Financial position of the Centre

The accounts for last year show that the Centre made a loss of approximately £10,000 in 2019. Whilst we have reserves that will cover us for the medium term, this is not a situation that is sustainable in the long term.

There are several ways that all members could help:
1. Suggested donations for treatments. These are kept as low as possible to enable as many people as possible to benefit. However, if you are able to give more, that would help. 

2. Collections. As in past years, we will be doing collections in the summer. Often, despite the fact that we have over 100 members, we don’t have enough people who are willing to give up an hour and a half to do this. Please sign up to do a slot if you are able. Actually, it’s surprisingly enjoyable and interesting. 

3. Sponsorship. Many of us can’t run marathons or climb mountains, but have children, friends, neighbours, etc who can and do. Would they be willing to choose us as their charity? 

4. Fundraising. Any ideas? Do you know anyone who works for an organisation that has a charity of the year?

5. Legacies. We should all update our wills every so often. How about leaving a legacy to OMSTC? 

6. 100 Club. For £5 a month, take part in a monthly draw. Half of the money raised is for prizes (1st, 2nd & 3rd), half the money goes to OMSTC. So obviously the more people are in it, the bigger the prize.

7. Home collection pots. Available from the Centre to put in your home so that visitors can put some coins in. It’s surprising how it all adds up.

8. Collecting tins. Put a collecting tin in your local pub or shop
All treatments at OMSTC for MS people are subsidised quite heavily. If we do not raise more income from collections, sponsorships, fundraising or legacies, the committee will have no option but to revisit suggested donations. It would be wonderful if every member could take action on one of the five points above.

Sue Doran

Centre Manager

New Study Asks: When Does MS Begin?

Source National Multiple Sclerosis Society: Researchers from the Harvard T.H. Chan School of Public Health in Boston and collaborators report on a study that examined blood (serum) samples from 60 military personnel who went on to develop multiple sclerosis years later. Compared to samples from a control group, those who eventually developed MS showed higher than usual levels of a molecule (neurofilament light chain – NfL) that reflects damage to the nervous system.

  • The levels of NfL were increased as early as six years before the clinical onset of MS.
  • In addition, among those eventually diagnosed with MS, the levels of NfL increased over time while this was not the case for controls.
  • Other studies (such as this large Canadian study) have shown that years before they are diagnosed with MS, people can show a distinct pattern of doctor visits for specific problems.
  • Together, these studies suggest that changes in the nervous system related to MS begin well before there are perceptible symptoms, offering hope that there will be a way to predict and prevent MS before it becomes full-blown disease.
  • Studies of NfL in the bloodstream and in spinal fluid have been underway to better define how this biomarker may be employed to help detect and predict disease activity and response to treatments, not only in MS but in other disorders.

The team, including Drs. Kjetil Bjornevik and Alberto Ascherio, published its findings in the January 2020 issue of JAMA Neurology (published early online in September 2019).  Read on.

MS Progression Affected by Degree of Relapse Recovery and Timing of DMT Use, Study Says

Source Multiple Sclerosis News Today:  Recovering well after a first relapse and starting a disease-modifying therapy (DMT) immediately afterwards considerably increases the likelihood of slowing progression in multiple sclerosis (MS), a study suggests.

Its findings support relapse recovery as a critical factor for DMT initiation, and one that should be assessed routinely in MS clinical trials, researchers said.

The study, “Relapse recovery: The forgotten variable in multiple sclerosis clinical trials,” was published in the journal Neurology: Neuroimmunology & Neuroinflammation.

How well a person recovers from an MS relapse is known to affect long-term disease course, with partial recovery being associated with residual disability and earlier onset of progressive MS.

While the effectiveness of DMTs — treatments that reduce the activity and progression of a disease — is known to lessen over time with MS, the role of early relapse recovery in their effectiveness remains unclear.  Read on. 

From depression to dementia, inflammation is medicine’s new frontier

Source The Guardian: The barrier between mind and body appears to be crumbling. Clinical practice and public perception need to catch up.

Unlikely as it may seem, #inflammation has become a hashtag. It seems to be everywhere suddenly, up to all sorts of tricks. Rather than simply being on our side, fighting infections and healing wounds, it turns out to have a dark side as well: the role it plays in causing us harm.  

It’s now clear that inflammation is part of the problem in many, if not all, diseases of the body. And targeting immune or inflammatory causes of disease has led to a series of breakthroughs, from new treatments for rheumatoid arthritis and other auto-immune diseases in the 1990s, through to the advent of immunotherapy for some cancers in the 2010s. Even more pervasively, low-grade inflammation, detectable only by blood tests, is increasingly considered to be part of the reason why common life experiences such as poverty, stress, obesity or ageing are bad for public health.  Read on.

Note: We know that Oxygen Therapy can help to reduce inflammation.

Brain Regeneration Impaired in Progressive MS, Unaffected By DMTs, Study Reports

Source Multiple Sclerosis News Today: Regeneration in the brain is reduced in people with primary progressive multiple sclerosis (PPMS), but enhanced during disease activity in those with relapsing-remitting MS (RRMS), a study reports.

The results also show that regeneration is unaffected by treatment with disease-modifying therapies (DMTs), as shown by the levels of a regeneration marker in the brain called growth-associated protein 43.

The study, “Cerebrospinal fluid growth-associated protein 43 in multiple sclerosis,” was published in the journal Nature Scientific Reports.

In MS, immune cells attack the myelin sheath that protects nerves, leading to neurodegeneration. In early disease stages, regenerative mechanisms are activated to help repair damaged tissue and promote the replacement of lost myelin — a process called remyelination.  Read on. 

Autologous Hematopoietic Stem Cell Transplantation versus Best Available Therapy for Multiple Sclerosis

Source Pipeline Review: Clinical Trial of Autologous Hematopoietic Stem Cell Transplantation versus Best Available Therapy for Multiple Sclerosis (BEAT-MS) Begins Enrollment.

The Immune Tolerance Network (ITN) opened the BEAT-MS clinical trial for enrollment. BEAT-MS or “Best Available Therapy vs. Autologous Hematopoietic Stem Cell Transplant (AHSCT) for MS” will investigate high dose immunosuppression followed by AHSCT – a type of transplant using a patient’s own immune stem cells – compared to the best medical treatment currently available for multiple sclerosis (MS) in participants with relapsing MS.  Read on. 

Plegridy approved for relapsing remitting MS in England

Source MS Trust: NICE has published its final decision recommending that Plegridy can be prescribed by the NHS for relapsing-remitting MS.

In May 2018, NICE carried out a review of several of the MS drugs and decided that Avonex, Extavia, Rebif, Copaxone and Brabio should continue to be available on the NHS in England. At the time, NICE was unable to make a recommendation on Plegridy and has now completed a separate appraisal.  Read on. 

Search About us Blog Membership Contact Newsletters Home How we can help Your first visit About MS Support us Events Donate The MS Society went to 10 Downing Street with their ambassador Janis Winehouse

Source MS Society: The MS Society went to 10 Downing Street yesterday with their ambassador Janis Winehouse and campaigner Ashley Arundale to deliver a message to the PM: Unfair PIP assessments must change.

“More than 21,000 of us have signed an open letter demanding the UK Government makes changes to Personal Independence Payment (PIP). The open letter came after our research showed major flaws with the system.

It highlights some of our concerns with PIP, including uninformed assessors, inaccurate reports and excessively complex forms.

Our Downing Street delivery team was made up of people from our campaigns team and our wider MS community – including our MS Society Ambassador Janis Winehouse who has secondary progressive MS and campaigner Ashley Arundale who has relapsing MS.”  Read on. 

Efficacy of three neuroprotective drugs in secondary progressive multiple sclerosis (MS-SMART)

Source The Lancet: Neurodegeneration is the pathological substrate that causes major disability in secondary progressive multiple sclerosis. A synthesis of preclinical and clinical research identified three neuroprotective drugs acting on different axonal pathobiologies. We aimed to test the efficacy of these drugs in an efficient manner with respect to time, cost, and patient resource.

Methods

We did a phase 2b, multiarm, parallel group, double-blind, randomised placebo-controlled trial at 13 clinical neuroscience centres in the UK. We recruited patients (aged 25–65 years) with secondary progressive multiple sclerosis who were not on disease-modifying treatment and who had an Expanded Disability Status Scale (EDSS) score of 4·0–6·5. Participants were randomly assigned (1:1:1:1) at baseline, by a research nurse using a centralised web-based service, to receive twice-daily oral treatment of either amiloride 5 mg, fluoxetine 20 mg, riluzole 50 mg, or placebo for 96 weeks. The randomisation procedure included minimisation based on sex, age, EDSS score at randomisation, and trial site. Capsules were identical in appearance to achieve masking. Patients, investigators, and MRI readers were unaware of treatment allocation. The primary outcome measure was volumetric MRI percentage brain volume change (PBVC) from baseline to 96 weeks, analysed using multiple regression, adjusting for baseline normalised brain volume and minimisation criteria. The primary analysis was a complete-case analysis based on the intention-to-treat population (all patients with data at week 96).  Read on.