Wednesday, 30 June 2010
For more information click here
Tuesday, 29 June 2010
The Multiple Sclerosis Research Center of New York (MSRCNY), together with the International Multiple Sclerosis Management Practice (IMSMP), today announced that results from its Intrathecal Methotrexate Treatment in Multiple Sclerosis study have been published in this month's issue of Journal of Neurology.
This study reports on the feasibility of using intrathecal methotrexate (ITMTX) in treatment unresponsive multiple sclerosis (MS) patients with progressive forms of the disease. To read full article click here
Some nice comments are written below the video screen :)
If you need any help or advice with anything to do with disability call our helpline on (01344) 755528.
This project was developed as there is clearly a need; a number of disability related organisations have received large funding cuts which has affected their capacity to provide ‘hands on’ support for small groups.
Dis:Course currently handles approximately 20 calls a week from disabled people, their carers and professionals. These calls can vary from simple queries such as how to apply for a disabled parking badge to long term help and support to appeal a Disability Living Allowance decision.
For more information click here
Close to me krabbers original song live (c) krabbers did a half hour set of all my own stuff at the boars bridge folk festival recently in aid of the Berkshire Multiple Sclerosis Therapy Centre.
Following the Government’s budget announcements made on 22 June, we look at how the new plans might affect people with MS. Here is a round up of some of the main actions we’re taking to get the healthcare and support people with MS deserve and need to live independent and full lives.
Read full article here
Ministers are to signal a tougher approach to incapacity benefit this week as the next stage of its welfare reforms, by reducing the benefit levels of those tested if they are found capable of doing some work.
Details are expected to be announced by the work minister, Chris Grayling, this week. Early pilots suggest half of those assessed are being taken off the higher rate benefit on the basis that tests reveal they are fit to do some work, government sources say.
Read article here
Read full article here
Monday, 28 June 2010
The 10 year old bike has been in regular use at the Centre exercising many arms and legs! It has been serviced annually, and despite a few knocks and scratches in the paintwork, is in very good working condition. The successful winner will need to arrange collection of the bike.
If you are interested in making a bid, or finding out more information about the bike, please email me at email@example.com or call 0118 9016000.
A DEMONSTRATION has been held by protesters angry at the possible closure of the area’s only respite centre for people with multiple sclerosis. Read more here
Improving services for people with MS continues to be the ultimate priority for the MS Trust.
Advances in technology and the pace of change requires healthcare professionals to be innovative and responsive in the delivery of care. Our varied conference programme will explore the possibilities for progress in light of political changes in both clinical practice and service development. For more information click here
But the absence of scientific evidence for stem cells has not stopped the establishment of clinics around the world offering this unproven treatment. It is in response to this fact that the International Society for Stem Cell Research (ISSCR) has developed a website to educate people about stem cells. Read full article here
The Italian CCSVI Society met with the Ministry of Health, and it was decided that CCSVI can be diagnosed as a stand alone disease, without being correlated to MS.
It was also decided that Dr. Zamboni can go forward with his blinded clinical trials of CCSVI in MS. Although there was no time-line given for testing and treating CCSVI, the ministry has promised to move quickly. Read more here
Friday, 25 June 2010
Abbott Laboratories and its Massachusetts biotech partner have launched a final-stage clinical trial of their experimental treatment for multiple sclerosis.
The first patient - out of 1,500 needed worldwide - was enrolled last month in the US. The drug, daclizumab, is being developed for monthly injection under the patient's skin by North Chicago-based Abbott and Cambridge-based Biogen Idec. Read more here
On the 11 June the MS Society announced it is to stop providing specialist MS respite care at the four dedicated centres in the UK.In response to this announcement, a group of people who rely on these centres has launched a petition to fight the closures of the centres. Coverage of their campaign appeared in Third Sector magazine. Read more here
Thursday, 24 June 2010
Well we had a fantastic weekend of live music, good food and great beer! The weather was kind both days and the150 people who attended thoroughly enjoyed themselves raising over £1,400 for the Centre at the same time!
We would love the total to go over £1,500 so if you would like to make a donation we have set up a Just Giving page! Thanks in advance for your support! :)
Wednesday, 23 June 2010
The effect of low-dose naltrexone on quality of life of patients with multiple sclerosis: a randomized placebo-controlled trial.
Background: Low-dose naltrexone (LDN) may promote psychological well-being as well as generalized health especially in autoimmune disorders.
The objective of this study is to assess the effect of LDN on the Quality of Life (QoL) of patients with relapsing-remitting and secondary progressive multiple sclerosis (MS) using the scales and composite scores of the MSQoL-54 questionnaire. Read full article here
Research into ancient Chinese fungus that propagates inside insects yields potential relief for multiple sclerosis.
For centuries Chinese medicine has seen restorative properties in an Asian fungus that invades and destroys insects. Now a drug drawing on that age-old lore is poised to become an important new treatment for multiple sclerosis. Read full article here
The NHS is facing its "greatest ever challenge" in maintaining quality services during the funding squeeze, managers say.
Nigel Edwards, acting head of the NHS Confederation, warned there was "no silver bullet". He said moving care away from hospitals and improving the management of long-term conditions
Read full article here
The Chancellor of the Exchequer, George Osborne, called yesterday's budget unavoidable as he announced plans to cut the structural budget deficit to zero in the next six years. Below are some of the key points that may impact on people with MS. Read full article here
From the MSRC website:
Nearly 400 employees at the MS Society could lose their jobs after its trustees decided to axe the charity's respite care provision.
Read full article here
Tuesday, 22 June 2010
Friday, 18 June 2010
A new complication has been seen in a patient with kidney disease who received stem cell therapy, scientists have warned.
Stem cells were injected into the kidney, but the patient suffered tissue damage and died from an infection. Read full article here
Could the enzyme Pyruvate Kinase be key to MS remission during pregnancy?
During pregnancy, many women experience remission of autoimmune diseases like multiple sclerosis and uveitis and scientists have described a biological mechanism they say is responsible for changes in the immune system that helps explain that remission. Read full article here
Wednesday, 16 June 2010
Biogen Idec Announces Enrollment of First Patient in Phase II BG-12 Combination Trial in Multiple Sclerosis
CAMBRIDGE, Mass., Jun 15, 2010 (BUSINESS WIRE) -- Biogen Idec /quotes/comstock/15*!biib/quotes/nls/biib (BIIB 48.12, +1.33, +2.84%) today announced enrollment of the first patient in a multicenter Phase II clinical trial designed to evaluate its investigational oral therapy BG-12 (dimethyl fumarate) in combination with commonly used first-line treatments in patients with relapsing-remitting multiple sclerosis (RRMS). The trial, called EXPLORE, will evaluate the safety and tolerability of BG-12 when administered with beta interferons (IFNB) or glatiramer acetate (GA) to patients who continue to have evidence of disease activity despite receiving consistent monotherapy for at least a year. Efficacy endpoints will also be assessed in a subset of patients.
Dr. Paolo Zamboni talked to MPs on the House of Commons health committee on Tuesday. He maintains the procedure has resulted in better cognitive and motor function — and fewer symptoms of chronic fatigue — among people with MS who were treated with balloons to open Read more:
CBC News - Prince Edward Island - Start opening veins for MS patients, MDs say
The printed version of the BMJ (published 12 June) carries last week's web based articles on the Risk-sharing Scheme but unfortunately fails to include the comments from the Chair of the Scientific Advisory group.
Professor Richard Lilford from Birmingham has responded strongly to the assertions made by certain health economists in last Friday's BMJ.
In particular he rejects the suggestion that any advice that the Scientific Advisory Group have given is based on anything other than scientific rigour. He also challenges the claims by Raftery and McCabe (see links below) that decisions should be based on observational data after only two years.
I directly employ my own carers, with the support of Penderels Trust who provide all the admin (recruitment, pay slips, tax & insurance calculations, criminal record checks etc). Penderels Trust is a registered charity which was originally set up in Coventry in 1988 to provide support for people who were physically disabled. The Trust now covers much of Britain and the Gloucestershire branch is at Maisemore in Gloucester on tel: 01452-411000, their email address is firstname.lastname@example.org To locate any branch in the country search their website at www.penderelstrust.org.uk
I additionally use a care agency based at Cleeve Hill Nursing Home near Cheltenham, their home care organisation is called Cleevelink, their email contact is email@example.com and telephone is 01242- 672022.
All is explained in the DISABILITY RIGHTS HANDBOOK.
Changes from APRIL 2010. From 6 April HRP will be replaced by a weekly carers credit which will be much the same but is apparently more flexible (thank goodness). One difference is the child’s age which will be limited to under age 12. Also it will be possible to get a credit if you are caring for at least 20 hour a week in some circumstances.
I hope to have more information once the new Handbook is published.
Tuesday, 15 June 2010
Can mental activity protect against memory problems in MS?
A new study shows that a mentally active lifestyle may protect against the memory and learning problems that often occur in multiple sclerosis (MS). The study is published in the June 15, 2010, print issue of Neurology®, the medical journal of the American Academy of Neurology. Read full article here
Date: Monday Jun. 14, 2010 7:41 PM ET
"A study published online will add to the debate raging among the MS patient and research community. The paper, published in the Annals of Neurology, says researchers found no evidence that blockages in veins play a significant role in MS." Read full article here
Monday, 14 June 2010
More than three-quarters (76%) of people looking after an ill, frail or disabled loved one do not have a life outside of their caring role, according to new research issued to launch Carers Week. http://www.carersweek.org/
Teriflunomide in Adjunct to Interferon Beta Significantly Improved Outcomes of Multiple Sclerosis Patients
Caroline says: The age of orals is upon us...teriflumomide (Sanofi) added to beta interferon produced favorable outcomes when studied alone or as an adjunct to beta interferon. This is a Phase II study, which means this is a long way from FDA approval (interesting to keep on your radar, nonetheless).
Fingolimod (also known as FTY720) is a new oral treatment for relapsing remitting multiple sclerosis and is also being investigated for primary progressive multiple sclerosis.
The factsheet discusses the recent and ongoing research into the drug.
11 June 2010 - R&D Magazine
A virus infection can incite the body to attack its own nerve tissue by activating unusual, disease-fighting cells with receptors for both viral and nerve proteins.
The dual-receptor observation suggests a way brain and spinal cord nerve damage might be triggered in susceptible young adults afflicted with multiple sclerosis (MS).
University of Washington Department of Immunology scientists Qingyong 'John' Ji, Antoine Perchellet, and Joan M Goverman conducted the study, which was published June 6 in Nature Immunology.
Date: 16 June 2010 to 27 June 2010 Location: www.mssociety.org.uk/awarenesstalks
From Wednesday 16 June 2010, you can watch a video (and/or read the transcript) of an interview with Jo Sweetland, Bsc hons Occupational Therapist, research occupational therapist at the Institute of Neurology, UCL linked to the National Hospital for Neurology and Neurosurgery, Queen Square, London and Marlo Donato Parmelee on staying in work and living with MS.
Saturday, 12 June 2010
The advisory committee of FDA, that reviews and decides whether to approve a new treatment, has voted that FTY720 demonstrated substantial efficacy in treating relapsing remitting MS and that safety of the proposed 0.5mg dose justified approval.Multiple Sclerosis Resource Centre Gilenia® (FTY720)
Over $2.4 Million Committed to Support 7 Initial CCSVI Grants to Determine the Role of CCSVI (Venous Insufficiency) in MS Disease Process
Over $2.4 million has been committed by the National MS Society (USA) and the MS Society of Canada to support 7 new research projects focusing on the role of CCSVI (chronic cerebrospinal venous insufficiency) in MS.
All research applications underwent a rigorous expedited review process by an international review panel that included experts drawn from all key relevant disciplines including radiology, vascular surgery and neurology. The U.S. National MS Society and the MS Society of Canada worked collaboratively to assemble the reviewers who considered scientific merit, responsiveness to the Request for Applications, experimental design, likelihood of producing definitive data, and the experience of the applicant teams in making their recommendations.News Detail : National MS Society
Thursday, 10 June 2010
"The MS Society's Board of Trustees today announces that the Society will no longer directly provide residential respite care. We will instead move to a more personalised system of support, providing a larger number of people across the UK with more choice and control." Read more here
My name is Sheila Haswell and I run a yoga centre in High Wycombe. I am making contact because we have a visiting teacher from the US who is teaching workshops on MS and Yoga. He has MS himself, he only took to yoga after his diagnosis and he has made remarkable progress. I visited him when he was teaching in France as I also have a brother with MS, and I am very excited that he was able to include a visit to High Wycombe in his busy teaching schedule.
"Garth McLean is an Iyengar yoga teacher from the USA. An actor, Garth developed Multiple Sclerosis in 1996; this led him to yoga and to BKS Iyengar in Pune. Using yoga and diet he has learned how to stabilise his condition and to keep it in remission. Over the weekend of five 2 hour workshops Garth will give an overview of the condition and explain how yoga asanas benefit MS and other similar conditions. He will highlight the most beneficial postures, whilst covering all types of asanas including inversions. This weekend will be invaluable to MS sufferers and to yoga teachers but also to regular students who will undoubtedly find Garth’s teaching inspirational."
Friday 25th June 6-8pm - Price: Members £25 Non-members £30
Saturday 26th June 10am-12pm and 2:30-4:30pm -Price: Members £50 Non-members £55
Sunday 27th June 10am-12pm and 2:30-4:30pm - Price: Members £50 Non-members £55
All weekend rate members £110, non members £130 or £110 plus friend membership of £15 which will be valid until August 2011
If you Google Garth McLean or visit his website www.yogarth.com you will be able to see a short video clip about him and his approach to yoga and MS.
If you are interested in attending please either contact Sarva on 01494 521107,
firstname.lastname@example.org or book via our website www.sarva.co.uk
With best wishes and regards
Co-Director Sarva IYI
Sarva Iyengar Yoga Institute is the trading name of
161 West Wycombe Road, High Wycombe, Bucks
Registered England & Wales No. 4263577
Wednesday, 9 June 2010
"The coalition government has published Our Programme for Government giving greater detail on their policies - the last day to comment is Thursday 10 June."
Just to say thanks to you and every one else involved in fixing this afternoon's boat trip on the Thames from Henley.
Despite the fact that it had been a drenchingly wet night and morning, the sun came out as the journey began at 1430 and the weather remained dry until 20 minutes from its end at 1630. Was God smiling upon the ten members of the Centre offered the afternoon out?
The boat, Rivertime, was a superb adaptation of a Norfolk Broads cruiser, with access ramps and a lift for wheelchairs, not to mention a disabled on-board loo. There was a lot of room for people in wheelchairs and their carers to find comfortable viewing positions in the body of the craft.
The two crew members were affable, informative, helpful and - most important - skilful at controlling the craft.
The journey itself was a revelation of high life. Rivertime started upstream, passing exuberant and amazing riverside houses, few of which could be valued under the £2 million mark. The names of pop stars and TV personalities were mentioned, including that of magician Paul Daniels, the Centre's patron
At Shiplake, Rivertime turned for an extended run downstream, going under Henley Bridge, passing pavilions just erected for Henley Regatta and cruising the one mile length of the course itself, down to Temple Island. Distantly, we imagined the champagne-fuelled braying of stripe-blazered hearties at Phyllis Court.
Rivertime turned upstream just before it reached Mapledurham Lock and returned to its mooring alongside the Henley Rowing Museum on the second of 1630. Had the skipper practiced this piece of timekeeping?
A final plus from the day was that Centre members who knew each other not very well had the chance to natter and discover each other during the trip. Many thanks to one and all.
For details please see: http://www.rivertimeboattrust.org.uk/index.aspx
Tuesday, 8 June 2010
Exercise with Rest Breaks Helps Patients with Multiple Sclerosis
So far he has raised £2,185 - if you would like to add to his sponsorship please visit www.justgiving.co.uk/richard-gillgrass-south-to-north
Monday, 7 June 2010
Teva Pharmaceutical Industries Ltd. announced positive results from a study assessing a new lower-volume injection of Copaxone(R) (glatiramer acetate) containing the currently approved dose in half the injection volume. http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/2479
MS Patients To Launch Rights Complaints Demanding Unproven Treatment - CityNews
Friday, 4 June 2010
MS affects not only the person with MS, but family and friends as well. When a parent is affected by MS, discussing MS with children may seem daunting. Each family is unique and each person's experience of MS is different, so there's no right or wrong way to talk about it, just as there is no ideal time.
Read more here
"The most expensive publicly funded drug trial in history is condemned today as a "fiasco" which has wasted hundreds of millions of NHS cash and raised fresh concerns about the influence of the pharmaceutical industry." Read the full article here
Tuesday, 1 June 2010
"Discover Adventure has been running adventurous, challenging trips for groups all over the world since 1994.
Our challenges come in many varieties - trekking, cycling, horse-trekking, multi-activity, survival, sailing ....
Whether at high or low altitudes, in mountains, desert or jungle, you can rest assured that you will have a real adventure and help others at the same time!
It will be tough at times, but that's what makes it so worthwhile and memorable!"
Please click here for more information. We would always advise any participants to self fund the trip.
Note we offer a FES Clinic at our Centre for more information please contact Ruth Lownsbrough or Mohamed Abdul in our Phyiotherapy Team.
The approximately 100,000 people in the UK who suffer with multiple sclerosis (MS) could benefit from improvements being made to a technology that eases mobility by electrically stimulating improperly functioning muscles and nerves.
A functional electrical stimulation (FES) system generates electrical impulses from skin surface electrodes placed on targeted nerves and muscles. These mild electric shocks make muscles contract and joints move. Read full article here