The burden of fatigue
81% of people living with multiple sclerosis (MS) experience fatigue (1). In an interview study with people with MS, one woman described fatigue as, “‘it puts my body in a situation where I feel like I’m shutting down. Like I’m just stuck in concrete and can’t move” (2). This type of fatigue is different to normal tiredness and isn’t usually relieved by sleep or rest (3).
Fatigue can have a big impact on people’s lives. Research shows that fatigue in MS is associated with:
Developing treatments to help manage fatigue is important not only to alleviate the symptom but to improve overall quality of life. In collaboration with people with MS, families and healthcare professionals, the MS society has identified fatigue as a top research priority (5).
The Flexible Brain Training (FLEX) project is an online program developed by researchers at King’s College London and people with MS. FLEX is designed to help people with MS manage the impact of fatigue on their lives though a type of brain training.
What is flexible brain training and how might it help?
Evidence shows that fatigue affects areas of our brain which are involved in processing information (6). For example, you might notice when you’re fatigued it’s difficult to focus or take in new information. To get around this our brains make mental short-cuts, for example skim reading.
By continually using these short-cuts our brain gets used to following the same path and the short-cuts can become automatic. These automatic short-cuts can result in our brains becoming less flexible over time. So, rather than taking in new information and adapting to environmental cues, our brain relies on the same old paths it is used to taking.
The FLEX project is series of self-guided, online sessions over a period of 3 weeks, designed to increase brain flexibility through repeated practice.
The FLEX project will assess whether we can
We are now testing the FLEX program to see if it is helpful for people with MS.
We are recruiting people with MS who experience fatigue to take part. Participation involves
To find out more please register your interest on the study website: www.flexproject.co.uk
Toilet trouble is very common in MS
Bladder and bowel issues affect a large number of people living with multiple sclerosis (MS). Problems in these areas can seriously affect quality of life, as you may be afraid to leave the house for fear of having an ‘accident’, and therefore symptoms can impact on your independence and social activities.
No two people experience bladder and bowel issues in the same way, as is true of most MS symptoms. For some, the problem is incontinence, where they cannot control the release of urine of faeces. For others, they may have issues with starting the flow of urine.
Experts advise you try to drink plenty of water. Though that can seem counterintuitive for bladder problems, especially if you have incontinence, if you don’t drink enough water it means urine in the bladder will be more concentrated, which can cause urinary tract infections. Aim for between one and two litres of fluids a day. If you struggle with plain water, adding slices of fruit can help make it more palatable.
Avoiding caffeine, alcohol and artificial sweeteners such as aspartame can be helpful as they are all bladder irritants.
For bowel problems, start keeping a bowel diary so that you can share it with your healthcare team. There are apps that can help with this, such as the Bristol Stool Chart app. This will help your healthcare team get a clearer picture of what’s going on.
With constipation, you can try increasing both your fluid and fibre intake, doing regular exercise if you can, and there are certain abdominal massages which can help.
You could also try a Squatty Potty, or a similar type of small stool that goes around the base of your toilet and alters the position of your bowel. Before toilets were invented, humans would naturally squat to go to the toilet, and this stool allows you to benefit from that position, while still using a toilet. Some people find this helps ease constipation.
'I was contacted by Molly from MS-UK regarding donating a prize for their first virtual auction. We were of course delighted to donate a case of our World’s Favourite Wine Selection in order to help raise funds and support such an important charity and the vital work that they do', says Dan Farrell-Wright, director at Wickhams.
Dan continues, 'The 'World’s Favourite Wine Selection' case includes six bottles, one from each of the big beasts of the wine world including a Pinot Grigio, Cabernet Sauvignon, Sauvignon Blanc, Merlot, Chardonnay and Malbec. All of the wines in the case are great examples of their type and have been carefully selected by us. The case includes a bottle of Peculiar Mr Pat, Punto Alto Malbec, Sierra Grande Cabernet Sauvignon, One Chain 'The Googly' Chardonnay, San Antini Pinot Grigio and Whale Point Sauvignon Blanc.
Sourcing the finest Estate bottled wines, here at Wickhams online wine and spirit merchant, we curate collections from the everyday to the classics while ensuring there's something to suit all tastes. We passionately believe in stocking wines, spirits and gift sets at a range of price points, to ensure our products are accessible to all.'
'I was contacted by Molly from MS-UK to donate a prize for their first virtual auction. Experience Days provides thousands of experience gifts across the UK, from bungee jumping to spa days - so no matter what your giftee loves to do, you’ll find something for them.
We have a long history of engaging with and helping charities with auctions and events, donating our vouchers as prizes – so we were only too happy to join in! MS-UK is a cause we have followed and donated to in the past; supporting those with multiple sclerosis with a range of resources, MS-UK is an essential charity and one we are proud to support. We hope that our donation to their virtual raffle goes some way to help this worthy cause.
We wish MS-UK the best of luck with their virtual auction!'
Martin Baum explains how an MS-induced UTI may actually have been a fortunate thing
The conversation with my sister went as follows, “This morning I had urodynamic testing on my bladder. In a couple of weeks, I'll be going into hospital for a prostate biopsy to check the status of a nodule and, at the same time, to have a prostate rebore, also known as a HoLEP procedure, to remove a lobe which is blocking my bladder.”
That was a conversation I never thought I would have, but then, to paraphrase Forest Gump, “Multiple sclerosis (MS) is like a box of chocolates. You never know what you’re gonna get.” Ironic, really, that after living with this condition for 40 years I thought I totally had the measure of it. I wasn’t even close.
This whole rigmarole began in May after I contracted a urinary tract infection (UTI) which triggered a series of events that led to a scan and, ultimately, an appointment to see the urologist. An MRI confirmed I was retaining more than I was expelling from my bladder, which led to me having a urodynamic assessment to test the flow and spasms of the muscle in the wall of my bladder.
While the prostate element is as unrelated to MS as it gets, after reading the results of the MRI scan, my urologist thought it wise to operate on the prostate and carry out a biopsy at the same time. This would enable him to not only analyse and, fingers crossed, rule out any potential cancer scenario, but also to remedy a long-time blocking of my bladder, which hitherto had always been put down to muscle spasms related to MS.
Up until this point I’d like to believe I have been fortunate in my relationship with MS. Despite the many varied symptoms I have had to endure, I know I have been spared from too much invasive meddling from doctors and neurologists, although I now consider myself to be a veteran of the prostate test, having had four inside one year. In these very strange Covid times, where we are constantly being told that “lessons have been learned”, I realised (and perhaps not for the first time) that I cannot blame MS for everything.
I cursed the blasted UTI when it came. It took several weeks for the antibiotics to neutralise it. But, because of it, come September – and yes, I’m counting down the weeks – I will finally be able to wee unimpeded. Also, the detection of a nodule that – had it been left undiscovered – could have multiplied into something more sinister and far greater, is enough to put MS in the shade.
The botty doctor, as I now affectionately call my urologist, is going to return a sense of normality to me. Also, what I consider to be good news – yes, there really was good news, well, to me, anyway – was being told that because of MS, my prostate will remain in situ, as removing it runs a high risk of incontinence. Oddly enough, given all I am about to undergo, knowing I was holding on to my prostate actually lifted my mood.
Yet I am under no illusion how painful this is going to be. No pain, no gain is an exercise motto for anyone who works out in a gym but, for the duration of my operation, and recovery, this is a saying I’ll be proudly (if not a little bravely) claiming as my own.
I work for the print company Penrose Group, and the company has supported charities for several years, with donations and supporting charities with their printed marketing assets.
The culture of the company, supporting others, inspired me to take up this cycling sportive challenge. I have close family members with MS and friends with family members with learning disabilities. I wanted to help them all and opted to split all the donations equally.
Dramatize, located within walking distance from Penrose Group, provides vital support for adults with learning difficulties. At Penrose Group, we believe in supporting our local and the wider community. Raising funds for Dramatize is helping our local community, and sharing the funds raised will support MS-UK provide their services nationally, and I know I will be helping my friends and family.
To date, I have completed three sportives - 100-mile Rutland Border Epique - who starts with hilly 100-mile? The flatter, 75 miles, Giant Sportive Doddington Sportive.
My third sportive destroyed me. The 70-mile, off-road Surrey Hills Epic tested my resolve to the limit on one of the hottest days in July (17th). Mountain biking is new to me, and I assumed the course would be pleasant bridleways, cross picturesque fields and gentle winding hills. I could not have been more wrong. Aggressive hill climbs, uneven tracks, sharp twists, and turns through the Surrey jungle repeatedly throw me off the bike. Thankfully the hedges broke my fall. The thrill of the descents terrified me and bought back happier memories of my childhood on a BMX hurtling down the hills where I grew up in Leicester. I sustained a few cuts and bruises, but they were worth it.
I have added another 100-mile Sportive to my original four rides - the JETRide Sportive. The JETRide Sportive starts a couple of miles from my front door, at RAF Cranwell. I thought it would be rude not to include this, being so close to my home.
My final sport is the 99-mile route of the Lincoln Le Petite Sportive in Sept 2021. In Sept 2019, the Lincoln Petite was my first sportive (I started cycling in June 2019), over 700 cyclists, and I came in last. I was so far behind that they began to pack up the finish line the minute I crossed the finish line. I'm determined not to finish last this September.
There is a rumour that I may add the 105-mile Lincoln Grand Prix Sport in Oct 2021; I'll keep you posted if I add this event.
If you would like to donate, please click here.
Is MS linked to a retrovirus? Ian Cook shares some very interesting research
One of the perks of being a freelance journalist is that people ‘tip you off’ about interesting new developments in multiple sclerosis (MS) research. These tip offs are often stories ignored by the mainstream medical press.
One tip-off that came to me recently was a phone call from another MSer telling me about an academic paper titled ‘HIV infection and multiple sclerosis: a case with unexpected ‘no evidence of disease activity’ status’. The paper was published in March in the Journal of International Medical Research.
The paper outlines the case of a patient diagnosed with MS who saw his condition substantially improve following subsequent HIV infection and treatment. The patient achieved No Evidence of Disease Activity (NEDA) without any MS disease-modifying drugs and continues to have no disease activity more than ten years after being first diagnosed. The authors speculate that antiretroviral therapy, which the man is still taking for his HIV, may be responsible for his MS ‘disappearing’, with the HIV medication perhaps treating his MS as well.
Human endogenous retrovirus
Of course, MS is not a retroviral infection like HIV so what is going on? One theory is that this patient’s MS, and all MS, is caused by something called a HERV or human endogenous (inherited) retrovirus. HERVs share similarities to retroviral illnesses like HIV and thus respond to HIV drugs as is shown in the above study.
Not a lot is known about HERVs but basically, they are remnants of retroviral infections which infected our ancestors and which entered our DNA, being inherited by subsequent generations. In everyone’s DNA there are hundreds of HERVs. Amazingly HERVs make up around 8 per cent of the human genome and several disorders are thought to be associated with the re-activation of HERVs. The ‘MS-HERV’ theory hypothesises that under certain circumstances, like infection with another virus (Epstein Barr virus for example), HERVs can spring back to life causing illnesses like MS. HIV drugs, being anti-viral, help keep these HERVs ‘under control’ in the same way that they keep HIV under control. This is what is assumed was happening in the 2021 case study.
Interestingly the 2021 case study is not the first one where a patient taking anti-retroviral drugs for HIV saw a disappearance of MS. A case report was published in 2011 in the European Journal of Neurology saying the same thing. It was titled ‘Could antiretroviral drugs be effective in multiple sclerosis?’ and outlined the case of an Australian man with HIV and MS who also experienced a marked improvement in his after taking anti-retroviral HIV drugs. The 2011 Australian case study led to two important developments in exploring the theory that a HERV could be involved in MS.
First, a 2015 survey of people with HIV found that far fewer of them had MS than would be expected. The thinking was that the HIV drugs used by patients who had both HIV and MS were also treating the patients’ MS like in the two case studies already mentioned.
Secondly, in 2019, an anti-retroviral HIV drug raltegravir (Isentress) was tried out on a small group of MSers. Sadly, raltegravir did not lead to any improvement in the MSers’ condition. It was later suggested that ratelgravir was the wrong HIV drug to use on its own. This idea makes sense because HIV patients like the above two take a ‘cocktail’ of drugs, sometimes ten or more, and choosing the right anti-retroviral drug or drugs would obviously be crucial to success.
As far as I am aware there is no current project to try out other HIV drugs on MS. But I emailed the March paper to Prof. Julian Gold, who led the raltegravir trial and published the 2011 case study. I asked him for his view. He said he would send the 2021 paper to his colleague, Professor Gavin Giovannoni from London University and that he was personally still ‘very committed’ to the concept of viral or HERV involvement in MS although he acknowledged that research in this area is ‘very sporadic.’
Hope for the future
Sporadic, of course does not mean non-existent and there is some work going on right now exploring the idea that HERVs and MS are connected. A bio-tech company based in Switzerland called Geneuro is currently pursuing the HERV theory for treating MS but using a drug it has been developed specially rather than using an existing HIV drug like Gold did in his 2019 trial.
Geneuro recently announced that enrolment of MS patients had been completed for a 48-week Phase 2 study of temelimab, a drug it has developed to treat the ‘MS-HERV’. Results are due to be reported in the first three months of 2022. This is certainly something to look out for next year.
In the meantime I shall look out for further stories similar to ones published in the European Journal of Neurology and the Journal of International Medical Research. There is a steady stream of these stories, and it’s a shame that so few MS researchers give them the attention their investigation so richly deserves.
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Did you know that disabled people face extra costs of around £583 a month? On average, a disabled person’s extra costs are equivalent to almost half of their income and according to research carried out by the charity Scope, money spent by disabled people does not tend to go as far. So, maximising income and using all entitlements can help make sure your finances are looked after as much as is possible.
Our welfare benefits system is an important part of giving disabled people some financial security and a degree of financial wellbeing. Claiming the right benefits with the right premiums can allow people to exercise choice and control over their support and the way they live their lives.
In this blog, we look at a variety of ways to either make sure you are receiving what you are entitled to or ways to save money by accessing specific schemes available to you.
Navigating the benefits system can be a complex and often lengthy task. Knowing how to find out what you may be entitled to can be difficult. That is where the handy online benefit calculators can help. They are only available to those living in the UK.
There are three main independent benefit calculators that can help you, to find out what you may be entitled to, and how to claim for them. They are free to use and are anonymous. They vary slightly in the information they can give you. For example, Turn2us does not give information on contribution-based benefits whereas the others do.
entitledto gives information on income-related benefits, tax credits, contribution-based benefits, Council Tax reduction, Carer’s Allowance, Universal Credit and how your benefits will be affected if you start work.
Turn2us gives information on income-related benefits, tax credits, Council Tax reduction, Carer’s Allowance, Universal Credit and how your benefits will be affected if you start work or change your working hours.
Policy in Practice gives the same information as entitled to, but also tells you how the benefits are calculated and how they will be affected if you start work or change your working hours.
To complete the calculators, you will need to provide information on any savings you may have, household income, existing benefits and pensions (including anyone living with you), your outgoing bills (such as rent/mortgage/childcare payments), a council tax bill.
Circumstances can mean that sometimes extra funds are required to help with things such as adaptations, mobility aids, new technology and equipment, to name but a few. There are grant funds available that may be able to help. Grants are not normally repayable and occasionally you may need to work with an intermediary organisation such as Citizens Advice or your local disability support charity.
Turn2us has a helpful search tool that can find potential grant funds. Using the filters on their search function you can search by occupational grant-giving bodies, disability charities and organisations that are local to you.
MS Research and Relief Fund offer financial assistance specifically to those affected by MS.
Disability grants is a website that provides a guide to grants for the disabled. You can narrow down your search to be more specific, such as a grant for disability equipment, including wheelchairs, adapted vehicles, trikes and bikes, computer and assistive technology grants.
Finding insurance that provides you with the right type of cover, whilst being affordable, can prove to be complex. This is especially so for those affected by a registered disability such as multiple sclerosis (MS) and applies to all types of cover. For example, with home insurance, you may have specific expensive items that you need to be covered for accidental damage, such as stairlifts, and your medical condition may lead to an increase in your travel insurance premiums.
It is important to be aware of issues that you may need to consider, whether that be when you are looking for a brand-new policy or how to deal with any changes in your medical circumstances that could affect your current cover.
MoneyHelper formerly known as the Money Advice Service is powered by HM Government and provides a detail-rich guide to obtaining insurance if you are disabled or ill. This guide looks at your legal rights, highlights things to consider when buying insurance and how to challenge decisions that you feel may be discriminatory.
Insurance and MS is an informative guide provided by the MS Society which looks specifically at issues that people affected by MS should consider, from types of policy and cover they provide to what you should tell insurance companies when disclosing your condition.
If you live in Scotland, Wales or Northern Ireland your prescriptions will be free, but if you live in England the cost is £9.35 per item. Some people qualify for free prescriptions if they are eligible for a medical exemption certificate. One part of the eligibility criteria that may well apply to some people living with MS is that if you have ‘a physical disability which means you cannot go out without the help of another person’ then you should be eligible for an exemption certificate.
Most of us have heard about the ‘pink pound’, but do you know about the ‘purple pound’? This is the spending power attributed to disabled households in the UK and amounts to £249 billion a year. Research has shown that disabled people are overspending in many areas compared to non-disabled people. We know that people may need a little extra help when making sure they have as much choice as is possible in how and where to spend their purple pound.
If you want to be able to make sure your disability-related expenditure is money well spent, then it would be good for you to know about the Research Institute for Disabled Consumers (RiDC). RiDC is a user-led research charity, run by and for people with a lived experience of disability. They give practical information for disabled and older people, whether that’s information about being at home, or out in the community and all based on independent unbiased research. They have guides on buying mobility scooters, getting mobility scooters into cars, driving with a disability, specialised hand controls in cars, stairlifts, home adaptations, accessible bathing and showering and even washing machines!
Whilst planning purchases for often expensive independent living aids and trying to make all the pennies stretch as far as you can it is also worth knowing about Living Made Easy. Living Made Easy is a large and trusted online comparison site for sourcing daily living equipment, disability aids or assistive technology. The website is designed and run by the Disabled Living Foundation (DLF) which is a national charity whose purpose is to provide independent advice about independent living for people with a disability, older people, their carers and families. You can search for products, get advice and find the cheapest national retailer.
It is important to know and remember that if you're disabled, the Government says you shouldn't be charged Value Added Tax on items that have been designed or adapted for your personal use – e.g., specialist mobility equipment to help you get around. As this includes products specifically made for disabled people, your supplier, installer or tradesman shouldn’t charge VAT. Your supplier will usually ask you to sign a declaration form stating the item is to be used by a person with a disability.
Do you like movies and the cinema? Do you get PIP? You could well be entitled to a CEA card from the UK Cinema Association. The card enables a disabled cinema user to gain a complimentary ticket for a person to accompany them when they visit a participating cinema.
The Warm Home Discount scheme requires big energy suppliers (by law) to help vulnerable customers in England, Scotland and Wales to pay for energy. Those who are eligible can get £140 off your energy bill. Although the money is not paid directly to you, it is a discount/rebate on your energy bill, between October and March. To be eligible for the scheme you must be on a low income or receive the Guarantee Credit element of Pension Credit. It is suggested that you first speak with your energy supplier to see if they are part of the scheme. The Warm Home Discount also has a helpline that may be able to help, they can be reached on 0800 731 0214.
If you need independent financial advice over money matters for some of the bigger things in life such as making the most of a lump sum of money such as a life insurance pay-out, redundancy payment, an inheritance or planning your retirement, Citizens Advice has some great information. These web pages tell you all about the different types of advisors and how to check they are qualified and registered with the relevant bodies.
There are many other schemes out there, if you have accessed one that we have not mentioned, please do email our helpline with details as your information could help others. Email firstname.lastname@example.org
As I prepare to embark on my 3rd and 4th marathons respectively, the biggest difference this time around is just how much this particular charity means to me. The training is never easy and the marathon itself is hardly a picnic but the cause, which is so very close to my heart, will keep driving me on all the way to the finish. Yes, there is a small matter of 26 miles! Or 52 in my case! However, this is a small distance to cover in comparison to the much bigger objective of doing all I can to help the charity, my cousin and all her fellow MSers. Nothing will stop me.
I have often been told that I have an infectious energy and enthusiasm, and perhaps that goes some way to explain why so many people around me have also now become so passionate about multiple sclerosis (MS) and fully embraced the cause, which has been very heart-warming to see. It is also helping raise awareness about the condition and the charity, as well as much-needed funds. Long may it continue.
In such unprecedented times, there have been a few obstacles in terms of how to fundraise. However, I am a strong believer that every challenge presents an opportunity and I love a challenge, especially when it is for such a fantastic cause. This pandemic is a great reminder of the importance of togetherness, helping others, being kind and I want to do absolutely everything I can for MS.
In previous fundraising, I was able to generate money through selling clothes, footwear, food, and drink primarily to my colleagues at work. This not only helped clear out my wardrobe but also helped me test and hone my baking skills. Lockdown means I am now hoarding a lot more stuff and eating all the sweet treats myself, but I am sure it is all good fuel for those long training runs…?
Kids and dogs are good and are certainly having the desired effect, but you just can’t beat the impact of alcohol. I like a drink and I like even more encouraging others to drink, particularly when I know those strings on the wallets and purses become that bit looser. As a salesperson, I must admit that I have won many a deal courtesy of wining, dining, and dancing (maybe less so with the latter, as my dancing is an acquired taste). So, it would be silly not to apply the same tried and tested approach to my charity fundraising. I am actually spending more time talking to customers about the charity than what I selling. I hope my boss doesn’t read this!
The event itself is just a sideshow, a reason to fundraise, but for me, this is all about this wonderful charity and making a difference. Just over halfway through another eventful year, I am determined to make 2021 live long in my memory for all the right reasons, which for me is all about supporting MS.
Inspired by Emily's story, you can make a donation to her fundraising page by visiting her JustGiving page here.