Another Awareness Week – Meniere’s and Balance Disorders

The Meniere’s Society in the UK is the primary source of information for those afflicted by Balance disorders. Not only Meniere’s disease, but as can be seen from their webpage any disorder affecting the balance organ of the inner ear.

I’m not currently a member, but I did find the information they provided extremely useful when my problems with balance, vertigo, sensorineural deafness, and tinnitus became too difficult to manage successfully some 18 – 19 years ago. I can recommend their information, help and support, for any new sufferers of these balance disorders.

As with the HMSN awareness week/month. I have decided to make my own awareness avatar/internet poster…

Meniere's and Balance Awareness week poster

I almost forgot to add a few other links … well no actually I did forget, but now I’ve remembered. Ah… the ebb and flow of my cognitive function…

Meniere’s Disease (and other balance disease) forums in the UK.

Manage Meniere’s Forum  –  http://www.managemenieres.co.uk/

Meniere’s Disease UK –  http://www.mduk.org/

 

Social Network – MenieresWorld

Other info sites

VEDA – Vestibular Disorders Association

Tim Hain’s Dizziness and Balance website – http://www.dizziness-and-balance.com/disorders/index.html

Advertisements

7 thoughts on “Another Awareness Week – Meniere’s and Balance Disorders

  1. As a Meniere’s sufferer I find it appalling that there’s STILL such a distinct lack of awareness. You would think that by now our illness would have been promoted until it has global recognition.

    It’s ‘Awareness Week’ and I was almost unaware of that, it’s only the chatting on facebook that actually brought it to my attention. I think if the people at the forefront REALLY wish to promote awareness they could do far more than they already have. Having Googled for details I was led to a post from eight years ago.

    That’s simply not good enough as far as I am concerned.

    Before any readers assume that I just complain for the sake of it and am not willing to put my shoulder to the wheel, a couple of months ago I set up a social network for Meniere’s and related disorders http://www.menieresworld.com

    I’m going to use my site to take up the slack and promote awareness of Meniere’s Disease as much as I can.

    People such as yourself John shouldn’t HAVE TO make their own posters, logos et cetera. There should be a wealth of promotional stuff available, and I am hoping to build my site up by this time next year to such a level that promoting won’t be an issue.

    Just because we have an invisible illness, doesn’t mean we have to be completely unseen.

    • Hi Joe,

      I’m in the process of joining your SN Meniere’s world… then noticed your comment here, So I’m interleaving tasks here, hope it doesn’t get messy, not the best at multi-tasking especially when feeling scatterbrained.
      The Meniere’s society does have really good written and printed material. I’ve just received their awareness info pack, which is pretty good, just a shame I only knew about it half way through the week, there was no info on their website. It seems that it is this side of their charity that is in a pretty poor state. When I was first diagnosed 18 years ago, which was some 13 years after first permanent symptoms started, the only information was in the printed form, the WWW was in it’s infancy and online support groups were confined to mail-lists. The info I received from them was first rate, and I think that is still the same today, except they don’t seem to have kept up with changing technology. Their website presence is pretty poor, It has not changed much since it was first started, and it was fairly sparse then. With an up to date Content Management system, they should be able to make their site much more responsive to change and updates, news and views, discussion and more.
      In some ways it is surprising that they haven’t increased their internet presence, most other charities have done so to help reduce the cost of printed materials, whilst it’s still important to maintain a printed base, having the ability to distribute information electronically does help to reduce costs. It is much more likely to reach a larger audience.

      well I’ll swap tasks and get back to completing the registration for Menieresworld… see you there!

  2. Their website is where I have a problem, you’d think that a Charity that’s been running for 28 years would actually have more of a clue of how to raise awareness. The growth of the internet has been phenomenal, and you’d think that anyone with a few brain cells to rub together would realize that it’s one of the greatest tools for promotion ever created.

    So why haven’t they managed to get Meniere’s into a more public profile?

    I am also unhappy about them having membership fees so you can get more in-depth information in newsletters et cetera. That in my opinion should be given for free. My goal is to do exactly that, to collate and present every valid piece of Meniere’s info, and put it where it can be easily found by anyone at no cost to them.

    I believe the sparse content of the Meniere’s Society site is a way to lure you into paying fees.

    No charity should charge the suffering for information that may help them.

    I’m glad to see you have joined Menieresworld. If you would like a link put up to this blog I’d be only to happy to oblige.

    Joe.

    • Hi Joe,

      well I do think they are missing a trick by not having a more up-to-date responsive website. It would certainly bring in more members. Unfortunately, to comply with the rules for running a health information charity does mean that they will inevitably have to charge membership fees, or find a rich benefactor to help fund them.

      Although a lot can be achieved via the internet, having written, published, and Hard copies of support information is very important. I know from my own attempts to start a group for HNPP that to set up a charity for health information does require quite a considerable ammount of money and a lot of time. All information has to be checked and approved by a medical advisory team, and as you know medical advice can be expensive. Information has to be regularly checked and approved, then there are many administrative tasks, including submission of annual accounts, which should be available on the charities commission website. Much can be achieved by volunteers, but inevitably charges are incurred.

      And I do think it is necessary to have written and approved sources of information, unfortunately there is an attitude among the general population and some medical staff that internet information cannot be relied upon. This was the situation that the HNPP UK group faced. With HNPP being very rare there were no sources of information when I was diagnosed, not in the UK, the only information that could be found was from the US and from the internet. It became obvious that we needed written and approved information in the UK. Luckily there were a few umbrella charities which were able to help us. And we managed to get HNPP information included in their literature. It does mean that to obtain that info one has to subscribe to the charities, but they have provided basic information and contact points free of charge for people with HNPP. It has provided those with HNPP a very important link with approved info that is UK based. Obvious I supply the same ,or similar, information free of charge, as I am the author of the info which the charities provide, but it doesn’t have the verification that some medical professionals like to see before they will take that info seriously, but if the same info is sourced through the charities then it has the ‘seal of approval’ that the med profs like to see.
      It’s not an ideal situation, but one that has to be worked with.

      So although I agree with you about the Meniere’s Society having a poor internet presence, I do think that their written information and links with the medical profession are worth the annual subscription fee. Besides I think the info that I received from them to be of high quality. Maybe it’s my age, but I do like to have hard copies, and I think they can be very useful in reaching those people who have little internet access and those who dismiss all internet information as being ‘rubbish’. It’s important that a health charity has as many modes of communication as possible.

      Having said all that, I still can’t understand why the Meniere’s Society haven’t advertised their own Awareness Week… it just doesn’t seem very aware. Perhaps they need more volunteers.

  3. Hi Joe, John, I came across your discussion by chance. The Meniere’s Society has just relaunched its website with a cleaner, more modern look and feel. It would be great to have your thoughts about this and about possible future functionality.

  4. Hi Andrew, well I would agree it does look cleaner, with a modern look and feel. However, I think that it lacks a news page. This was highlighted during the awareness week, there was no confirmation or information regarding this event. I know members who received info packs for the awareness event, or had prior warning that it was going to happen via the Spin magazine, and although I heard about the event via the independent forums, I could find no confirmation about this online or at the Meniere’s Society website.
    I think that the inclusion of a news page, detailing coming events, plus little snippets of current info or research, perhaps even a brief summary of the articles in the forthcoming SPIN magazine, would help to boost membership and keep members up-to-date with current events.
    I’m not currently a member, having had meniere’s disease (or something like it) for over 30 years, my needs are not so urgent. But I do remember finding the info and support of the Society of great help when the disease increased in intensity some years ago, before all this internet hoopla. Since then I have let my membership lapse, as other health concerns came to the fore. I do intend to join again, for me it’s a case of continuing to join the dots.
    Thanks for getting in touch,
    Jon

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s