Help heating your home

With energy prices set to increase further, we thought it would be a good time to share some information about what financial help may be available to you. 

If you have a question about benefits, the MS Society offers an MS benefits advice service, which offers free, confidential advice. You can get in touch with the MS Benefits Adviser by calling their Helpline on 0808 800 8000 or emailing

Locally Communicare and Stepping Forward both offer great advice and can help you complete forms. It is recommended that you contact them as early as possible in the application process so they can offer you the best possible advice. 

The MS Society offer a general overview of the financial help that maybe available to you (click here) and a more specific guide which you can access by clicking here

MS Research

I am a researcher from Oxford Brookes University and my team and I are interested in how COVID-19 and lockdown may have impacted diet and other lifestyle behaviors.  Due to the limited research to date, we are starting our research from a very fresh view.

A short online questionnaire to ask about dietary and other lifestyle habits (exercise, supplement use, etc) on health (both physical and mental) post-COVID-19. We are looking at this in people with Multiple Sclerosis, Parkinson’s, Spinal Cord Injury and those who have had a Stroke

Participant Information Sheet

Title: The impact of COVID-19 on lifestyle and dietary habits during and after lockdown in people with neurological conditions, and their perceptions of how these changes have impacted their physical and mental health. 

Invitation Paragraph

You are being invited to take part in a survey-based research study. Before you decide whether or not to take part, it is important for you to understand why the research is being done and what it will involve. Please take time to read the following information carefully.

What is the purpose of this study?

The purpose of this study is to understand the impact the COVID-19 lockdowns have had on the lifestyles of people with Multiple Sclerosis (MS). People with long term conditions such as those with MS are likely to be affected both physically and mentally from COVID-19. People with MS are considered a vulnerable group by Public Health England, however many may not consider themselves at most need of attention. Little to no research has assessed the lifestyle changes and wellbeing of this sub group during and after the pandemic.

The aim of this research is to explore changes in lifestyle and dietary habits during and in the aftermath of COVID-19 in people with MS. Also, concerns and barriers to living healthy on the transition into a new ‘normal’ during the recovery from the pandemic will be assessed. We will assess impacts from these lifestyle changes on both physical and mental health, and on symptoms that are specific to people with MS. 

Why have I been invited to participate?

You have been invited to participate because you have MS and are above the age of 18 years old. We will be recruiting 100 people with MS to participate in this study.  

Do I have to take part?

It is up to you to decide whether or not to take part in this research study. If you do decide to take part, you will be asked to consent by clicking the consent box below, so that we are able to collect your answers and use your data. If you do not wish to take part, simply do not complete the rest of the questionnaire. You are free to stop the questionnaire at any time. Whether you take part or not, it will have no impact on your treatment or access to the services through which you may have obtained the link for this questionnaire. 

What will happen to me if I take part?

If you decide to take part you will be asked to consent by confirming below. You will then be asked to complete the questionnaire. It should take approximately 20-30 minutes to complete. All answers are anonymous, and we ask that you do not write your name anywhere. Your answers will then be recorded by our system, and analysed. If you would like to print the questionnaire out and complete it that way, please do so and then email your responses to the research team: If you would like to print the questionnaire and then return it through the post, please contact the research team, and we will make the appropriate arrangements, including postage. 

What are the possible disadvantages or risks of participation?

There are very little disadvantages to taking part in this research, and the risk for participants remains very low. We are aware that completing a questionnaire like this might be a bit distressing to some participants. In that case, we do ask that you contact the research team, so that we can offer you the appropriate support, and monitor the wellbeing of our participants. If you would like further support you may contact: During the completion of the questionnaire you may decide to stop completely or take required breaks at any time.

What are the potential benefits of taking part?

There will be no direct benefits to you for taking part in this study, however the results will help with future research for those with MS in light of COVID-19. 

Will what I say in the study be kept confidential?

All of the information you provide will remain completely confidential within the legal limitations of the law. Data will be both encrypted and password protected, it will be stored on the Oxford Brookes University system in electronic form. Data will be shared with the named researchers only. The only people who will have access to your information is the research team, and this will be securely stored at Oxford Brookes University. 

What should I do if I want to take part?

Complete the consent form on the following page and continue with the survey from there. Alternatively you can ask the research team for a hard copy of the survey. 

What will happen to the results of the research study?

The results of this study will help us to develop further research to help people with MS to live better during the aftermath of the pandemic. The results will be presented at conferences and published in peer reviewed journals. Individual results will not be possible due to the anonymous nature of data collection however if you would like to know the group results of this research we can send you a summary.

Who has reviewed the study?

The research has been approved by the University research ethics committee, Oxford Brookes University. If you have any concerns about the conduct of the study please contact

Contact for Further Information

If you have any questions about this research please contact: 

Dr Shelly Coe on

Thank you for taking time to read this information and thank you in advance for your participation in our research.

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MS Symptoms – what causes them?

Source: MS Trust

Multiple Sclerosis can cause a wide variety of symptoms. All of these symptoms can be experienced in other conditions.

In MS, the exact position of the damage to your nerves relates to the symptoms you experience, which means that each person’s experience of MS is different. Most people will only experience a small number of all the possible symptoms.

Check out this MS Trust web page to find out what may be causing your symptoms: 

Online research – can you help?

A Music Therapy postgraduate student from the University of the West of England, Bristol, have asked us to share this survey. She is looking at how music therapy could be used in support groups for people with MS and has put the following information together: 

‘Participants aged 18+ who have been diagnosed with MS wanted for research exploring how music therapy can be used in support groups for people with MS. The research will be conducted through an online survey and you will be asked about your experiences of MS support groups and therapies, and how music and musical activities could help support people living with MS. 

The survey should take no more than 30 minutes to complete.

If you are interested, please follow the link below for more information. 

Thank you.’

Click here to take part in the survey 

MS Hug

Last week was National Hugging Day – but not all hugs are welcome.

The ‘MS hug’ is an uncomfortable, sometimes painful feeling of tightness around the chest or stomach. It’s not dangerous, but it can be frightening, especially if you haven’t come across it before.​ The MS hug can feel different from one person to another. It’s also known as banding or girdling, but people describe their MS hug in all kinds of ways to help others understand it, including their MS team. The MS hug can be one of the first symptoms of MS, or it can happen years after diagnosis. Not everyone with MS gets the MS hug. 

You can find out more on the MS Society website:

Source: MS Society 

New study provides strong evidence for role of Epstein Barr virus as a trigger for Multiple Sclerosis

Source MS Trust: New research has provided the strongest evidence yet that infection with the Epstein Barr virus (EBV) acts as a trigger for people to develop MS.

Researchers in the United States made use of a series of blood samples collected from more than 10 million military personnel. They determined EBV status at the time the first sample was taken and then followed additional samples to explore the relationship between EBV infection and MS onset. People infected with EBV had a 32-fold increased risk of developing MS.

They also measured blood levels of neurofilament light chain (NfL), a substance released into the spinal fluid and blood when nerves are damaged by MS activity. In people with MS who were EBV negative at the beginning of the study, there was no indication of elevated NfL until they were infected with EBV. After infection, elevated levels of NfL were detected before MS was diagnosed. Increased NfL levels were seen only in people who became infected with EBV and later developed MS.

The study did not investigate whether EBV is involved in ongoing MS activity (for example triggering relapses or progression) in people who already have established MS.

About Epstein Barr virus

The Epstein-Barr virus (EBV) is a very common virus. Up to 95% of all adults will have been exposed to EBV, but most of them will not notice any symptoms or ill health. Some people will have a more serious infection which causes glandular fever (infectious mononucleosis). Modern detection methods show that practically everyone with MS has previously had EBV infection.

EBV has been suggested as a possible trigger for MS for some years, and this research adds further support to this theory. Most people will have been infected with EBV during childhood, so the real mystery is why the infection should lead to MS in only a few cases. The most widely held view is that a combination of risk factors are involved, including an underlying genetic susceptibility, lifestyle (smoking, diet, obesity), and environment (sun exposure, pollution). Understanding how EBV interacts with other factors to cause MS may ultimately lead to a treatment which prevents MS. A vaccine against EBV is currently in early-stage clinical trials.

Bjornevik K, et al.
Longitudinal analysis reveals high prevalence of Epstein-Barr virus associated with multiple sclerosis.
Science. 2022 Jan 21. doi: 10.1126/science.abj8222. Epub ahead of print.
Read summary

Raffle prizes wanted for quiz night

Raffle prizes wanted for quiz night on 18th March, especially things like chocolate, biscuits, wine, unused xmas presents.  Many thanks. 

PS – don’t forget to get your teams together – ask Sue for a team application form!!