To the Aussies

[alex3619]

Hi

Regarding isolation, Murdoch University (WA) is running a study using Second Life (a virtual world with voicechat capability) to improve isolation in CFS patients. I am a participant. The first phase should be complete later this year, and we should all be interviewed. It might be put on hold temporarily because the lead investigator is off on leave for a while (no, not CFS issues). these meetings are general support meetings, and open to everyone in the world. They are held at three separate times to allow for different time zones and needs. If there is any interest, I will post more on this.

Australia has a long history of CFS studies. In the mid 1990s we were one of the leading research countries, based mainly at Newcastle uni. This is where the huge list of CFS studies is being conducted, so I guess they never stopped I just stopped hearing about them - or maybe XMRV kickstarted everything again.

If we want to get a good history, we will need to enrol or entice many people in the Aussie CFS community, including contacting all the societies. My problem is that my memory is stuffed, I recall a lot from the 90s when I was more active in the local CFS community, but dropped out of this when the Qld society collapsed because everyone was too sick to keep it running, despite the fact that we were solvent. The problem is that I don't remember details, only issues. This would take a lot of research, probably from people who have a lot more resources than I do (such as being able to physically travel to a society and look at their info). If we can get all the societies on board with this, it will be much much easier. We might consider getting the societies to publish a brief note in their newsletters or journals.

Bye
Alex

 

[taniaaust1]

Hi

Please note the Peter Dutton question in parliament was asked in February, and answered in May. These things take time.

Bye
Alex

just seen that post. I had actually wondered if it had been your emails that got the question put throu parliment

(be back in a little while.. i need a rest.. when i come back if someone hasnt made some kind of start on an "Australian CFS/ME history and events" wiki page, i'll start it).

 

[alex3619]

Hi tania

I am on board with this, but I do think we should cc every health minister and shadow health minister in Aus, after the election and after ministers are confirmed - and of course after the Alter paper. There is no reason send only one. If I send one with a particularly focus, and each of you send something a little different, then they might realize how important the Alter paper is.

Bye
Alex

ps We should also cc selected media outlets, after debating which to send to. I think Four Corners should be one. The ABC requires these emails to be posted separately to avoid spam, using their posting pages, so it requires cut and paste not just an email address.

Someone could do try to get another question put forth to parliment.. asking What the government is doing as far as funding XMRV research in case its causitive to CFS/ME.

 

[Megan]

Perhaps I have not been appreciative enough of the other research going on. This is mostly because I find the XMRV finding to be the most momentus one for us thus far and I don't see anything happening in Australia on that front. I don't have anything against the other research, but it seems peripheral in this context.

http://parlinfo.aph.gov.au/parlInfo...;query=xmrv;querytype=;rec=2;resCount=Default "
i thought that reply was quite good. If its shown we have it and treatment is appropriate, the testing will be included under Medicare. They seemed to be postive towards the finding of XMRV in CFS/ME patients (no dispute)... and as yet it isnt known if it is the cause of our issue (even the WPI say that). All that is known is that many of us have it and our government dont seem to dispute that probability.

Regarding the testing question, maybe the answer is not so bad, but I was hoping we might get access to a test some time soon, regardless of whether it is covered by Medicare or not, though obviously that would be preferable. I don't really think it answers anything though, the way they have answered it it sounds like a whole lot of red tape could get put in front of it before anything ever happens. My feeling is that, so long as there is an association between XMRV/CFS shown, then we should have acces to a test regardless of whether there is general agreement on causation or treatment in the medical profession or not. If association were shown, it would still be the closest thing we would have to a biomarker.

 

[heapsreal]

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

 

[Tony]

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.

 

[taniaaust1]

For those who want to give a hand at helping get "Australian CFS/ME History and Events" together and doing the wikipage. Ive started one at http://www.forums.aboutmecfs.org/sh...tralian+CFS+ME+History+and+Events&redirect=no and just set up some headings for where info can be put under.. just go to edit at the top of it to put something in it or change something. More headings can be added under the ones i have put if anyone can think of anything important which should be there.

If someone can work out why on earth the CFS/ME death part has gone very small??? and fix that.. i'd appreciate it. From what i can see i've got that heading set as same size as the other headings there but maybe my brain is missing something very obvious ( it must be)

 

[alex3619]

Hi Tony,

I take Nixons Hansard comment to mean that we already have a medicare code to charge it to. We just need the path lab. Challenge to this is likely to come from the Health Insurance Commission, which I tried to get before the Discrimination tribunal in around 1995 (94?), because they were discriminating against CFS patients and doctors. I didn't succeed. The HIC takes the view that medicare only covers accepted treatments. If they deem a treatment experimental, then it cannot be covered by medicare. What they say or don't say will ultimately determine general insurance issues, but they rarely challenge medical specialists on this, only GPs.

Bye
Alex

 

[Melodie]

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.

 

[alex3619]

Hi heapsreal

Is Dr. Whiting no longer in practice? I haven't seen Dr Deed in two years now.

I have never seen Dr Whiting as a doctor, but we have had several talks on the phone and at a seminar. Most of what I know comes from Dr Deed - it was Dr Whiting that showed, for example, that many CFS patients have no detectable vitamin E. He also showed the urinary citrate problem was not continuous but only on waking (presumably accumulating during sleep) - something that would invalidate the UK study that claimed to show that citrate has nothing to do with CFS, as they absolutely required that the citrate was constant in their study which failed to find citrate.

Dr Whiting most definitely had contact with the Newcastle group, as did my old Brisbane CFS doctor Dr Martinovic.

Dr Whiting was/is a lot like Cheney - he ran test after test after test looking for clues, and I think the HIC leaves him alone because he is a specialist (tropical disease) and so very hard to argue with. He also has been using B vitamin injections, especially B12, for a very long time.

Funding has always been a problem for Dr Whiting. A valcyte trial became problematic once the testing costs were apparent - maybe you know more about that given your current treatments heapsreal?

Bye
Alex

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

 

[taniaaust1]

Hi

Regarding isolation, Murdoch University (WA) is running a study using Second Life (a virtual world with voicechat capability) to improve isolation in CFS patients. I am a participant. The first phase should be complete later this year, and we should all be interviewed. It might be put on hold temporarily because the lead investigator is off on leave for a while (no, not CFS issues). these meetings are general support meetings, and open to everyone in the world. They are held at three separate times to allow for different time zones and needs. If there is any interest, I will post more on this.

Australia has a long history of CFS studies. In the mid 1990s we were one of the leading research countries, based mainly at Newcastle uni. This is where the huge list of CFS studies is being conducted, so I guess they never stopped I just stopped hearing about them - or maybe XMRV kickstarted everything again.

If we want to get a good history, we will need to enrol or entice many people in the Aussie CFS community, including contacting all the societies. My problem is that my memory is stuffed, I recall a lot from the 90s when I was more active in the local CFS community, but dropped out of this when the Qld society collapsed because everyone was too sick to keep it running, despite the fact that we were solvent. The problem is that I don't remember details, only issues. This would take a lot of research, probably from people who have a lot more resources than I do (such as being able to physically travel to a society and look at their info). If we can get all the societies on board with this, it will be much much easier. We might consider getting the societies to publish a brief note in their newsletters or journals.

Bye
Alex

Im getting a bit off topic here as this isnt a piece of important CFS/ME Australian history or event.. but i keep thinking that study you are talking about is the same one i parttook in first section last year (or year before?). In Adelaide could only be involved in the questionaires for it.. due to the main part of the study being held interstate. If it wasnt that one.. im wondering who was doing the study i was in the first stage of.
..........................

Shouldnt be too hard to get a good basic history together as we are in the age of computers .. (thou yeah its hard when our brains have forgotten). I'll get together what we can here.. and then post at the Aussie CFS forum (Leighs.. Not crazy forum) to see what more info we can get. I have a feeling that one of the Aussie states CFS/ME organisations also not too long ago started up a forum (ive no idea how that is going as ive never been there just heard that one was being started up from the site). Does anyone here know about that CFS Associations public forum? or any other Australian CFS ones?

If after all that we still have history gaps or confusion.. we can also ask the different CFS/ME organisations here to clarify what has gone on in their state and with the organisations. (Most important stuff and events is online.. its just finding the info). I think its best to stick with quite important events otherwise the page would end up huge.

If anyone wants to list every australian CFS/ME study other then important ones which were first findings in CFS/ME.. they probably should go onto an Australian Research page as i think its best the page not be made huge as so many have trouble reading.

 

[cfssufferer]

maybe once we've got the Australia CFS/ME history page up.. we could form an PR Australian Avocatcy group to target such things.

Setting up an Australian advocacy group is a great idea! Count me in.

 

[alex3619]

Hi Melodie

I think PNAS comes out on Monday evening, which translates to Tuesday in the USA before most react, but only Tuesday afternoon for us.

bye
Alex

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

 

[alex3619]

Hi Tania

The Murdoch study was first advertised on the SA society site as far as I know, or at least that was where I found it.

Bye
Alex

 

[taniaaust1]

Perhaps I have not been appreciative enough of the other research going on. This is mostly because I find the XMRV finding to be the most momentus one for us thus far and I don't see anything happening in Australia on that front. I don't have anything against the other research, but it seems peripheral in this context.



Regarding the testing question, maybe the answer is not so bad, but I was hoping we might get access to a test some time soon, regardless of whether it is covered by Medicare or not, though obviously that would be preferable. I don't really think it answers anything though, the way they have answered it it sounds like a whole lot of red tape could get put in front of it before anything ever happens. My feeling is that, so long as there is an association between XMRV/CFS shown, then we should have acces to a test regardless of whether there is general agreement on causation or treatment in the medical profession or not. If association were shown, it would still be the closest thing we would have to a biomarker.

Great point Megan. I hadnt thought of that!! yeah even if it isnt causing our symptoms but rather due to something else lowering our immunities or whatever.. it would help to confirm that we probably have CFS/ME. umm thou probably wouldnt be enough for biomarker seeing that many with other issues have XMRV and dont have CFS/ME.

 

[taniaaust1]

Small trials which researchers or specialists made public would be interesting if new original findings came out of them which could be followed up in future. i dont know about how others here think but i think any original Australia abnormality findings in CFS/ME maybe should be on the wiki page?? what do others think?? or should we leave these smaller original findings found over here out of the Australian info?

i think the Aussie researchers were responsible for original lactic acid findings? New Staph and CFS findings, high amounts of Rickettsia in Australians with CFS etc. umm and there was another which i cant think of right now.

 

[taniaaust1]

Hi Tania

The Murdoch study was first advertised on the SA society site as far as I know, or at least that was where I found it.

Bye
Alex

ahh i did used to always read that site.

 

[Melodie]

I have a feeling that one of the Aussie states CFS/ME organisations also not too long ago started up a forum (ive no idea how that is going as ive never been there just heard that one was being started up from the site). Does anyone here know about that CFS Associations public forum? or any other Australian CFS ones?

.

Here is the forum page for MECFS Victoria. You need to join facebook by the looks of it.
http://www.facebook.com/pages/MECFS-Australia-Victoria/73831909110

 

[taniaaust1]

Here is the forum page for MECFS Victoria. You need to join facebook by the looks of it.
http://www.facebook.com/pages/MECFS-Australia-Victoria/73831909110

oh boy, what is up with facebook.. it seems that one needs to be almost part of that to live in todays society. Thanks Melodie

 

[alex3619]

Hi

The Dubbo studies, desite their links to the CDC, are research classics in CFS because they show that the primary risk for developing CFS is the severity of initial infection by a range of pathogens. I think there were two studies, but only one is commonly quoted. Does anyone recall? My internet access is severly limited as my account will be shaped for much of the next week, so I try not to do searches at the moment. There have been a lot of other good research papers coming out of Newcastle studies, but some were later disproved as well.

Bye
Alex

Small trials which researchers or specialists made public would be interesting if new original findings came out of them which could be followed up in future. i dont know about how others here think but i think any original Australia abnormality findings in CFS/ME maybe should be on the wiki page?? what do others think?? or should we leave these smaller original findings found over here out of the Australian info?

i think the Aussie researchers were responsible for original lactic acid findings? New Staph and CFS findings, high amounts of Rickettsia in Australians with CFS etc. umm and there was another which i cant think of right now.