Thursday, 24 December 2009
We hope (weather pending!) to be open for business as usual on 4th December.
I hope you have a wonderful Christmas and New Year!
Wednesday, 23 December 2009
We hope to be open as planned on Christmas Eve but will review the situation in the morning. Fingers crossed for a bit thaw between now and then!
Once again please accept our apologies.
Tuesday, 22 December 2009
Thursday, 17 December 2009
Functional Electrical Stimulation (FES) in a non-invasive device that can help some people with MS to walk. The MS Society's brand new campaigns guide will help you to access FES, what to do if you are refused NHS funding for FES and how to get loud!
BMSTC offers a FES clinic here at the Centre, contact firstname.lastname@example.org if you would like to find out more information.
Wednesday, 16 December 2009
This website is your worldwide gateway to Low Dose Naltrexone information, resources and events. LDN Aware is a volunteer group devoted entirely to spreading knowledge and raising public awareness about LDN as a treatment for auto-immune disease, cancer and HIV/AIDS.
The Teenager whose mother inspired him to campaign on multiple sclerosis
Ryan McLaughlin is just 14 and his mother Kirsten has multiple sclerosis. A link has been suggested between the disease and Vitamin D deficiency. Ryan took up the cause, calling on the Scottish government to raise awareness on the issue. Now, because of Ryan’s efforts, all pregnant women in the country are to be told about the importance of taking vitamin D supplements. Jenni speaks to Ryan McLaughlin, his mother Kirsten, and to discuss the links between MS and vitamin D, George Ebers, Professor of Clinical Neurology and the University of Oxford.
There are many, many factual errors being published in the press and bandied about by MS societies, doctors and even on well-intentioned petitions. It's important to separate fact from fiction. Here are a few things that are essential to understand-
FICTION 1- "The Liberation Procedure is a cure for MS and MS is not autoimmune"-
FACT-Dr. Zamboni has never used the word "cure." MS is an ongoing assault on brain tissue due to reflux, and some of the damage done to the brain may be permanent. Just as people have variable recoveries due to stroke, recovery from venous congestion and reflux will vary. Dr. Zamboni has never said MS is "not autoimmune." Dr. Zamboni believes that CCSVI may be the cause of the MS process. He says that the immune system is obviously involved...but he believes the immune reaction is secondary to the venous congestion.
FICTION 2- "Venous procedures are dangerous. Several people have died from the Liberation procedure!"
FACT- The only complications from the Liberation procedure (venous angioplasty and ballooning) have been headache and bleeding from the small incision at the groin.
There have been complications from venous stenting, including nerve damage (several cases) and stent migration (one case), but NO ONE has died from this procedure. A friend of many of us had a hemorrhagic stroke after having a stent procedure, but her death was not related to the venous intervention....it happened on the arterial side. Her family, her doctors and the hospital that treated her after the stroke maintain that her tragic death was not due to her stent intervention.
FICTION 3- "Venous congestion is caused by MS"
FACT- We know how venous congestion works, because it happens in other parts of the body. Chronic venous insufficiency in the legs begins with venous stenosis and reflux, leading to pain, swelling, and venous ulcers. Chronic venous congestion of the liver (Budd Chiari disease) begins as venous stenosis and leads to liver damage. When veins are blocked and blood cannot return to the heart, damage to the surrounding tissue occurs, not the other way around.
FICTION 4- "Dr. Zamboni's studies are not scientific. They are not "blinded."
FACT- Dr. Zamboni's first study was blinded. He tested hundreds of normal controls, other neurological diseases, and MS patients, and the doppler technicians did not know who was whom. After the patient results were "unblinded"- Dr. Zamboni found CCSVI only in MS patients. Dr. Zamboni only gave the Liberation procedure to 65 MS patients....because THEY WERE THE ONLY ONES WITH VENOUS STENOSIS. Why give normal controls a procedure they do not need? Why "pretend" to give people with malformed and closed veins a procedure that they do need. The placebo argument makes no sense....MS patients stayed relapse and progression free (as verified on MRI) as long as their veins remained open and unstenosied. Remaining relapse and progression free is not placebo affect.
"An Australian man who was confined to a wheelchair by multiple sclerosis has made a remarkable recovery after receiving a groundbreaking stem cell treatment.
Ben Leahy, 20, was diagnosed with the disease in 2008 and lost the ability to stand within a few months.
However, a new procedure to combat the disease has helped him regain his health and he is now walking again."
Tuesday, 15 December 2009
Click on the link to retrieve your card.
Friday, 11 December 2009
UPDATE: Research into Blood Flow in the Brain and Venous Insufficiency, or CCSVI, in Multiple Sclerosis
Wednesday, 9 December 2009
See their website at www.remap.org.uk
All the glass jewellery is fused and original work using dichroic and bullseye glass. There will be pendants, rings, earrings, cufflinks, brooches and bracelets. Also on sale will be handmade glass dishes and coasters.
From the sale Nancy has agreed to donate 15% to the centre. She has recently donated £45 from a party she held at home last month. If any member wishes to have a party at home Nancy will be happy to do this. She also does workshops from home and these cost £25 for two hours - 3 items of jewellery can be made. Also tokens can be bought for £25 which make wonderful Christmas or Birthday presents for someone who would like to do a workshop.
Nancy can be contacted on 0118 9674272 or 07906930266 or email email@example.com
Monday, 7 December 2009
LDN (low dose naltrexone) is such a big light in the miserable life of many forgotten and shoved aside patients with autoimmune diseases. Something has to happen
- to make people more aware of this
- to it being offered as a first and safe line of treatment
- to make it easy for (sometimes weak and feeble) patients to get hold of this cheap medication, that could change their life, their outlook, their social surrounds.
Find out about the outcome of these petitions on http://www.LDNNow.com, read the articles, watch the videos and most of all, keep helping with spreading the word about LDN.
Thank you very much
"Wokingham Borough Council is currently working in partnership with people with disabilities and/or long term conditions and their carers to look at the way in which day opportunities will be made available in the future. Self-Directed Support will be a major influence on how services developing the future.
A steering group has been formed to carry out the consultation and put forward options for future services to the Council Executive in April 2010.
Current services are a mixture of traditional day services provided by the Council, those commissioned from Voluntary Sector Providers and other Community Services which people access through their own initiative. There has been some limited development and usage of mainstream universal services such as Leisure Centre facilities.
I am writing to invite you/your organisation to attend and event to contribute to the consultation.
The event will be held in the David Hicks Room, Wokingham Borough Council, Civic Offices, Shute End, Wokingham, RG40 1BN on Friday 18th December 1.30 - 4.30 pm. If you would like to attend please contact the Day Opportunities Steering Group on 0118 974 6000."
Thursday, 3 December 2009
Tuesday, 1 December 2009
Monday, 30 November 2009
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.
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 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.
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.
Thursday, 26 November 2009
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.
Dr Petra Kliempt
BSc, MPH, PhD
Hon. NHS Specialist Trainer in Hyperbaric Medicine
MS-National Therapy Centres Co-ordinator
Attached from Prof James:
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
Honorary Medical Adviser MS Therapy Centres
Wednesday, 25 November 2009
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.
"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.
Tuesday, 24 November 2009
"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."
"Giving birth seems to slow the progression of multiple sclerosis (MS), Belgian and Dutch researchers say."
Monday, 23 November 2009
"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."
See also CTV News video:
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
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."
Thursday, 12 November 2009
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.
- 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 firstname.lastname@example.org
Alternatively, send your printed and completed form to:
Assisted Suicide Policy Team
Crown Prosecution Service Headquarters - 6th floor
50 Ludgate Hill
Wednesday, 11 November 2009
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!
Tuesday, 3 November 2009
Thursday, 29 October 2009
Although it has been announced that DLA will not be affected for the under 65's, the case for over 65's is undecided. If you are interested in campaigning for over 65's please visit the Age Concern website http://www.ageconcern.org.uk/AgeConcern/quality-care-big-q.asp
Tell the government what you think of the options for reform in the Big Care Debate which ends on the 13th November.
Wednesday, 28 October 2009
Tuesday, 27 October 2009
The summary results are very encouraging
• Wellbeing: 94% of patients indicated an improvement in wellbeing after 15 sessions.
• Fatigue: 87% of patients indicated an improvement in fatigue levels after 15 sessions.
• Sleep: 81% of patients indicated an improvement with sleep patterns after 15 sessions.
• Legs: 77% of patients indicated an improvement in their legs after 15 sessions.
• Walking: 70% of patients indicated an improvement in their ability to walk after 15 sessions.
• Balance: 66% of patients indicated an improvement in balance after 15 sessions.
• Bladder Frequency: 64% of patients indicated an improvement in bladder frequency after 15 sessions.
• Circulation: 64% of patients indicated an improvement in circulation after 15 sessions.
• Concentration: 60% of patients indicated an improvement in concentration after 15 sessions.
• Coordination: 58% of patients indicated an improvement in coordination after 15 sessions.
• Bladder Urgency: 53% of patients indicated an improvement in bladder urgency after 15 sessions.
• Arms: 51% of patients indicated an improvement in their arms after 15 sessions.
Overall, more than 50% of the patients recorded an improvement in 12 of the 20 symptoms assessed. This is not a conclusive result and carries no clinical evidence to support its findings.
For their full report an information on their centre see:
Monday, 26 October 2009
Secretary of State for Health, Andy Burnham MP, announced yesterday that Disability Living Allowance will not be scrapped and the money used to fund the proposed national care service.
Many thanks to all those who showed their support for this campaign by signing the online petition online petition that we told you about in a previous blog. You should be very proud of your involvement as you have made a real difference to the lives of disabled people who depend on Disability Living Allowance to live their lives in the way they want.
But we cannot hang out the victory bunting just yet as the future of Attendance Allowance still hangs in the balance. Please continue to show your support of this campaign and help us to ensure that Attendance Allowance stays.
If you haven’t already, please sign the petition! sign the petition! and write to your local MP asking them to convey your concerns to the secretary of State for Health. Read the Disability Charities Consortium (DCC) statement. Read the Disability Charities Consortium (DCC) statement.
Wednesday, 21 October 2009
Location: Ricoh Arena,
The enABLE show focuses on helping people with disabilities or limited mobility to lead an active, independent and full life.
From advice on getting the right benefits, information on dedicated holidays and sports, education, employment to the latest gadgets and products to make like easier around the home - you’ll find it all under one roof at enABLE09.
There’s also the chance to meet the leading charities and associations as well as gaining expert one to one advice on benefit entitlements and even adapting your home. Plus the opportunity to gain inspiration at the popular seminars led by professionals, role models and everyday people.
Monday, 19 October 2009
Wednesday, 14 October 2009
The class will include a series of cardiovascular, toning and flexibility moves and would suit members who are able to stand unaided and are able to raise themselves up and down off the floor. Please come along and give it a try! Contact Vanessa on 07515 682554 or email email@example.com if you have any queries or just come along and join in on the class.