Friday, 30 April 2010

CCSVI - 7 Weeks post procedure.




http://www.youtube.com/watch?v=sazvSthoBs4&feature=player_embedded

Enjoy a FREE day at Beale Park with Gowerings Mobility Matters Roadshow 11th, 12th & 13th May 2010

Gowerings Mobility Matters 2010 Roadshow, 11th,12th & 13th May at Beale Park Wildlife Park, near Reading, Berkshire

Join us at the roadshow and we’ll give you FREE entry to the park (saving up to £8.50 per person) to enjoy the fresh air, fun, adventure, enchanting animals, children's entertainment & activities on the banks of Thames. You may even be able ‘compare the meerkat’ or raccoon or alpaca or stinky skunk!  Beale Park is set amongst 350 acres of beautiful parkland, nestling on the banks of the River Thames. http://www.gowringsmobility.co.uk/news-and-events/eventsstory1.asp?intEventsid=43

Vitamin D Research

From the MSRC Website:
Low vitamin D levels are related to MS brain atrophy, cognitive function, studies show.  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.msrc.co.uk/index.cfm/fuseaction/show/pageid/1334

Catching multiple sclerosis before it strikes

From the MS Trust website:
29 April 2010 - Physorg.com
Although there is currently no cure for MS, a breakthrough finding from a Tel Aviv University scientist and physician may lead to earlier diagnosis, more effective intervention.

Multiple sclerosis (MS) is an equal opportunity destroyer. It attacks the central nervous system and eventually renders most patients disabled. Among its high-profile victims are celebrated cellist Jacqueline du Pre, whose career was ended by MS, and Joan Didion, one of America's greatest writers - but they are far from alone.
The National MS Society estimates that there are currently about 400,000 cases in the US and more that 2 million suffer from the disease over the world. Although there is currently no cure, a breakthrough finding from a Tel Aviv University scientist and physician may lead to earlier diagnosis, more effective intervention, and perhaps even a cure for the autoimmune disease.

http://www.mstrust.org.uk/news/recentstories/article.jsp?id=3680

Australian study shows link between MS and birth month

From the MS Society website:
An Australian study published today (Friday 30 April) has shed further light on the correlation between vitamin D and MS.
The study, published in the British Medical Journal, shows that people born after the vitamin D-scarce winter months are roughly 30% more likely to go on to develop MS later in life compared with those born after the summer months.
 
 http://www.mssociety.org.uk/research/research_news/vitamin_d_and_ms.html

Thursday, 29 April 2010

Request from Tracy for Debenhams Collection!

Tracy is urgently seeking volunteers for the latest Debenhams Megaday Event where everything in store is up to 25% off. For the first time we have been given four days –Tuesday 11th – Friday 14th May so we have a lot more spaces to fill. We are looking for people to either collect in store (suitable for all including wheelchairs and scooters) or help staff pack bags on tills (no till operation required but you must be able to stand for the two hours!).

This is a fun event where you will receive an extra 10% discount card to spend in store and a goody bag! We start at 11am and work in two hour slots through to 7 or 8pm each day. If you can spare a couple of hours or one or more of these days, please contact Tracy at the Centre and she will explain how it all works and book you in. These events are great ways of raising awareness of the Centre as well as collecting vital funds for our work. Please help us to fill as many slots as possible and maybe do some summer shopping for bargains at the same time!  Email tracy@bmstc.org or call 0118 901 6000 if you can help.  Thanks :)

Small scale study of the genes associated with venous malformation and MS - brought to MS-CCSVI-UK's attention by Jenny Cornell

This conclusion is an excerpt from the the MS-CCSVI-UK Facebook post. To read the full article click the link below.

"In conclusion, we present an exploration of CNVs, identified by CGH-based methodology, in a small group of patients with associated MS and VM. We identified 234 known CNVs, and determined that the distribution of CNVs along the HLA region showed no peculiar topography in the patients studied.
We found that the overall number of CNVs correlates significantly with the venous malformative phenotype. Consistently with the general significance of CNVs, putatively involved in regulation of gene expression, this finding is interesting, since it may lend weight to the possibility that the number of structural variations within regulatory regions represents a genomic “perturbation” which increases susceptibility for the VM phenotype associated with MS we describe. Obviously, confirmation of these findings will require further studies aimed at comparing CNV profiles in patients with the MS/VM phenotype to those in patients presenting MS alone. This will distinguish peculiar association(s), and potentially disclose common/different underlying genotypes. Regarding specific candidate genes whose expression could potentially be disturbed by genomic imbalance or “perturbation”, pathways analysis suggested that genes involved in angiogenesis and immunity could be proteins worthy of further investigation.
Moreover, we hope that our custom array will be useful for other studies, perhaps to identify structural changes in the numerous disorders proven to be linked to the HLA locus, including MS."
 
Abbreviations
•CNVs: Copy number variations
•CGH: Comparative genomic hybridization;
•SNPs: Single nucleotide polymorphisms;
•VM: Venous malformations;
•EDSS: Expanded disability status scale;
•MS-SS: Multiple sclerosis severity score;
•CCSVI: Chronic cerebrospinal venous insufficiency;
•VHISS: Venous haemodynamic insufficiency severity score;
•VH: Venous haemodynamic criteria.

http://www.facebook.com/home.php?ref=home#!/notes/ms-ccsvi-uk/small-scale-study-of-the-genes-associated-with-venous-malformation-and-ms-brough/10150178048705713

Wednesday, 28 April 2010

Happy 10th Birthday to New Pathways Magazine!

Happy 10th Birthday to the MS Resource Centre's New Pathways Magazine!

http://www.msrc.co.uk/

Accessible Portugal

We are a tourism company set up to offer innovative and quality tourism in Portugal, also accessible to people with reduced mobility or in wheelchairs, their families and friends. We operate mainly from Lisbon, but our services extend to the entire Portugal.

 
We are experts in accessibilities all over Portugal and your vacations are our priority. With that in mind, we acquired top of the range Mercedes Benz vans, accessible to wheelchairs with electric elevator.  http://www.accessibleportugal.com/en/main.php

Tuesday, 27 April 2010

Volunteer Oxygen Operators Needed!

Due to the increase in demand for Oxygen Therapy we are looking for more volunteers to train as Oxygen Operators.  If you would like to help and are interested in finding out more, please give me a call on 0118 901 6000 or email pippa@bmstc.org Thanks :0)

Internet shifts patient-doctor power structure

Interesting post on the MS-CCSVI-UK Facebook page today:

http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20100426/internet_100426/20100426?hub=Health

Sunday, 25 April 2010

Wheelchair accessible France Holidays 2010

Holidays in France in comfort and style in our wheelchair accessible building.

Carl and Jacqui Alban welcome you to I Need A Holiday Too, the new concept in accessible wheelchair holidays for disabled people. Based on the banks of the River Jaudy in La Roche Derrien, the north coast of Brittany in France we offer the comfort of modern living in a rural traditional setting, yet we are only ten minutes away from the beaches, several towns and all the other attractions you would expect on a holiday. http://www.ineedaholidaytoo.com/

Friday, 23 April 2010

Global CCSVI Radio - Blogtalk Radio Reminder 23rd April 2010 8.00 pm UK time

Joan Beal talking about CCSVI on Global CCSVI Radio tonight at 8.00 pm UK time.  Length 1 hour.

http://www.blogtalkradio.com/omario/2010/04/23/joan-beal-talking-about-ccsvi

CCSVI - early results from CCSVI Kuwait

Very interesting post on MS-CCSVI-UK Facebook page on early preliminary results from Kuwait.
http://www.ccsvikuwait.com/Details.aspx?d=4

Good luck to the London Marathon runners this weekend!

We would like to wish everyone running the London Marathon on behalf of the Berkshire MS Therapy Centre or other great cause the best of luck this weekend!  You can do it!

Thursday, 22 April 2010

Dreaming of a safari holiday?

Epic-Enabled Travel is an "Overland" company that is committed to opening up Africa to "Enable the Disabled" travellers through interactive participation tours.  Their tours are wheelchair accessible and family friendly adventure holidays in South Africa.

Highly recommended by one of our members who went there recently!  for more details see their website: http://www.epic-enabled.com/index.htm or their blog for their latest news: http://epicenabled.blogspot.com/

Congratulations to Rose Tocock from the MS Society Reading Branch!

MS Society Awards 2010 - Rose Tocock nominated as MS Fundraiser of the year!

From the MS Society website:
"Rosemary is the fundraising force behind the MS Society’s Reading branch which raises and spends £70,000 every year supporting people with MS locally. Rosemary’s skill lies in managing a really diverse programme of activity."




Our congratulations go to Rose and everyone at the branch for their successful fundraising efforts to provide a wide range of services for their members.

Congratulations to David Wray from the Swindon MS Therapy Centre!

David has been nominated for the 2010 MS Society Awards - MS Volunteer of the Year!


From the MS Society website:
"David has been a driving force behind the very successful Swindon Therapy Centre for MS; without his drive, business skills and enthusiasm the new centre would simply not have happened. The new building now serves 500 people, three times as many as before, and offers support to anyone affected by MS within a 35-mile radius."
 
We are delighted that the Swindon MS Therapy Centre have nominated David to receive this award.  Our congratulations go to all of the team for their hard work in turning the dream into a reality with their fantastic new Centre.

MS research presented at AAN meeting

From the MS Trust website 21st April:
The 62nd annual meeting of the American Academy of Neurology (AAN) took place last week in Toronto, Canada. This annual meeting serves as a showcase for the latest developments in scientific research, and is attended by the world's leading researchers and neurologists.
http://www.mstrust.org.uk/news/article.jsp?id=3661

Wednesday, 21 April 2010

Essential Health Clinic - CCSVI Appointment update

Newsletter update from The Essential Health Clinic received by email today:

We anticipate being able to release information to you next week with full details of the treatment plans we will have available in Scotland. We are aware that you are keen for news on our CCSVI treatment plans and are now very pleased to tell you we expect everything to be in place for us to offer the liberation treatment in Scotland and from as early as August. Our final complete package(s) will be released to you as an E-brochure next week.

Read full article here

MS-CCSVI-UK Newsletter

We have been sent a pdf copy of the MS-CCSVI-UK's latest newsletter.  We have posted this on our website so you can download a copy and forward onto others.  The link below takes you to the BMSTC website "Links Page" scroll down to MS-CCSVI-UK and you can find the newsletter link. 
http://www.bmstc.org/News---Information/Links-to-Other-Information.aspx

Tuesday, 20 April 2010

Rituximab eyed for secondary progressive MS - AAN

From the MS Trust Website:
18 April 2010 - MedPage Today
Targeting B cells implicated in progressive multiple sclerosis with rituximab (Rituxan) therapy might help patients diagnosed with the disease, according to data from a small study reported here [annual meeting of the American Academy of Neurology].
"This study shows that rituximab could be an effective treatment in a subgroup of patients with secondary progressive multiple sclerosis," Carolina Ionete, MD, of the University of Massachusetts Medical School in Worcester, wrote in a poster presentation abstract for the annual meeting of the American Academy of Neurology.

Click here for more  http://www.mstrust.org.uk/news/recentstories/article.jsp?id=3655

MS Trust Fatigue Chat Room - 28th April

From the MS Trust website:
If fatigue is an issue for you, join the next MS Trust chatroom on Wednesday 28th April.

http://www.mstrust.org.uk/news/article.jsp?id=3624

Calling Multiple Sclerosis Patients in London and the UK

Get up to £100 for taking part in an interview about Multiple Sclerosis.
The purpose of the research to gain a better understanding of the impact of MS on people’s lives, attitudes to existing treatments and improvements to services that people would like to see provided.
To qualify you will need to:-
  • Have been diagnosed with MS
  • Have has MS symptoms in the last two years.
  • Live in the UK
The interview will last just one hour. If it takes place in a central location will offer you a reward to £100 to thank you for your time and effort. Alternatively if you wish us to interview you in your own home then we would be delighted to offer you £50 for participation.
However places are limited so please get in touch as soon as possible.
http://www.thepatientsvoice.org/Multiple_Sclerosis_Patients.asp

  

Monday, 19 April 2010

Brunel University intermittent self-catheter study

A request from Research Assistant Laura Kelly, Brunel University:

"I am a Research Assistant on a study currently underway in Brunel University, West London which aims to develop a measure of quality of life for people with neurological damage to their spinal cord who use intermittent catheters.

The early stages of this study involved in-depth interviews with intermittent catheter users in order to facilitate forming suitable questions for the measure which we then checked with intermittent self-catheter users in this population.

We are now at the stage of the study where we would like to find out how well they are working when they are completed by a range of different people. This involves asking people to complete a questionnaire.  We would greatly appreciate any help you can give us in raising awareness of the study."

You can complete the survey online at https://surveys.brunel.ac.uk/smile2-1

Thinking about booking a holiday?

Disabled Accessible Travel offers you a dedicated team of professionals working to provide you with travel solutions that enable you to enjoy your vacation to the full from a wide variety of accessible destinations worldwide. Our mission is to provide you with access to as many travel opportunites as possible for as Managing Director Alan, himself disabled, puts it "the only question a disabled person needs to ask themselves is .. where do I want to go on vacation..?" We obtain the best prices available for you via our association with the International Network for Accessible Travel, the worlds largest brokerage of accessible travel.

http://www.disabledaccessibletravel.com/

or join their Facebook site:

http://www.facebook.com/pages/edit/?id=109852205698855#!/pages/Disabled-Accessible-Travel/25436251080?ref=sgm

Sunday, 18 April 2010

Cambridge University Drug Hope for MS

Suggested by one our our members as a post:

CambridgeUniversity — 29 September 2009 — A drug which was developed in Cambridge and initially designed to treat a form of leukaemia has also proven effective against combating the debilitating neurological disease multiple sclerosis (MS). 
The study, led by researchers from the University of Cambridge, has found that alemtuzumab not only stops MS from advancing in patients with early stage active relapsing-remitting multiple sclerosis (RRMS) but may also restore lost function caused by the disease. The findings were published today in the New England Journal of Medicine.
 
Watch on you tube here

Saturday, 17 April 2010

BMSTC Is now on Facebook!

The Berkshire MS Therapy Centre is now on Facebook!   Become a fan of the page and keep up to date with news and events. 

We would like you to get involved too by posting your news and comments to share with us and other fans of the page.  Click on the link below:
http://www.facebook.com/reqs.php#!/pages/Berkshire-Multiple-Sclerosis-Therapy-Centre/109852205698855

Friday, 16 April 2010

AMPYRA is a new therapy, the first ever with an indication to improve walking in MS

From Marketwatch:

Responders to AMPYRA Treatment Showed Improvement in Average Walking Speed Compared to their Average Baseline for Up to 2.5 Years in Open-Label Studies.

http://www.marketwatch.com/story/acorda-therapeutics-announces-data-on-ampyratm-dalfampridine-presented-at-american-academy-of-neurology-meeting-2010-04-13?reflink=MW_news_stmp

Biogen Races to Create Test for Brain Disease Linked to MS Drug

From Bloomberg Businessweek:

April 9 (Bloomberg) -- Biogen Idec Inc. wants to take the fear out of prescribing its multiple sclerosis treatment Tysabri with a test that can tell patients their odds of getting a deadly brain illness from the drug.

http://www.businessweek.com/news/2010-04-09/biogen-races-to-create-test-for-brain-disease-linked-to-ms-drug.html

Thursday, 15 April 2010

CBC News - Health - MS blogger's surgery journey

CBC news footage of Ginger McQueen going to Poland and having CCSVI surgery. CBC News - Health - MS blogger's surgery journey

Also video interview with Neurologist Dr. Jock Murray on risks of CCSVI and history of hype in MS:
http://www.cbc.ca/video/player.html?category=News&clipid=1464672409

Doctors who believe MS linked to damaged veins urge more testing

From the MS Resource webiste reporting from the Source: The Globe & Mail © Copyright 2010 CTVglobemedia Publishing Inc. (15/04/10)

Plus information on the live Web forum on SSCVI and what it could mean for people living with MS.  - American Academy of Neurology.


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

The Care Quality Commission needs your views NOW!

From the MS Trust website:
The Care Quality Commission (CQC), the independent regulator of health and social care in England, is asking for views on whether it should undertake a special review on The pathway for people with long-term neurological conditions.


This is first time neurology has ever been considered for such a review and it is an opportunity that we need to grasp to demonstrate that services for people with conditions like MS should be a priority.
The MS Trust has submitted its response and we would encourage anyone who feels able to also support this review. Personal experiences that describe both the good and bad could be very powerful factors in ensuring CQC select neurology over the other possible topics.

Please help by sending a response to CQC. The deadline is 27 April. http://www.mstrust.org.uk/news/article.jsp?id=3642

Tuesday, 13 April 2010

National MS Society hold live web forum on CCSVI - Wednesday 14th April

A Facebook post by the MS Society announces a live web forum on CCSVI on Wednesday 14th April at 5.00 p.m..

Wednesday 14 April, 5pm UK time (12pm Eastern Time)
The American Multiple Sclerosis Society and the American Academy of Neurology (AAN) will hold a live 90-minute web forum for journalists and the general public on CCSVI (chronic cerebrospinal venous insufficiency) and what it could mean for people living with MS. The event, held Wednesday April 14 at 5pm UK time, will cover what is currently known about CCSVI and what work still needs to be done to determine CCSVI's relationship to MS.
The panel is made up of:
■Dr. Paolo Zamboni, Director, Vascular Diseases Center, University of Ferrara, Italy
■Dr. Robert Zivadinov, Associate Professor of Neurology at the University at Buffalo, State University of New York
■Dr. Andrew Common, Radiologist in Chief at St. Michaels Hospital, University of Toronto, Ontario, CA
■Dr. Aaron Miller, Professor of Neurology and Director of the MS Center at Mount Sinai, New York, member of the AAN Board of Directors, Chief Medical Officer of the National MS Society

Questions can be submitted in advance - find out more and register online.

MS patients want access to surgery

Hundreds of Canadians who have ms are demanding access to a new procedure that MS specialists warn is at best experimental and at worst dangerous.
http://www.cbc.ca/video/#/News/TV_Shows/The_National/ID=1467314654

Survey of birth month of people with MS

From the MS Trust website:

Researchers are asking people with MS to complete a short survey asking about their month of birth and those of their parents and their grandparents.

http://www.mstrust.org.uk/news/article.jsp?id=3623

Monday, 12 April 2010

Naidex 2010 - the UK's leading disability, rehabilitation and healthcare show

Birmingham NEC 20th - 22nd April

Naidex is the biggest and best opportunity to test, touch and compare the latest products and services to aid independent living. Whether you are a member of the healthcare profession, a trade visitor or a member of the public there is plenty to see.

http://www.naidex.co.uk/

CCSVI - Blog Talk Radio

Michelle Findlay from the MS-CCSVVI-UK is interviewed on Global CCSVI Radio.

http://www.blogtalkradio.com/omario/2010/04/11/ccsvi-introductionms-ccsvi-uk

Friday, 9 April 2010

Scarborough Evening News - Pioneering project for Angela

Article found on the MS Society website:

One of the first people to receive CCSVI scan in Glasgow at the Essential Health Clinic.

http://www.scarborougheveningnews.co.uk/news/Pioneering-project-for-Angela.6204797.jp

Thursday, 8 April 2010

Kuwait government decides to treat all its 6000 MS patients with CCSVI angioplasty at the rate of 10 a day

From the MSRC Website:
The Ministry of Health will resume surgeries for CCSVI in Multiple Sclerosis (MS) in a few days following approval of a relevant protocol for treating this disease.



Health Minister Dr. Hilal Al-Sayer said in a statement to KUNA on Monday the operations would be conducted after a written approval by the patients and informing them on possible side-effects of the operation.

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

Tuesday, 6 April 2010

If you could register with a GP practice anywhere, what would you do?


The Government thinks people should be able to choose a GP practice that is most convenient for them.
We want to hear the views of the public, patient groups and those who work in the NHS. This consultation closes on 28 May.

http://www.gpchoice.dh.gov.uk/

Raising Awareness of MS on Sky Sports

From the MS Trust Website:
Karen Aston, who is a member of Team Edge, has multiple sclerosis and wants to help people understand more about the condition. She is featured on the Trans World Sport programme and talks about living with MS, as well as her new found passion for drag racing.
http://www.mstrust.org.uk/news/article.jsp?id=3613

BMSTC Link Group - Summer Fayre Request 22nd May 2010 1.00 - 3.30pm

Following the wonderful response we had to our request for help at the last Christmas Fayre we are now making a similar request for support for the Summer Fayre. The Link Group work hard during the year arranging various events to raise money for the Centre and would very much like more members to become involved. Please support our efforts by donating 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.
  • Bric-a-Brac Stall Items to sell
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.
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

Saturday, 3 April 2010

CCSVI info from one of our members

Sent to me from Eriks, one of our members which I thought would be good to share:

"Pip, this is the most precise, detailed and maybe 'definitive' and detailed investigation you could want for CCSVI explaining the different types of occlusions to the vascular system and which type of MS it causes. This is only about a year old and to me it looks pretty much like proof of the CCSVI/MS situation. I like the 'basic' diagram showing blood flow/blockage/MS type."

http://jnnp.bmj.com/content/80/4/392.full

Thursday, 1 April 2010

Ottawa man sees improvements after surgery to treat MS

From CTV Ottowa

An Ottawa man who has multiple sclerosis is experiencing immediate improvements after undergoing vascular surgery in Poland to help treat the disease.

http://ottawa.ctv.ca/servlet/an/local/CTVNews/20100401/OTT_MS_100104/20100401/?hub=OttawaHome

Moment of truth for Tiger after his MS treatment

From the Evening Times Scotland:

Tim Stevens travelled to Poland in the hope of finding a cure for his MS, the hugely debilitating illness which has robbed him of the use of his legs.


http://www.eveningtimes.co.uk/news/editor-s-picks-ignore/moment-of-truth-for-tiger-after-his-ms-treatment-1.1017675

More that £165m to support home adaptations for disabled people

Posted on the MS Trust website from the author the News Distribution Service:
Communities Minister Lord McKenzie has today granted over £165m to help local councils pay for adaptations that will enable disabled people to live comfortably and independently in their own homes.



The Disabled Facilities Grant programme will help around 40,000 people with disabilities make improvements to their homes, thereby improving their everyday lives and allowing them to avoid the hassle and costs of moving house.


The Minister has today announced how much cash each council will receive this April to support people in their local area.


http://www.mstrust.org.uk/news/recentstories/article.jsp?id=3609

MS Society Open Meeting - Requesting Questions to the Board from Members

A Facebook post from the MS Society, if you join Facebook you can get involved!

Are you an MS Society member? Are you unable to attend one of the upcoming open meetings but still have a question you'd like to ask? Then submit a question and we'll put your enquiry to the board of trustees and directors for you.

http://www.facebook.com/?sk=messages#!/note.php?note_id=378324409794&id=8126393663&ref=mf