Meningitis is defeatable, says MRF

Experts from around the world gather at World Health Organisation meeting during Meningitis Awareness Week to work on the first-ever plan to defeat the disease

This week, a three day meeting in central London has seen health experts from around the world coming together to define the activities that need to happen to defeat meningitis by 2030.

Meningitis Research Foundation (MRF) together with various meningitis constituencies have driven the call for a global plan to defeat meningitis. As part of the global response, the World Health Organization (WHO) has led a broad-based consultative process which includes this meeting at the Wellcome Trust supported by the Department for International Development (DFID) with representatives from governments, global health organisations, public health bodies, academia, private sector and civil society including the Centers for Disease Control and Prevention, the London School of Hygiene and Tropical Medicine, Médicins Sans Frontières, PATH and Unicef.

Vinny Smith, CEO of MRF said:  “Progress in defeating meningitis lags behind that of other vaccine preventable diseases. We need a coordinated effort to save lives and together we can defeat meningitis by 2030. We’ll be listening to health experts, people affected, private and public voices from all over the world about what needs to be done to end this devastating disease and its effects on people, families and communities.”

“It’s a little known fact that deaths from meningitis and sepsis in children under the age of five were estimated to be as high as deaths due to malaria.  It will take a global effort to stop this disease, but with 5 million people affected each year, often with devastating consequences such as limb loss, deafness, brain damage and early death, we must take urgent action.”

“By the end of this important three-day meeting, we will have agreed the priority global actions to achieve our goal.  Preventing new cases, ending epidemics and ensuring that people and families get the support they need means that meningitis will be defeated.”

Meningitis remains a universal public health challenge in countries around the world - cases and outbreaks are highly dreaded. The global number of deaths due to meningitis was estimated at around 380,000 annually.

Mike Davies, 60, from Brighton is helping to raise awareness about meningitis and describes how the disease affected him. Mike became ill with meningococcal meningitis and septicaemia at Christmas 2017. He was wrapping presents on the afternoon of Christmas Eve when he began to get colder and colder, getting into bed didn’t help. Mike says: “I looked like a ghost with blue lips.  My family insisted on the trip to The Royal Sussex County hospital where the fantastic NHS clicked in.  On Christmas Day my family were told I was unlikely to survive, but after I spent 10 weeks in Intensive Care I pulled through.”

“During this time I began to look forward (yes, looking forward) to having my hands and feet amputated. Legs went one week - hands the next, and the hands took seven hours alone.  Then I had weeks of recovery and wound healing. For a long time I had to have my blood detoxified three times a week at dialysis in hospital as my kidneys were so badly affected, but I could have died. One day I flatly refused to get out of bed to attend hospital for the necessary and life-saving dialysis I was having three days a week. The greatest thing to happen to me then was to be offered counselling through the hospital renal department.  In my darkest moments I would think, how would I ever shower, toilet, eat breakfast, drink tea, go shopping, walk places, catch a bus? But overcoming each of these challenges was another little victory.”

“I feel lucky to have had my meningitis journey and support in a country where good aftercare is available.  I learned to accept my situation and be at peace with it.  I feel in quite a positive place in my mind about the challenges I still have to overcome. Support from other people has been key. I am a lucky man.  There needs to be better recognition of the after effects, that’s why I’m helping to raise awareness of the serious health outcomes, and how good aftercare can help.”

A woman from Cheshunt, near London is also calling for greater awareness about meningitis after having the disease twice.  Devkee Trivedi is in recovery, having been left with health conditions as a result of the disease.  

Initially, in 2014 Devkee had cold and flu like symptoms that got worse very quickly.  She collapsed, and woke up in hospital, and was diagnosed with meningitis.  She felt lucky to get through it, but then she slowly realised the consequences on her balance, hearing, tiredness and tinnitus.  She slowly recovered and started running again.

In 2016 whilst doing Park Run Devkee was bitten by a tick and contracted Lyme disease, and then she developed meningitis for the second time.  From the second episode of meningitis she lost all hearing in her right ear, nerve and joint problems, chronic daily migraines, and vertigo.  After many months, Devkee is slowly recovering but some of the effects are permanent.  

Devkee said: “Meningitis is scary and many people don’t realise the impact of this disease can have. After almost 3 years, I am still struggling with recovery and still have a long road ahead. It’s lonely when you are in recovering from meningitis and MRF’s support team been a huge part of my recovery.”

“I’m training to run the New York Marathon, I want to fundraise for MRF as they have really helped me and have reminded me not to give up even when recovery has been incredibly tough.  I really want to help raise awareness of this cruel disease and remind people to never give up on their dreams.”

Research shows that progress in defeating meningitis lags behind other vaccine preventable diseases. Between 1990 and 2017, child meningitis deaths fell by just 53%, while deaths from other vaccine preventable diseases dropped by 70-90%.