heapsreal
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- australia (brisbane)
i think the ME and CFS debate is a way the govt can divide and conquer, i think we need to join forces and sort out the nitty gritty later.
It isnt fair to be pushing one who is ill and hasnt got the energy to be doing long replies back trying to explain
How many in Australia has got a ME diagnoses??? I personally dont know of anyone here who has been "offically" diagnosed with ME.. so calling ME a subgroup of CFS is how things currently is here right now.
I think people should be grateful to those who are doing their best to try to change things and putting as much energy as they can into doing that rather then harrassing. (You may not realise it but you are coming across as being very harrassing). How can we ever expect others to respect our energy when as a community we arent respecting each others energy and needs.
Who are the ME/CFS Australian Patient Advocacy Network (MAPAN)?
MAPAN is a group of ME/CFS patients whose ultimate wish is to recover. We are asking fellow patients and other supporters to join with us in lifting our sights to advocate for appropriate medical research and treatment for our illness.
We work in partnership with and wish to support ME/CFS Australian and state societies. Our approach is to establish a network of patients, carers and other interested people to draw on our skills, contacts and desire for change.
Our vision is that every ME/CFS patient in Australia has access to effective treatment and has a life with dignity, understanding and respect.
For more information please see our facebook page for an explanation of who we are and what we have been doing http://www.facebook.com/pages/MECFs-...45042998895538
MAPAN ORGANISATIONAL INFORMATION
All Australians supportive of our aims are welcome to become formal members of our organisation. To join please express your interest by emailing mecfsapan@gmail.com and we will forward you a membership form. There is no joining fee.
i think the ME and CFS debate is a way the govt can divide and conquer, i think we need to join forces and sort out the nitty gritty later.
If no one does anything, nothing gets done!
In my opinion we can pontificate about the way something is written and who has written it and whether it should be approached another way and in the end spend so much time arguing the negatives that we cannot move forward, as we are paralysed by indecision.
Formulate a flawless treatise ISO and we will consider it. In the meantime Megan, well done!
One hopes that some orgs will be submitting again this year. Last year, the public review period was 10 weeks; this year it is only six weeks - and no advance warning - the short notice is not going to help. But I am concerned, at this stage, that apart from UK Action for ME and US CFIDS, I have received no acknowledgement from any UK or international patient org for receipt of the documents forwarded to them shortly after the revised criteria were published by the APA, on May 4.
I suggest that we restrict the issues of definition and subsets to researchers and patients and not bring them up with politicians. I can just see a politicians eyes begin glaze over.....so you want more money for ME/CFS????...no? you want more money for ME? You don't want $ for CFS..There are two different disorders in the same illness....???
The message has to be clear and simple...
INsearchoff's issues about ME will get resolved by the research..if enough research is done then it will become apparent if there is an ME subset characterized by infections, brain issues and whatever else and if there is a central sensitization (or whatever) subset with different issues and an orthostatic intolerance subset (as the Lights now believe) and any other subsets.
On the other hand the ME issues WILL not get resolved - and by resolved I mean the gaining acceptance in the research community in such way that it is the subject of actual research - unless there is more research..
If the ME subset comes to the fore in a major way it will have to unfold naturally from the research - I imagine it won't even be called ME but you will know if you fit in it