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 https://tinyurl.com/y9jlvech
Children & young people Balance Disorders (KidsHealth)
Link opens in new window https://tinyurl.com/y37t9cfu
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 https://tinyurl.com/y7lbxl6p

Ménière's Disease (Patient.info)
Link opens in new window https://tinyurl.com/ybq5xb24

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
Children & young people

Meningitis in children and young people (Meningitis Now)
Link opens in new window https://tinyurl.com/jd6ubqz

Symptoms Checker for Young Adults (Meningitis Research Foundation)
Link opens in new window https://tinyurl.com/y3mspxhq

Michael Rosen's Sad Book (Michael Rosen)
Chronicles Michael’s grief at the death of his son Eddie from meningitis at the age of 19
Link opens in new window www.michaelrosen.co.uk/portfolio/michael-rosens-sad-book

Online resources Meningitis Now free mobile app
Link opens in new window https://tinyurl.com/yaw5ku6k
Meningitis (NHS Choices)
Link opens in new window https://tinyurl.com/y77fpty7
Glass test for meningitis (Meningitis Now)
Link opens in new window https://tinyurl.com/zdt2ymo
News and events

Teenagers urged to take part in meningitis B vaccine trial (BBC, March 2018)
Link opens in new window www.bbc.co.uk/news/health-43554595

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 https://tinyurl.com/qh2b5me

"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://tinyurl.com/yctd33jc

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 https://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

Children & young people Zika Virus (KidsHealth)
Link opens in new window https://tinyurl.com/yyak7a5k
News and events Antonia Antonia's Story: A secret history
Friday, November 15th, 10.00-4.00 at The Brain Charity
Online resources

'Zika virus' (NHS Choices)
Link opens in new window https://tinyurl.com/hzvrcjp

'Zika virus infection' (The Encephalis Society)
Link opens in new window www.encephalitis.info/zika-virus

Our resources The library at the Brain Charity has a range of resources on disability related issues.

Name Migraine
Related to/Also known as  See also Cluster Headaches
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.

• The British Deaf Association has information in BSL about Migraine.

see also Cluster Headaches

Types  
Useful national contacts

The Migraine Trust (Migraine Action has merged with 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

Children & young people

Young people with migraine (Migraine Trust)
Link opens in new window https://tinyurl.com/yyvx2kn4


Advice for 7 to 12 year olds (Migraine Trust)
Link opens in new window https://tinyurl.com/y6ox598l


Guide for parents and carers (Migraine Trust)
Link opens in new window https://tinyurl.com/zmhzd96


Migraine in children and adolescents (U.K. National Migraine Centre)
Link opens in new window https://tinyurl.com/yyvaxkml

Online resources

Migraine (NHS)
Link opens in new window www.nhs.uk/conditions/migraine


Migraine (Brain & Spine Foundation)
Link opens in new window https://tinyurl.com/yyrg5rqb

Migraine Information Page (U.S. National Institute for Neurological Disorders and Stroke)
Link opens in new window https://tinyurl.com/y6f9y2jt

Acupuncture for preventing migraine attacks (Cochrane Evidence)
Link opens in new window https://tinyurl.com/ydxsos

Hemiplegic Migraine (Orofacial Pain website)
Link opens in new window https://tinyurl.com/yxhowvoh
News and Events  
Our resources Supporting young migraineurs

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 Action's info pack "Supporting young migraineurs".

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.

• The British Deaf Association has information in BSL about Motor Neurone Disease.

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 (MNDA)
Link opens in new window www.mndassociation.org
Helpline: 08457 626262 (local rate)
Find your local branch
Link opens in new window https://tinyurl.com/pxzujdo
• The Liverpool MND Support Group meets at The Brain Charity
Children & young people 

Children and young people (MNDA)
Info if you are aged up to 18 and you know someone with Motor Neurone Disease.
There is also information for parents and guardians
Link opens in new window https://tinyurl.com/y3p2reek

Online resources

Motor neurone disease (NHS Choices)
Link opens in new window https://tinyurl.com/ptmc38p


Motor neurone disease (Brain & Spine Foundation)
Link opens in new window https://tinyurl.com/c4jpfbn


Motor neurone disease (Brain Research UK)
Link opens in new window https://tinyurl.com/ybodkg52

 

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

Our resources When Someone Close has MND: A workbook for children aged 4 to 10

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

This includes a copy of the MNDA's booklet 'When Someone Close has MND: A workbook for children aged 4 to 10'.

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.

• The British Deaf Association has information in BSL about Multiple Sclerosis.

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 https://tinyurl.com/y8ksdy2j

MS Legal Line – 0207 791 9800 option 2. This goes through to Disability Law Service who they work with. They will help advise/support with tribunals. Also help with any employment legal issues.


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, including the Neuro Therapy Centre in Cheshire.
Link opens in new window www.msntc.org.uk and
Link opens in new window www.neurotherapycentre.org


CSF Leak Association
Charity working to raise the profile and support understanding of cerebrospinal fluid (CSF) leaks, and provides support to sufferers and carers.
Link opens in new window www.csfleak.info

Children & young people Young people and MS (MS Trust)
Link opens in new window www.mstrust.org.uk/life-ms/young-people-and-ms
Kids' guide to MS (MS Trust)
For 6-10 year olds who have a mum or dad with MS 
Link opens in new window https://tinyurl.com/y4phonlv
Multiple sclerosis (Great Ormond Street Hospital)
Link opens in new window https://tinyurl.com/y228ndj6
Online resources MS Trust: Newly diagnosed with Multiple Sclerosis
Link opens in new window https://tinyurl.com/ybow2j8r
Physiotherapy works: Multiple Sclerosis (MS) (Chartered Society of Physiotherapists factsheet)
Link opens in new window https://tinyurl.com/ya73x7n9
Applying for PIP (MS Society)
Link opens in new window https://tinyurl.com/y4ounms2

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


NHS Choices: Multiple Sclerosis
Link opens in new window https://tinyurl.com/ybdgn4uq


NHS Videos: Being diagnosed with multiple sclerosis
Link opens in new window https://tinyurl.com/y7tqpqbv


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


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
Trigeminal Neuralgia (NORD, U.S. National Organization for Rare Disorders)
Includes details of TN2, 'atypical' or 'symptomatic' Trigeminal Neuralgia
Link opens in new window https://tinyurl.com/y28z9njm

Tumefactive multiple sclerosis (U.S. Genetic and Rare Diseases Information Center)
Link opens in new window https://tinyurl.com/yyz2gxbl


Legal status of cannabis (MS Trust, October 2018)
Link opens in new window https://tinyurl.com/y5fmgm5g

News and events

Medical cannabis products available on prescription (BBC, November 2018)
Link opens in new window www.bbc.co.uk/news/health-46045487

'Game changer' treatment for Multiple Sclerosis patients (BBC, March 2018)
Link opens in new window https://tinyurl.com/y79vp8ya

Emerging areas of research: Stem cells (MS Society)
Link opens in new window https://tinyurl.com/y7fktbav

Our resources

Annie & Dan talk about M.S.: a D.V.D. for children under 10The 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 borrow Annie & Dan talk about MS : a DVD for children under 10

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 https://tinyurl.com/ycrcjbwa
The Trust's MSA Nurse Specialists support people affected by MSA across the UK and Ireland, providing responsibility loosely around four regions: https://tinyurl.com/yydh6kog
Children & young people Support for young people (Multiple System Atrophy Trust)
Although children and young people do not get MSA they will still be affected by any diagnosis of MSA within the family.
Link opens in new window https://tinyurl.com/y4rkrcpm
Online resources Multiple system atrophy (NHS Choices)
Link opens in new window https://tinyurl.com/ycm7kxyt
News and Events  
Our resources Carer's Guide: Looking after yourself and the person you care for

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 UK website to find details of all types of neuromuscular conditions.
Useful national contacts

Muscular Dystrophy UK
Helpline: 0800 652 6352
Link opens in new window www.muscular-dystrophy.org
Find support near you: Link opens in new window https://tinyurl.com/y9by2kou


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


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

Children & young people A guide for parents: children with muscle-wasting conditions (Muscular Dystrophy UK)
An introductory guide for families with a child newly diagnosed with muscular dystrophy or an associated neuromuscular condition
Link opens in new window https://tinyurl.com/y4sxydo3
Online resources Muscular dystrophy (NHS Choices)
Link opens in new window https://tinyurl.com/d8hshaz
News and events  
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.

Myotonic Dystrophy: The Facts This includes a copy of the book Myotonic Dystrophy: The Facts.

 

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.

• The British Deaf Association has information in BSL about M.E.

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

Children & young people

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

Children and Adolescents, The NICE Guideline on ME/CFS (M.E. Association)
Link opens in new window https://tinyurl.com/yxp36efz

Online resources

Chronic fatigue syndrome (NHS Choices)
Link opens in new window https://tinyurl.com/yblzrncb

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-3782206

'Testing online treatment for chronic fatigue syndrome (CFS/ME)' (AYME website, November 2016)
Link opens in new window http://tinyurl.com/jddsypo
Our resources

Living with M.E.: The Chronic/Post-Viral Fatigue Syndrome 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 Myaware [formerly Myasthenia Gravis Association]
Web: Link opens in new window www.myaware.org
Free helpline: 0800 919 922
Find your local support group:
Link opens in new window www.myaware.org/find-your-nearest-support-group
Children & young people Jimmy's Story (Myaware)
Link opens in new window www.myaware.org/blog/jimmys-story
Online resources Myasthenia gravis (NHS Choices)
Link opens in new window https://tinyurl.com/ybsujxfk

Myasthenia gravis (Muscular Dystrophy U.K.)
Link opens in new window https://tinyurl.com/y7l7ovp8


Ocular myasthenia (Eyecare Trust)
Link opens in new window https://tinyurl.com/yajoabxh

Our resources The Mysterious Illness: Myasthenia Gravis

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

This includes the book The Mysterious Illness - Myasthenia Gravis:  My long journey to diagnosis & the daily struggles since an almost fatal surgery, by Hazel Smart.