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Rituximab in Australia

Jill

Senior Member
Messages
209
Location
Auckland, NZ
Has anything happened with ampligen over there yet?
Hi rusty think I remember you from a few years back! I agree us long term era need it all asap :))
 

RustyJ

Contaminated Cell Line 'RustyJ'
Messages
1,200
Location
Mackay, Aust
Has anything happened with ampligen over there yet?
Hi rusty think I remember you from a few years back! I agree us long term era need it all asap :))

Nothing about ampligen yet.

Not sure. :thumbdown: Maybe on mecfsforums?
 

Jill

Senior Member
Messages
209
Location
Auckland, NZ
Nothing about ampligen yet.

Not sure. :thumbdown: Maybe on mecfsforums?
Yep probably was on there. Everything is so disjointed now. Is there an oz message board or has it gone to Facebook. Like you I think about going overseas. Thinking seriously of going to omi. But the prob is getting meds back here.
 

RustyJ

Contaminated Cell Line 'RustyJ'
Messages
1,200
Location
Mackay, Aust
Is there an oz message board or has it gone to Facebook.

Ampligen? I checked Emerge website, nothing more than initial press release. Not sure about Ampligen - company has dicked around so much. OMI is using it?
 
Messages
39
Location
Melbourne, Australia
Ampligen? I checked Emerge website, nothing more than initial press release. Not sure about Ampligen - company has dicked around so much. OMI is using it?

I've emailed the company - no response so far.

I was on a little-known Ampligen trial here in Melbourne ten years ago: went from bedridden to almost fully recovered physically, but when I stopped the infusions I relapsed. However, I was pushing myself a lot (I believed myself cured) and the effects of the Ampligen continued for the next five years before I started to become very weak again.

I will be devastated if TGA doesn't approve Ampligen. Of course, then we have the problems of the cost of the drug and who is going to administer it. I wouldn't count on PBS approval.
 

redaxe

Senior Member
Messages
230
Tell me if I'm being pessimistic or realistic but knowing how medical bureaucracy works in Australia its probably going to be decades before you can get a quick referral to a hospital for Rituximab.
I mean seriously most doctors here still think CFS/ME is a psychological issue. I think we lack the infrastructure to respond to the rapidly evolving pace of medical research.

I'm going to go further and be a cynic and point out for a moment the billions of dollars that's been spent on trying to fight anthropogenic "climate change" - but how many lives has global warming taken? Meanwhile we have these horrible diseases that are killing people or crippling them for life and they're virtually unfunded.....
 

EtherSpin

Senior Member
Messages
257
Location
Melbourne , Australia
had a thought ... my sister has Rheum arthritis and is on the way to full blown CFS ( we both have ehlers danlos as predisposition) and currently ritux is 37 bucks on the PBS for severe Rheumy arthritis cases , what if an Aussie researcher did an observational study by contacting all the docs who claim to treat CFS here - get them to notify all patients who have full on R.A. so they could commence a normal dosing schedule with regular scoring of each of their key CFS symptoms . thoughts ?


EDIT - I'm not familiar with NSW doctors who specialise in CFS but this guy works with Rheumatoid Arthritis and CFS and could be perfect to sound out these ideas, Richard Kwiatek , anybody familiar with him ?
http://rheumatology.org.au/otherpages/search_displayrheumatologist.asp?id=166

I'm going to put together a letter to send his organisation and would love any input about what to include.
 
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Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
EDIT - I'm not familiar with NSW doctors who specialise in CFS but this guy works with Rheumatoid Arthritis and CFS and could be perfect to sound out these ideas, Richard Kwiatek , anybody familiar with him ?
http://rheumatology.org.au/otherpages/search_displayrheumatologist.asp?id=166

I'm going to put together a letter to send his organisation and would love any input about what to include.

It's a nice idea, but...

I'm not sure about the generalisibilty of the effect of Rituximab on Fatigue in RA (which can cause fatigue on its own...)

I know him and I don't see him doing what you suggest outside the context of a trial. I don't see him having the sway to do a trial for ME either...
 

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
I'm going to go further and be a cynic and point out for a moment the billions of dollars that's been spent on trying to fight anthropogenic "climate change" - but how many lives has global warming taken? Meanwhile we have these horrible diseases that are killing people or crippling them for life and they're virtually unfunded.....
Hope you don't mind me gate-crashing.

I appreciate your point about ME/CFS and climate change both being belief systems but they are on entirely different scales.

There will always be climate change believers, agnostics and naysayers. You can produce all the stats that you care to and all you are going to demonstrate are associations. You can produce plausible models but they may still not be persuasive enough to convert. You can make predictions about future events but even when they come to pass, they can be conveniently ignored. [I remember being told in a university lecture in the late 80s that the oceans were a sump and that they could act as a buffer to rising surface temperatures. Over the last few years, I've often thought 'looks like old Prof Grace was right, then']

We can take heart that it is pragmatic to test interventions on ME/CFS (unlike the effect of carbon release on climate change). The pay off can be seen in a matter of months as opposed to decades or centuries. There will always be diehards but how many converts will we get, especially from present day agnostics. Once effective treatment is demonstrated, ME/CFS as a psychological illness will no longer be a belief system people are attracted to. There will just be a lot of clever buggers who know how to help us.
 

redaxe

Senior Member
Messages
230
Hope you don't mind me gate-crashing.
I appreciate your point about ME/CFS and climate change both being belief systems but they are on entirely different scales.

Whoa whoa whoa, slow down a sec I wasn't saying that ME/CFS was a belief system just merely pointing out that governments world-wide have spent huge sums of money trying to research and understand environmental phenomena that could have been better used to do a bit of research on us and then we could go back to being the lovely tax payers that they want us to be:)
 

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
Whoa whoa whoa, slow down a sec I wasn't saying that ME/CFS was a belief system just merely pointing out that governments world-wide have spent huge sums of money trying to research and understand environmental phenomena that could have been better used to do a bit of research on us and then we could go back to being the lovely tax payers that they want us to be:)
Oh! Total wrong end of the stick, there. Sorry. Now that I have gone back to read properly, I see your point. [Slaps forehead].

But global warning and climate change will cause a huge amount of suffering and death. Research on global warning is not money down the drain.

Researching penis size on the other hand. That may have been money better spent.
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
I'm going to go further and be a cynic and point out for a moment the billions of dollars that's been spent on trying to fight anthropogenic "climate change" - but how many lives has global warming taken? Meanwhile we have these horrible diseases that are killing people or crippling them for life and they're virtually unfunded.....

Billions of dollars are spend on research on infectious diseases each year. Australia in particular spends far more money on research of 'neglected tropical diseases' than ME or CFS.

Likewise deady heatwaves which are becoming far more common in the last decade kill many thousands...

http://www.salon.com/2015/06/03/glo..._why_indias_deadly_heat_wave_cant_be_ignored/

The effort we have put into combating climate change has mostly been of token value and creative accounting on stuff we would have done anyway, rather than genuine effort to change course.
 

allyann

Senior Member
Messages
418
Location
Melbourne Australia
Maybe a way forward would be to speak to our specialists about this? Maybe if we all ask our specialists maybe they can collectively be ready once these trials are completed
 

redaxe

Senior Member
Messages
230
Likewise deady heatwaves which are becoming far more common in the last decade kill many thousands...
http://www.salon.com/2015/06/03/glo..._why_indias_deadly_heat_wave_cant_be_ignored/

That might be true but we also haven't had the capability to record the full death toll of previous heatwaves in the poorer tropical countries until relatively recently so it's hard to get real good statistics on this - even today. The fatality rate could be exacerbated by lack of access to clean drinking water. Dehydration is really what causes death from heat waves.
50 years ago these types of events could have been as common but without global communication they were simply unreported.

Australia has actually had a lot of heatwaves in the early 20th century, one in 1896 killed 437 people which is a lot considering the population of the country at that time which was about 4 million. If that was relative to India's population density the number could be in the 10,000s at least.
 

redaxe

Senior Member
Messages
230
Maybe a way forward would be to speak to our specia
lists about this? Maybe if we all ask our specialists maybe they can collectively be ready once these trials are completed

That's probably the way forward. Hopefully if more trials get started (like in the UK) news will spread and hopefully we will see some Private doctors that start the process. We do have doctors here that specialise in CFS/ME patients but most of them seem to be into alternative medicine. Some of that can help patients but we really need some specialised immunologists.

If these Norweigan fellas can then work backwards and figure out a biomarker to start classifying ME/CFS subgroups that would also be a huge step in the right directon


Researching penis size on the other hand. That may have been money better spent.

Now lets have a thread on this subject :D
 

EtherSpin

Senior Member
Messages
257
Location
Melbourne , Australia
It's a nice idea, but...

I'm not sure about the generalisibilty of the effect of Rituximab on Fatigue in RA (which can cause fatigue on its own...)
.
that would I suppose depend on a few things, what severity level of CFS we are talking about, when the CFS began vs the RA and then, to what degree does the CFS improve.. near total remission in a patient in the "severe" category ?
thank you for the anecdote about the guy himself, Ill have a word with my own CFS doctors and ask if they've heard anything on the grapevine, they themselves unfortunately may dismiss it as their prime focus is the gut - i hope not
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Let me point out we have a Federal election coming up in a year or so. Advocacy could focus on all major parties prior to the election, and then the winning parties after the election. I also think that as health is primarily about state governments we should be looking at getting them to push the Feds for solutions.
 

EtherSpin

Senior Member
Messages
257
Location
Melbourne , Australia
well actually it could be much sooner (election) Abbott in my opinion was trying to wedge labor on a few topics that would allow him to paint them as soft on terrorist threats and knock them down in the polls so he could use the triggers he had sitting around to launch a double dissolution election. the other thing to watch, in the post spill party meeting he was warned to have the polls in better shape by september (they are similar,a little worse?) so he might try to preempt moves against him.

I like this stuff though, Rudds wife Therese actually tweeted my election graphics to her 40k+ followers on the night before the last election and Tony Burke has retweeted my stuff a couple of times. I want to meet with Jenny Macklin about DSP inadequacy at some point too - things like no super contributions for us when we are on something that (medical costs taken into account) is worse than minimum wage