ChariotMS Trial for people with advanced MS

Can cladribine slow worsening of arm and hand function in people with advanced MS? The ChariotMS Trial is currently testing if a drug called Cladribine can slow down the worsening of hand and arm function for people with more advanced progressive MS.

There are currently no disease modifying therapies available for people with MS who can’t use their lower limbs at all or can only walk short distances with the help of aids like crutches.

The researchers, led by Professor Klaus Schmierer, are hoping to recruit 200 people and so far less than 50 have signed up. 

Can you help? 

If you have advanced progressive MS and an EDSS (Expanded Disability Status Scale) score of 6.5 to 8.5 the researchers want to hear from you. EDSS 6.5 – 8.5 means you can’t walk further than 20 meters with two crutches, or are unable to walk at all, but still have some use of your arms and hands. 

You have to be 18+ to take part in this trial but there is no upper age limit. 

You can live anywhere in the UK. There will be 20 trial sites including locations in London, Belfast, Cardiff and Edinburgh.

To find out more about taking part, email the trial team at chariot@qmul.ac.uk.

You can find out more on the MS Society website (who are helping to fund the research) and by reading this article on Pharmaceutical Technology website: https://www.pharmaceutical-technology.com/analysis/ms/ 

MS Society Bladder, Bowel and MS Webinar

In this information webinar you will meet Noreen Barker, MS Consultant Nurse from The National Hospital for Neurology & Neurosurgery.

Noreen will:

• explain the different kinds of bladder and bowel symptoms that can occur in MS

• explore how these can be treated and managed

• look at what you can do to help your symptoms

• suggest some further sources of support and information

The webinar takes place online  on Thursday 21 July 2022 at 6.30pm

To book your space please click here

MS-UK Information Session – Posture and core exercise

This information session with Dr Gretchen Hawley (Physical Therapist and Multiple Sclerosis certified specialist) will focus on the importance of good posture and the link with core strength.

Focusing first on posture, Dr Hawley will take a look on how improving common postural holding patterns in standing and sitting results in better function for daily activities and other benefits such as increased respiratory and bowel function.

She will then take a look at core strength and its relationship with posture, demonstrating engagement and movement-based exercises that will help with core activation and stability. Good core strength results in reduced fatigue, efficiency and improved quality of movement for everyday tasks

Please note the presentation will be recorded and will be available for you to watch again.

There is a suggested donation is £5 for this information session, but you can make a donation of your choosing from £1 to attend.

Session takes place online on 18 July 2022 at 2pm

To sign up, please click here

Updated NICE multiple sclerosis clinical guideline

NICE has recently published the updated Clinical Guideline Multiple sclerosis in adults: management

It gives recommendations on how healthcare and other professionals should care for and support people with MS. The MS Trust have responded to this updated guideline.

Some of the key points include:

  • Extra detail has been added to recommendations throughout the guideline, for example for people who are thinking about starting or extending their family. A new section provides information and support for people whose MS is becoming more advanced. 
  • More healthcare roles have been recommended for MS teams
  • Expanded guidance on non-pharmacological treatments for fatigue.
  • Fampyra has not been approved despite responses to the draft scope from the MS Trust and other MS organisations highlighting the experiences of people who have taken this treatment. 
  • The MS Trust are concerned that NICE has recommended drug treatments for fatigue based on very limited clinical evidence

More information about the update and the responses to it can be found on the MS Trust website

Enable Magazine July-August issue

Enable Magazine
July-August issue

The UK’s leading disability and lifestyle title

Introducing the July-August issue of Enable Magazine.

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This issue we’re celebrating the passing of the Down Syndrome Bill with three people who were involved; talking about the pros and cons of an integrated health and social care system; and discussing the need for more support for people living with Fibromyalgia. We also explore why the current wait times for an autism diagnosis are so long; share the experiences of young disabled entrepreneurs; and Caroline Casey, founder of The Valuable 500, writes about the current disability pay gap.

Plus, our cover star Samantha Renke takes readers behind the scenes of her debut book; we get readers ready for summer with a recipe from Mary Berry and our best gardening tips; and content creator and mum Nina Tame shares her experiences as a disabled parent. All of this and much more inside.

Encourage your families and friends to sign up!

 
  £12.40 Raised this month  £1287.20 Raised in total  0 New supporters  44 Total supporters 
 
 
 Summer is here and your supporters can raise donations for you when they shop everything for the season online!Whether they are looking to upgrade their garden furniture, do some DIY, or treat themselves to a new wardrobe, they can do it all through easyfundraising.We’ve put together ready-made tools with the latest offers to help you spread the word. Get tools  Introducing Cause of the Fortnight… We’ll be showcasing a good cause for 2 weeks, highlighting their impactful work! This week we want to let you know about Solutions for the Planet. They believe that young people are the key to helping make the world a better place for everyone. Find out more   Sign up new supporters       Copy, paste and share Please support Multiple Sclerosis Therapy Centre Oxfordshire on #easyfundraising, you’ll raise FREE donations with your everyday shopping. It’s quick and easy to sign up! Plus, once you’ve raised your first £5, easyfundraising will double it! Sign up now: https://www.easyfundraising.org.uk/support-a-good-cause/step-1/?invite=22UNQQ&char=122182&referral-campaign=c2s&utm_source=anwupsharebox   
  £42 million Raised 2.3 million Users  180,000 Causes
 
 
   

Wallingford Accessible Boat Club

Four of our members went on a boat trip on 27th June.  They thoroughly enjoyed the trip which was organised with Wallingford Accessible Boat Club.  The trip lasts a few hours and departs from Benson Marina.    Another trip is currently being organised for some members.  If you are interested in a trip let Sue know and she will try and organise it for you

Gatekeeper proposal

PAINLESSPhysicalActivityIN muLtipLE ScleroSis

We invite you to take part in a research study. Before you decide whether to participate in the study, we would like you to understand why the research is being conducted and what your participation would involve. Please take the time to read the following information attentively and discuss with others should you wish.

Purpose of the study.

This is a study about chronic pain in the Multiple Sclerosis (MS) population. Those with a diagnosis of MS are likely to experience mobility problems with an associated reduction in activities of daily living and health-related quality of life score. Previous studies highlight fatigue, spasticity, and lower limb weakness as contributing factors of this. Chronic pain has also been documented as having an impact on mobility and quality of life in patients. However, to date, there is little research as to how chronic pain affects these factors in people with MS. Therefore, we wish to study to what extent there is a difference between physical activity in people with MS with chronic pain versus those without.

The study will run over a seven-day period whereby you will be required to complete questionnaires and undertake a simple gait analysis. You are asked to wear a wrist-worn physical activity accelerometer which will record lifestyle physical activity and sleep as you continue life as normal in your usual environment.

Why have I been invited to participate?

Those with a diagnosis of MS who can walk one hundred metres unaided without resting are invited to participate. We hope to recruit a minimum of twenty participants who may or may not have chronic pain as a symptom of MS.

Do I have to take part?

It is entirely your choice as to whether to take part in the study. If you do decide to participate you will receive this information sheet and a privacy notice documenting how your data will be collected, used, and stored. You will be asked to give written consent to participate however, you are free to withdraw your participation in the study at any point without explanation.

What will happen to me if I take part? 

The study will take place over a seven-day period. You will be asked to complete the 36-Item Short Form Health Survey at the start of the study as a measure of health-related quality of life. We ask that you undertake a simple gait analysis at the start of the study period. This involves a ten metre walk and is measured via an easily accessible mobile phone application which is simple to use. Participants will be asked to wear the AX3-axivity accelerometer on the wrist for the seven days. This device is worn like a watch and records physical activity and sleep. It does not require any user knowledge and can be worn at all times. Participants will be required to complete a Numerical Pain Rating Scale assessment three times a day which takes less than thirty seconds to complete. At the end of each day, we ask that you complete the Brief Pain Inventory Short Form also. These questionnaires will allow us to determine how pain affects mobility as you go about your normal day in the community.

What are the possible disadvantages and risks of taking part? 

We do not anticipate that there are any disadvantages to your participation. Equipment and instructions will be posted to your home address, and we ask that you conduct your week as you normally would. There are no costs involved in participating however, we do require that you wear the device for the full seven days.

We would like to reassure you that there is no need to change your day-to-day physical activity whilst being monitored. The aim is to record what is normal for you.

We understand that quality of life questionnaires contain sensitive information and completion of the questionnaire may evoke feelings of distress or anxiety.

If you feel anxious or distressed, we urge you to seek help immediately:

Samaritans Helpline Number: 116 123. Web Link: https://www.samaritans.org/how-we-can-help/contact-samaritan/

Mind Information and Signposting Line: 0300 123 3933. Web Link: https://www.mind.org.uk/information-support/helplines/

What are the possible benefits of taking part?

There are no direct benefits for individuals who take part. The study aims to benefit the MS population as a whole in furthering our understanding of the effects of chronic pain on physical activity. We hope that in furthering our knowledge in this area we may use this study as a basis for further research.

Will what I say in this study be kept confidential?

Should you decide to partake, you will receive a participation code not linked to any personal details. Hereby we ensure that your participation and data is confidential and would not allow any entity (apart from the research team, as long as the study is ongoing) to trace the data back to belong to you (within the limitations of the law).

Research data will be kept secure at all times, and data digitally transferred from your home will be encrypted to the highest standard and stored on a clinical database held at Oxford Brookes University.

Data processing, generation and retention will be kept in a pseudonymised state during the study. After completion of the study, any link between you and your data will be eliminated resulting in fully anonymised data and kept for a duration of ten years post completion under the ownership of Dr Patrick Esser, Reader at the Centre for Movement, Occupation and Rehabilitation Sciences (brookes.ac.uk/mores). 

What should I do if I want to take part?

If you would like to participate in the study, please email Joni at 19019494@brookes.ac.uk to express your interest. This study will run from July 2022 to November 2022. You are welcome to use the above email address if you have any questions about this study. Please do get in touch, we will be happy to discuss the research and answer any questions that may arise.

What will happen to the results of the research study?

The results of this study will be used in the dissertation of my Medical Sciences degree. If we achieve our recruitment targets and satisfy the scientific rigour I am to deliver, we will consider a scientific publication in the field of physical activity and chronic pain in MS with a potential of presenting results at relevant conferences. In addition, we will aim to provide an overall study summary back to you as a participant and the wider MS community local to Oxford via their support and community networks. 

Who is organising and funding the research?

I am conducting the research as an undergraduate Medical Sciences student at Oxford Brookes University within the Department of Biological and Medical Sciences under the supervision of Dr Patrick Esser, Department of Sport, Health Sciences and Social Work. 

Who has reviewed the study?

This research study has been approved by the University Research Ethics Committee, Oxford Brookes University.

Contact for Further Information

Should you have questions or concerns about any aspect of this study please do not hesitate to contact Joni Bousie at 19019494@brookes.ac.uk who will endeavour to answer any questions. Formal complaints can be raised with the Project Supervisor, Dr Patrick Esser at pesser@brookes.ac.uk. Concerns or complaints about the way in which the study has been conducted should be raised with the Chair of the University Research Ethics Committee on ethics@brookes.ac.uk.

Thank you for taking the time to read this information sheet and considering taking part. 

PARTICIPATE IN RESEARCH             

DO YOU LIVE WITH MULTPILE SCLEROSIS?

Project Supervisor: Dr Patrick Esser Researcher: Joni Bousie Department of Biological and Medical Sciences. Contact information: To ask questions or express an interest in participating please contact: Joni Bousie 19019494@brookes.ac.uk  

CONSIDER TAKING PART IN A STUDY ON ACTIVITY AND PAIN IN MS.

WHAT IS THIS STUDY ABOUT?

The aim of this research is to understand how everyday physical activity may affect chronic pain in MS.

WHO CAN PARTICIPATE?

Participants in the research will:

WHAT IS INVOLVED?

The study involves completing questionnaires and recording their physical activity in their usual environment.

WHAT ARE THE BENEFITS OF PARTICIPATING?

There are no benefits to the individual in participating. It is anticipated the study will develop understanding and lead to further research in the management of MS.