Monday, 20 December 2010

Not a site I would recommend if you want help with a dizzy disorder. In a few days I have had my accounts blocked, my private messages intercepted and my posts deleted. Special interest forum communities can be really positive if run well, unfortunately those attracted to running such communities are usually middle aged control freaks with the intellect of a fruit fly, like this one. It seems that all it can offer is sympathy and the promotion of diagnosis which are not relevant.

This is an official message from the admin team of this site. We are very concerned about some of your posts. You have told a member in one of your replies about anxiety and inner ear disorders that you know what is wrong with them and can fix it and invited them to pm you for advice.

The wellbeing of our members is paramount and we cannot allow anyone with no medical or scientific qualifications to claim to know better than the medical world. Scientists have been studying the inner ear and dizziness for years and how you, after only 3 years of being dizzy can claim to know better than them is beyond us.

As Pam told you, this site is run by dizzy people for dizzy people and is about support and advice based on experience. you are welcome to post questions and give support but please refrain from making such claims as you have been.

If you continue in such a manner we will be forced to remove you as a member.
Listen, please take this as my leaving your community, I don't want to be associated with people behave in such a reprehensible manner to it's members. If you feel you can justify with your medical training who says what about a disorder then please go on patting people on the shoulder, telling them there there and promoting the same tired nonsense so they never get better. I hope you feel good about that.

P.S. I am looking forward to reviewing the nonsense you pedal on Dizziness and dissecting it. I would starting apologising now to those who will spend Christmas in misery with no hope because you are promoting conditions which are unproven, cannot be proven and cannot be treated. I know because I was one of those people.


  1. I actually agree with some of this...I joined 2 years ago and after a few days on there but i quickly discovered that it wasn't helping reading about the misery of everyone else, there seemed to be no one talking about the positive side of life. I do think that we all need empathy and understanding and everyone needs treating differently which is probably another reason why that site isn't for everyone.

    I question everything I read until I have read as many medical journals as I can get my hands on (i did a course this year called beyond google - it was amazing and really helped my skills is finding good information)

    I didn't like how every time someone asked a question they got the same answer - do the excises - I have since found out that they are affective for me as I know that, with MAV, it is not that simple, there are many trigger that need exploring.

    They also seemed to not want to admit the failings of some GPs with regard to dizzy disorders, I needed to vent as I felt, like many others that I was let down but that was frowned upon.

    They are nice there and I think they help many people, but for me, I felt myself feeling worse as looking for symptoms that didn't exist or went bothering me before. I think we all need to find our own way. I don't think its all nonsense, people just need to take responsibility for their own health and be sensible about what advice they take, which is harder to do than say.

  2. I simply wanted to help people, I saw the site promoting theories which were basically unproveable and in many ways holding people back from getting effective treatment.

    I know they mean well, but so do alot of people who do harm to others. VRT will not help MOST Dizzy people. The conditions which VRT is used to treat cannot be verified. I was referred by a Neurologist to a VRT Physio. I told the Physio I was not sure what the cause of the Vestibular Issue was since it did not seem to respond at the ENT suggested (within a couple of months at most (that was 3 years ago).

    The Physio said it was most likely a Virus and not to worry. The attitude being, if in doubt lets treat something which nobody can verify since VRT treats all Vestibular complaints.

    I am amazed their "expert" challenges Pyschological Triggers as a source of Vestibular Dizziness whilst I am publishing a Neuro-tologist report identifying the relationship and can provide a number of other indepedent studies to confirm this. Not only that they deleted it so a member who asked would not be able to see it. I wonder how many people unable to afford the medical expertise I can end up there with BPPV and Labyrinthitis marketed as the explanation for all their problems and wasted years on useful VRT. I see moderators who seem to have made Dizziness a life style choice advising everyone to do VRT.

  3. I agree with you .. I meant to say the VRT didnt work for me, as I'm sure you understand typing isn't easy when feeling dizzy ;)
    I will be following your blog as what I have read you seem to be well informed. And you have made some similar findings to me. Its nice to hear that someone agrees with me on The VRT front, I grew very frustrated as that was all I heard from my DR so I gave up going in the end. Vowing to find the answer myself.

  4. Who the hell do you think you are ? Where are YOUR medical qualifications? Oh sorry, I realise you DO NOT have any but claim to know everything. You even have the audacity and gall to pretend to know more than Specialists in the Dizzy field ... I am appalled the way you have slated so many exceptional *dizzy* sites, this is extremely unprofessional, but then maybe this feeds your own warped mind and so called puffed up importance.
    You say you want to help people .... well stop blogging your rubbish !!!!

  5. Hi Nannie Sheila:

    Nannie: Where are YOUR medical qualifications?

    Demosthena:Where are YOURs?

    Nannie: Oh sorry, I realise you DO NOT have any but claim to know everything?

    Demosthena: That is not exactly true, I have a first aid qualitification though it might have lapsed.

    Nannie:You even have the audacity and gall to pretend to know more than Specialists in the Dizzy field ?

    Demosthena:You mean the specialist (Master of Public Health), special advisor to Dizzytimes who challenged Anxiety/Stress as a source of Dizziness, after I had published a Consultant Neuro-tologist report stating this was the case (and was deleted). Look over the web and look how much evidence there is from respected sources before you start ranting on about who has what medical qualifications. Think about this, there is no known medical explanation to explain why Acupuncture works, but it does. I don't need to understand the science since I know the outcome (VERY WELL). Your point is that because my first aid course lapsed (and no longer qualified) I am not able to comment on the effects of treatment or refer to medical sources.

    Nannie:I am appalled the way you have slated so many exceptional *dizzy* site...

    Demosthena: Which sites?

    Nannie: this is extremely unprofessional,

    Demosthena: My first aid course was not very professional, maybe that is coming across in the blog.

    Nannie:but then maybe this feeds your own warped mind and so called puffed up importance.

    Demosthena:I have dizzines, therefore my mind is definitely warped (that we can agree on). I did not make you comment, I did not force you to read my blog so I can only suggest that maybe you are writing on here to try and validate the actions of others. It seem's maybe given your lack of understanding of the facts that your remarks are more personal rather than factual. Just putting that out there.

    Don't be down hearted when you read this, whilst your comments are bereft of reason that won't stop your dizzytimes buddies from coming over here and for a good old lynching. Will you be burning crosses or is it to be a good old tarring and feathering?

    Nannie: You say you want to help people .... well stop blogging your rubbish !!!!

    Demosthena: How would it help people if I stopped blogging, please respond and tell me that?