To the Aussies

[taniaaust1]

http://www.forums.aboutmecfs.org/sh...tralian+CFS+ME+History+and+Events&redirect=no i just down sized the headings.. and finally worked how to fix the issue i had with one of the heading sizes (had the info in the wrong area so the code wasnt working how it was meant to).

Nods.. Alex i agree the Dubbo studies need to be put on the page as they are quite famous and quoted a lot. Anyone got links to those studies? bbl ..dinner time.

 

[Melodie]

The Dubbo Study is at:

http://www.bmj.com/cgi/content/full/333/7568/575

but I know nothing about if it is first or second.

 

[Melodie]

I personally find drafting letters difficult, so does anyone have any ideas for what would be useful for putting on the wiki for lobbying. I don't seem to have permission to be able to put things on the wiki myself.

 

[Melodie]

Alex I have plenty of gigs left so if there is anything you need please ask.

(Need to go off my computer soon for tonight.)

 

[alex3619]

Hi Melodie

Links are the best option, with creation or use of other sites and forums. Letter writing is a problem for many of us: personally I am in favour of a piecemeal approach, using small segments of text that address various issues - just paste what you need. The PR forum on FAQs might be good here too. I think the ENOUGH forum topic might also be useful here. A repository of email addresses for Australia is of major importance - I find tracking through masses of websites looking for current emails exhausting, much more than writing the letter itself. We also need to be thinking outside of government, including instructions on how to post to the ABC, email addresses for government advisers (including the science advisers) etc etc. Over time I hope these links will increase, but we also need a reporting method for failed links, which could happen especially after an election anywhere in Australia. Identifying friendly or potentially friendly advocates, politicians etc is also important, even if they are not directly involved in health. This should include the Greens, not just the two major parties. Philanthropists are also important here, many have a strong voice such as Dick Smith, although I think he is so focussed on population at the moment that he might be a poor choice in the near term.

Bye
Alex

I personally find drafting letters difficult, so does anyone have any ideas for what would be useful for putting on the wiki for lobbying. I don't seem to have permission to be able to put things on the wiki myself.

 

[taniaaust1]

The doctor i see in brisbane, dr deed use to work with dr whiting who was a cfs 'specialist' in the 90s and had abit to do with treating alyster lynch with his cfs problems. Im not sure if dr whiting did any big studies but every so often dr deed will drop something that dr whiting had trialed. Last appointment he mentioned how dr whiting did a small trial on ampligen with some cfs patients but was unsuccessful and some got sicker. So i think alot of his trials were mainly self funded and small but would be interesting to find some of his work, also think he had contact with the newcastle group as well.

Alex did u see dr whiting a number of years ago and do u remember him doing any other trials/studies? i know he was quite influential in the 90s

i remember a dr whiting who was doing some research. i forgot now exactly what he was researching in CFS/ME. He was a well known name way back.

 

[Melodie]

Hi Melodie

Links are the best option, with creation or use of other sites and forums. Letter writing is a problem for many of us: personally I am in favour of a piecemeal approach, using small segments of text that address various issues - just paste what you need. The PR forum on FAQs might be good here too. I think the ENOUGH forum topic might also be useful here. A repository of email addresses for Australia is of major importance - I find tracking through masses of websites looking for current emails exhausting, much more than writing the letter itself. We also need to be thinking outside of government, including instructions on how to post to the ABC, email addresses for government advisers (including the science advisers) etc etc. Over time I hope these links will increase, but we also need a reporting method for failed links, which could happen especially after an election anywhere in Australia. Identifying friendly or potentially friendly advocates, politicians etc is also important, even if they are not directly involved in health. This should include the Greens, not just the two major parties. Philanthropists are also important here, many have a strong voice such as Dick Smith, although I think he is so focussed on population at the moment that he might be a poor choice in the near term.

Bye
Alex

thanks for that. Regarding the failed links, I hadn't thought of that, do you mean more than just updating the link on the wiki that there should be a separate list for them? Gotta get off this computer now, Bye.

 

[Francelle]

Haven't read all the posts in this thread, as too tired, so don't know if this has been raised yet - but it will be important to have some proofreading and editing done of the content before posting to Wikipedia.

Well done everyone!

 

[Melodie]

Hi Francelle, Tania has made a wiki on PR:

http://www.forums.aboutmecfs.org/sh...+Project:Australian+CFS+ME+History+and+Events

So we can all add and edit and proofread.

 

[taniaaust1]

A couple of people from Aus have contacted WPI regarding a test for XMRV here. The answer was that they hope to have it available here soon. Whatever soon means... This was in a thread here

So it would seem that some path lab is interested and has been talking with them. WPI would then license the lab to do the testing as they have done with REDlabs in Belgium. I'm not going to hold my breath over a medicare rebate...that seems a long way off.

Someon on that other thread from Australia recently emailed the WPI and got the following reply back

"You will need to contact VIP Dx to inquire about that. They can be reached at info@vipdx.com. All the tests need to be ordered by a doctor so you many need to find a physician in the U.S. Also, we are working on making the technology available outside of the US - you can also wait for that. There is no timeframe when that will be ready. "

So they arent saying soon now. Didnt the lab they were hoping to work with change its mind?

 

[taniaaust1]

Are we to expect the Alter paper on Tuesday and will that be Wednesday here or something like 10pm do you think?

So should we find out from WPI if they already are in the process of licensing a lab here? I am prepared to pay for the test as I don't expect it to be on medicare (edit: ok it seems that it may be on medicare) for a while either.

Tania put the wiki up, thanks Tania!

Can we call it ME/CFS rather than CFS/ME?

Do we need to put on the wiki stuff for lobbying such as MP addresses, reference links for relevant studies (eg Science)etc to put in the letters?

Edit: I just read your post Alex after posting this.

Seeing the wiki article is for Australia.. what is the common term of it in Australia.. CFS/ME or ME/CFS???? (goes to have a look at what our Aust. Organisations are calling it).

Wasnt there talk that the Alter article wont be out now till around the end of the month??

 

[taniaaust1]

ohhhh thanks Melonie. i see now the term here is ME/CFS. Everything on that wiki page should be changed.

 

[heapsreal]

Heres a link to some cfs stuff from dr whiting summarises, newcastle university is mentioned as well as a few other doctors involved in aussie cfs, even my doc gets a mention, dr deed.
http://www.ei-resource.org/articles...marises-some-of-the-latest-research-into-cfs/
I dont think dr whiting practises anymore, but not certain of this

 

[taniaaust1]

I don't seem to have permission to be able to put things on the wiki myself.

??? did you try to post something and not have it work? It should work.

 

[taniaaust1]

Hi Melodie

Links are the best option, with creation or use of other sites and forums. Letter writing is a problem for many of us: personally I am in favour of a piecemeal approach, using small segments of text that address various issues - just paste what you need. The PR forum on FAQs might be good here too. I think the ENOUGH forum topic might also be useful here. A repository of email addresses for Australia is of major importance - I find tracking through masses of websites looking for current emails exhausting, much more than writing the letter itself. We also need to be thinking outside of government, including instructions on how to post to the ABC, email addresses for government advisers (including the science advisers) etc etc. Over time I hope these links will increase, but we also need a reporting method for failed links, which could happen especially after an election anywhere in Australia. Identifying friendly or potentially friendly advocates, politicians etc is also important, even if they are not directly involved in health. This should include the Greens, not just the two major parties. Philanthropists are also important here, many have a strong voice such as Dick Smith, although I think he is so focussed on population at the moment that he might be a poor choice in the near term.

Bye
Alex

Alex... i think it would be a good idea to link an Avocatcy (sorry my spelling is shocking) in Australia page to our Australian History and events page. Could you do a "Avocacy for ME/CFS in Australia" page or whatever you want to call it, to which we can link to the page we are doing now???? i know you know far more in that area than any of us due to all the ministers you've been mailing... you could just go throu your sent email box and make a list of the ones you've been mailing for this.

It could have all the names to mail.. and could include suggested ME/CFS issues we could be contacting them over.

What do you think about creating that page to link up with the one we are doing??

 

[alex3619]

Hi Melodie, if we can just update a link, great. However, it is my experience that some new email addresses etc. (and I mean updating addresses, not just links) are hard to find too. so if someone can't find it and fix it, there should be a way to report problems. A forum question might work, but a more formal way would be better, such as some place we can leave a list of issues.

Bye, Alex

thanks for that. Regarding the failed links, I hadn't thought of that, do you mean more than just updating the link on the wiki that there should be a separate list for them? Gotta get off this computer now, Bye.

 

[alex3619]

Hi Tania

I may have more experience, but I am a geek at heart and politics is a foreign language. There are specific issues on advocacy that I can talk about though, I am thinking a blog might be more effective. Some of my ideas have already been mentioned at:

http://www.forums.aboutmecfs.org/sh...ible-letter-to-the-Australian-Health-Minister

I am more than happy to write a blog, but I probably wont start this week. Also I think we should aim to create as many easy links to advocacy forums and sites as we can, perhaps using group links (eg. the first link is to Advocacy Links, which points to a page of only advocacy sites, not information sites). On PR this would be specific advocacy related threads, for example, not PR as a whole. the other thing is, we should link to sites anywhere, not just Australia, but subroup them eg. Australian sites, USA/North America sites, PR threads, etc. As the advocacy movement grows (we hope), we can keep updating links.

Bye
Alex

Alex... i think it would be a good idea to link an Advocacy (sorry my spelling is shocking) in Australia page to our Australian History and events page. Could you do a "Avocacy for ME/CFS in Australia" page or whatever you want to call it, to which we can link to the page we are doing now???? i know you know far more in that area than any of us due to all the ministers you've been mailing... you could just go throu your sent email box and make a list of the ones you've been mailing for this.

It could have all the names to mail.. and could include suggested ME/CFS issues we could be contacting them over.

What do you think about creating that page to link up with the one we are doing??

(Sorry tania, I was proofing my post and started proofing your quote by mistake... Don't worry about spelling, I am happy if I just choose the right word, spelled correctly or not, and as for grammar if what I write is understandable the rest can go hang until someone has a cure for my brain. If that is true for me, I would have to be mean spirited to not extend the same courtesy to others.)

 

[Melodie]

(Sorry tania, I was proofing my post and started proofing your quote by mistake...)

Good one!

 

[Melodie]

??? did you try to post something and not have it work? It should work.

I figured it out. I was using the wrong edit button!

Going to bed now.

 

[taniaaust1]

(Sorry tania, I was proofing my post and started proofing your quote by mistake...

LMAO.. i see we are all going to have a great time with this. Maybe surprises whenever we go back to look at it LOL.

I need to go to bed too.
goodnight
(still hoping that when i next look at the page.. that all my CFS/ME mistakes have been magically changed by the faires)

lol melodie.. oh lol is there two edit buttons there.. blurry sight today??

we'll work the thing out