Monday, 31 May 2010

Seaford mum's second Poland trip for op - Michele & Ella Findlay

Note: Michele Findlay is the leader of the Steering Group MS-CCSVI-UK.  I wish her the very best of luck with this campaign.

Published Date: 26 May 2010 Eastbourne Today:
A MOTHER from Seaford has travelled to Poland with her MS sufferer daughter for a second time for an operation.

Michele Findlay told the Gazette in February how she and her daughter Ella would be travelling to the country later that month to undergo tests in a bid to improve the 31-year-old's condition.
During the first visit Ella, who was diagnosed with multiple sclerosis 10 years ago, found she had Chronic Cerebro-Spinal Venous Insufficiency (CCSVI).
http://www.eastbourneherald.co.uk/seaford/Seaford-mum39s-second-Poland-trip.6320292.jp

Friday, 28 May 2010

The Essential Health Clinic - CCSVI Update

 Update on the Essential Health Clinic Facebook Page:
"CCSVI update we are ahead of schedule - our new specially designed for CCSVI scanner arrives next week. We will be doing lot's of scanning before our appointments officially start in July." http://www.essentialhealthclinic.com/

Has residential respite care had its day?

Published in The Guardian, 26th May 2010

"For several decades the respite care homes provided by the MS Society have had a reputation as excellent temporary refuges, allowing people with multiple sclerosis and their carers a short break from daily pressures of living with the condition.

In two weeks' time, however, the charity faces a critical decision as its trustees rule on whether they want to continue running four residential homes across the country or whether traditional forms of respite care are outdated and need comprehensive reform."  Read the full article here

The Red Wheelies supporting the Kent MS Therapy Centre!

Scooter Formation Display Team raising money and awareness for the Kent MS Therapy Centre on Quingo Mobility Scooters!

http://www.redwheelies.co.uk/

Vitamin D: hope on the horizon for MS prevention?

Posted on the MS Trust wesbsite
Source Lancet Neurology

An editorial in the latest issue of Lancet Neurology discusses the potential for vitamin D supplements to reduce the risk of developing multiple sclerosis.
The article concludes that trials are needed to address the many uncertainties that remain. Because any benefits for MS could take decades to emerge, a long-term outlook is needed from policy makers.http://www.mstrust.org.uk/news/article.jsp?id=3765

Thursday, 27 May 2010

MS Societies' work around vitamin D highlighted in Lancet Neurology

From the MS Society website:

A news article in the latest edition of The Lancet Neurology highlights the potential for vitamin D supplements as a reasonable prevention strategy for MS and mentions the MS Societies’ work around vitamin D. http://www.mssociety.org.uk/news_events/news/press_releases/lancet_neurology.html

Wednesday, 26 May 2010

Live webcast of todays meeting MS Society and MS-CCSVI-UK

To watch the live web cast follow the link below - you may wish to check the link earlier in the day to make sure you can connect!

http://www.voiceprompt.co.uk/mssociety/ccsvi/

Shifting MS Film

Fantastic film from gloriamorrisfilms posted on the MS Society website on the 24th May 2010.

"A diagnosis of MS is devastating for a young person but here is a group of young people with MS who move on with their lives."

http://www.youtube.com/watch?v=59HQ6v_5_EM

£1,571.59 raised at the Summer Fayre and Plant Sale!


The BMSTC Members Link group had a very successful event last Saturday raising an amazing £1,571,.59!  Thank you to all of the organisers and volunteers who worked so hard on such a hot day to make this event such a huge success! :0)

Phase III Trial of MS antibody daclizumab starts

Posted on the MS Trust website
25 May 2010 - Bioworld
Biogen Idec Inc and Abbott kicked off a Phase III trial comparing their anti-IL-2 antibody daclizumab to Biogen's Avonex (interferon beta-1a) in relapsing-remitting multiple sclerosis.
The trial initiation triggered a $30 million milestone payment from Biogen to Abbott.  For full article click here

Tuesday, 25 May 2010

MS Society CCSVI meeting fully booked - you can watch a live webcast!



The MS Society meeting on Wednesday 26th May - 1pm - 3pm is now fully booked.  You can still join the MS-CCSVI-UK rally at the same time outside of the MS Society HQ if you feel strongly about raising awareness.  You can also watch a live webcast of the event via the MS Society website

Multiple Sclerosis Resource Centre Vitamin D Research

Published on the MSRC Website:
Source: The Lancet Neurology Copyright © 2010 Elsevier Limited. (25/05/10)
Vitamin D: hope on the horizon for MS prevention?

Monday, 24 May 2010

The Jubilee Sailing Trust - Tall Ship Sailing Adventures for All

The JST is a registered charity that owns and operates Lord Nelson and Tenacious, the only two tall ships in the world designed and built to enable people of all physical abilities to sail side-by-side as equals.

The new 2011 voyage programme is now available online, click here for more information

Three Charities Golf Day - Lots for the Auction of Promises

Look at these fantastic lots up for auction at our Three Charities Golf Day on Wednesday 16th June 2010! 
  1. A Four Ball at Wentworth Golf Club, including breakfast and lunch.
  2. Lunch for two with Paul Daniels and Debbie McGee at Phyllis Court Country Club
  3. Henley Regatta- private boat trip up and down the course for up to four people in a 23ft motor cruiser – refreshments included.
  4. Four Ball at Henley Golf Club
  5. Behind the scenes at BBC Radio Berkshire – sitting in the studio with Debbie as she goes live on  Sunday morning
  6. Two Tickets to ‘Have I Got News for You’
  7. A Complimentary member ship from Guards Polo Club Windsor.
  8. Bracelet designed by Angie Best
  9. Shenington Gliding Club Voucher.
  10. Two Ground tickets for the Henley Hawks
  11. Original sketches of Henley by Darren St. John.    (Signed)
  12. Original Tim Bulmer Painting and Book. Donated by Lemongrove Gallery.
  13. Four Ball at Goring & Streatley Golf Club
  14. Two Rewind Festival tickets for Sunday
  15. One week in a Holiday Home in Tenerife
  16. Personal Training Session with Angie Best in her studio
For more details about the event click here! Limited places available so book now to secure a place!

MS Society open meeting South area - Guildford

Date: 12 June 2010 to 12 June 2010

Location: Holiday Inn Guildford

Are you a member of the MS Society? Want to hear from the MS Society’s trustees and directors? Want to share your ideas and priorities?

Then this is the event for you! Click here for more info

World MS Day - 26th May 2010

Join the global MS Movement - end MS!


The international day – celebrated across the globe – has been organised by the Multiple Sclerosis International Federation (MSIF).

We want to encourage people to talk about their experiences of MS, donate funds to MS research and encourage politicians to take action.

* Watch the World MS Day film 
* Follow World MS Day on Twitter 
Beautiful Day - English from MSIF on Vimeo.

Government pledge to overhaul social care in UK

News posted on the MSRC Website:
Source guardian.co.uk@Guardian News and Media Limited 2010 (24/05/10)

Commission set up to examine the funding of long-term care will report within a year.
Ministers today pledged to urgently overhaul Britain's "unsustainable" social care system and tackle a growing problem which the Labour government did little to address during its time in office.
An independent commission is being set up to examine the funding of long-term care and will report within a year. Its job will be to devise a plan for a new system of paying for the personal care services which are needed because of Britain's increasingly elderly population.  Read the full article here.

Friday, 21 May 2010

£15,128.40 raised for BMSTC at the Reading Half Marathon 2010!

Today is precisely two months on from the Reading Half Marathon and I have just received the cheque for £3,900 from the organisers of the event. This is their donation for your marshalling services and the army of 40 volunteers that we provided on the day and means that the Berkshire MS Therapy Centre has made a record amount of money from this event.
Altogether we had 37 runners and they have raised £11,228.40 in sponsorship so far; with this cheque you have helped to raise an amazing £15,128.40 for the Centre, and I am absolutely delighted. I attended a debriefing meeting with the organisers last month and they have confirmed that we are now one of the OFFICIAL CHARITIES of Reading Half Marathon, due to meeting their request to provide so many marshals.
Thank you so much for your help, it is truly appreciated by all our members who rely on the MS Therapy Centre for support.

CCSVI news from Australia

Link from the MS-CCSVI-UK Facebook page
Kerri has posted an update about changing attitudes of the MS Society Australia.  The MS-CCSVI-UK are holding talks next week with the MS Society UK, it will be very interesting to see what happens and I look forward to posting the news.

http://www.youtube.com/watch?v=vqld1AV8Zns&playnext_from=TL&videos=aKUP3UL7Ux8&feature=recentu

Get £60 for taking part in a 40 minute interview the UK

I am writing to you to let you know that The Patients Voice is running a new study with people who suffer from various immune deficiency issues.

The interview will take place by telephone and will last no more than 40 minutes for which we will reward you with £60 to thank you for your time.

These interviews are also open to parents of children who qualify for the study.

The objective is to understand the patients’ experience with immunoglobulins; how you perceive the treatment, the way it is to be administered, the consequences in daily life, and the possible expectations, or requirements for improvement from the patient’s point of view.
To qualify you will need to:-
  • Receive treatments with subcutaneous Immunoglobulins by injection at home
  • Live in the UK.
  • Have been diagnosed with either one of the following types of condition:
  • Primary Immuno-Deficiencies (PID)
  • Secondary Immuno- Deficiencies (SID) such as transplant patients, multiple myeloma or chronic lymphoid leukaemia patients.
  • Auto-immune disease. 
If you do take part we will reward you with £60 by way of incentive. If you suggest somebody who participates, we will reward you with £15 by way of thank you .
However places are limited so please get in touch as soon as possible!
If you wish to take part please contact me through our Facebook page or Website giving a telephone number where we can contact you. One of my colleagues will give you a call to discuss the research in more detail and to set up a time for your interview.
http://www.thepatientsvoice.org/

Thanks very much for your interest
Best wishes
Belinda
Community Manager, The Patients Voice

Having difficulty finding us on Facebook?

A couple of people have mentioned that they have not been able to find our page, so here's how to do it...Log into Facebook as usual in the search box at the top of the Facebook page start typing "Berkshire Multiple Sclerosis Therapy Centre" you will probably only need to type the first four or five letters before you will see our logo in the list.  Double click on the logo and you're there!  Click on "like" top right of our page to join the group.  You should pick us up by typing our page name into a search engine such as Google.   It's simples as they say, but any problems give me a call on 0118 901 6000 or email pippa@bmstc.org

Sativex deemed approvable by regulators in UK/Spain

Published on the MS Trust website:
20 May 2010 - Source Pharma Times
It was good news for GW Pharmaceuticals and Spanish partner Almirall this morning after regulators in the UK and Spain agreed that, under the decentralisation procedure, Sativex is approvable in Europe.
http://www.mstrust.org.uk/news/recentstories/article.jsp?id=3727

CCSVI - Behind the headlines

Feature in the MS Trust Open Door publication for May 2010:
What's the idea?
Chronic cerebro-spinal venous insufficiency (CCSVI) is a theory proposed by Professor Paolo Zamboni, a vascular surgeon at the University of Ferrara in Italy. He suggests that an abnormal narrowing in veins taking blood from the brain causes a build up of iron which crosses the blood-brain barrier damaging cells in the central nervous system. Read the full article http://www.mstrust.org.uk/information/opendoor/articles/1005_02.jsp

Thursday, 20 May 2010

Yoga and MS

Interesting article on the MS Trust website about Yoga and MS.  We run Friday afternoon and Monday evening yoga sessions for people with MS.  Let me know if you're interested. pippa@bmstc.org

http://www.mstrust.org.uk/information/opendoor/articles/1005_08_09.jsp

Royal Berkshire NHS Foundation Trust wins Quality

Congratulations to the Royal Berkshire NHS Foundation Trust! 

The Royal Berkshire NHS Foundation Trust has won this year’s CHKS Quality of Care Award - part of the CHKS Top Hospitals Programme 2010. The programme, which is now in its 10th year, is the only data-driven set of awards in the UK and celebrates excellence in the areas of patient safety, quality of care and data quality.

http://www.royalberkshire.nhs.uk/in_the_press/news_at_the_royal_berkshire/chks_quality_of_care_award.aspx

Tuesday, 18 May 2010

Real treatment or hoax?

From the London Free Press & featured on the MS Trust website:

If Mary Donner gets a shot at a controversial new treatment for multiple sclerosis, she'll take it.
The 56-year-old London woman is already on a waiting list for preliminary testing. If that shows she is a candidate for the treatment, Donner said she's prepared to travel overseas to have it done.

"I would like to be able to feel better. In my case, I am still able to walk, but every day I get a little bit worse and the fatigue sometimes is just so debilitating that you can't do anything," said Donner, who was diagnosed with MS 14 years ago.

http://www.lfpress.com/news/london/2010/05/17/13972116.html

Summer Fayre and Plant Sale - Saturday 22nd May

This Saturday 22nd May 1.00 pm - 3.00 pm

Come along and browse various stalls including:

Plants - Cakes - Books - Toys - Tombola - Raffle - Games plus much more!
If you have items to donate to the sale, please bring them no more than a week before as we have limited storage at the Centre.

If your interested in helping out we'd love to hear from you!   Please contact ms@bmstc.org

The Three Charities Golf Day - June 16th 2010

The Berkshire MS Therapy Centre has joined with The MS Society (Henley & Districts Branch) and The Headway Thames Valley Charity for a Golf Tournament at Henley Golf Club to raise funds for all three charities. The Henley Golf Club course is highly regarded by keen golfers and offers a challenging course in beautiful surroundings.

For more information please contact jackie@bmstc.org or download an entry form please see our events page:

Monday, 17 May 2010

CCSVI - 9 and a half weeks post procedure

Youtube clip posted ub on the MS-CCSVI-UK Facebook page:

Kerri 9.5 weeks post balloon angioplasty 17th May 2010.

http://www.youtube.com/watch?v=W56iHbkz1g8

Wokingham Lions Donation

Peter Bowsher MBE and trustee at the Berkshire MS Therapy Centre is seen collecting a cheque from Susan Balchin, President of the Wokingham Lions. The donation of £397.50 will be used to buy electrodes for FES equipment, used in the physiotherapy department.

Thank you Wokingham Lions for your generosity and support.

BMSTC AGM - Thursday 27th May 2010 - 4.00 pm - 6.00pm at the Centre

Come along to our AGM and find out what has been happening at the Centre over the past year, review our accounts and help to elect our board of Directors (Managment Committee/Trustees) and Officers.

We are delighted to welcome Simon Gillespie, Chief Executive of the MS Society as our Guest Speaker.

Woman with MS to climb Ben Nevis in wheelchair inspired by canine helper

From the Scotsman 16th May 2010: An amazing story!  Good Luck Sally!

AT 47 years old, in a wheelchair and in constant pain, Sally Hyder is not a typical extreme sportswoman. But although she has multiple sclerosis, she is taking on a remarkable challenge by aiming to become the first wheelchair user to ascend Ben Nevis unaided.

http://news.scotsman.com/edinburgh/Woman-with-MS-to-climb.6297713.jp

Vascular comorbidity is associated with more rapid disability progression in MS

From the MSRC Website:

ABSTRACT

Background: Vascular comorbidity adversely influences health outcomes in several chronic conditions.


Vascular comorbidities are common in multiple sclerosis (MS), but their impact on disease severity is unknown. Vascular comorbidities may contribute to the poorly understood heterogeneity in MS disease severity. Treatment of vascular comorbidities may represent an avenue for treating MS.  http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/2944

Saturday, 15 May 2010

BBC Video news - Engineers invent 'off-road' wheelchair

From the BBC Website:
Two engineers from the University of Bath have invented an off-road wheelchair to enable disabled people to cover terrain previously off limits to them.
Tim Morgan, who developed the idea with John Wardle, demonstrates the "Mountain Trike" and explains where he got the idea from. http://news.bbc.co.uk/1/hi/technology/8672455.stm

Friday, 14 May 2010

MS Society invitation to attend CCSVI Meeting 26th May 2010

Date: 26 May 2010 to 26 May 2010   Location: MS National Centre, North West London
The MS Society has been approached by online group MS-CCSVI-UK who requested a meeting with the MS Society about CCSVI. As there is a great deal of interest in this subject, we are opening the meeting to anyone affected by MS. We'll be welcoming people on Wednesday 26 May, 1pm-3pm at theMS National Centre. This is an opportunity to discuss CCSVI and ask questions to the MS Society.


http://www.mssociety.org.uk/news_events/events/ccsvi_meeting.html

Sexuality and MS - a guide for women published in 2007

From the MS Trust:
A book for women to help them talk about their concerns. It explains how MS can impact on both sexuality and intimacy and offers positive and practical solutions.
The book is illustrated by the comments, opinions, experiences and tips for coping of women with MS.

http://www.mstrust.org.uk/shop/product.jsp?prodid=213

Sexuality and MS - a guide for men survey

Featured article on the MS Trust website:
Sexual problems are a rarely discussed symptom of MS and many men are unaware of treatments that might be available and how to discuss what they are experiencing with their partner or with a health professional.
Having published Sexuality and MS - a guide for women in 2007, the MS Trust is about to start work on an equivalent resource for men. To help us make the contents and design of the resource as helpful as possible, we are asking men to complete a brief, anonymous survey about the problems they have encountered and how the new resource might be best presented.

http://www.mstrust.org.uk/information/publications/sexuality_men.jsp

MS patient slams NHS operation snub

From the MSRS Website:
An Inverness woman being forced to go private for treatment on a debilitating disease has launched a battle to make the operation available on the NHS.
And Audrey Barnett (39), who is housebound because she suffers from multiple sclerosis (MS), has claimed it is "scandalous" that a leading research charity has failed to back the surgery - costing up to £6,000 privately.


http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/2954

Shine on Scotland - vitamin D for all

If you had one chance to help reduce Multiple Sclerosis in Scotland, what would you do?



This is the question which Ryan McLaughlin, aged 14, from Glasgow, has an answer to. Watch the video to find out more, and please share this video on your Bebo, Facebook and MySpace pages. You could help protect future generations of Scots from Multiple Sclerosis by writing to your MSP and asking them to support the campaign.
http://www.shineonscotland.org.uk/

Thursday, 13 May 2010

MS Society - NSF QR5 Examples of Good Practice

Have a look at the link to the MS Society Examples of Good Practice.  Great to see BMSTC there (scroll down the page) along with the Gloucester and Exeter MS Therapy Centres!! Happy days :)

http://www.mssociety.org.uk/for_professionals/standards_of_care/national_service_framework/qr5_examples_of_.html

CCSVI Treatment Packages from the Essential Health Clinic Glasgow

We are now pleased to give further information on the CCSVI Treatment Packages that will be available through The Essential Health Clinic in Scotland from July onwards.



These Treatment Packages are designed to cope with the requirements of our patients; many of whom are traveling considerable distances to see us.


"We believe that the patient experience should be seamless from consultation and diagnosis through to treatment and surgery. Our priority is to give every patient the highest standard of care."



http://www.essentialhealthclinic.com/website/index.php/clinic/ccsvi-appointments/treatment-packages.html?utm_source=CCSVI+News&utm_campaign=757cd9c98b-CCSVI+Treatment+Packages&utm_medium=email

Wednesday, 12 May 2010

World MS Day - 26th May 2010

Source: The Multiple Sclerosis International Federation (12/05/10)
Activities have already started in the run up to World MS Day.
In Denmark, a 'Researcher in a Box' has set off on a nationwide tour as part of the Danish MS month. He is scheduled to stop off in six locations. He certainly entertained this group of shoppers - watch the video
This week marks the start of the Cannes (France) and Art Directors Club (Germany) film festivals. The World MS Day film 'Beautiful Day' has been entered into several categories, hopefully reaching a wider audience and raising awareness about MS. Let’s keep our fingers crossed for some strong results. Watch 'Beautiful Day'

In Turkey, activities for World MS Day and the Turkish MS Society’s MS Week include an exhibition of paintings of people with MS, which will be on display for ten days at one of Istanbul’s busiest shopping centres. On 26 May, there will be a bicycle tour of the city to raise money for the MS Society, and in the evening a musical extravaganza at the National Theatre with the MS Choir headlining. On 30 May, 350 people will attend a day-long conference with sessions led by doctors, physical therapists, dieticians, and people with MS.


To find out how World MS Day will be celebrated in your country, contact your local MS society. To find their contact details visit www.worldmsday.org


Source: The Multiple Sclerosis International Federation (12/05/10)

MS-CCSVI-UK Rally - Wednesday 26th May 1.00pm

From a Facebook post by the MS-CCSVI-UK group:
On Wednesday the 26th May at 1pm people from MS-CCSVI-UK will be standing outside the MS Society Headquarters and making a noise. The MS soc headquarters are at 372 Edgeware Road, NW2 not far from Brent Cross. Across the road there is a small parade of shops with a fairly large pavement, so probably quite a suitable space of standing around. Michèle has requested a meeting with Simon Gillespie the Chief Executive. We are going to deliver a letter stating our intentions regarding CCSVI and our wish for a dialogue with the MS soc. We thought that we should all dress up as plumbers, wearing MS-CCSVI-UK T shirts (you can buy these at cost price from our website) and have placards with slogans and requests. It might also be an idea to have balloons, maybe even on the end of some kind of tube, like those insulation foam tubes you can buy at DIY shops.
Michèle is going to find out about hiring a megaphone and it would be good if some people had other kind of noise making implements: drums, rattles, whistles….


It would also be useful if people could bring with them some explanation of CCSVI to hand out to passers by and the local shops. This information is available in the Resources page of the website. She has rung the local police station and is filling in the form to make sure we are allowed to stand there as a group. She will also be driving there and if there are people who find it difficult getting to the venue she may be able to pick up from a nearby rail station.


Please come and bring lots of friends with you. Here is a link to the site so you can see where you are going: http://bit.ly/bWbVef
http://www.facebook.com/home.php?#!/event.php?eid=120707147950923&ref=mf

Tuesday, 11 May 2010

Myelin Research - Researchers explore new ways to reverse MS damage

From the MSRC website:
A National Institutes of Health grant will help University of Central Florida researchers explore new ways to potentially reverse the damage caused by multiple sclerosis and other neurological disorders.
Stephen Lambert, an associate professor in the College of Medicine and a member of UCF's Hybrid Systems Laboratory, has received $428,000, the first installment of a four-year, $1.9 million project. His team will study the breakdown of myelin, a substance that coats and protects nerves inside the brain and spinal cord, enabling electrical signals to reach distant nerve cells and muscles.

http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/1845

Improving understand of MS through MRI

From the MS Society website:
In this special MS Society online awareness talk, Dorothy Sutton, a person with MS, discusses why the use of magnetic resonance imaging (MRI) in MS has been so important to her.


Professor David Miller, an MRI expert, provides an explanation of the science behind MRI, and how it is applied to neurology and MS research.
 
http://www.mssociety.org.uk/support_and_services/audio_and_video/video/awareness_talks/2010_talks/mri.html

Multiple sclerosis stem cell therapy guidelines launched

Posted on the MS Trust website:10 May 2010 - BioNews

On 6 May 2010, the journal Nature Reviews Neurology published a new report about the future of multiple sclerosis (MS). The guidelines focus on the use of stem cell therapy.
They were written by a group of international experts on the disease, and agreed upon by various MS societies, following a meeting in London in May 2009 where an international consensus was reached.


The report underlies several key points. First it outlines different types of stem cell therapies for MS and how each has worked in the past. Then it also lists different delivery methods for those therapies, and how those therapies should be evaluated in terms of efficacy and safety.
http://www.mstrust.org.uk/news/recentstories/article.jsp?id=3703

Health care priorities for the next decade

Posted on the MS Trust website:

Following the general election, all the Health Ministers lost their seats with the exception of Andy Burnham. This means that whatever happens, there will be a new team at the Department of Health.
The MS Trust believes that the following should be priorities when planning health care services for the next decade.
The MS Trust wish list for the next decade...http://www.mstrust.org.uk/news/article.jsp?id=3706
 
 

Monday, 10 May 2010

£3,689!! Thank you to the Hazeley Lea Clay Club Grand Annual Charity Shoot!!

We would like to say a huge thank you to the Hazeley Lea Clay Club for organising the Annual Charity Shoot on behalf of our Centre.  We would also like to thank all of the companies who sponsored the event, participants and the volunteers who helped on the day to raise an amazing  £3,689!!!  Thank you all very much :)

Shift.ms Community for Younger People with MS

Shift.ms is a community for young people affected by Multiple Sclerosis. Users can share, support and interact with each other throughout the site. Register now to create a profile, plot yourself on the map and start adding your voice to the community.

http://www.shift.ms/

Possible Link Between Multiple Sclerosis Brain Atrophy, Cognitive Function And Low Vitamin D Levels

Source: Lois Baker University at Buffalo
Low vitamin D levels may be associated with more advanced physical disability and cognitive impairment in persons with multiple sclerosis, studies conducted by neurologists at the University at Buffalo have shown.   http://www.medicalnewstoday.com/articles/187249.php

Canadian MS Society lobbies government for $10 million for funding into CCSVI and MS research

Facebook post by MS-CCSVI-UK:
The Multiple Sclerosis Society of Canada is calling on the government to provide $10 million for research into chronic cerebrospinal venous insufficiency (CCSVI) and MS.

http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/2954

Wheelchair Kamikaze

The Rants, Ruminations, and Reflections of a Mad MS Patient!
http://www.wheelchairkamikaze.com/

MS-MRI

An informational website: - http://www.ms-mri.com/index.php

My CCSVI Liberations Prodedure

A blog of a personal expericence of CCSVI - http://mymsliberationprocedure.blogspot.com/

MS Society Canada - CCSVI and Multiple Sclerosis Information Videos

On Wednesday April 7, 2010, the Multiple Sclerosis Society of Canada hosted an information session discussing the link between chronic cerebrospinal venous insufficiency (CCSVI) and multiple sclerosis (MS).

You can watch all 14 videos on the MSRC's CCSVI General Information Page - http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/2955

Thursday, 6 May 2010

BBC Coverage of CCSVI Theory

Re-post of BBC Breakfast News coverage on CCSVI - I'm re posting this BBC coverage that was broadcast on the 11th February just in case people missed it the first time around!

Researchers agree on future of MS stem cell research

Published on the MS Society website:
Today (6 May) Nature Reviews Neurology publishes an international consensus on the future of stem cell transplantation research for people with MS, paving the way for more co-ordinated global research efforts and potentially better, and quicker, patient access to stem cell clinical trials.
http://www.mssociety.org.uk/news_events/news/press_releases/guidelines.html

The Report on the LDN Conference

Facebook post by Sylvia Lane, one of our memebers who attended the conference:

The report on the LDN conference in Glasgow can be read here, there is also a report towards teh bottom of the report about CCSVI.
 http://www.bigonglasgow.com/2010/2010-ldn-conference-report-79509

American MS Society fast-tracks research on chronic cerebrospinal venous insufficiency (CCSVI)

From the MS Resource Centre website:
The National Multiple Sclerosis Society in the United States is assuming a leadership role in disseminating information and mobilizing research on the role of chronic cerebrospinal venous insufficiency in the etiology and treatment of multiple sclerosis. The move comes in response to mounting pressure from patients and the scientific community questioning the hypothesis.
http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/2954

Frenchay Hospital trials offer MS stem cell hopes

Posted on the BBC Website: Clinical trials on six multiple sclerosis (MS) patients who have had stem cell injections have produced "encouraging" results, scientists say.

Prof Neil Scolding was the guest speaker at our AGM back in 2008 - very encouraging to see how this work is progressing.

http://news.bbc.co.uk/1/hi/england/bristol/8663628.stm

Wednesday, 5 May 2010

CTV Newsclip posted in MS-CCSVI-UK Facebook page

CTV News clip posted by Omar on the MS-CCSVI-UK.
Diana Price fighting for MS treatment
http://watch.ctv.ca/news/top-picks/ms-treatment/#clip297980

Canadian trials to examine 'liberation procedure' for multiple sclerosis

From the MS Trust website 03 May 2010
Duncan Thornton is still getting used to enjoying the small things that most Canadians take for granted.
"I do laundry spontaneously," says the 47-year-old resident of Winnipeg, Manitoba. Diagnosed with multiple sclerosis in August 2009, Thornton figures he's had the disease for at least two decades. "Fatigue was always the most disabling aspect of my illness... For the last 20 years, anytime I stood for more than five minutes I began looking for a chair."

http://www.mstrust.org.uk/news/article.jsp?id=3685

Tuesday, 4 May 2010

CCSVI Treatment packages - UK waiting list

The Essential Health Clinic:
We are now pleased to give further information on the CCSVI Treatment Packages Waiting List which opens on Wednesday 5th May.

We fully appreciate the problems some of our patients have experienced in trying to book CCSVI Scanning appointments and we have taken on board all the comments you have sent to us. We are a committed team and have dedicated considerable time and resources towards putting systems in place that will enable us to cope with the number of enquiries we have received (and continue to receive). We are putting the final details together for a range of Treatment Packages (including Scanning, Venogram, Liberation Treatment) and will be announcing these within the next 10 days. These will be designed to cope with the requirements of our patients; many of whom are traveling considerable distances to see us.
"We believe that patient experience should be seamless from consultation and diagnosis through to treatment and surgery. Our priority is to give every patient the highest standard of care."
If you are interested in having the CCSVI Treatment, we strongly recommend that you take a place on our waiting list as soon as possible (opening Wednesday 5th May). Deposits paid are fully refundable (see terms below). This not only gives you the peace of mind in knowing you have secured a place, but helps us with our forward planning for the next 12 months.
Waiting List
Anyone can apply to go on our waiting list. A deposit of £100 is required and this is fully refundable at any time prior to booking one of our treatment packages. This service opens on 5th May at 11.00 GMT (12.00 BST).
Places will be reserved on our waiting list in the strict order in which we receive your deposit. Each month we will email those on our waiting list to advise them on the anticipated length of time before it is expected that they will receive an appointment.
Once the next block of appointments is available they will be offered to those who have been on our waiting list the longest. These people will then be able to book their appointment online using a special code to deduct their deposit from the Treatment Package of their choice.


Our Basic Treatment Package at £450 includes;
CCSVI Screening Scan (up to 60 minutes) followed by a Consultation with one of our Doctors (up to 60 minutes). This will take place at our Glasgow clinic in Rutherglen on weekdays only. Extra option of Blood Testing package (Vitamin D, Omega-3, Nitrotyrosine) at an additional £125


(both fees are fully refundable up to 30 days before CCSVI Screening Scan).


Note: Our Treatment packages will only be offered to people on our waiting list and in strict rotation.


Please note we can only accept waiting list applications via the website. We are unable to take orders/payment for the waiting list or Treatment Packages over the phone.
Note: Waiting list places are not transferable
Prior to the opening of the Waiting ListIf you choose to go on our waiting list, you will be asked to log into your online account with us. It is strongly recommended that you set this up prior to Wednesday as this will save you some time when obtaining your place on our Waiting list. To Register for your FREE account please click here. Once you have entered your basic details you will be taken into your account 'dashboard'. Under the heading 'Address Book', please click on the 'Edit Address' link and enter your address details. This is then recorded as your 'primary address'. Please also enter your telephone details. Once you click on the 'save address details' (bottom right of the screen) and your account will then be setup ready for booking on our Waiting List on Wednesday. All you will need to do is log into your account (by clicking on the Login button on the top right of our website).
The Scottish Clinic we have partnered with for the Venogram and Liberation treatment is the ultimate, state of the art, 5-star healthcare facility based in Scotland. This clinic offers unparalleled access to leading consultants in serene, comfortable surroundings.
London facilities are still being looked into but are not likely to be available until the start of 2011.

http://www.essentialhealthclinic.com/website/index.php/clinic/ccsvi-appointments/waiting-list.html?utm_source=CCSVI+News&utm_campaign=b528266f46-CCSVI+-+Waiting+List+May_5th&utm_medium=email

Multiple Sclerosis Information - Brunel University Research Study

Multiple Sclerosis Information:
 A research team at Brunel University in the UK is trying to find people who use intermittent self-catheters as a result of neurological damage to the spinal cord who would be willing to complete a questionnaire.

http://www.thepatientsvoice.org/The_SMILE_study.asp

BMSTC Annual Review & Report and Accounts

The Berkshire MS Therapy Centre Annual Review and full Report and Accounts for 2009 are now available to download from our website.

http://www.bmstc.org/About-Us/Annual-Report.aspx

Please contact pippa@bmstc.org if you would like to be sent a hard copy.

Multiple Sclerosis Specific Stem Cell Research

From the MSRC website:
New treatment helps MS patients achieve ‘long-lasting remission’

Ottawa doctors, who claim a new medical technique can cause a “very long-lasting remission,” are giving hope to multiple sclerosis patients.


“The inflammatory nature of the disease has virtually ceased in everyone who has received this transplant,” said neurologist Dr. Mark Freedman, who led the study with bone marrow transplant specialist Dr. Harold Atkins.

5th May 2010 - Global CCSVI Day

5th May 2010 is Global CCSVI Day raising awareness across the world about the new theory.

CCSVI poll on the *WEBSITE*

http://www.ms-ccsvi-uk.org/home/global-ccsvi-day.html

Global CCSVI Radio:  http://bit.ly/cDSF24
Next Show: news from around the world on Global CCSVI Day http://bit.ly/9cxv4E
Wed 5th May 6pm BST