Back in January we highlighted the survey which aims to find the top 10 unanswered questions in MS research. The partnership between the MS Society, the UK MS Specialist Nurses Association (UKMSSNA), the Association of British Neurologists, and MS Therapy Centres such as ours has now entered the next phase, narrowing down the survey responses to 67 research questions.
We now need your help to develop a shortlist of these questions for consideration at a final workshop on 12 July. By voting for your top priorities, you will be helping the steering group to establish a shortlist (20–30) of the most important questions for MS research. Workshop participants will work from this shortlist to find the final top 10 important questions in MS research.
Who Can Vote?
- People with MS
- Family members and carers of someone with MS
- Healthcare professionals who work with people with MS
How Do I Vote?
- You can vote online via the Multiple Sclerosis Priority Setting Partnership SurveyMonkey page
- Alternatively, you can request a hard copy of the survey by contacting Mital Patel on firstname.lastname@example.org or by calling 020 8438 0708.
The survey will close on 24 May 2013.
Glossary of Terms Used in the Survey
The survey uses some medical/technical terminology, some of which may be unfamiliar to you. The following explanations are taken from the MS Society’s survey guidance document.
- Bio-markers are biological measures that can be detected in the body (usually the blood or urine) that can diagnose and/or chart the course of a condition. They can also predict how severe a condition might get, and measure the effectiveness of treatments in clinical trials.
- Chronic cerebrospinal venous insufficiency (CCSVI) is a syndrome characterised by poor removal of oxygen-depleted blood from the central nervous system. This is thought to be caused by a constriction of blood vessels in the brain and neck which affects brain blood flow and drainage.
- Cerebellar ataxia is an umbrella term for disorders of the nervous system which cause unsteadiness and a lack of co-ordination.
- Epstein Barr virus (EBV) is a common virus that infects around 95 per cent of the population in the UK. Most people have no symptoms but in some severe cases infection can result in glandular fever. Research has shown an association between EBV and MS, but more research is needed in order to find out if EBV has any role in causing or contributing to MS.
- Functional electrical stimulation (FES) is a non-invasive device that can help some people with MS to walk by using electrical current to stimulate nerves and move parts of the body.
- Low Dose Naltrexone (LDN), Naltrexone is licensed in the UK to help treat people who are addicted to opiates, such as heroin. Advocates of its use in MS suggest it should be given at a much lower dose than usual (Lower Dose Naltrexone — LDN) for the treatment of MS (10–50 times lower dose).
- Progressive multifocal leukoencephalopathy (PML) is caused by a viral infection in the brain. It can cause severe neurological symptoms, which may at first be mistaken for MS relapses, but the symptoms rapidly worsen and may lead to death or disability. Analysis of the number of cases of PML suggests that the overall risk is about 1 in every 500 people treated with Tysabri.
- Vertigo is a type of dizziness. It’s the sensation that you, or the environment around you, is moving.