Monday, 30 November 2009

Collaboration between MSNTC and the MS Society

From the National MS Therapy Centres website:

The two largest societies in the field of MS are the MS Society (with approximately 40,000 members) and the Therapy Centres who are part of MSNTC (with approximately 12,000 members). Attendees at the Open Meeting heard about recent new collaborative developments between these two charities.

In October the MS Society and MSNTC issued a statement affirming their joint wish to work together at national, regional and local levels. You can find the full MSNTC/MS Society joint statement here.

Under this new initiative, the two charities will look at the ways in which a sample of local MS Therapy Centres and MS Society branches are already working together to improve the quality and range of services available to members of both organisations. It will identify not only the 'success factors' but also those obstacles that have hindered co-operation. The aim is to define a set of criteria which will help MS Therapy Centres and MS Society Branches to improve their working relationships and provide more coordinated help for the people that both organisations exist to serve.

Reading Half Marathon 2010 - Corporate Relay Challenge

We are delighted that our Patron, Martin Salter MP will organising his own team in the Reading Half Marathon Corporate Relay Challenge on Sunday 21st March to raise funds for the Centre. This is a great local event and the Berkshire MS Therapy Centre will have lots of marshals to offer support and urge the runners on.

Why not log onto: www.readinghalfmarathon.com/race_info/corporatechallenge.htm

and join in the fun. We will provide you with a BMSTC running vests and loads of support on the day!.

Friday, 27 November 2009

This Is MS- The unbiased MS Community

I found out about this site from the November/December edition of Pathways magazine produced by the MS Resource Centre.

" This is MS is an unbiased, unaffiliated site dedicated to eradicating Multiple Sclerosis. We offer an open-minded approach to *all* potentially viable treatments, ranging from the FDA-approved disease-modifying drugs such as Copaxone to alternative treatments such as Low Dose Naltrexone."

This link features accounts of patients in California who have undergone CCSVI treatment among other treatments.

http://www.thisisms.com/forum-40.html

Multiple sclerosis 'blood blockage theory' tested

From the BBC website:

US scientists are testing a radical new theory that multiple sclerosis (MS) is caused by blockages in the veins that drain the brain.


The University of Buffalo team were intrigued by the work of Italian researcher Dr Paolo Zamboni who claims 90% of MS is caused by narrowed veins.

http://news.bbc.co.uk/1/hi/health/8374980.stm


Thursday, 26 November 2009

CCSVI - Statement from Professor Philip James & Our Medical Advisers


We have had several MS Therapy Centres asking about our view on Chronic Cerebrospinal Venous Insufficiency - CCSVI. Various articles and news clips have been published on the net. Prof James has sent an email to the author Dr Zamboni to find out more about the surgical procedure and we will keep you informed of any developments.

Please find attached a document to be circulated to your members, operators, staff etc.

Kind regards

Petra

Dr Petra Kliempt
BSc, MPH, PhD
Hon. NHS Specialist Trainer in Hyperbaric Medicine
MS-National Therapy Centres Co-ordinator

Attached from Prof James:

The recent publicity given to the work of Professor Paolo Zamboni has highlighted a growing disaffection with the concept of ‘auto’ immunity which has dominated MS research and treatment for more than half a century. Zamboni trained as a vascular surgeon specializing on problems of leg veins, which often leak as we age, allowing red blood cells into the surrounding tissues. When the red cells break down they liberate iron which causes damage to the walls of veins and the surrounding cells. Similar damage was found in the veins in the centre of the typical ‘plaques’ of multiple sclerosis as long ago as 1863. However, the use of an animal model for MS research after WW2 led to the concept of auto immunity where, it is claimed, the immune system attacks normal tissue. Despite sixty years of research there is no evidence of this and it remains just a theory. What is certain is the damage in MS involves veins and inflammation and Professor Zamboni has focused on these proven observations. He noticed, when using ultrasound scanning of the neck in a Multiple Sclerosis patient, that blood flowed the wrong way in a vein and also that the vein appeared to be constricted. After more investigations he has used the same procedure used to stretch arteries in the heart to relieve the vein constrictions. Several patients have found the procedure beneficial, greatly reducing their symptoms although stretching the veins will not affect existing scarring. There has been no indication of why the veins constrict, although increased ‘reactivity’ of blood vessels has been reported before in MS patients. Professor Zamboni’s work has highlighted the importance of the blood-brain barrier. Oxygen is responsible for the genetic control of inflammation and lack of oxygen has been shown in affected areas in MS patients by brain imaging. Neurologists are likely to remain sceptical of vein stretching until a ‘controlled’ study is done in which a sham procedure is used and compared to a group of matched patients who have the real procedure undertaken.

Philip B James MB ChB DIH PhD FFOM

Emeritus Professor of Medicine University of Dundee

Honorary Medical Adviser MS Therapy Centres



Wednesday, 25 November 2009

CCSVI in MS - Facebook Link

Chronic Cerebrospinal Venous Insufficiency.a reflux of blood in the veins from the brain and spine..has been found in MS patients tested world-wide.

See link:

http://www.facebook.com/inbox/#/pages/CCSVI-in-Multiple-Sclerosis/110796282297?ref=search&sid=1144265402.715092968..1




More about CCSVI.........

From the MS Resource Centre website: A statement of particular interest to the MS Therapy Centres providing Oxygen Therapy:

"Blood that remains in the brain too long creates a delay in deoxyginated blood leaving the head ("slowed perfusion"). This can cause hypoxia, a lack of oxygen in the brain. Plasma and iron from blood deposited in the brain tissue can also be very damaging leading to iron along with other unwelcome cells, to cross the crucial brain-blood barrier."


I've sent a communication to ask what Professor Philip James (Our specialist Oxygen Therapy Adviser) thinks about the idea. I will publish his thoughts on the blog as soon as I hear back from him.

http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=2944


Tuesday, 24 November 2009

Experimental MS Surgery Draws Canadian Interest

From the MS Trust Website (information linked to previous post dated 23rd November - CCSVI)

"The Multiple Sclerosis Society of Canada will be asking Canadian scientists to propose their own research into a procedure that has ignited the hopes of patients in Europe and North America."

http://www.mstrust.org.uk/news/recentstories/article.jsp?id=3357

MS Progress Slowed by Giving Birth, Belgian Doctors Say

From the BBC website:

"Giving birth seems to slow the progression of multiple sclerosis (MS), Belgian and Dutch researchers say."


http://news.bbc.co.uk/1/hi/health/8374009.stm

Monday, 23 November 2009

CCSVI - A Huge Breakthrough in MS?


Interesting article on the MS Society Website.

"In August, I received a message asking me what I thought about CCSVI in multiple sclerosis. I had the same reaction most of you did when you read the title of this article – “What the hell is CCSVI?” A Google search told me it stood for “chronic cerebrospinal venous insufficiency” and a PubMed search led me to a handful of papers on CCSVI, all authored by an Italian vascular researcher/surgeon named Paolo Zamboni."


http://www.mssociety.org.uk/applications/discussion/view.rm?post_id=838872&id=14320

See also CTV News video:

http://watch.ctv.ca/news/w5/the-liberation-treatme%20nt/#clip237617

Postal Scam

Royal Mail and Trading Standards Office are making people aware of a postal scam, especially with Christmas fast approaching.



Following scam:


A card is posted through your door From a company called PDS (Parcel Delivery Service) suggesting that they were unable to deliver a parcel and that you need to contact them on 0906 6611911 (a Premium rate number).


DO NOT call this number, as this is a mail scam - originating from Belize. If you call the number and you start to hear a recorded message you will already have been billed £15 for the phone call.


If you do receive a card with these details, then please contact Royal Mail Fraud on 02072396655

Monday, 16 November 2009

New Drug Therapies and Promising Research

(From the MS Trust website )

Early diagnosis of multiple sclerosis can change the lives of people living with this chronic disease of the central nervous system.


"Today, there is a huge urgency to make the diagnosis because we know that early and aggressive treatment can alter the course of the disease," says MS specialist and University of Alberta assistant clinical professor Dr Brad Stewart. "Back 15 or 20 years, diagnosis was less urgent because we had nothing to offer the patient."

http://www.mstrust.org.uk/news/recentstories/article.jsp?id=3340


I am blessed to have MS - Alistair Hignell

Interesting article on the BBC website by Alistair Hignell

http://news.bbc.co.uk/1/hi/health/8344634.stm

Hyperbaric Oxygen Treatment Trust


I thought this website might of interest to people who attend or are interested in Oxygen Therapy treatment.

Thursday, 12 November 2009

Assisted Suicide Policy Consultation - Take Action!

Have your say on assisted suicide guidelines

The Director of Public Prosecution (DPP) has issued guidelines clarifying the issues that will be taken into account when deciding whether or not to consent to the prosecution of individuals who assist someone to die, including when people have accompanied loved ones abroad for an assisted death.

These issues are now open for a public consultation period that ends on 16th December.

Why we need these guidelines

Assisted dying for terminally ill people remains a criminal offence in the UK and the decision whether to prosecute currently rests with the Director of Public Prosecutions (DPP). At present, it is not clear on what basis the DPP will decide whether or not to support a prosecution. This ambiguity places further and unnecessary pressure on those suffering from severe and terminal illnesses or conditions, and their loved ones.

Background

  • The guidelines are being prepared as a result of the prominent case of Debbie Purdy, a multiple sclerosis sufferer, who recently won her case in the UK’s highest court. The judgement required that the DPP publish clear guidance, showing when it would or would not prosecute someone for assisting someone to die.
  • This is not a change in the law; assisted dying remains illegal. However this does represent a significant, and positive change to the present situation.
  • The law at present is fundamentally flawed; it does not make a distinction between those who maliciously encourage suicide and those who compassionately accompany a loved one abroad to die in a country where assisted dying is legal.

Why your views matter

It is vital that the consultation receives an accurate and representative view on the subject of assisted dying. Most importantly, the principle that guidelines are required should be positively acknowledged.

It is really important that as many people as possible who are in favour of having clear guidelines on this issue respond to the consultation. We know that anti-choice groups will be responding to this consultation and it would be very negative should their minority view have a disproportionate influence on the outcome of this consultation.

Here’s what you can do

Please visit the Crown Prosecution website to participate in the consultation. http://www.cps.gov.uk/consultations/as_index.html

The consultation consists of nine questions listing a number of factors in favour of a prosecution and against. It gives respondents the opportunity to agree or disagree with their inclusion, weight them in accordance with priority, and offer further suggestions.

Once you have completed the consultation form, please e-mail your response to assistedsuicide.consultation@cps.gsi.gov.uk

Alternatively, send your printed and completed form to:

Assisted Suicide Policy Team

Crown Prosecution Service Headquarters - 6th floor

50 Ludgate Hill

London

EC4M 7EX

You many also be interested in this blog http://dignityindying.blogspot.com/ or their website http://www.dignityindying.org.uk/

Wednesday, 11 November 2009

Don't Forget the BMSTC Christmas Fayre, Saturday 21st November!

Come and buy your Christmas Goodies or come along and lend a hand on the day!

Christmas Party - Friday 18th December!

1.00pm to 3.00 pm at the Centre. Come celebrate and socialise with other members, staff, volunteers and Trustees!

A light buffet will be provided along with Christmas Carols performed by Wilson Road Primary School - back by popular demand!

Please bring a bottle to share some Christmas cheer!  No need to RSVP, just come along and join in the fun!  We hope to see you there!

3 Days to Go! - The Big Care Debate Closes Friday 13th November

The Big Care Debate ends this Friday, 13th November. Make sure you tell them what you think of the governments ideas and plans!

See http://careandsupport.direct.gov.uk/

Tuesday, 3 November 2009

Special Shopping Event for the Elderly and Disabled

On Monday 30th November between 6pm and 8pm there will be a special shopping event for the elderly and disabled in Reading. Free parking and assistance will be offered to those who need it.
For further information please contact Lucy Burgess at Reading Borough Council on 0118 939 0771.