Thursday, 30 September 2010

Don't forget to watch our Patron, Paul Daniels, on Strictly on Friday night!!

Don't forget to watch our Patron Paul Daniels being put through his paces tomorrow night (Friday) on Strictly Come Dancing! Good luck Paul from everyone at BMSTC! :)

For more click here.

Walking for MileS 2010 - Sunday 3rd October

There is still time to enter this years event, or if you are unable to come along but would like to support us they why not sponsor our Chairman, Ian Langrish who is taking part!  You can sponsor Ian here or for more information about the event click here.

MS stem cell doctor 'struck off' by General Medical Council (GMC)

From the MS Society:

A doctor who injected people with MS with stem cells not fit for human use has been banned from work.  For more click here.

Reporting concerns about medicines

From the MS Trust:

New rules could be in place by 2012 to allow patients across Europe to report adverse reactions to drugs directly to national authorities. The national web portals will provide the public with information on medicines, their known side effects and details on how to report any concerns they might have.

Wednesday, 29 September 2010

Reading Older People's Parntership Meeting 19th October at Greyfriars Church

"Be Informed, Be Involved, Be In Charge Be Informed, Be Involved, Be In Charge"

Reading Older People’s Partnership meetings are:
  • An opportunity to find out about local services
  • A chance to influence how services are delivered
Come along to find out about ways you can have a greater say and more choice about the support, services, activities and opportunities available to you in  your later life

Tuesday 19th October , Greyfriars Church, Friar Street
10.30am to 12.45pm refreshments and registration from 10.00am
Book now to confirm your place - Call: 0118 937 3204 or  Email: ROPP@reading.gov.uk
Come along to find out about ways you can have a greater say and more choice about the support, services, activities and  opportunities available to you in your later life.

Research overturns theories about Multiple Sclerosis

From the MSRC:

The trigger for multiple sclerosis could be completely different to what scientists have believed, say Australian researchers who made the breakthrough discovery that could overturn decades of MS research.  For more click here.

Don't forget to use the BMSTC shop when you shop online!

Don't forget when you do your online shopping to use our webshop. Find online bargains, gifts, cheaper gas and electricity services and even book a holiday through our Webshop and raise money for us as you shop online :)  Visit our webshop here.

iPhone and android phone app for Just Giving.

Did you know that there is an iphone app to use for Just Giving making it easier for people to donate to your charity or sponsor you whilst on the move?

For Apple iPhone click here.

For Android phones click here.

Flu jabs

From the MS Trust:

People with multiple sclerosis may be at greater risk from the effects of flu and are being encouraged to take up the offer of free flu vaccinations from their GP surgeries.  For more click here.

Learning a meditation technique helped people with MS cope with depression, fatigue and anxiety.

From the MS Trust:

150 people with relapsing remitting or secondary progressive MS took part in either an eight week mindfulness training course or received standard care. Mindfulness combines meditation, breathing techniques and paying attention to the present moment. For more click here.

Latest MS-CCSVI-UK Newsletter

Read the latest MS-CCSVI-UK newsletter here!

Tuesday, 28 September 2010

Research overturns theories about Multiple Sclerosis

From the MSRC:

The trigger for multiple sclerosis could be completely different to what scientists have believed, say Australian researchers who made the breakthrough discovery that could overturn decades of MS research.


Their work, which suggests the past 40 years of MS research has been looking at the wrong parts of the central nervous system, could eventually lead to new treatments.  For more click here.

Monday, 27 September 2010

Equipment demonstration

From Angela Todd, Strategy Officer:

Dear Member or Supporter

In conjunction with Reading Borough Council, the PDSN Network in pleased to invite you to two events during October. We have arranged visits to see demonstrations about important pieces of equipment that enable you to have independence. These are:

1. Visit to the West Berkshire Wheelchair Service

Date: 13th October 2010 Time: 10.30 am until 12.00
Royal Berkshire NHS Foundation Trust, London Road, Reading, RG1 5AN
Please park on the multi-storey visitors’ car park. The Wheelchair Service is in W4, West Block or you may ask at the reception.
There are a maximum of 15 places.
2. View a show flat kitted out with assistive technology (or telecare)
Date: 19th October 2010 Time: 2.30pm
Tanfield Care Home, 2 Hexham Road, Whitley. Reading, RG2 7UG
The property is equipped with the latest technology which enables you to live at home safely with a 24 hour alert monitoring service in case of emergency.

To confirm your attendance please complete the attached form and return it the enclosed pre-paid envelope. Alternatively you can call to reserve your place 0118 937 4114 or email pdsn@reading.gov.uk. Do please pass this letter on to anyone you feel may benefits. The closing date for registration is Friday 8th October 2010.

Yours faithfully

Angela Todd
Strategy Officer

Please sponsor our esteemed Chairman, Ian Langrish!

Our esteemed Chairman Ian Langrish is taking part in the years Walking for Miles raising money for the Berkshire MS Therapy Centre. If you would like to sponsor him please follow the link below to his Just Giving Page. Thanks :)

Click here to his Just Giving page!

Statement regarding the outcomes of the MS Society’s AGM

The MS Society held its AGM on 25 September where the voting results of members’ resolutions were announced.
Members voted in favour of the Board’s decision for the future of the Society’s respite care, by 60%. The Society has issued the following statement:   To read click here.

MS charity respite home closure protest vote fails

From the BBC:

A motion of no confidence in the leadership of a multiple sclerosis (MS) charity over the closure of respite care centres has failed.
The residential centres in York, Surrey, Warwickshire and East Lothian face closure if they are not taken over by other organisations.  For more click here.

Merck shares hit after drug denied approval

From the BBC:

Shares in German drugs and chemicals group Merck have fallen after European regulators refused approval for a new multiple sclerosis (MS) treatment.  For more click here.

Balloon angioplasty with or without stenting for chronic cerebrospinal venous insufficiency (CCSVI) in MS

NICE has been notified about this procedure and has considered it as part of the Institute’s work programme. The procedure is being monitored as we are awaiting use in the NHS.


The procedure will be reconsidered at regular intervals to determine whether this has been resolved.

If you wish to be alerted to developments regarding this procedure, including the release of the consultation document, please express your interest at the top of the page.  For more click here.

Pain relief that’s against the law

From the Mirror:

Smoking cannabis can provide effective pain relief for people suffering from chronic conditions caused by nerve damage.
That’s the finding of a study published in the Canadian Medical Association Journal, where people suffering from chronic nerve-related pain – often after traffic accidents or surgery – took low doses of cannabis.  for more click here.

Staying Positive trainers sought

From the MS Trust:

Staying Positive are looking for volunteers aged 23 or younger and who are living with a long-term condition.   For more click here.

Fingolimod - USA approves first MS tablet

From the MS Society:

Fingolimod will become the first licensed tablet to treat relapsing remitting MS in the USA, though patients in the UK will still have to wait until next summer before the drug becomes available.  For more click here.

Quality UsedWheelchair Accessible Vehicles Supplied Throughout The UK

Useful website for used mobility vehicles and wheelchairs!

http://www.mobilitynationwide.co.uk/

Berkshire PCTs' healthcare staff to merge under plans

From the BBC:

About 2,000 health staff managed by two Berkshire primary care trusts (PCTs) are set to merge under one health body.
Frontline nursing and healthcare staff from East and West Berkshire PCTs will be managed by Berkshire Healthcare Foundation Trust from April 2011.  For more click here.

Environmental Factors And MS Research

From the MSRC:

Study to look at environmental factors, MS progression.

MS MRIA $634,000 grant from the Department of Defense is allowing researchers at the University at Buffalo to investigate a trio of environmental factors and their influence on the progression of multiple sclerosis.

For more click here.

Thursday, 23 September 2010

MS Society AGM - 25th September 2010

If you are a member of the MS Soceity don't forget to vote at the AGM!

Click here for details.

Last chance to Enter Walking for Miles 2010!

Sunday 3rd October 2010 - We are planning a selection of walks in the South Oxfordshire area.

There is a choice of three walks in all: you may want to join members of the MS Centre using wheelchairs and walk along the Thames and over Marsh Lock; alternatively you could choose


one of the more demanding routes. Registration takes place in the Henley Room, inside the River and Rowing Museum.

For more information click here.

Environmental Factors And MS Research

From the MSRC:

A $634,000 grant from the Department of Defense is allowing researchers at the University at Buffalo to investigate a trio of environmental factors and their influence on the progression of multiple sclerosis.  Read more here.

Social care recipients to control their personal budgets

From the Guardian:

The government will tomorrow announce it is to give everyone who uses social care services control of their own budgets, enabling them to tailor the service. The Lib Dem minister for care, Paul Burstow, will announce the expansion of personal budgets in social care from November. He hopes it will demonstrate clear Liberal principles, allowing patients total autonomy, to the party faithfuls concerned at broader top down reforms of the NHS.  Read more here.

A new support website has been launched for supporters and carers.

"Someone to support you whilst you support and care for your loved one.


Thank you for visiting us here at Never Alone, we hope you find the site of use and will join our open and friendly community.
Never Alone is a support site for all supporters and carers. We hope it becomes a place that you can find comfort and support, somewhere for you to escape without needing to leave your loved one alone. We want to create an environment that is safe and fun, where members can chat, get support and advice if needed."  Visit website here.

Essential Health Clinic starting CCSVI procedure in October 2010

The Essential Health Clinic announce "After several months of negotiations we are pleased to announce that the first procedures for CCSVI in the UK will take place in October 2010.
Starting a new treatment such as CCSVI in the UK has been challenging and our original plans to start in July were unavoidably delayed.
We ha...ve now secured the commitment of an eminent vascular surgeon with extensive experience in endovascular procedures. We have also secured first class facilities for CCSVI treatment and are therefore now able to offer an excellent package of care and treatment to our patients."  For more information click here:

Happy Days!

Today has been an excellent day! With thanks to Jackie's efforts we've been awarded an £11,000 grant from the PCT! Go Jackie! :)

Wednesday, 22 September 2010

Vitamin D could be tested as MS aid

From Louth Leader:

Vitamin D supplements should be introduced in Scotland to see if they can help combat multiple sclerosis (MS), an expert has said.
Professor George Ebers, from Oxford University, made the suggestion at a one-day summit examining the possible link between MS and vitamin D deficiency.  For more click here.

FDA approval for Gilenya, a novel first-line multiple sclerosis treatment shown to significantly reduce relapses and delay disability progression

From the MS Trust:

Today, Novartis announced that the US Food and Drug Administration (FDA) approved the oral multiple sclerosis (MS) treatment Gilenya (fingolimod) 0.5 mg daily, a first-line treatment for relapsing forms of multiple sclerosis - the most common forms of the disease.  For more click here.

MS-CCSVI-UK

We had a visit yesterday from Michele and Kevin on behalf of MS-CCSVI-UK. It was great to see them both and get an update on their progress. Watch out for news after the UK CCSVI conference at the end of October!!  Click here for more details.

Cumbrian women's nude MS calendar raises £8,000

From the BBC:

A nude calendar featuring Cumbrian women with multiple sclerosis (MS) has proved so popular it is being reprinted less than a month after being released.  Go girls!  For more click here.

MS Society talks hidden symptoms at Party Conferences

From the MS Society:

We’re at the Lib Dem Party Conference this week talking to MPs about the symptoms of MS. We want to highlight how hidden symptoms – like fatigue and cognitive problems – can have a significant impact on a person’s chance of accessing disability benefits and other statutory support.   For more click here.

Severely disabled people choosing between eating or heating

More from the MS Trust

While people over 60 will be eligible for up to £400 to help cover the cost of heating their homes, severely disabled people will not be able to claim winter fuel payments.  For more click here.

Positive benefit-risk profile for multiple sclerosis candidate Laquinimod in phase IIb extension study - update

From the MS Trust:

Teva Pharmaceutical Industries Ltd and Active Biotech reported Monday that a 36-week phase IIb extension study of Laquinimod in the treatment of relapsing remitting multiple sclerosis or RRMS demonstrated sustained positive benefit-risk profile.  For more click here.

Multiple sclerosis drug Gilenia poised for approval [in USA]

From the MS Trust:

A panel of experts voted in June to recommend approval of the drug despite some small safety concerns, and the FDA will likely follow the decision.  For more click here.

Tuesday, 21 September 2010

Mobility Mayhem!

From the Daily Mail:

"There are more than 300,000 mobility-scooter users in the UK, according to the Department for Transport, and sales are booming. So much so that last year, motorparts giant Halfords announced they were to produce their own range in an attempt to break into a UK market worth £500million."  For more click here.

Multiple sclerosis drug Gilenia poised for approval [in USA]

From the MS Trust:

A panel of experts voted in June to recommend approval of the drug despite some small safety concerns, and the FDA will likely follow the decision. For more click here.

Monday, 20 September 2010

NZ biotech to test multiple sclerosis treatment

From the MS Trust:
A clinical trial to test a promising new multiple sclerosis therapeutic gets underway in Christchurch later this month.
The therapeutic, developed by Auckland biopharmaceutical company Innate Therapeutics, also has the potential to fight certain cancers and infectious diseases.  For more click here.

Don't forget to vote! MS Society AGM 25th September 2010

Don't miss your opportunity to vote in this year's AGM.

Click here for more details

Scottish warning over vitamin D levels

From BBC Scotland:
New leaflets are to be handed out urging people to make sure they get enough vitamin D.
Doctors are concerned people in Scotland are not getting enough of the vitamin from sunlight and are not topping up their levels with a healthy diet.   For more click here.

Friday, 17 September 2010

People remains top priority during NHS reforms

From Get Reading:

Health bosses vowed to remain working for the best possible interests of people in Reading last week despite the major NHS reforms.

Charles Waddicor, chief executive of Berkshire West Primary Care Trust, which will be dissolved in March 2013, staunchly pledged his dedication to providing high quality healthcare for the best price for the next two years while also helping to form and advise the new GP consortiums that will take over the commissioning of services.  For more click here.

Health charities call for focussed NHS spending

From the MS Trust:

Ten leading health charities have joined forces to call on the NHS to spend its money on health services in a more focussed and patient-centred way.
The charities have created a report, How to deliver high-quality, patient-centred, cost-effective care. This argues that too much money is wasted by focusing on short-term savings rather than long-term planning. Money could be saved, and better services provided, if the NHS offered a more integrated system of care.  For more click here:

Chance discovery may be MS research breakthrough

From the MSRC:

An accidental discovery in a University of Alberta lab could lead to new treatments for multiple sclerosis.


“That,” said Marak Michalak, one of the two biochemists who made the discovery that led to the breakthrough, “is the beauty of open minded, curiosity-driven research.”  For more click here

Thursday, 16 September 2010

Interested in Pilates?

Recent research done by the TIMS group (therapists in MS) from the MS Trust has established that Pilates is beneficial for people with MS.


 
At the centre we are planning to set up such a course over a period of 10 weeks with weekly attendance and completion before Christmas. We are planning to run the class either Thursday morning 9-10.00 or Saturday 10.00-11.00 depending on interest from the members. Maximum class number will be 6 people to facilitate individual instruction.

 
Criteria for inclusion:
  • The ability to come on and off the floor (using support if necessary)
  • Walking independently or with 1 stick
  • Attendance for individual ½ hour assessment would also be a prerequisite for the course.
If you are interested or would like more information please contact Ruth (Ruth@bmstc.org) or Pippa (Pippa@bmstc.org)

 

BMSTC Christmas Fayre!

The annual BMSTC Christmas Fayre will be on Saturday 13th November - more news soon!

We told you about our fantastic volunteers yesterday....

.......well we are also so lucky lucky lucky to have over 1,873 supporters!! Donors, walkers, marathon runners, collectors, skydivers, car booters, mountain climbers, musicians.......the list goes on and on!! I know many of you follow our blog, so a big thank you to you for all that you do! :)

Assisted suicide law for Scotland debated

From the MS Trust webiste:

The End of Life Assistance (Scotland) Bill is being proposed by independent MSP Margo MacDonald who herself lives with Parkinson’s disease. A special Holyrood committee has begun examining evidence from a wide range of witnesses.  Click here for more.

Salter angling for a row Down Under

From the Reading Chronicle

BMSTC Patron Martin Salter  is refusing to retire quietly.
The former Reading West MP, who stepped down at the General Election and moved to Sydney, has waded into an acrimonious debate on fishing in Australia. He gave evidence to the New South Wales (NSW) Parliamentary Inquiry into Recreational Fishing, accusing the main parties of letting down the state’s one million anglers.  Read article here!

‘Slap in the face’ for the disabled

From Get Reading:

A shopper whose brother’s girlfriend has multiple sclerosis and was temporarily paralysed has hit out at inconsiderate drivers parking in disabled spaces in Caversham.  Click here for more.

Wednesday, 15 September 2010

Did you know....?

Did you know we have 82 volunteers who help out every week at the Centre by operating our oxygen chamber, reception, book keeping, helping the physio team etc!   This saves over £100,000 + per year!!.  We're so lucky to have so many people freely giving up their time to help on a regular basis and helping us to run our great MS Therapy Centre as efficiently possible Thanks everyone :)

Anger over cannabis drug denial for Whitby MS woman

From the BBC website:

A woman with multiple sclerosis (MS) has criticised a decision which means she has to pay £445 a month for a drug to ease her condition.  For more click here.

Small study shows Asthma drug improves Multiple Sclerosis outcomes

From the MSRC:

A medication used to treat asthma and COPD has been found to improve clinical outcomes for patients with multiple sclerosis, especially during the first year following diagnosis.  For more clike here.

Encouraging early trial results of ofatumumab for relapsing remitting MS

From the MS Trust:

Results of a small phase II trial of the drug ofatumumab have been released. The trial primarily tested the safety of the drug, but also looked at the effect on brain lesions as measured by MRI.   For more click here.

Incontinence services condemned by doctors

From the BBC website:

Millions of people in the UK with bladder and bowel problems face a "life sentence" of suffering because of the poor quality of care, say doctors.   For more click here.

Financial products for people with MS

From the MS Trust

It is an unfortunate fact of life that when people are diagnosed with MS, the range of financial products available to them is reduced and the premiums charged increased. Not all providers will take this narrow view of MS, and it can be possible to find competitive rates. The MS Trust is unable to recommend specific companies, but the following links may be useful.  For more click here

Canada's Health ministers agree to move 'quickly, ethically' on MS treatment

From the MSRC website:

Canada's provincial health ministers pledged Monday to work together to explore ways to speed up the study of a controversial treatment for multiple sclerosis.
The agreement came as the ministers gathered in St. John's for two days of meetings on everything from sodium reduction to a national pharmacare program.  For more click here.

CCSVI conference - UK 1st International Conference takes place in Glasgow

The location for the conference is;

The Beardmore Hotel and Conference Centre,
Beardmore Street, Clydebank, Glasgow, G81 4SA. Tel: +44(0) 141 951 6000


October 29th 2010 - Doctors Day, for Medical professionals only.


October 30th 2010 - Public Day, for anyone interested in CCSVI and the way forward.

Click here for more details

MS calendar girls bare all in Lakes!

From the BBC website:

It's more than a decade since the ladies of the Rylstone Women's Institute stripped off for that famous calendar which raised half a million pounds for Leukaemia Research.


And where the Yorkshire Dales led the way, the Lake District has now followed.

The latest calendar girls to bare all for charity have taken to the chilly Lakeland fells to raise money for the Multiple Sclerosis society.  For more click here.

Epstein-Barr virus disrupts blood-brain barrier, predisposing to MS

From the MSRC website:

Multiple sclerosis (MS) is an inflammatory neurological disease that is widely regarded as the outcome of complex interactions between a genetic predisposition and an environmental trigger.   For more click here.

Friday, 10 September 2010

Russian regulatory approval for Gilenya(R) oral multiple sclerosis therapy

From the MSRC:

Novartis International AG announced Russian regulatory approval for Gilenya(R), a once-daily oral multiple sclerosis therapy and first in a new class processed and transmitted by Hugin AS. The issuer is solely responsible for the content of this announcement.   For more click here

MS Society challenged on the validity of the research they conducted for their respite decision

From the MS Trust website:

Benedict Rickey, who works in the charity sector and who's uncle has MS, has written an insightful piece on the use of "evidence" in the MS Society's decision to close the specialist respite centres across the UK.   For more click here.