Unpaid carers and the Covid vaccine

It was announced that the JCVI (Joint Committee on Vaccination and Immunisation) has included unpaid carers on the vaccination priority list (UK wide) group 6. Carers will be in a group higher up the list due to age if they are over 65.

If you are a carer, please make sure you are registered as one at your doctor surgery.

For more information please visit the Carers UK website by clicking here 

Memory and MS

“I can’t seem to concentrate and lose my train of thought” Can you relate to this? Problems maintaining your concentration can be common for people with MS. This can make it hard to follow a good book, or a film. You may find situations with a lot of people difficult, or find that you lose track following a conversation. Concentration is involved in almost everything we do. It can affect how much we are able to enjoy TV shows or theatre trips. It can affect how well we can remember a message or conversation. It can affect how long we can work effectively on a household or employment task. Some tips and tricks to include your concentration include:

  • It’s easier to concentrate in short bursts and when you’re interested in the information.
  • Try to schedule important discussions at a time when you won’t be tired or fatigued, or arrange to have a rest beforehand.
  • If you know that your attention is poor, think carefully about adding distractions to your environment. For example, using a satnav or listening to the radio whilst driving might not be a good idea.

For more ideas on improving your concentration, take a look at the MS Trust Staying Smart resource https://mstrust.org.uk/resources/staying-smart/attention

Potential new treatment for people with MS: what is the truth behind the headlines?

Source: MS Society

We have all welcomed the news of a Covid vaccine (well, most people anyway!). This last week you may have seen some headlines about how the science could use some of the science behind some of the vaccines to treat people with MS. But what is the truth behind the headlines?

The information below is taken from the MS Society website and the links will allow you to read all the MS Society and the MS Trust information on it. 

Note from BMSTC: Whilst all potential treatments bring hope, it is essential to stress the word potential. Sadly there are no guarantees and if successful, how long it would take. Read the full article here:https://www.mssociety.org.uk/research/latest-research/research-blog/behi… Read the MS Trust article here: https://mstrust.org.uk/news/researchers-develop-mrna-vaccine-treat-ms-co… ‘New research suggests MS could be treated using mRNA, which has also been used to create two of the COVID-19 vaccines. We take a look behind the headlines to see what this could mean for people living with MS. We don’t yet know exactly what causes MS, so we don’t know how to prevent it. There’s currently no vaccine that can stop someone from developing MS, although there are steps you can take to lower your risk of developing the condition (like not smoking).  However, the science behind two of the COVID-19 vaccines may have potential as a way of treating MS.   

What was being tested? 

Most of us would usually think of a vaccine as something that stops you from getting ill. Normally, vaccines teach our immune systems to fight an invading molecule like a virus. But the new mRNA treatment tested in this study, which was published in the journal Science, is different.  

Unlike normal vaccines, this vaccine is not intended to prevent people from developing MS in the first place. Instead, it’s being tested as a potential treatment for people who already have MS.  

In MS, the immune system attacks the protective myelin coating around our nerves. In this study, researchers wanted to know whether a type of mRNA containing the code for part of myelin can be used to teach the immune system to not attack myelin. 

What does this mean for people with MS? 

In the last 25 years we’ve made huge progress in developing treatments to reduce the immune attacks associated with MS. However, the treatments that are currently available for MS target the immune system as a whole and not just the cells that damage myelin. This means there are side effects.  This is still very early-stage research and has only been tested in mice so far. Although this study has shown promising results, we don’t yet know whether this treatment would work in people with MS. We’d also still need to find ways to repair myelin that has already been damaged, and protect nerves from further degeneration. 

Dr Emma Gray, our Assistant Director of Research, said: “There are over 130,000 people living with MS in the UK, and many don’t have access to effective treatments. This research highlights an interesting new approach and it’s great to see interest in applying this new mRNA technology to treating MS. “However, it is still in the very early stages and has only been tested in animals. We’d be excited to see more research to understand if and how this could benefit people with MS.”’

Covid Vaccine and MS – your questions answered

You may recall that a few months ago Consultant Neurologist, Professor Alasdair Coles, spoke to the MS Trust about the Covid vaccine and MS.

This week he has had his first vaccine and returns to answer some of the questions the MS Trust has been asked about Covid-19 vaccines for people with MS.

You can find more information about MS and Covid on the MS Trust website here: https://mstrust.org.uk/a-z/coronavirus-covid-19-and-multiple-sclerosis

Do you live with Multiple Sclerosis?

Researchers at the University of the West of Scotland invite you to be a part of an online focus group.

The focus group is open to anyone with MS who is a UK resident and over 18 years of age.  The session will last approximately 1 hour, discussing your experiences of living with MS.  Your input will ensure they tailor their future MS research to directly benefit their participants.

Estimated date: 15th – 26th February 2021.

To register your interest, or for more information, please contact the project researcher, Luke Cerexhe via email Luke.Cerexhe@uws.ac.uk

Project Supervisor: Prof Nicholas Sculthorpe,

Email: Nicholas.Sculthorpe@uws.ac.uk

Novartis receives positive CHMP opinion for Kesimpta® (ofatumumab)

Source Pharmaweb.com: Novartis receives positive CHMP opinion for Kesimpta® (ofatumumab), a self-administered treatment for adult patients with relapsing multiple sclerosis with active disease.

•   CHMP opinion based on two Phase III ASCLEPIOS studies that met clinical and MRI endpoints, demonstrating a significant reduction in the number of relapses vs. teriflunomide, evaluated as the annualized relapse rate[i]

•   Relapsing forms of multiple sclerosis (RMS) is the most common form of MS, with around 85% of people in the UK considered to have relapsing-remitting MS at the point of diagnosis[ii]

•   If approved, ofatumumab will be the first and only self-administered, targeted B-cell therapy to slow disease activity in patients living with RMS1

•   Self-administration at home gives RMS patients more flexibility and reduces the burden on patients, HCPs, and the NHS as it faces capacity challenges in light of COVID-19[iii
 

Novartis today announced that the Committee for Medicinal Products for Human Use (CHMP) of the European Medicines Agency (EMA) has adopted a positive opinion and recommended granting marketing authorization of Kesimpta® (ofatumumab) for the treatment of adult patients with relapsing forms of multiple sclerosis (RMS) with active disease, defined by clinical or imaging features. If approved, ofatumumab has the potential to become a first-choice treatment option for patients with RMS that can be self-administered once monthly at home via the Sensoready® autoinjector pen.

Read the full article here.

Exercise is good for your brain

Interesting article from the MS Trust website – It is well-known that exercise is good for physical and mental health, but less well-known that exercising also protects and repairs the structures of the brain.  This review summarises animal and human studies which demonstrate how physical activity has a direct beneficial effect on brain structures and biological processes.

Animal studies have revealed that physical activity increases the production of new neurons, improves the wiring which connects different parts of the brain, reduces demyelination and promotes remyelination. Recent research in mice has also provided evidence that exercise may create an environment in the brain which is more favourable for the actions of the remyelinating drug clemastine. The authors propose the term “MedXercise” to describe the synergistic effect seen when physical activity is paired with medication.

Studies in people with MS have shown that exercise leads to improvements in the wiring within the brain, reduced brain volume loss, reduced lesion numbers, and reduced activity in brain areas which had been compensating for loss of function.

The reviewers conclude that data from animal models and from people with MS support the view that exercise improves brain and spinal cord structures and functions but acknowledge there is still much to learn.

Read the study in more detail here

Coronavirus advice for people with MS

With the Covid guidelines frequently changing, what actually is the advice for people with MS?

It all depends on where you live.

Here is a list of reliable webpages where you can get the most up to date advice. Whilst every care has been taken to only share reputable sites, these are beyond our control. 

MS information

MS Society

MS Trust

Government/NHS

Gov UK: https://www.gov.uk/coronavirus

NHS: https://www.nhs.uk/conditions/coronavirus-covid-19 

To request a test: https://www.nhs.uk/conditions/coronavirus-covid-19/testing-and-tracing/g…

Other

‘Please give me space’: https://pleasegivemespace.uk/

Upright Mobility Walker

This was donated to us and it looks new, they are selling new on ebay for around £300.  If anyone would like it please make a reasonable offer, speak to Sue.

Upright Mobility Walker, lightweight rollator walker, 4 wheel walking aid
Details: The UpWalker Lite is a lighter smaller model of the original UPWalker, the revoluntionary new mobility product that enables users to walk upright in a safer, more secure posture as compared to traditional walkers and rollators that cause users to hunch over.  It is light and easy to manoeuvre in tight spaces, easy to lift and better to transport and suited for smaller, frailer users.  
Specificiations: User Height Range 4’7″ – 5’10″User Weight Capacity 136kgLength 29″Width 24.8″Armrest Height Range 34″-45″Seat Width and Depth 18″W x 10″ DSeat Height from Ground 21.5″Sit-to-stand Handle Height 27″Unit weight 7kgWheel size 8″ Front, 6″ RearFolded Dimensions:Length 29″Height 40″Width 8.5″

Procedures for ALL therapies – commencing 5th January 2021

Commencing 5th January 2021

  • Arrive at the centre and ring the doorbell by the front door, DO NOT ENTER the building.  If someone else is waiting, wait at the bottom of the ramp until the walkway is clear AND KEEP A 2 METRE DISTANCE AT ALL TIMES
  • Someone will come to the front door and take your temperature and ask you to confirm you have no symptoms of Covid19.
  • Before entering the centre, use the automatic hand sanitiser to the right of the front door.
  • You are required to wear a mask that you can either bring with you, or make a donation for one provided at the centre.  (Centre masks are CE Certified masks, Type IIR)
  • You can bring a carer to help you into the centre, if this is necessary, but request that they do not stay, but remain contactable.
  • TURN UP AT YOUR APPOINTMENT TIME, NOT EARLY. IF YOU TURN UP EARLY PLEASE WAIT IN YOUR CAR.  THERE WILL BE NO CHAIRS AVAILABLE IN RECEPTION.

OXYGEN THERAPY:

MONDAY 10.30, TUESDAY 10am and 11.30am, THURSDAY 10.30am, FRIDAY 10.30am

  • IF YOU ARRIVE EARLY PLEASE WAIT IN YOUR CAR.    When your temperature has been taken you need to go STRAIGHT into the chamber with your mask on.  THERE SHOULD BE NO CHATTING IN THE CHAMBER.  Bring your own water and container and take home to wash.  Bring your own blanket/hot water bottle if required and take home.
  • We will only be able to accommodate 3 people per oxygen session due to social distancing at sitting positions 1,3,5 or 2,4,6
  • Keep your paper mask on until pressurisation of tank reaches half way, the operator will tell you when this is.  Masks must be kept on until the end of the session/or until it is hard to breath then remove oxygen mask and put on paper mask.
  • It is your responsibility to sanitise your OWN masks AT HOME using soap and water, make sure you dry properly and remember to bring to each session. 
  • After the session volunteers will completely sanitise the chamber using wipes, this includes door handles, chair, chair arms etc.
  • Oxygen pipes will be sterilised in Milton solution after every session
  • YOU SHOULD LEAVE THE CENTRE IMMEDIATELY AFTER THE SESSION, NO HANGING AROUND IN THE WAITING ROOM.  Payments can be made by online banking if necessary.

GYM:          THE GYM WILL BE CLOSED.

MASSAGE: THERE WILL BE NO MASSAGE.

ACUPUNCTURE: THERE WILL BE NO ACUPUNCTURE.

PHYSIOTHERAPY, FOOTCARE, AND MANUAL THERAPIST:

  • Bring your own towel AND gown/blanket as required.
  • DO NOT HANG AROUND IN RECEPTION, TURN UP AT YOUR APPOINTMENT TIME, there will be no sitting in reception.  Leave the centre straight away.

Other relevant notes:

  • If you feel unwell you should not come in and if you feel unwell within 2 weeks of being at the centre you will need to tell us promptly
  • We can now take payments by card, please do so if you can, OR payments can be made online (ask for details)
  • MS Patients will get priority over appointments
  • No socialising AT ALL, so no tea/coffee/biscuits, sorry ☹
  • You should leave the centre immediately after your appointment.
  • Everyone should sanitise the toilet after each use, using the sanitising spray in the toilet and paper towel, then dispose of in the bin (NOT DOWN THE TOILET)
  • There is also 5 litre hand sanitiser on the reception table
  • These procedures are constantly changing, so please read them if they are sent to you again as they may have been updated.