Hello fellow Australian ME and CFS people
I respectfully disagree on not making mention of XMRV and making it the MAIN focal point to emphasise the fact that a significant number of persons with a psychobabble associated illness, have been found to be infected with a retrovirus that has the same biological foot print (according to Prof KDM and WPI) as HIV/AIDS.
Frankly, the awareness raising efforts you speak of - ie what CFS really is - have fallen on deaf ears. The Australian and Victorian Societies have tried this - without success. Simon Molesworth is not a political feather weight when it comes to government. He is a QC and well regarded and connected. I know that he has tried very hard for the cause - but the government et al have not been interested in the message - that you are now proposing to deliver.
What your suggesting will not work IMO.
The public do not care about a bunch of people who have already been vilified in their minds as lazy yuppies etc.
The damage has already been done.
It is time to turn the public on to another possible reality - to have them reconsider the lies they have been told. Causation with respect to XMRV may not be relevant, but infection is!
We need to wake the public up to the recent ugly findings in this illness that have seriously crippled us and destroyed our lives. Anything less will be dismissed....again. How many years have you all been ill? Have you not been around the scene long enough to understand this? One definition of insanity, is doing the same thing and expecting different results.
I have to be honest and say that I do not wish to waste the very little energy I have - on what has already failed.
The MCWPA state that their XMRV add, opened up a new dialogue and a new consciousness - it generated interest from the medical and medical research community. This is what needs to be done here.
In my opinion you need to ram home that science has found a very serious retrovirus in 85% of persons with CFS and that the Australian government is doing little about the matter and that this poses a serious threat to public health. Consequently, research funding should not be cut, but injected into this area immediately and without further delay. Further, that persons with CFS, who are living like AIDS patients do in the last few weeks of their life -but most days, year in - year out - are disabled and require support in the form of DSP and other services from the government and Australian community.
If your talking about a need for an ACT style of campaign -an attention grabbing one that will get the government addressing biomedical research in this area - then you need to make the most of the current opportunity - because an ACT up style campaign associated with XMRV would be appropriate. It would not be a good fit with the informational campaign that you are suggesting and has failed myserably in the past, IMO.
ISO
Ps: If my fellow Aussies do not agree with me or support me in this (which is fine) - then I would really like to hear from some of the Americans, who might be interested in assisting me to raise awareness here on XMRV
