Progress on the Petition - Help Required

Specific Illnesses & Conditions VM/MAV
1

So we are doing well… Thank you to all who have signed, shared, tweeted etc etc etc.

We have achieved a grand total of 121 signatures after a week. I know it doesn’t sound like much, but I am really pleased but I have been so poorly I have done nothing really to get out there with it.

But which ever way you look at it we need to times it by 1000 to hit our target, so I am looking for some help for the next stage…

Forum Hunting

I have currently posted the link on the following support forums:
This one
Meniere’s Disease Uk
dizzytimes.com
manage menieres uk

I could do with some help searching out as many forums as are out there and posting the link for the petition, am happy for people to copy and paste the message I posted, write their own, or let me know the web page and I will do it.

All I ask is that we update this page with any we have found so as to not duplicate effort??

Also, I’m trying to list all the different balance disorders, so as to ensure that we don’t miss any, so far I have:
MD
MAV
BPPV
Labyrinthitis
Hughes syndrome
Chronic fatigue syndrome

Can you help me complete the list.

Please if you can just spare 5 minutes to google search some forums, it would be such a help, and any ideas on the next steps.

I have been in touch with the Migraine Society, I have a call back with them tomorrow to look at how we can work together on this so that is good. Want to do the same with all the other Society’s.

Also will be contacting the General Medical Council, as I have heard that they have been pushing for improvements in treatment of balance conditions

Would love the help if you have the time

Jo xxxx

2

Well some good news, it looks that migraine support are going to list the petition on their website and facebook pages. They have offered to email their members and I would love to say yes, but there is a cost involved and unfortunately I have no budget (and no spare pennies at the moment) so we will have to put that on hold, though maybe get some funding at a later date…

3

It’s up to a 177 now :slight_smile:

I wonder how much they want for the emails? It’s migraine awareness week for them in the beginning of September I’m sure they’ll be doing lots of little projects around then, be good if we could do something to coincide/funding for emails around then?

How have you been getting on? X

4

Hi

I’ve been in India the last few weeks,so haven’t done much for a bit.

I will be giving them a call so will find out how much the emails are, see if we can talk them into sending them for free…

How are you?

Jo