Name Ménière's Disease (MD)
Related to/Also known as Idiopathic Endolymphatic Hydrops
Symptoms of Ménière's Disease Ménière's Disease (MD) is a disorder of the inner ear, characterised by vertigo, tinnitus and hearing loss. Ménière's Disease is a long term, progressive disease which damages both the balance and hearing parts of the inner ear.
Types  
Useful national contacts Ménière's Society
Link opens in new window www.menieres.org.uk
Helpline: 0845 120 2975
Find your local support group:
Link opens in new window www.menieres.org.uk/information-and-support/find-support-near-you
News and events Volunteers wanted for Ménière's Disease Clinical Research Study (April 2017)

Link opens in new window www.menieresstudy.uk

Online resources

Ménière's Disease (NHS Choices website)
Link opens in new window www.nhs.uk/conditions/menieres-disease/pages/introduction.aspx

Ménière's Disease (Patient.info)
Link opens in new window http://patient.info/health/menieres-disease-leaflet

Our resources

The library at The Brain Charity has a range of resources on Ménière's Disease and on a wide range of disability-related issues.

This includes a copy of the Brain & Spine Foundation's booklet "Dizziness And Balance Problems: A guide for patients and carers".

Name Meningitis
Related to/Also known as Meningococcal disease

Septicaemia

Symptoms of Meningitis

Meningitis is an inflammation of the lining (meninges) which covers the spinal cord and the brain.

Common symptoms are usually high fever, headache, stiff neck and a red/purple rash which remains when pressed and looked at through a glass tumbler.

Types

Meningitis is usually caused by a bacterial or viral infection, or is occasionally due to a fungal infection.

Viral meningitis can be very unpleasant, but is generally less severe and is usually without long-term effects.

Bacterial meningitis is more serious and, although some do make a full recovery, others may be left with problems such as long-term brain damage, hearing loss and epilepsy.

The meningococcal bacterium that causes meningitis can also cause septicaemia (blood poisoning). If a patient has some symptoms of both meningococcal meningitis and meningococcal septicaemia, then together these two forms of the disease are known as meningococcal disease.

Useful national contacts Meningitis Trust and Meningitis Research Foundation have merged to form
Meningitis Now
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
Link opens in new window www.meningitisnow.org
Nurse-staffed Freefone Helpline 0808 80 10 388
Online resources Meningitis Now free mobile app
Link opens in new windowwww.meningitisnow.org/meningitis-explained/signs-and-symptoms/download-our-mobile-app

Meningitis (NHS Choices)
Link opens in new window www.nhs.uk/conditions/meningitis/pages/introduction.asp
News and events

Men ACWY vaccine (NHS Choices)
Young teenagers and 'fresher' students going to university for the first time are advised to have a vaccination to prevent meningitis W disease.
Link opens in new window www.nhs.uk/Conditions/vaccinations/Pages/men-acwy-vaccine.aspx

Liverpool research appeal to create a more effective vaccine for pneumococcal meningitis
Link opens in new window www.meningitisnow.org/how-we-help/campaigns/liverpool-research-appeal

"New meningitis vaccine for students and children" (BBC Wales, August 2015)
Link opens in new window www.bbc.co.uk/news/uk-wales-33734323

Our resources

The library at The Brain Charity has a range of resources on Meningitis and on a wide range of disability-related issues.

This includes a copy of the Brain & Spine Foundation's booklet "Meningitis: A fact sheet for patients and carers".

Name  Microcephaly
Related to/Also known as  Microcephaly is a symptom of many different conditions.
Symptoms

"Microcephaly is a rare neurological condition in which a person's head is significantly smaller than expected based on standardized charts."

Source: U.S. National Institutes of Health, Genetic and Rare Diseases Information Center
Link opens in new window https://rarediseases.info.nih.gov/gard/3603/microcephaly/resources/1

Types
  • Primary: the brain fails to grow to the correct size during pregnancy
  • Secondary: the brain is the expected size at birth but subsequently fails to grow normally
Source: Current Opinion in Neurobiology 14(1) February 2004
Useful National contacts

Cerebra (charity for children with neurological conditions)
Link opens in new window http://w3.cerebra.org.uk
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
Phone: 01267 244200
Post: 2nd Floor Offices, The Lyric Buildings, King Street, Carmarthen, SA31 1BD

Online resources 'Zika virus: your questions answered' (NHS Choices)
Link opens in new window www.nhs.uk/news/2016/01January/Pages/Zika-virus-your-questions-answered.aspx
Our resources The library at the Brain Charity has a range of resources on disability related issues.

Name Migraine
Related to/Also known as  
Symptoms of Migraine

Migraine is a debilitating neurological condition, which often strikes without warning. It affects different people in different ways, but common symptoms include an intense, throbbing headache (usually on one-side of the head), sensitivity to light and noise, nausea or vomiting. Visual disturbances, or aura, are also common.

see also Cluster Headaches

Types  
Useful national contacts Migraine Action
Tel. 0116 275 8317
Link opens in new window www.migraine.org.uk
Find your local support group:
Link opens in new window www.migraine.org.uk/professionals/migraine-support-groups

The Migraine Trust
Tel: 020 7631 6970
Link opens in new window www.migrainetrust.org


National Migraine Centre
Tel. 020 7251 3322
Link opens in new window www.migraineclinic.org.uk

Online resources Cochrane Evidence: Acupuncture for preventing migraine attacks
Link opens in new window www.cochrane.org/CD001218/SYMPT_acupuncture-preventing-migraine-attacks
Migraine Action Adventure (for children and young people)
Tel: 0116 275 8317
Link opens in new window www.migraineadventure.org.uk
Migraine Action Explorers (for children and young people)
Link opens in new window www.migraineexplorers.org.uk

Migraine Action Network (for children and young people)
Link opens in new window www.migrainenetwork.org.uk


Migraine (British Deaf Association video with BSL and text)
Link opens in new window www.bda.org.uk/health-migraine
News and Events

Research Volunteers Needed (Migraine Trust, October 2015)
Link opens in new window www.migrainetrust.org/research-volunteers

Our resources

Migraine : Understanding and coping with Migraine by Ann Rush The library at The Brain Charity has a range of resources on Migraine and on a wide range of disability-related issues.

Visit our library to read Migraine : Understanding and coping with Migraine by Ann Rush. Or have a look in your local library for this book.

Name Motor Neurone Disease (MND)
Related to/Also known as Motor Neuron Disease
Amyotrophic Lateral Sclerosis (ALS)
Symptoms of Motor Neurone Disease
Motor Neurone Disease is an uncommon disease, which causes a progressive degeneration of the motor system (the nerve cells that controls the muscles). It is a slowly progressive disease, whose common systems include muscle wasting/weakness, muscle cramps and difficulty with swallowing and with speech.
Types Progressive Muscular Atrophy (PMA)

Progressive Bulbar Palsy
Primary Lateral Sclerosis
Familial MND (Familial ALS/FALS)
Juvenile ALS (MND)

Useful national contacts Motor Neurone Disease Assocation
Link opens in new window www.mndassociation.org
Helpline: 08457 626262 (local rate)
Find your local branch
Link opens in new window www.mndassociation.org/getting-support/local-support/branches/
Online resources

How can I check if my treatment and care are appropriate? (MND Association and NICE guidelines)
Link opens in new window www.mndassociation.org/life-with-mnd/treatment-and-care/how-can-i-check-if-my-treatment-and-care-are-appropriate

Motor neurone disease (NHS Choices)
Link opens in new window www.nhs.uk/conditions/motor-neurone-disease/pages/introduction.aspx


Motor neurone disease (Brain & Spine Foundation)
Link opens in new window www.brainandspine.org.uk/motor-neurone-disease


Motor neurone disease (M.N.D.) (Brain Research Trust)
Link opens in new window www.brt.org.uk/motor-neurone-disease-mnd


M.N.D. = Motor Neurone Disease (British Deaf Association video with BSL and text)
www.bda.org.uk/health-mnd-motor-neurone-disease

News and events

The 100,000 Genomes Project is looking for people with Motor Neurone Disease for research into their DNA and genes
Link opens in new window www.genomicsengland.co.uk/taking-part

Trajectories of Outcome in Neurological Conditions (TONiC) study seeks volunteers
Link opens in new window https://tonic.thewaltoncentre.nhs.uk


Motor Neurone Disease - Legacy Research
Olly is a PhD Researcher at Edge Hill University in Ormskirk, Lancashire, and has a specific research interest in young people who help care for family members who have MND, and also those young people who are bereaved due to the disease.
Link opens in new window www.facebook.com/mndlegacy

Our resources

The library at The Brain Charity has a range of resources on Motor Neurone Disease and on a wide range of disability-related issues.

Name Multiple Sclerosis (MS)
Related to/Also known as  
Symptoms of MS
Multiple Sclerosis is the most common disabling neurological disorder affecting young adults. MS occurs as the result of damage to myelin - the protective sheath surrounding nerve fibres of the central nervous system. This damage interferes with messages between the brain and other parts of the body.
Types
  • Relapsing remitting MS
  • Secondary progressive MS
  • Primary progressive MS
Useful national contacts MS Society
Helpline: 0808 800 8000
Link opens in new window www.mssociety.org.uk
Find your local support group:
Link opens in new window www.mssociety.org.uk/near-me

Multiple Sclerosis Trust
Tel. 01462 476700
Freephone information service 0800 032 3839
Link opens in new window www.mstrust.org.uk


MS-UK
Tel. 0800 783 0518
Link opens in new window www.ms-uk.org
You can call the MS-UK Helpline for free on 0800 783 0518 during weekdays, between 9 a.m. and 5 p.m.


Multiple Sclerosis National Therapy Centres
There are more than 50 centres in Britain and Ireland
Link opens in new window www.msntc.org.uk
Online resources MS Trust: Newly diagnosed with Multiple Sclerosis
Link opens in new window www.mstrust.org.uk/information/newly-diagnosed/default.jsp
Physiotherapy works: Multiple Sclerosis (MS) (Chartered Society of Physiotherapists factsheet)
Link opens in new window www.csp.org.uk/publications/physiotherapy-works-multiple-sclerosis-ms

MS-UK Live Webchat
Link opens in new window www.ms-uk.org/livewebchat


NHS Choices
Link opens in new window www.nhs.uk/conditions/multiple-sclerosis/pages/introduction.aspx


NHS Videos: Being diagnosed with multiple sclerosis
Link opens in new window www.nhs.uk/video/pages/ms-society-being-diagnosed.aspx


M.S. = Multiple Sclerosis (British Deaf Association video with BSL and text)
Link opens in new window www.bda.org.uk/health-ms

BBC: What is multiple sclerosis?
Link opens in new window http://www.bbc.co.uk/newsbeat/18490516


MS-UK video 'We're here if you need us'
Link opens in new window www.youtube.com/watch?v=IWdXloSD8gs


MediKidz explain Multiple Sclerosis
Link opens in new window www.medikidz.com/gb-en/shop/brain-eyes-nerves/medikidz-explain-multiple-sclerosis


MS Research Treatment and Education charity
Link opens in new window www.ms-research.org.uk


MS Register
A ground-breaking study designed to increase our understanding of living with MS in the UK
Link opens in new window www.ukmsregister.org
News and events

The ‘My MS My Rights, My Choices’ project is a free and confidential support service for people living with and affected by MS in Wales. (MS Society Wales)
Link opens in new window www.mssociety.org.uk/my-ms-my-rights-my-choices

Emerging areas of research: Stem cells (MS Society)
Link opens in new window www.mssociety.org.uk/ms-research/emerging-areas/stem-cells

'Publication of ocrelizumab trials: hope for progressive MS' (MS Society, December 2016)
Link opens in new window www.mssociety.org.uk/ms-news/2016/12/publication-ocrelizumab-trials-hope-progressive-ms

MS treatment in England: is access still a lottery? (MS Society, October 2016)
Link opens in new window www.mssociety.org.uk/sites/default/files/MS%20treatment%20in%20England_0.pdf

 

'Reducing smoking following diagnosis could have a positive effect on the course of MS' (JAMA Neurology journal, October 2015)
Link opens in new window https://archneur.jamanetwork.com/article.aspx?articleid=2432189


Trajectories of Outcome in Neurological Conditions (TONiC) study seeks volunteers
Link opens in new window https://tonic.thewaltoncentre.nhs.uk


People with multiple sclerosis say the benefits system is harming their health
MS Society, September 2015
Link opens in new window tinyurl.com/ogmh3r4


.

"Time matters in multiple sclerosis" MS Society, September 2015 Link opens in new window
tinyurl.com/qzdz7wn

Our resources

Managing your Multiple Sclerosis The library at The Brain Charity has a range of resources on MS and on a wide range of disability-related issues.

Visit our library to read Managing your Multiple Sclerosis: Practical advice to help you manage your multiple sclerosis by Professor Ian Robinson and Dr Frank Clifford Rose, and you can watch our copy of the MS Society's DVD for children Annie & Dan talk about MS.
Or have a Link opens in new window look in your local library for Professor Robson's book.
Find this in a library at WorldCat.org

Name Multiple System Atrophy (MSA)
Related to/Also known as Shy-Drager Syndrome
Symptoms of MSA
MSA is caused by the degeneration of cells in certain areas of the brain, which control different body systems. This cell degeneration causes problems with movement, balance and automatic functions of the body, such as bladder control.
Types  
Useful national contacts Multiple System Atrophy Trust
Link opens in new window www.msatrust.org.uk
Tel: 0207 940 4666
Find your local support group:
Link opens in new window www.msatrust.org.uk/calendar/category/support-groups

MSA/PSP Nurse Specialists:
Tel. 0207 940 4666
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.


Scotland, Ireland and North England: Katie Rigg
Tel:  01434 381 932
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

News and Events  
Online resources Multiple system atrophy (NHS Choices)
Link opens in new window www.nhs.uk/Conditions/multiple-system-atrophy/Pages/Introduction.aspx
Our resources

The library at The Brain Charity has a range of resources on MSA and on a wide range of disability-related issues.

This includes a copy of the Multiple System Atrophy Trust's booklet "Carer's Guide: Looking after yourself and the person you care for".

Name Muscular Dystrophy
Related to/Also known as  
Symptoms of Muscular Dystrophy
The muscular dystrophies are a group of neuromuscular disorders. These conditions are characterised by the loss of muscle strength, as progressive muscle wasting or nerve deterioration occurs. Many, but not all, are inherited.
Types Please see the Muscular Dystrophy website to find details of all types of neuromuscular conditions.
Useful national contacts Muscular Dystrophy Campaign
Helpline: 0800 652 6352
Link opens in new window www.muscular-dystrophy.org
Find local support and services:
Link opens in new window http://hub.muscular-dystrophy.org/hub/near-you/

Myotonic Dystophy Support Group
Helpline: 0115 987 0080
Link opens in new window www.myotonicdystrophysupportgroup.org


Neuromuscular Centre
Tel: 01606 860911
Link opens in new window www.nmcentre.com

Online resources Muscular dystrophy (NHS Choices)
Link opens in new window www.nhs.uk/conditions/Muscular-dystrophy/Pages/Introduction.aspx
Our resources

The library at The Brain Charity has a range of resources on Muscular Dystrophy and on a wide range of disability-related issues.

This includes a copy of the Myotonic Dystrophy Support Group's booklet Facts for Patients, Family Members and Professionals.

Name Myalgic Encephalomyelitis (ME)
Related to/Also known as Chronic Fatigue Syndrome (CFS)

Post-Viral Fatigue Syndrome (PVFS)

Symptoms of M.E.
M.E. is a potentially chronic and disabling neurological disorder, which is characterised by persistent fatigue and muscle pain. Symptoms can include cognitive problems such as loss of memory and concentration, recurrent sore throat and enlarged neck glands, disturbed sleep patterns and persistent headaches.
Types  
Useful national contacts ACTION for M.E.
Telephone support: 0845 123 2314
Membership/general 0845 123 2380, 9am-5pm
Link opens in new window www.actionforme.org.uk
Find your local support group:
Link opens in new window www.actionforme.org.uk/find-local-services/

M.E. Association
Helpline: 0844 576 5326 (open every day 10am-12noon, 2-4pm, 7-9pm)
Link opens in new window www.meassociation.org.uk


Association of Young People with ME
(support and advice for young people aged from 5-26 and their families)
Hepline 0845 123 2389, 10am-2pm
Link opens in new window www.ayme.org.uk

Online resources

Chronic fatigue syndrome (NHS Choices)
Link opens in new window www.nhs.uk/conditions/chronic-fatigue-syndrome/pages/introduction.aspx

M.E. = Myalgic Encephalopathy (British Deaf Association video with BSL and text)
Link opens in new window www.bda.org.uk/health-me

News and events 'Landmark chronic fatigue trial could treat two-thirds' (BBC website, November 2016)
Link opens in new window www.bbc.co.uk/news/health-37822068
'Testing online treatment for chronic fatigue syndrome (CFS/ME)' (AYME website, November 2016)
Link opens in new window http://tinyurl.com/jddsypo
Our resources

The library at The Brain Charity has a range of resources on M.E. and on a wide range of disability-related issues.

Visit our library to read Living with M.E: The chronic/post-viral fatigue syndrome by Dr Charles Shepherd. Or have a Link opens in new window look in your local library for this book.
Find this in a library at WorldCat.org

Name Myasthenia Gravis
Related to/Also known as  
Symptoms of Myasthenia Gravis
Myasthenia Gravis is an autoimmune disease, which results in a breakdown in communication between nerve and muscle. This results in a loss of effectiveness of the muscle. The progression and severity of the disease vary widely. Some patients only ever develop eye muscle weakness - this is called ocular myasthenia. Others also have more widespread weakness - generalised myasthenia.
Types Ocular Myasthenia Gravis - confined to eye muscles

Generalised Myasthenia Gravis

Useful national contacts My Aware [formerly Myasthenia Gravis Association]
Web: Link opens in new window http://myaware.org
Free helpline: 0800 919 922
Find your local support group:
Link opens in new window https://myaware.org/support-groups
Online resources Myasthenia gravis (NHS Choices)
Link opens in new window www.nhs.uk/conditions/myasthenia-gravis/pages/introduction.aspx

Myasthenia gravis (Muscular Dystrophy U.K.)
Link opens in new window www.musculardystrophyuk.org/about-muscle-wasting-conditions/myasthenia-gravis/?gclid=CLLSu4btvsYCFeXHtAodw0kCtA


Ocular myasthenia (Eyecare Trust)
Link opens in new window http://eyecaretrust.org.uk/view.php?item_id=95

Our resources

The library at The Brain Charity has a range of resources on Myasthenia Gravis and on a wide range of disability-related issues.