To the Aussies

[Melodie]

Does anyone have a list of media contacts?

 

[alex3619]

Hi RustyJ, I have serious sleep issues at the best of times, I am about to crash for a few more zzzzs yet again, or at least if I can sleep. Bye, Alex

 

[alex3619]

Hi Melodie, I just run searches and post. Many have contact pages, not direct emails. Who to contact in media, and with what issues and when, is something that we all need to discuss over the coming weeks. Tania has tried phoning with some results. This could get interesting. Bye, Alex

Does anyone have a list of media contacts?

 

[heapsreal]

good onya's guys, good work

 

[peterac]

Hi by way of intro I am Peter, I have added an earlier criteria "1997 CFS Clinical Practice Guidelines" link and assc'd links html & pdf to your Wikki trust it meets with approval. I am sorry the two websites involved are not up to date but thats ME for you. You can contact me via either website
Thanks, i am back to bed
Peter

 

[Snow Leopard]

With regards to the pollies, I think the Greens should be targeted - not for awareness of XMRV related viruses but more importantly, we need a specialist CFS clinic in Australia. We need to keep driving home the fact that CFS affects a significant population (eg 0.4%) and causes major annual economic costs (between 1.5-2 billion dollars, using methodolgy similar to Jason et. al.) - it simply makes sense that we have a specialized clinic for both research and treatment. Spending a few hundred million over 20 years would generate a substantial return on investment.

If you weren't having serious cognitive probs. before applying for the disability pension, the Centrelink process is enough to make some people have a breakdown (and develop cognitive problems).

LOL. It made my mother depressed and she was sitting on the other side of the desk.
Every year they would cut staff and expect more work to be done.

I was knocked back the first time due to my condition "not being considered permanent". I was initially sick on and off ever other month, which started straight after polio/dpt immunisations, but I had only been ill 9 months continuously. As soon as I fullfilled the minimum period, I was accepted.

At my last review the contractor actually remarked that he was pleasantly surprised that I wasn't depressed. I did get the usual "I am not a doctor" response, presumably after I presented several hypothesis - I can't remember exactly. (I tend to get that from anyone who isn't a doctor, including a dietitian etc).

 

[taniaaust1]

im not able to keep up with this thread (missed reading things).. so hopefully people are acting on others posts

Does anyone have a list of media contacts?

LOL i just saw your post and only just finished pming Alex about that.. as i think he contacted some tv stations the other night. Ive no idea if he emailed or phoned them. i phoned a couple and then followed up with emailing one as more info was requested.

Ive tried doing some searching but cant find the contacts for the ABC (channel 2). I have just before i saw your message (as i saw those in england are struggling with their contacts.. the XMRV hasnt even hit their media at all.. i suggested they set up a Advocacy page to help themselves), added to our Aussie Advocacy list, the contacts i did the other day http://www.forums.aboutmecfs.org/sh...view+Project:Australian+Advocacy+Contact+List

Pity we hadnt had that Advocacy complete for when the study came out .. it was one of the many things i'd been trying to complete. We need to be able to use situations to the best of our advantage.

Also now a area on the Advocacy page for other forms of media too eg major newspaper contacts.

Can anyone help with any of the info we are missing on Advocacy page?? (ive no idea what tv stations are on other channels in Australia)

 

[taniaaust1]

With regards to the pollies, I think the Greens should be targeted - not for awareness of XMRV related viruses but more importantly, we need a specialist CFS clinic in Australia. We need to keep driving home the fact that CFS affects a significant population (eg 0.4%) and causes major annual economic costs (between 1.5-2 billion dollars, using methodolgy similar to Jason et. al.) - it simply makes sense that we have a specialized clinic for both research and treatment. Spending a few hundred million over 20 years would generate a substantial return on investment.

Great idea about doing some kind of focused response. i thou have extreme doubts thou if calling for a specialised clinic for research and treatment thou would get us anywhere as our WHOLE hospital system is in MAJOR CRISES. Fixing that is even more important and i'd think would come first.

I was in hospital the other day and once again saw something i hadnt seen for a few years. They had to set up a treatment area in the cooridoor!!! and alocate a nurse to take care of the coridoor patients. When they wheeled me past, they had 5-6 lined up in coridoor who couldnt fit into emergency room at all and this got far worst apparently after i'd been given a room (as it was an hr or so later, the nurses were trying to work out what the heck to do as the numbers in coridoor on stretchers had built up even further.

They ended up having to pull a nurse out of emergency and redistributing all the emergency areas patients of that nurse to add onto of the load everyone already had.. before that, i dont think no one was looking after the on stretcher.. coridoor patients.. they'd been just left there till emergency spot could be found.

umm so i just cant see right now us being successful in getting funding for our own centre when our health system is so dire. We may have more luck of being successful in our requests if we aimed a little lower. I think writing and asking that our hospitals have MORE doctors and more room for patients is something which could be more heard.

And simple things.. like just asking that doctors have some training in CFS/ME. i dont think they even have training for it at medical school, they NEED to be having some lectures on this subject. Our doctors do not know enough..

 

[taniaaust1]

Hi by way of intro I am Peter, I have added an earlier criteria "1997 CFS Clinical Practice Guidelines" link and assc'd links html & pdf to your Wikki trust it meets with approval. I am sorry the two websites involved are not up to date but thats ME for you. You can contact me via either website
Thanks, i am back to bed
Peter

thanks peter for adding that

 

[taniaaust1]

New subheading has been added to the Australian History and Events page "ME/CFS and the Law" to which i put in the link to that 1999 case where that Queensland mother lost custody over daughter due to ME/CFS

http://www.forums.aboutmecfs.org/sh...tralian+CFS+ME+History+and+Events&redirect=no

If anyone knows of any other CFS/ME legal cases. please add them (or post about them here so someone can add them)
................

Also add ANY Australian research studies onto that page.. it dont matter if its only a small study or not a new finding... we have so many great Aussie studies that ive realised they are going to end up needing their own page!!! which we can just link to the Aussie History and Events page

 

[taniaaust1]

Libs said they will re-review every disability pensioner, obviously with the intent of tightening up. I don't know if I could go through another review again.

Crap.. that sucks.. When i had to get the disability pension, the whole process made me terribly ill (with three appeals). Im deading going throu a review.

i suggest maybe we all make sure we have good ME/CFS specialists before that happens!! The wiki good ME/CFS doctor list (all Aussie doctors/specialists) is growing, throu researching ive found a lot, even ones in my state i'd never heard of. I had no idea we have so many in Australia (still many more to go on that list).

Please people add any ME/CFS specialists you know (or doctors who are good with ME/CFS patients) to this list to help us all.
http://www.forums.aboutmecfs.org/sh...atment+Review+Project:CFS+ME+Good+Doctor+List
.........

Rusty. have you a good ME/CFS doctor?

 

[taniaaust1]

RustyJ, I've only been through the application/interview process for the disability pension once (in Feb this year & I have to say it was really exhausting & nerve wracking).

Who ever gets into power, I hope they get some sort of order in Centrelink. I got fed up filling out the same forms for the same information over & over again. I felt like swearing at them in the end.

If you weren't having serious cognitive probs. before applying for the disability pension, the Centrelink process is enough to make some people have a breakdown (and develop cognitive problems).

Looks like the election will be one of the closest in our history, going by the tv commentary tonight.

Hi victoria

you should tell them how much it runs you down and hence you need their social worker to help with filling out the forms!!

 

[taniaaust1]

This probably isn't what most of you would like to hear. My treatment specialist is a psychiatrist. It was easier to bypass the CFS diagnosis and cop a psychiatric label. At this stage of the game I don't care what they write on their forms as long as I am accepted for disability.

I maytared myself.. and thou i was told i would get it easier if i said i had depression and my medical backup would of backed me (the ones who didnt believe in CFS/ME), i just couldnt do it thou, i didnt want something untruthful on my files, so (some would say stupidity) fought it on CFS/ME grounds alone. (I did that as I hoped it would help those in future who applied with ME).

I know this will cause an arguement with my partner when i need to be reviewed... as he thinks one should do whatever it takes to get it if one should be on it.

 

[taniaaust1]

Hi RustyJ, I have been twice looked at by psychiatrists, and one psychologist. Its part of what you have to go through to get disability. Even if you get a disability pension, eventually one of the reviews will be by a psychiatrist or psychologist. I'm not happy about this, but it is a pragmatic necessity. Bye, Alex

Not necessarily. When i queried centrelink about it, they told me that what you got as an assessor was random and not based on what condition you were applying with... The random choice was out of three, one was a Psychiastrist/psychologist... i cant remember what the other two were, but they were different things. I thou ended up with the psych. assessor.. who pronounced me quite able to work!!!! .. hence then the run of appeals i had to go throu. (back then i didnt have anxiety or depression)

 

[taniaaust1]

Alex and Tania, did you both pull all-nighters?

Yes Rusty we did **must admit the insomina really helped!**... No way thou did i want to miss CFS/ME history change.

Im only just getting to go throu this thread and catch up with the posts now. (i should be having dinner.. but so wanted to get up to date with this thread. Its funny, we cant do much but at times feel like we are the busiest people on the planet!! while trying to keep up with things)

 

[Victoria]

Hi victoria

you should tell them how much it runs you down and hence you need their social worker to help with filling out the forms!!

I actually asked my older Brother to double-check all my forms & application, Tania.
He DID come across one question I had missed (even though I looked through the "finished" papers several times.

I get stressed very, very easily. I think it's all to do with being a Perfectionist all my life, not really about having FM (or CFS).

In retirement, I take each day as it comes. If I could do more mentally, I would be first on board this thread to do research for you, but I accept my limitatins these days & take it easy as much as possible.

Sometimes it's hard to admit that I'm not wonderwoman any more.

Last Tuesday, I attempted a long walk (with minimum rest breaks) & ended up in bed for most of a couple of days afterwards. And my feet were so inflamed, red & swollen, that I've had trouble walking for 3 days. This is the first time in about 5 months, I was this fatigued, so I've learned my lesson now - stay within my limits.

You & other Aussies are doing a great job putting the Australian info together - well done everyone.

 

[Francelle]

Like you Tania I could never concede to having depression or other psychiatric illness in order to get disabilty for M.E. as I simply do not have anxiety or depression. I know I haven't been in the position of needing to apply and I would appeal too. Having said that tho', I know how cognitive fatigue would make it very hard to follow thro' on that rigourous appeal process.

 

[RustyJ]

I maytared myself.. and thou i was told i would get it easier if i said i had depression and my medical backup would of backed me (the ones who didnt believe in CFS/ME), i just couldnt do it thou, i didnt want something untruthful on my files, so (some would say stupidity) fought it on CFS/ME grounds alone. (I did that as I hoped it would help those in future who applied with ME).

Tania, I really didn't have a choice. When I was initially diagnosed with CFS, my doctor put me on twice weekly Vit C drips and B shots. He made a lot of money out of a lot of people with this treatment. After about 6 months of this, I reached a point where I could no longer work, and I asked him if he would support me in a Sickness Benefits claim. He refused, on the basis that it would harm his reputation. I got worse, went back to him and said if he wouldn't support me, could he refer me to a psychiatrist. He did. The psychiatrist ran intelligence tests etc. and said my IQ had dramaticall fallen, there was nothing wrong mentally with me, said it was physical, and referred me back to the Dr.

I was bounced back and forth several times over the course of three months. By this stage I was getting desperate - I honestly thought I was going to have a nervous breakdown. I would walk into the office, sit down, then ten minutes later get up and go home. For three days a week I was sitting at my desk pretending to work, then for a couple of days feel better, work overtime to catch up. My work colleagues, who were mostly drunks anyway, abused me endlessly.

I told the psychiatrist that indeed my mental health was rapidly deteriorating (which it was) and he eventually helped me push through the claim. He has been very supportive of me ever since, even though he is convinced my condition is physical. It was one of the most traumatic periods of my life.

I would like to think things have changed since then.

 

[Melodie]

Deleted the links

 

[Victoria]

I honestly thought I was going to have a nervous breakdown.

I felt exactly the same, Rusty.

For three days a week I was sitting at my desk pretending to work, then for a couple of days feel better, work overtime to catch up.

I did this also. When I felt too mentally challenged or exhausted (or my pain levels were too high), I would sit & pretend to work. Then of course, I would work back when I felt better (to make it up). Good to have have someone else put it into words.

And on another note, looking at the "good doctors" list on the Wiki, have we really only got TWO people in Victoria to list. One of the GP's at my medical clinic told me about someone in St Kilda, but my personal GP told me this proclaimed CFS specialist didn't really do much at all, so I guess he's not suitable for the "list".

I only know of Don Lewis & the cost estimate his clinic sent me 3 months ago made him prohibitive for me - he just costs too much. I worked it out that he would cost about $1300 just for the 3 basic visits & testing - probably closer to $2000 if you included taxis/public transport & follow up appointments.

As he is only a GP, you could only get the typical GP rebate on his $600, $300 & $600 charges for those initial 3 visits (plus the cost of a Hydrogen Breath Test, which is about $95 I believe), I presume.

What's a normal Medicare rebate for a basic visit now? $30+ for a visit? (My GP bulkbills me, so that's why I don't know what the current rebate is).

(By the way, I still have the 8 pages of information & estimates etc that his CFS Discovery clinic emailed me, if anyone is interested).


There must be someone else in Victoria, surely?