We are just starting to put together our plans for the coming year. One area we are keen to focus on is viral meningitis.
As many of you know, only too well, viral meningitis is often misunderstood by others. This is where we would really appreciate your ideas to help us plan our next steps:
What do you think we should be doing to raise awareness of viral meningitis, its impact and the support needs of those who have been affected?
Feel free to post your ideas and views on this forum. If you prefer can contact me directly at claired@meningitisnow.org
Thank you in advance.
Claire
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MNClaireD
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One of the greatest helps would be to ensure that EVERYONE diagnosed with vm and bm PLUS a family member(s) of the person diagnosed is at some point given a fact sheet with this web site address on. I came across this site by accident and I can honestly say that this was a huge turning point with my recovery in terms of the residual effects BM and VM leave behind.
Coming to this site would make the vm patient feel less isolated whilst providing practical recovery tips and emotional support. For family members this would provide them with answers to questions they may not feel able or comfortable with in asking the patient themselves. It also gives family members a valuable in-sight as to how the patient might be feeling in addition to educating them with the effects vm can so often leave behind.
So in essence .... Claire ... lobby your NHS contacts to ensure ALL meningitis sufferers and their families have a fact sheet with this site's details IN BIG RED LETTERS because it's a brilliant site that without doubt makes a MASSIVE difference in the whole recovery process.
I think if GPs and A&E consultants could be educated to understand that VM is not 'always a mild illness like flu which rarely leaves any after effects and the patient should be up and about in 2 weeks' which is what they are taught in training that would be good. A leaflet to all GPs or some other media to tell them that it very often leads to side effects and that VM is not like other types of the disease in terms of recovery and after effects. Even though I could barely walk my GP refused to sign me off sick after a month until I questioned him about how many people with VM he had ever treated and he had to admit he hadn't seen anyone before me. I work with GPs in a NHS Clinical Commissioning Group and it's frightening just how blase they are about VM. Hospitals need this information too. I was sent home the day after almost succumbing to VM to the point they were about to call my relatives in to say goodbye. I was rushed back in 3 days later under blues and twos, unconscious, with no discernible blood pressure and a heart rate of 24 and dropping. The reason I was discharged because 'it was only a blip which sometimes happens with flu like illnesses and he could stand'. Yes I could stand up with the help of two nurses. I had to learn to walk again and couldn't string two words together! I think the 'vocal about viral' campaign last year was brilliant and I was able to distribute materials to a lot of GP surgeries and get the message across through the weekly practice bulletin but as people's experiences on here show the medical profession still does not take VM seriously. They also by and large don't know what Mollaret's is and when finally diagnosed with it this was after a long period of doctors telling me it was just stress related and nothing to do with VM but I guess that's another more niche campaign given the rarity of Mollaret's.
I think food safety awareness should be raised - some food poisoning bacteria can cause meningitis / encaphilitis. We don't always know how we get ill and for me certainly that's one of the major worries...
Firstly this site was a lifesaver for me, please please inform all GP's in the inverse of how detrimental vm can be on people's lives...... & how long recovery can be..... Make 'a letter from my brain ' mandatory for all new sufferers of vm as I think it will take the pressure off recovery time & the frustration its causes so many............. as I hear this time & time again on this site.....
I caught vm aged 65 2 years ago. Still have problems with hearing even though I have 2 cochlear implants. Have got tinnitus and am permanently off balance and cannot walk without crutches or being in a wheelchair. Have lots of pain in joints and body and had a heart operation because vm gave me fluid around my heart which had to be removed. I wasnt diagnosed straight away the hospital sent me home even though I had lots of pain in my body. I was re admitted and then spent 13 weeks in intensive care unconscious. I often feel depressed as now its my family looking after me not me looking after my family I hate it.
I agree with the above posts. Doctors need to become aware of the after effects and slow recovery. Hospital doctors and GPs need to know about the need to rest and directing people to Meningitis Now sight as this was the only place I got information and insight into this very debilitating illness. I feel very lucky that I have a great GP who diagnosed VM and has listened carefully to my concerns. The hospital doctors would not confirm that I had VM because the lumbar puncture failed, the doctor had 5 attempt to find CSF and stuck the needle directly into my sciatic nerve. The samples were contaminated with blood and I refused to re do another. We were due to travel to New York for a family birthday and the hospital doctor said I would be fine to go. This was the worst thing I did as it resulted in making me very ill. On my return my GP diagnosed VM. Luckily my workplace have been fantastic and the occupational health service are aware of the latest advice on the after effects and recovery timescale. At 7 months post infection, I am still no where near able to return to my demanding job.
Informing GPs ,hospital doctors and workplaces is essential support for all.
I definitely think more doctors and neurologists need to learn that VM is like a brain injury and does have after effects. The neurologist whi released me after 9 days in hospital in April 2014 gave me note saying back to work in one week. That week at home is basically missing from my life. The night prior to supposedly returning to work, I drove to my family doctors office to tell him I was to return to work tomorrow. My concentration, memory, driving skills and sight were all so bad that I shld not have been on the road. I visited my family doctor every two weeks and finally entered a return to work program 4 1/2 hrs per day three times per week Aug 29th and back full time by Sept 15th. I am working 7 1/2 hrs per week and I still struggle with headache or pressure, some neck stiffness and exhaustion. I was in bed last night at 8:30 pm until 6 am. Sometimes i need that amount of sleep to offset the headaches. My insurance company at work denied my long term disability claim as they based my claim on the fact that their medical book suggests 1 to 45 days after VM a person shld be back to work. I am so grateful to my family doctor for undetstanding VM. I now have to struggle with getting ny neurologist to help me appeal the insurance companies decision and it appears he knows very little about the after effects of VM. I still am struggling with working full time. So yes there is much to be done and obviously in other countries. UK seems to be the only country with any resources. Thank you UK.
Thank you so much for all your valuable contributions. The more we have the better informed we will be so do keep your thoughts and ideas on this coming in.
I have just been reading the information supplied by several sites: NHS, Meningitis R see arch Foundation and others. They all state that most people recover from viral meningitis in a time scale of 1to 4 weeks. This matches what most of us who were admitted to hospital were told and yet 7 months later I am no better than I was at the start and looking at the postings there are many of us still suffering a long time after.
Dr Sara Jarvis wrote a paper for meningitis awareness week which stated the findings of Meningitis Now and this was a relieving read.
This suggests to me that this information needs to change and further supports our pleas to raise this awareness within the medical community.
Apologies for the typing errors...my iPad won't let me edit. Mind you my spelling has become worse since having meningitis!
I was told I would recover from V Meningoencephalitis at home within 7 days. Its into the third month. There is no guidance- partially because the general doctors do not have enough expertise. For me stumbling though the web, while trying to understand my new brain after V ME, I slowly discovered its a MUST to be proactive. For me: Neuropsychology (#1!!) Neurology, Psychology/Counselor, Infectious Disease, Nutritionist, Chiropractor, and Natural supplements and homeopathic from a very good source are vital!! My greatest struggle other than the side effects would be trying to apply for disability!! Between getting enough substantial documentation from doctors, getting applications, and help from lawyer, trying to organize all my medical papers...it is so insanely overwhelming! ESPECIALLY while trying to understand how my brain works now after the illness. It's a long road, and yes take the good days, and push through the hard days. Get family or lovers to a counselor too, its hard dealing with the pressure financially, on top of short temper, mood swings, and all that goes along with the acquired brain injury from V ME. Neuropsychology assessment was the GOLDEN KEY to helping me know my symptoms are from the brain injury, and its normal, yes normal! It helped my general doctor understand I am not just depressed, but healing, and that it is very real! Even my moments of visual or audio hallucinations- are not a sign I have indeed lost my mind, but instead is showing I need more time to rest and relax. The assessment will also help track progress- everything is such a fog its easy to lose track or sense of time!
Yes I would add to many others about lobbying the medical profession with regards to after care and advice. I was one of the many who were told that I would be better in 3 weeks, and I am also pretty much as tired and unwell as I was when I was discharged from hospital (end of July). I was not given a follow up and have had to continually chase a Neurology referral.
The Meningitis has also had other impacts on my body - tests have shown my thyroid and adrenal hormones are all way off and I believe VM was the trigger as I was fit and healthy with normal test results prior to VM. So I would encourage others to have checkups in the aftermath with full blood tests etc etc.
The one thing I have gained the most is this forum and being able to ask others about their experiences and timelines for recovery. Fact sheets can be helpful but obviously very impersonal. I think promotion of this forum and encouraging others who have experienced VM to help others here would be great as it really is a life saver when we need some encouragement.
I also find timelines and personal advice helpful - particularly when it comes to people sharing what has worked for them, such as supplements, alternative therapies, hearing those things really gives hope and helps me feel like I can try a few things myself.
Hope I’m not out of time. I’ve been focusing on getting back to paid work, and handling the insurers’ medical book nonsense as Littledove notes. As Jonathan intimates for Mollaret’s, one step at a time…
Lots of great advice and thoughts above, all of which I share. My own extra thoughts are, as with any misconception, one should approach it from a number of angles to find the root cause, and branch from there.
I believe many of us feel that the key failings are born of ignorance, and I would focus on no more than three things to start with, consolidating and regrouping for the following year with the proven feedback. My own approach (that I've used with family and friends) may have some merit in the round – education, representation and experience – targeting, if one accepts the problem, how to reach out, where to reach to, and in what manner.
Education – We’re all familiar with the medical profession’s ignorance. Easily understood I believe as this is one condition of a multitude a generalist needs a handle on, and there are only 24 hours in a day (though junior doctors don’t have that luxury). But there is also education of patients and families too. It works both ways, and let’s face it, till you get VM, we’re as/more ignorant than the medics so need to come together.
My time in research medicine meant I shared much time with and worked alongside medics, and the volume of work is astronomical, during and after training. I’d first analyse who do you reach first – those at medical school, those in practice, or those teaching practice? Ideally, all three, but with limited resources and time, the trust may need to be targeted. Medics themselves will almost certainly also have a view and I’d garner that as part of the plan, including when they’re most receptive (e.g. university, conferences, during vocational training?). Also, which branches do you focus on? We’ve mostly seen neurologists after GPs and hospital doctors, so for the specialists, I’d start there to see what they say and identify when the info gap-crack started and follow it back. Happy to share more thoughts on this front if you wish 1-2-1 as the forum isn’t the best medium.
For patients, a little info can go a long way. When I had a serious head injury many years ago, I left hospital with a piece of A5 which set out what condition I had (concussion in essence), the recognisable symptoms, prognosis in outline, what to expect, and what to do if alarm bells rang. A medically sanctioned form of this nature for issue along with the release papers from hospitals could go a long way for oneself, and friends and family. It could also act as a continual reminder to medics of the condition and all the above, provide links to this forum and the trust. As siobahn says, this is brain injury territory and there are clear parallels, so rather than start afresh, we can learn from other tried and tested techniques. Without that note (bearing memory issues in mind), it’s all guess work/re-inventing the wheel and each individual finding their way here by chance/effort. We can short-cut that, and produce educational collateral to boot!
Representation – As a collective we have many shared experiences, but nowhere to go with them. By its nature, however essential and cathartic a forum is, if you’re not in it, the world is still silent, to you. And how do you get there? The above note may be helpful and the trust is a child(ren) of those who’ve suffered the darkest side of meningitis more generally.
Many charities look to a champion to fly their cause’s flag and to act as the first public mnemonic to the condition. I apologise profusely if the trust has such a champion, though my ignorance would highlight it’s not well publicised. Is there anyone of note willing to champion our cause? ( Posh Spice is the only one I know of, though ‘Who Do You Think You Are?’ rang the wrong kind of bells with my family ). I’d vote for Jonathan but he may not have time! Seriously though, any household name out there kind enough to help us? Kate Middleton has done wonders for hyperemesis gravidarum...
Experience – As with the above, there are many strands here to. We have ourselves (see above for the forum ‘in’ or ‘out’ thoughts, though education, and representation, can help there). Medics (there are some out there with real understanding and thank the Lord I and others have found them, the hard way), and the trust. There’s no true shortage of it in various quarters, and pulling it altogether would be great. What then? A true representative can fly that info flag wherever they go, and share, share, share. While our experiences are anecdotal (in the sense of patient-based untested clinical data), they’re the bedrock of the condition’s knowledge, and we’re happy to feedback. We just need a wider public forum, with a figure head IMHO.
That said, we need to look at ourselves too. The first place I went for advice was the trust's website, and then this forum. The first thing I saw on the trust’s website, under What is Meninigitis? Types and Causes was “Viral meningitis is usually a mild disease, but it can make people very unwell [the quote is still there].” No Sherlock! Well, that took the wind out of my sails, which, given the VM truck which has just crashed into me, did kind of make me feel weak and a ‘whinger’. I then spoke to someone at the trust (name intentionally not given, who had helped my family greatly after the tragic loss of my cousin to BM) who said, don’t worry, you’ll be fine with a few weeks of rest. Very compassionately I should say, but the message was clear (at least it seemed to be)...we’ve another bigger fish to fry. And in many ways that's right. But it never feels great to be the poorer cousin.
Please note that I’m forever indebted to the trust for all the help I’ve received, and so much has changed in the last 3 years. I’m just feeding back what happened, and how I felt (alone). I then found this site and read Jonathan’s ‘angry dad’ post which he kindly reminded me of recently. That hit home, and has stayed with me since (though I needed the memory jogging a bit). Odd that a personal message was the thing that made sense given those two entry points to the condition.
I guess what I'm espousing is, though Oscar Wilde said "The only thing to do with good advice is to pass it on. It is never of any use to oneself." The reality is different, and charity ('able education) begins at home. Let’s show the world what we know as we know best, and how we feel first and foremost, and then we’ll conquer!
Hope this helps, and a Merry Christmas to All. If we’re reading this, we’re still in the game right, and I'm thankful for that. Let’s make 2015 our year, without ever forgetting our BM cousins. The truck changes its registration plate for each of us, but it’s still the same darn truck!
Thank you very much for your very comprehensive thoughts on raising awareness of viral meningitis. All contributions to this thread will be passed on and taken into account in the work we do moving forward. As you have said there is much education to do as viral meningitis is often misunderstood.
I am sorry that your initial experience with us, following viral meningitis, was not helpful to you. Listening and learning from those who have experienced viral meningitis is vital for us as an organisation and we too are learning all the time. This is one reason why we want to raise awareness of viral meningitis and understand the true impact it can have.
We currently have a number of celebrity ambassadors, some who have suffered from viral meningitis themselves, who help us, and we are always looking out for more. You can see who our current ambassadors are here: meningitisnow.org/about-us/...
Thank you again and I do hope everyone has a Merry Christmas,
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). I’d vote for Jonathan but he may not have time! Seriously though, any household name out there kind enough to help us? Kate Middleton has done wonders for hyperemesis gravidarum...
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