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Multiple Sclerosis – Why a hug might be the last thing you need

Multiple Sclerosis is an autoimmune disease, and another prime example of an invisible illness. Physically, an MS patient may look well for most of the time, and might be able to go about normal daily activities like work and family life. However, what’s happening below the surface tells a very different story. The immune system attacks the myelin sheathing which protects the body’s nervous system, leaving the nerve exposed. To visualise this, you might like to think of an electrical wire with its casing worn away. Like that wire, the exposed nerve becomes dangerous and unpredictable.

The symptoms of Multiple Sclerosis are as varied as the functions of our nerves. Nerves are our bodies’ pain receptors, so damage to the nerves can result in chronic physical pain – one of the symptoms most strongly associated with MS. However, the nerves are also responsible for transmitting messages from the body to the brain; they help us to regulate our body temperature, and to process sensations like hunger, thirst and pain. They even play a role in balance, memory formation and regulating sleep patterns. So the damage that MS wreaks on the nerves can result in fatigue, ‘brain-fog’ or confusion, impaired vision and even slurred speech.

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This wide range of symptoms means that no two MS sufferers are alike. One symptom which many MS patients do recognise is affectionately known as an ‘MS hug’. Nerve damage can cause muscle spasms in the intercostal muscles between the ribs, causing an uncomfortable sensation around the chest, waist or neck – all the areas where you might expect to feel a comforting hug! However, even though many MS patients recognise the ‘hug’ as one of their symptoms, the way this feels is not the same for every patient. Some feel only tightness, some report tingling, and others may find that they’re in considerable pain. For some patients, the feeling is short-lived, for others it might last hours.

As you’d imagine, both diagnosing and treating an illness which is so adept at changing its shape is a challenge – so for the 100,000 MS sufferers living in the UK, the fact that we have started to study a promising new treatment is encouraging! However, it takes a raft of tests to learn everything we need to know about a drug before it is ready for the pharmacy shelves.

Last year, Covance set out to compare the MS drug against a placebo to ensure that it was actually having an effect on the body (the very least you’d expect from your medicine!). This year, they are starting to test different formulations to find out things like ‘Will this work best as a pill or an injection? Does a sugar-coated pill work better than a plastic capsule?’. There’s much more we will need to learn before a Doctor can prescribe this medication – should it be taken on a full or an empty stomach? Does it react with any other medications which an MS patient might be taking? And perhaps most importantly: Is this medication suitable for everyone?

The only way for us to answer this question is to test on a wide range of different people during the clinical trials process. So if you look at their website, you’ll see studies for a wide range of different types; they test on healthy people and on patients; they test on over 18s and over 65s; they test on men and women; and you’ll often see studies where we specifically need women who are post-menopausal or surgically sterile.

In 2014, one of Covance’s most major studies in Leeds was to test a potential new treatment for Multiple Sclerosis. However, one study, however major, is nowhere near enough to get a new treatment onto the market: in 2015, their studies into MS treatments continue, and there are ways that everyone can get involved.

If you’re interested in earning money and helping patients with chronic conditions like MS, they will have a study for you – you can take a look at all their ongoing studies here

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Linda Parkinson-Hardman

Transformational coach and founder of the Hysterectomy Association. Professionally I'm an information scientist who specialises in the adoption and engagement of digital technologies. I am a writer and author of nine books to date, and I've edited a further seven; phew what a lot for a Thursday afternoon :-)

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