The Essential Health Clinic - CCSVI UK Appointments

From the MS CCSVI Facebook page:
The Essential Health Clinic has limited availablity for CCSVI scanning in August, July fully booked.

http://www.essentialhealthclinic.com/website/index.php/clinic/ccsvi-appointments/available-appointment-dates.html

The Mobility Roadshow - 1st, 2nd & 3rd July 2010

1st, 2nd & 3rd July 2010

East of England Showground,
Peterborough PE2 6XE

Open 10am daily, free admission and parking

Not only the best possible showcase of mobility and lifestyle products and services, but also a great fun day out for all the family!

http://www.mobilityroadshow.co.uk/

Oritse from JLS Supports the MS Society Cake Break 2010!

http://www.youtube.com/watch?v=Xqs37N_5zr4

Thank You to Everyone Involved in the 2010 Reading Half Marathon!

We wanted to say a very big THANK YOU to all of our runners and helpers for supporting the MS Therapy Centre this year and helping to make this years Reading Half Marathon such a huge success!

These are some of the comments that we received back from the organisers that we though you might like to read.

“The people of Reading are magnificent, with support almost the entire way round. The noise inside the stadium was stunning and the band under the bridge near the Oracle made my hair stand on end! I had a brilliant time, came in under 2 hours and would definitely do this again.”

“Great organisation, brilliant atmosphere and crowd support.  Possibly the first time I've ever seen a Primark and not gone in”

“What an excellent race!!! Organisation, stewards & helpers brilliant!!!”

The Essential Health Clinic Releases First CCSVI Scanning Appointment Dates

Taken from the MS-CCSVI-UK Facebook post yesterday:

The Essential Health Clinic Releases First CCSVI Scanning Appointment Dates - http://www.essentialhealthclinic.com/website/

 Source: MSRC General CCSVI News Page - http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/2954

Henley Standard Coverage of the Henley MS Support Group Launch!

A great article covering our Official Launch Party!  Thanks go to everyone involved in the project for getting it off to such a good start, and a special thank you to our VIP guests!

http://www.henleystandard.co.uk/news/news.php?id=36176

Online social networks a lifeline for those with chronic illnesses

From the MSRC Website:  A very apt article for BMSTC at the moment.......watch this space!! :0)

A former model who is now chronically ill and struggles just to shower says the people she has met online have become her family. A quadriplegic man uses the Web to share tips on which places have the best wheelchair access, and a woman with multiple sclerosis says her regular Friday night online chats are her lifeline. http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=2479

Are you interested in a boat trip?

The Michael Shanley Charitable Trust has secured a number of half day trips during 2010 on "Rivertime" - a unique craft built especially to cater for those with disabilities that might normally preclude them from embarking on a river trip.

Cruises normally start and finish at the River and Rowing Museum in Henley-on-Thames at either 10.30 am or 2.30 pm and last for approximately 2 hours.  Regrettably they are unable to consider individual bookings, but if we can get a group of 12 people interested including their carers I will write a letter of application for them to consider provinding us with a trip.  If you're interested please let me know pippa@bmstc.org or call 0118 901 6000

For more info please see www.rivertimeboattrust.org.uk

New report identifies flaws in benefits system

From the MS Society Website:

The MS Society has joined eighteen organisations in supporting a Citizens Advice Bureau report launched today, which voices serious concerns about the way people are being assessed for Employment and Support Allowance (ESA).

http://www.mssociety.org.uk/news_events/news/press_releases/cab_esa_report.html

Conference offers hope for people with MS

A newsletter update from the Essential Health clinic:
The European LDN Conference will be held in Glasgow on 24th April 2010.
We wanted to tell you about an important event taking place this April. If you suffer from, or know of people effected by MS (Multiple Sclerosis), or other debilitating inflammatory conditions such as Chronic Fatigue Syndrome and Fibromyalgia, you will be very interested in The 2nd European LDN Conference.


Also find out the latest information on CCSVI from Dr Tom Gilhooly


Taking place in Glasgow on 24th April, 2010 at the Thistle Hotel in Cambridge Street, The 2010 European LDN conference is again organised by Dr Tom Gilhooly of the Essential Health Clinic in Glasgow with support from Linda Elsegood and the LDN Research Trust. According to Dr Gilhooly, “Following the success of last year’s inaugural conference, we are returning to Glasgow. There have been a number of important developments in the past year and this year’s conference is set to be a landmark event.” The conference is sponsored and supported online by BIG ON Glasgow.


LDN – Low Dose Naltrexone – was initially developed as a treatment in the United States in the 1980s. Working with opiate addicted patients, it was realised that in low doses, Naltrexone could actually be used to increase endorphin levels, effective in the treatment of MS. It was first used as a treatment for MS in 1985.
More Information
The conference website  http://www.bigonldn2010.com/  contains the agenda, registration form, venue details plus more information, news and videos on LDN. The website also offers the opportunity to join BIG ON LDN forums.


How to BookYou can book online, securely via the Essential Health Clinic website. http://www.essentialhealthclinic.com/website/

MS CCSVI UK - Petition Number 10 Downing Street

MS CCSVI UK Handed their petition to Number 10 Downing Street on Monday 23rd March.    See http://www.ms-ccsvi-uk.org/  for more information about the group and their activities.

New data on CCSVI and Vitamin D underscore the need for taking action

From the MS Resouce Centre Webiste:

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

CCSVI Press Conference at False Creek Healtcare Centre

CCSVI Press conference at False Creek Healthcare Centre.  Featuring Dr. Mark Godley and Dr Marian Simka:

http://www.youtube.com/watch?v=8ocSlIfTxMs

Fatigue and MS

From the MS Trust:

Chatroom

Fatigue and MS

A one day chatroom allowing people who experience fatigue the opportunity to ask questions of health professionals and to share experiences and problems.  If you can't get to the chatroom, send your questions or comments in advance to info@mstrust.org.uk or ring 01462 476700.

Wednesday 28 April 10am to 7pm

For more information, visit  www.mstrust.org.uk/chatrooms

MS Trust, Spirella Building, Bridge Rd, Letchworth Garden City, SG6 4ET

Registered charity number 1088353

New Airport Services - Travel Essentials

From the MS Society Website:

MS Society Insurance Services has partnered with Essential Travel.co.uk to negotiate great deals on travel extras for those with pre-existing medical conditions and disability.

http://www.mssociety.org.uk/support_and_services/insurance/new_airport_serv.html

BBC Radio Berkshire Coverage of the Henley MS Support Group Launch

Debbie McGee speaks to Peter Towner about the Henley MS Support Group.


You can drag and drop the time bar to around 46 minutes into her show to hear the interview:
http://www.bbc.co.uk/iplayer/episode/p006slzj/Debbie_McGee_14_03_2010/

Opinion Health Carer Survey

Opinion Health, a healthcare market research firm based in the UK, and Oxford Outcomes, an healthcare consultancy, are looking for people who provide informal (unpaid) care to someone suffering from Multiple Sclerosis, to complete an online survey about their experiences of caring. The survey is 20 minutes long, and is aimed at understanding more about a caregiver’s quality of life.
A reward of £12 will be posted to each person who completes the survey after the study is over— or you can specify that the reward be donated to the patient group of your choice.

All responses will be confidential, and all information given will be studied in aggregated form only, and will then be deleted at the end of the study period. At the end of the survey, you will be asked to fill in address details for us to send the reward cheque.

You can take part in the survey by clicking on the link below:

http://survey.opinionhealth.co.uk/uc/admin/baba/

The survey is due to close on Wednesday, 31st March 2010, but we would appreciate any replies to the survey before that date, to establish some early trends.

If you have any further questions about the survey, please do not hesitate to contact me.
Thank you.

Paul Eccles, PhD
Senior Research Executive,
Opinion Health, 11 Poland Street, London, W1F 8QA, UK.
0044-(0)20-7486-6700
info@opinionhealth.co.uk

Henley MS Support Group Launch Party!

We hosted a launch party at Brunner Hall in Henley-on-Thames with the Henley MS Society and Headway Thames Valley to celebrate our new partnership project

We were delighted to welcome 50 guests including Simon Gillespie -Chief Executive of the MS Society, our Patron Paul Daniels and Debbie McGee, Councillor Elizabeth Hodgkin - Mayor of Henley, Ann Ducker - leader of South Oxfordshire District Council and Angie Best - Patron of Thames Valley Headway.

It was lovely to have an opportunity to get together with other health care professionals, neighboring MS Society colleagues and some of the people who will benefit from the new service. The partnership has also opened up joint fundraising opportunities like the Three Charities Golf Day in June.

For more information see our website http://www.bmstc.org/News---Information.aspx

Multiple Sclerosis Resource Centre Cannabis And Cannabinoid Research

Multiple Sclerosis Resource Centre Cannabis And Cannabinoid Research

Boars Bridge Festival & Craft Fair - 19th & 20th June

My friend (and guitar teacher!) Lynne Whiteland is holding her annual Boars Bridge Festival in aid of BMSTC this year over the weekend of the 19th & 20th June.

There will be Live Music, Real Ale, Bar, Stalls, Crafts, Indian Head Massage, Reflexology, Open Mic, Food, Cream Teas plus much more!

The event is held in a beautiful venue in the countryside in Little London, nr Tadely, Hants. A nice way to spend a hopefully sunny weekend although we have a marquee should the weather not be kind! :0)

Last year she supported CHIKS (Childrens Homes in Kerela) and raised a fabulous £1,000. This year she wants to raise even more for us here at the MS Therapy Centre!

If you are interested in having your own stall, buying tickets for the event (available in advance only) or volunteering to help please do get it touch with either Lynne lwhiteland@aol.co.uk or me pippa@bmstc.org.

It should be a fun weekend! Please see our events page for more details:

http://www.bmstc.org/Events/Boars-Bridge-Folk-Festival---19th---20th-June-.aspx

MSRC comment on Stanford University halting CCSVI treatments after two serious adverse incidents:

From the MSRC Website:

"Helen Yates, Chief Executive of the Multiple Sclerosis Resource Centre (MSRC) said: “Whilst the case of the man who had to have open heart surgery to deal with a slipped stent is accurate, the case of the woman who had a haemorrhage is less so. The lady in question had a pre-existing condition that meant she was much more susceptible to haemorrhage, in fact it has been ascertained since her death that it was nothing to do with the procedure at all and was, in fact, an adverse drug reaction to one of the blood thinning drugs exacerbating a genetic familial problem. The first case is, of course, a reminder that no procedure is without risk and with stenting, there is always a slight risk of the stent coming loose."

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

ThisIsMS.com - CCSVI Alliance

From ThisIsMS webiste:

This post has been a long time coming. I am so glad -and relieved- to finally be able to officially tell you all about the professional organization that a group of us have been building: CCSVI Alliance

http://www.thisisms.com/ftopict-10580.html

Inside the MS Tissue Bank

From the MS Society website:

In this special MS Society online awareness talk, Professor Richard Reynolds, director of the MS Society Tissue Bank, discusses why the tissue bank is important in MS research and how it started.

http://www.mssociety.org.uk/support_and_services/audio_and_video/video/awareness_talks/2010_talks/tissue_bank.html

Immune System Boost for Vitabmin D?

From the MS Trust Website:

The Daily Telegraph has reported that "vitamin D 'triggers and arms' the immune system". It said that researchers believe that vitamin D plays a key role in boosting the immune system.

http://www.mstrust.org.uk/news/recentstories/article.jsp?id=3567

Councils count the cost of care

From the BBC Berkshire Website today:

New and increased charges for elderly, ill and vulnerable people using social care services are set to be introduced in West Berkshire and Wokingham.

It is one of the areas set for big changes as local councils look to make savings after their budgets were cut.

http://news.bbc.co.uk/local/berkshire/hi/people_and_places/newsid_8546000/8546516.stm

MS-CCSVI-UK - Ways that you can help

I emailed MS-CCSVI-UK to see what we could be doing at a local level to help support their work, this is their reply:

Hello Pippa,

Thank you for contacting us and for your support.

We are in the process of re-evaluating our next steps. Some of the team will be focusing on the political aspect, others on the medical professionals and it has been mentioned to hold a worldwide demonstration asking governments to accelerate research into CCSVI and MS.

Two ways you can help from now:

1. One sure fire way is for people to talk to their neurologists to try and gather support for research to start in this country.

2. Or if anyone already knows of a neurologist who supports CCSVI please ask them if we can pass their details to MP Richard Taylor who is offering to help us, but he needs us to find neurologists who support us.

Thank you again for your support.

LDN - New Conference Website

Message from Silvia Lane:

Last year I went to the First European LDN conference in Glasgow and it was absolutely fabulous. Some of you have read the report I had put into the August newsletter. I’ve just received notification of the new conference website. Have a look around it, register and go there if you can. I know I will, I wouldn’t want to miss it.

http://www.bigonldn2010.com/

Silvia

http://www.ldnhilft.org/

Dr.Chris and LDN

Facebook Post!

I emailed MS-CCSVI-UK yesterday as we have had requests from people wanting to get involved at a local level. I see this post on Facebook today:

"Here at ms-ccsvi-uk we are trying to raise awareness from the bottom up and the top down. It is heartening to know that there are people out there managing MS Therapy Centres who are responding to their member's requests for information. If some of you attend a therapy centre, find out if they want info about CCSVI.... We can mail it or if it is near a member of our team we can come and talk..."

The Regional Driving Centre

The RDAC specialises in providing assessments for people who want to learn to drive or return to driving with a disability, or following a debilitating illness. After a Stoke, or have an illness such as M.S or M.N.D etc. The centre is staffed by a team of dedicated and experienced professionals - including specialist driving instructors and occupational therapists – and has a range of adapted vehicles permanently available, which can cater for a wide variety of mobility needs including passenger assessments.

Also, even more now with an ageing population, people are wanting to drive until they are older and this places quite a strain on general practitioners who will be asked by patients about their ability to continue driving or return to driving, or for the general public who themselves have concerns regarding their mobility following an illness or general health.

We feel that this is where we are able to support all organisations who can suggest to their patients/clients that they attend the centre for a practical assessment of their ability to drive providing that they meet the current DVLA regulations of medical fitness to drive.

The fee for a driving assessment is subsidised, currently £80. The fee for a passenger assessment is again subsidised, currently from £20. All fees are stated on the Application Form which can be downloaded from our website www.rdac.co.uk The website holds invaluable information that we hope you will find useful.

MS CCSVI UK

From the MS CCSVI UK Webiste:

"The aim of MS-CCSVI-UK is to raise UK awareness of CCSVI and its potential influence on Multiple Sclerosis and to support the commissioning of research in the UK, to prove or disprove Prof. Zamboni's hypothesis.

Making use of the power of the internet to contact people and mobilising them to lend their voice to this cause we hope to bring Chronic Cerebro-Spinal Venous Insufficiency (CCSVI) to the attention of the government and politicians, the medical profession and MS support systems, the press and the media. We do not know what the results of the research will show, but until trials take place people impacted by MS will feel as though they are being ignored. A large number of MS sufferers feel, maybe even know that this theory makes more sense than the theory of autoimmunity. And considering the evidence available so far they are probably right. But probably is not good enough."

You can register to join their forum on their website: http://www.ms-ccsvi-uk.org/home/home.html

MS Sufferer Shows Improvement After Poland Visit

Published on the 3rd March 2010, Seaford Gazette.

A MOTHER from Seaford said her MS sufferer daughter has shown initial improvements after travelling to Poland for tests

http://www.eastbourneherald.co.uk/seaford/MS-sufferer-shows-improvement-after.6119706.jp

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. www.shift.ms

A worrying Setback for CCSVI

I guess it's inevitable that there always are setbacks unfortunately....

http://www.mssociety.org.uk/news_events/news/press_releases/ccsvi.html

Multiple Sclerosis International Federation

The Multiple Sclerosis International Federation welcomes you to the World of MS.

A comprehensive, international and up to date information resource developed by MS experts worldwide.

http://www.msif.org/language_choice.html

MS Society YouTube

Have you seen the MS Society on YouTube? A number of interesting videos are available to view at:

http://www.youtube.com/MSSociety

The Essential Health Clinic - First CCSVI Newsletter

Healthy Talking CCSVI newsletter has now left to all the sign ups. If you want to sign up for CCSVI NEWS please go to www.essentialhealthclinic.com where we have a special CCSVI page.

Essential Health Clinic

www.essentialhealthclinic.com

Phase II trial of LDN Results Released

From the MS Society Website:

Results of a phase II clinical trial testing the safety and effectiveness of low-dose naltrexone (LDN) as a symptom-relief treatment for people with MS have been published in the journal Annals of Neurology. The journal reported positive outcomes for mental quality of life, but no impact on physical quality of life in people with MS.

www.mssociety.org.uk/research/research_news/ldn_trial.html

BMSTC - Example of Good Practice!

I noticed the BMSTC is featured on the National MS Society National Service Framework Example of Good Practice web page along with the Gloucester and Exeter Centre. I'ts good to see! http://www.mssociety.org.uk/for_professionals/standards_of_care/national_service_framework/qr5_examples_of_.html

Book Review - My Life with MS by Marlo Donato-Parmelee

We have been sent this review by someone with MS who found this book very helpful. We thought it would be a good idea to start a book review section in the newsletter in addition to adding them on the blog. If you've read something you have found helpful and would like to write a review to share, please email pippa@bmstc.org

"Awkward Bitch - My Life with MS" - By Marlo Donato Parmelee

Marlo is in her early thirties, American and has moved to London with her husband to pursue a music career, to fund this she works by day in the fashion world, as a retail manager. She is a very positive person and she loves London. From time to time she experiences blurred vision, she feels this is caused by the fact that she is working too hard, so she starts to ease up and her vision improves. The blurred vision reoccurs and eventually she visits an eye hospital in London. After many tests, she is diagnosed with Multiple Sclerosis and as a result takes part in a beta interferon trial (Rebif). Despite her MS, Marlo continues to work hard and remains fun to be with, she is also very positive about her MS. A good read for anyone with MS, also inspirational for others.