing over 6 thousand metres every day! Here is his inspiring story:

MULTIPLE SCLEROSIS: WILL VEIN SURGERY HELP PATIENTS?

From the Express.co.uk

WHEN Colm McLaughlin flew to Poland for an unproven medical treatment he felt he had nothing to lose.

Diagnosed four years ago with multiple sclerosis (MS) he had been told by UK doctors there was no cure and little hope of improvement.  For more click here.

Study reports no beneficial effect for simvastatin as add on therapy

From the MS Trust:
Results of a study, looking at whether patients taking interferon beta-1a (Avonex) used in combination with simvastatin received more benefit than those on interferon beta-1a alone, were reported at the European Committee for Treatment and Research Meeting (ECTRIMS) which took place last week.   From more click here.

Monday, 18 October 2010

Bye bye Paul!

Paul Daniels and OlaFrom BBC Berkshire

Wargrave magician Paul Daniels failed to create magic on the dance floor on Sunday and was voted off.


(We thought you were great Paul ;)!

Read full article here.

Patients to control NHS records

From the BBC:
Patients are to be put in charge of their medical records online under proposals for an "information revolution" in the NHS.  Read more here.

MS drug alemtuzumab ‘can slow disability progression’

From the MS Society:

New evidence announced today shows that MS drug alemutuzamab can slow down the progression of disability in MS patients and reduce relapse rates for people with relapsing remitting MS over a five year period.  Read more here.

MS Trust supported study shows abdominal massage helps bowel problems in MS

From the MS Trust:
Bladder and bowel problems are common is MS. Constipation is one of the symptoms most commonly experienced by people with MS who encounter bowel problems. A study funded by the MS Trust investigated the feasibility of undertaking abdominal massage in people with MS.  For more click here.

Thursday, 14 October 2010

New Findings On Autoimmune Diseases

From Medical News Today:
A deficiency in one of the immune system's enzymes affects the severity of autoimmune diseases such as MS, and explains why the course of these diseases can vary so much. New findings give an insight into how this enzyme deficiency can be diagnosed, and could lead to new medicines, reveals a thesis from the Sahlgrenska Academy.  For more click here.

Positive effect of exercise for people with MS

From the MS Trust:

A recent study published in the journal Multiple Sclerosis has shown that exercise can have a positive effect on the overall well-being and quality of life of people with MS as well as leading to improvements in walking mobility. 54 people with MS were randomly allocated to either a 12-week online programme or a waiting list.  For more click here.

Christmas Fayre - Saturday 13th November 2010

Being officially opened this year by Sir John Madejski 1.00 - 3.30 pm.  at the Berkshire MS Therapy Centre

Father Christmas, Seasonal Gifts, Home-made cakes, Refreshments and much, much more!!!  For more information click here.

Calling all FES users!

From the MS Trust:
"We have been asked by the East Midlands Specialised Commissioning Group to comment on their draft policy not to fund FES devices. This is the second group we are aware of that is proposing a negative response to FES and there could be others. "  Click here for more.

Wednesday, 13 October 2010

Questions about problems with thinking?

From the MS Trust:

Jeffrey Gingold lives with MS and is an advocate for people with cognitive disability. His is the internationally acclaimed author of the award-winning books, Facing the cognitive challenges of multiple sclerosis and Mental sharpening stones: manage the cognitive challenges of multiple sclerosis.  For more click here.

Stopping natalizumab causes inflammatory rebound in MS

From the MSRC:

Some multiple sclerosis (MS) patients who discontinue natalizumab therapy may experience a rebound of disease activity, according to research published online Oct. 11 in the Archives of Neurology.  For more click here.

People living with a disability could be faced with a substantial welfare cut over the next five years, according to a leading think tank.

From the MS Society:

Demos suggests that 3.6m disabled people and their carers will lose over £9 billion by 2015 under the coalition government’s plans to reduce public spending.


As part of the government’s plans, people on Employment Support Allowance (ESA) will be reassessed for their ‘readiness to work’. Those deemed fit enough to work will be moved on to Jobseeker’s Allowance (JSA) instead.  For more click here.

Tuesday, 12 October 2010

Disabled people and carers face '£9bn welfare cut'

From the BBC:

Disabled people will be hit with more than £9bn in welfare cuts over the next five years, a think tank has warned.  For more click here.

Monday, 11 October 2010

Don't forget the Christmas Fayre - Opening Ceremony by John Madjeski on Saturday 13th November 1.00 - 3.30

Letter from Sue Smith of the BMSTC Link Group

Yes, it's that time of year again for us to be planning the Christmas Fayre and we are fortunate this year to have John Madjeski to perform the opening ceremony. As usual we are asking for your help. Please will you donate any of the following?


A prize for the raffle or tombola. Any new, unused, items would be very welcome.

Soft Toys which can be used as prizes.

Wine for prizes in the Wine Raffle
Cakes to serve with tea and coffee on the day and for people to buy and take home.
PLEASE NOTE WE DO NOT NEED BRIC-A-BRAC THIS TIME. WE HAVE SO MUCH THAT STORAGE IS BECOMING A PROBLEM!

If you have none of the above, a £1 donation would be appreciated. Please give this to Tracy or Jackie and ask them to pass it on to a member of the Link Group.

There is a labelled plastic dustbin in the reception area at the Centre into which donated items can be placed. Wine should be given direct to Trish Wright or handed to Tracy or Jackie who will pass it on to her. Cakes should be brought along on the day, or a day or two before.

Other ways you can help
Are you or any of your family and friends available to help on the day? We need able-bodied people to help set up the tables from 9 am to 11 am. Also help is needed at the end of the day (dismantling tables and clearing up) from about 3pm to 5pm. If you or anyone you know could help with this (or in any other way) there is a volunteers' form at the Centre for you to complete or please phone the Centre.

Please come along on the day with your friends and family. You will find lots of stalls with all sorts of things to buy and delicious cakes to eat in or take away. Tea, coffee and cold drinks will also be available and of course Santa will be there in his grotto.

Many thanks for your support and we look forward to seeing as many of you as possible at the Fayre.

Sue Smith
BMSTC Members' Link Group

Link sent by one of our members to share from the Irish Times published 11th October regarding CCSVI


From the Irish Times

A chara, – Multiple sclerosis has been known as a venous problem since 1863. This, however, had not been proven until recently when an Italian doctor Paolo Zamboni investigated the venous possibilities connected to his wife’s MS.   For more click here.

MS Trust welcomes NICE review of lower urinary tract dysfunction

From the MS Trust:
NICE (National Institute for Health and Clinical Excellence) has announced that it is starting to put together guidelines for the management of urinary incontinence in neurological disease.  Bladder symptoms are very common in multiple sclerosis affecting about 75% of people to different degrees.   For more click here.

Importance of MS nurses recognised

From the MS Trust:

The role of specialist MS nurses in coordinating services and helping people with multiple sclerosis maintain their quality of life has been recognised at a major meeting European policy-makers and professional and patients' organisations.  For more click here.

Gray backs bid to save MS care home

From the MS Trust::

Scottish Labour leader Iain Gray has called on the Charity Commission to intervene in the threatened closure of Leuchie House, the respite home for multiple sclerosis sufferers in North Berwick.  For more click here.

Thursday, 7 October 2010

West Dorset: Valerie hosts a pop-up restaurant... for one charity night only

This is a friend of  one of our members, Nabil, is raising money for the Berkshire MS Therapy Centre down in Dorset!!  What a great idea!

From the Bridport News:

"AN URBAN food trend is popping up in rural Dorset to serve up cash for a good cause.
Valerie McRobert is inviting strangers to come dine with her and raise money for a centre for Multiple Sclerosis (MS) sufferers.   Read the full article here."

Making decisions about treatment options

From the Trust:
A paper published by professor Chrisoph Heesen in the Journal of Neurological Sciences highlights the increasingly complex decisions faced by people diagnosed with MS as new therapies become more efficacious but pose increased risks of severe side effects.  Read full article here.

Can diet & supplements reduce CCSVI severity?

From the MSRC:
I have just got back from Glasgow, Scotland, where I had my veins scanned at the Essential Health Clinic.


The result was that I have mildly narrowed veins on one side only. Of the 150 patients this clinic has seen so far, only 3 have had stenosis on one side only and I am one of them.  To read full article click here.

Wednesday, 6 October 2010

Did you know we have WiFi at the Centre?

Just ask in the office for the password when you're next at the Centre with your laptop for FREE access to the internet!  :)

Support to help people after returning home from a hospital stay

From the MS Trust:
The government has just announced £70 million additional funding to help people back into their homes after a spell in hospital.   Read the full article here.

Are we getting enough vitamin D?

From the MS Trust:
Researchers at the Queensland Institute of Medical Research (QIMR) are on a mission to find out if we need to supplement our diet with vitamin D.
According to lead researcher, Dr Rachel Neale from QIMR, "There has been increasing scientific and media attention paid to the potential health benefits vitamin D, known as the sunshine vitamin."  Read full article here.

Novartis MS program guides patients to new oral drug, covers out-of-pocket costs

From the MSRC:

Novartis AG will pay out-of-pocket costs for non-Medicare patients who use the company’s multiple sclerosis pill Gilenya when the drug, to be priced at $4,000 a month, goes on sale in the U.S. this week.  Read full article here.

Tuesday, 5 October 2010

Get £85 for taking part in an interview about Multiple Sclerosis

From the Patients Voice:

Thanks very much for your interest in our research into Multiple Sclerosis.


The research will take the form of a 60 minute interview in a central location in London. If you take part you will be rewarded with £85 each to thank you for your time and effort.  for more info click here.

Over £9,000 raised by MS Society calendar girls!!

I received an email today from Carrie which I'd like to share with you all :)

Dear Everyone,


My mum & I have developed a MS Society Calendar for 2011, along with a lot of help!

Not sure if you have heard about it already! Anyway, we really wanted to do something positive and along the way raise a lot of awareness and money for research!

I have attached a poster for the calendar, if you feel you would like to support the calendar, please could you print it & display it at work or anywhere you can think of, also please feel free to forward this email to friends and ask them to do the same!

We have so far raised nearly £9000 in less than 3 weeks and have just ordered a re-print to keep up with the demand!

You can see & purchase the 2010 MS Calendar at the this link: http://www.moving-mountains.co.uk/

Thank you for your support, we really appreciate it.

Carrie Paterson (Formally Burbush).

MS Society announces £1.6 million to fund 12 new research projects

From the MS Society:

The MS Society today announced funding for 12 new MS research projects, costing over £1.6 million.


2010 was a record breaking year, with the Society receiving 75 applications for funding, the highest in its 57 year history.  Read full article here.

MS Society AGM YouTube video

The MS Society's AGM is one of its most important events in the calendar. The talking point this year was the Society's new direction for respite care. Find out the views of the members at this year's AGM in Wembley, North London as they gathered to vote to shape the future of the organisation  Watch video here.

Walking for Miles 2010 - Thank you!!

We'd like to say a HUGE thank you to everyone who braved the rain and entered or helped out at our Walking for MileS event yesterday! We had a fantastic day, despite the weather and look forward to updating you on the results in due course. Thank you everyone we had a really successful day! :)

Monday, 4 October 2010

Surgery for multiple sclerosis available at private clinic in UK

From the Guardian:

A surgical treatment for multiple sclerosis is to be offered privately in the UK, despite warnings that it has not been proved safe or effective.   Read full article here.

Fight on to save MS respite home Leuchie House.

From the BBC:
Later this year, the only respite care home for people with Multiple Sclerosis in Scotland and the north of England will close
The MS society, which runs Leuchie House, say not enough people with the condition are getting to use it, but visitors to the centre, in East Lothian, say they cannot live without it.  Read full article here.

Sanofi-Aventis launches hostile Genzyme bid.

From the BBC:
Genzyme produces treatments for multiple sclerosis, cholesterol and rare genetic diseases, among others.  To read full article click here.

A wheelchair controlled by thought alone, from the EPFL Lab of José Millan. To be presented at the AAAS 2011 annual meeting.

Watch the YouTube video here

Friday, 1 October 2010

Good luck Paul!!

The Life and Times of Paul Daniels
Good Luck Paul!  Both you and Debbie do so much for us here at the Centre, we are very appreciative and we look forward to offering you our support on Strictly!! Go for it! :)

Read Paul's blog here!

Liz Green chats to Debbie Purdy from Bradford about life with Multiple Sclerosis.

From the BBC - Liz Green chats to Debbie Purdy from Bradford about life with Multiple Sclerosis to listen click here.

New Pathways Magazine

Just reading the New Pathways magazine from MSRC that came in the post today. Great article about Matt Embry, worth a read! A great magazine! :)

Visit their website here.

Don't underestimate seasonal flu

From the MS Trust:

People at risk of seasonal flu are encouraged to protect themselves by getting their annual free flu jabs, the Department of Health said today as it launched its seasonal flu plans.  Read full article here.

Walking or Swimming for MileS?!!

Not sure if everyone will be Walking or Swimming for MileS on Sunday with the weather forecast that we have at the moment!!! Even more reason to support Ian our Chairman by sponsoring him!!! ;)

Visit his Just Giving Page here!