possible letter to the Australian Health Minister

[alex3619]

Hi

I have a draft letter to send that still needs a lot of rewriting. I thought I might try to get some feedback from the PR community first. I have restarted this in a thread on its own. I can already see some minor alterations I would like to make, and if I wait a day or two the actual Science commentary will be out.

I think something similar to this needs to be sent to every government health minister on the planet. A big task, but hey, send it to your local ministers and pass the message along.

We have just had a new PM appointed, I will have to check that the health minister is unchanged and haven't done this yet.

Bye
Alex

The Hon Nicola Roxon MP, Minister for Health and Ageing,

I have sent you two previous emails about the risks from the transmissible retrovirus XMRV. I have requested that you commence planning to deal with this potential pandemic, but that acting on this planning had to wait on the science. The science debate is largely over, the time to act is now. Even if pathogenicity is later disproved, this is not something we can delay acting on.

This email is being sent to every health and shadow health minister in Australia. It is also being sent to selected media outlets and CFS patient information forums. A full list is included at the end, as is a copy of each of my previous two emails. I intend to send a similar updated email after every major new scientific publication. There are at least twenty two studies awaiting publication that I am aware of. Many more studies have commenced.

This action is prompted by the USA DHHS delaying or stopping publication of two important scientific papers on this topic that were about to be published and have passed peer review:

http://news.sciencemag.org/sciencein...old-as-xm.html

This science insider article is a preview of the upcoming longer article in Science.

Just to recap the science, pathogenicity of this virus is not proven, but transmissibility is all but proven, as is prevalence. The original science has now been confirmed by two US studies from the FDA and NIH, both of which await publication. The prevalence of XMRV in the healthy population appears to be between 3 to 7%. This does not include prevalence of the sick, disabled or dying. This virus is now linked to prostate cancer, autism, atypical multiple sclerosis, fibromyalgia, chronic fatigue syndrome, myalgic encephalomyelitis, and Gulf War syndrome, and suspected of being linked to breast cancer. Several of these illnesses are growing in incidence, as you are aware. The virus does not contain an oncogene, but it is a retrovirus with a hormone response element. It inserts into the DNA and is hypothesised to confer hormone sensitivity to nearby genes. This includes oncogenes, which can then be switched on by stress or sex hormones (male and female). The neuroimmune diseases it is linked to are all very similar, with similar biochemistry and symptoms. The virus appears to require an immune trigger before causing disease, and is suspected of being a risk with vaccination in those with the virus - but vaccination will only cause a premature trigger as these people are already at high risk. The lifespan of CFS patients might be twenty five years less than the rest of the population.

There might be two million Australians already infected by XMRV, many of whom are disabled, all of whom are at risk. Even a conservative estimate would now have to be 660,000 healthy Australians infected with XMRV.

I was very pleased that the Australian Red Cross Blood Bank has indefinitely deferred the donation of blood from patients with CFS. However, this is only a small subset of people with the virus, many of whom are still healthy. Like with HIV, XMRV can lie dormant for years or decades before causing illness or death. Those infected but not yet sick may be capable of spreading the virus, and there is no barrier to their donating blood.

Three antiretroviral drugs are known to treat XMRV in the lab. Off-label treatment with these drugs is anecdotally reported to be achieving good results after three months of treatment.

Several feature documentaries are currently being made that deal with these issues.

The time for action is here. Please let me know as soon as possible what your preliminary action is likely to be, and keep me updated with further information as you make it public.

As this is an election year, this might well be an election issue.

What needs to be done:

1. Immediate and ongoing government consultation with world experts needs to commence.

2. Australian scientific studies on this virus need to commence, so funding needs to be made available as a national priority.

3. Preliminary steps need to be undertaken to commence antiretroviral trials in Australia, prior to coverage under the PBS. Coverage should include both XMRV testing and treatment protocols. This is particularly important to those already disabled by this virus as most will struggle to afford testing or treatment.

4. Blood banks need to be screened for XMRV contamination prior to the development of XMRV neutralizing methodologies. Stored blood samples might be tested so we have an idea of who this virus has already been transmitted to though the blood banks.

5. Free or subsidized testing needs to be offered to the entire public to allow us to identify who has the virus so that public health education can commence.

6. A public health education campaign needs to commence to prevent undue panic. This virus is probably treatable, but not curable.

6. Work needs to commence on a vaccine against this virus. It is very important to get the science right as vaccination with an ineffective vaccine can trigger the virus. This virus is simple with a slow mutation rate, so developing a vaccine should be very easy.

The you for your urgent attention to this matter.

Bye
Alex Young
B.Sc. (biochemistry), B.Inf.

(I have omitted inclusions for brevity.)

 

[Melodie]

Alex, I got your message on the other thread, thanks. There is a rumour that the election may be called this weekend, so I hope you get some feedback soon about the letter so it can be sent before the election campaign circus begins.

 

[boomer]

Thank you Alex, I just sent your email to the Deputy Minister of Health Canada too.

 

[alex3619]

Hi boomer

I am pleased that you sent my email to the Canadian Health Deputy Minister. It is amusing that they might get it several days before the Australian minister: the magic of the internet. Maybe I can blame it on time travel. ;-) I guess I'd better get to work tracking down all those email addresses...

Bye
Alex

Thank you Alex, I just sent your email to the Deputy Minister of Health Canada too.

 

[Melodie]

Alex there is a typo (only one?!) at the end ""thankyou" for your urgent attention'. One thought - where you mention the testing and I know you want to get thisa away quickly, just if you could say the importance of getting some testing in place with the right methodology - crucial for... I can't think rightnow but you know what I mean.

 

[alex3619]

thanks Melodie

 

[alex3619]

Hi Melodie

The election campaign ... could be in our favour. This could be an election issue. Which is why I want to send it to shadow ministers, etc.

bye
Alex

Alex, I got your message on the other thread, thanks. There is a rumour that the election may be called this weekend, so I hope you get some feedback soon about the letter so it can be sent before the election campaign circus begins.

 

[usedtobeperkytina]

Hi

The Hon Nicola Roxon MP, Minister for Health and Ageing,

I have sent you two previous emails about the risks from the transmissible retrovirus XMRV. I have requested that you commence planning to deal with this potential pandemic, but that acting on this planning had to wait on the science. The science debate is largely over, the time to act is now. Even if pathogenicity is later disproved, this is not something we can delay acting on.

This email is being sent to every health and shadow health minister in Australia. It is also being sent to selected media outlets and CFS patient information forums. A full list is included at the end, as is a copy of each of my previous two emails. I intend to send a similar updated email after every major new scientific publication. There are at least twenty two studies awaiting publication that I am aware of. Many more studies have commenced.

This action is prompted by the USA DHHS delaying or stopping publication of two important scientific papers on this topic that were about to be published and have passed peer review:

http://news.sciencemag.org/sciencein...old-as-xm.html

This science insider article is a preview of the upcoming longer article in Science.

Just to recap the science, pathogenicity of this virus is not proven, but transmissibility is all but proven, as is prevalence. The original science has now been confirmed by two US studies from the FDA and NIH, both of which await publication. The prevalence of XMRV in the healthy population appears to be between 3 to 7%. This does not include prevalence of the sick, disabled or dying. This virus is now linked to prostate cancer, autism, atypical multiple sclerosis, fibromyalgia, chronic fatigue syndrome, myalgic encephalomyelitis, and Gulf War syndrome, and suspected of being linked to breast cancer. Several of these illnesses are growing in incidence, as you are aware. The virus does not contain an oncogene, but it is a retrovirus with a hormone response element. It inserts into the DNA and is hypothesised to confer hormone sensitivity to nearby genes. This includes oncogenes, which can then be switched on by stress or sex hormones (male and female). The neuroimmune diseases it is linked to are all very similar, with similar biochemistry and symptoms. The virus appears to require an immune trigger before causing disease, and is suspected of being a risk with vaccination in those with the virus - but vaccination will only cause a premature trigger as these people are already at high risk. The lifespan of CFS patients might be twenty five years less than the rest of the population.

There might be two million Australians already infected by XMRV, many of whom are disabled, all of whom are at risk. Even a conservative estimate would now have to be 660,000 healthy Australians infected with XMRV.

I was very pleased that the Australian Red Cross Blood Bank has indefinitely deferred the donation of blood from patients with CFS. However, this is only a small subset of people with the virus, many of whom are still healthy. Like with HIV, XMRV can lie dormant for years or decades before causing illness or death. Those infected but not yet sick may be capable of spreading the virus, and there is no barrier to their donating blood.

Three antiretroviral drugs are known to treat XMRV in the lab. Off-label treatment with these drugs is anecdotally reported to be achieving good results after three months of treatment.

Several feature documentaries are currently being made that deal with these issues.

The time for action is here. Please let me know as soon as possible what your preliminary action is likely to be, and keep me updated with further information as you make it public.

As this is an election year, this might well be an election issue.

What needs to be done:

1. Immediate and ongoing government consultation with world experts needs to commence.

2. Australian scientific studies on this virus need to commence, so funding needs to be made available as a national priority.

3. Preliminary steps need to be undertaken to commence antiretroviral trials in Australia, prior to coverage under the PBS. Coverage should include both XMRV testing and treatment protocols. This is particularly important to those already disabled by this virus as most will struggle to afford testing or treatment.

4. Blood banks need to be screened for XMRV contamination prior to the development of XMRV neutralizing methodologies. Stored blood samples might be tested so we have an idea of who this virus has already been transmitted to though the blood banks.

5. Free or subsidized testing needs to be offered to the entire public to allow us to identify who has the virus so that public health education can commence.

6. A public health education campaign needs to commence to prevent undue panic. This virus is probably treatable, but not curable.

6. Work needs to commence on a vaccine against this virus. It is very important to get the science right as vaccination with an ineffective vaccine can trigger the virus. This virus is simple with a slow mutation rate, so developing a vaccine should be very easy.

The you for your urgent attention to this matter.

Bye
Alex Young
B.Sc. (biochemistry), B.Inf.

(I have omitted inclusions for brevity.)

I don't know about email grammar. But in newspapers, the proper grammar is "e-mail". It is short for electronic mail.

"I have requested that you commence planning to deal with this potential pandemic, but that acting on this planning had to wait on the science."
From my understanding, only two independent clauses should have a comma before the conjunction or a list of items. Since you have "that" it is not an idependent clause, but a preposition clause, thus dependent. So shouldn't have a comma before "but".

I don't think it is accurate to say the science debate is largely over. Depends on what "science" you are speaking of. The existence of the virus, well, that is largely over. The infectious nature. That is largely over. The prevalence or idea it causes illness, that is not over by any stretch. That debate is at its peak, with negative and positive studies coming out just on prevalence in patients, studies into cause of disease- I don't know of one published yet. Has one showing cause in rostate cancer been published? So you might want to make that sentence more clear or remove it.

"twenty two studies awaiting publication that I am aware of". Personally, I would not put that in a letter unless you have firsthand knowledge of this or someone has reported it citing the sources. Was this statement from researcher, WPI or CAA, in a news article or just posted on a message board anonymously? Just don't want you to hang yourself by exaggerating if you don't know of it yourself. "that I am aware of" might be misleading if you haven't got firsthand knowledge of each of them or it isn't from a reputable source. Maybe "heard of"? Oh, and "twenty-two" has a hyphen.

"The original science has now been confirmed by two US studies from the FDA and NIH, both of which await publication." This is confusing. Would it be better to say "the original report in Science magazine in October of 2009 has now..." And was it one study with two agencies or two studies. I thought it was one study with cooperation of FDA and NIH and not two studies.

"This virus is now linked to prostate cancer, autism, atypical multiple sclerosis, fibromyalgia, chronic fatigue syndrome, myalgic encephalomyelitis, and Gulf War syndrome, and suspected of being linked to breast cancer." This seems way too presumptious, if not inaccurate. It has been linked in studies to prostate cancer and CFS. That's it. All the others have not been in published study so no link, just hypotheticals. And if you put breast cancer, be sure it is a researcher who is suspecting this, in a public comment.

"The neuroimmune diseases it is linked to are all very similar, with similar biochemistry and symptoms." Again, I would not use the term "linked".

"The virus appears to require an immune trigger before causing disease, and is suspected of being a risk with vaccination in those with the virus - but vaccination will only cause a premature trigger as these people are already at high risk." I know of no studies that show this. Again, just hypotheticals at this point.

"The lifespan of CFS patients might be twenty five years less than the rest of the population." Now, I am going to say the opposite here. There is a study that shows this, Jason's, although I don't remember if it is 20 or 25. So this needs to be stronger than "might be". And "twenty-five" has a hyphen.

"There might be two million Australians already infected by XMRV, many of whom are disabled, all of whom are at risk." Same message here. Would be better to say, "Based on multiple published studies.... a conservative estimate would be that ....."

"2. Australian scientific studies on this virus need to commence, so funding needs to be made available as a national priority." I think you need to add an "s" to the first "need", if for nor other reason than to be consistent. (See your #1 also.)

Sorry if it is too late for these corrections. And sorry if you think I am nit-picky. But you asked.

Tina

 

[alex3619]

Hi Tina

I will take all your advice into consideration, thank you. Some of these issues I had figured out - it was a first draft, not the final piece. Some I want to think about. I plan on tracking down as many email addresses tonight, I haven't started yet and am about to crash for the day. Edits will still be possible for the next day and a half.

One thing worth thinking about however: while scientific accuracy is critical in writing to scientists, impact is more important in writing to politicians. I am going to have to think carefully about commentary that is accurate versus commentary that has impact - not that impact is ever an excuse for writing something blatantly misleading.

Its impossible to be too nit-picky, until I post everything is under consideration, but ultimately I will post what I am happy with. I gave up on grammar years ago, my brain wont process it any more, it is one of my limitations along with not remembering where I read things and sometimes using a totally different word than the one I wanted, and my sentence making no sense at all. I have less than half the mind I should have, but I can still do things if I slowly plug away at them.

Bye
Alex

 

[Ash]

I'd personally think along the lines of Tina & be a bit more conservative about disease linkage & stick to the published pair - Prostate Cancer & CFS.

The fact that it is an infectious retrovirus (like HIV, there is a parallel scare for them) with an extraploated really high prevalence rate in the general population & linked to those two common diseases (possibly causal with one of them being the "Big C") is enough to IMO...

Throw in some stats about estimated loss to the economy from CFS patients on DSP/not in the workforce & the shorter life expectancy info from Jason's research, the blood banks around the planet banning us from donating + the sus way this research was pulled/held should be enough to show the US Govt is worried about this & if the US Govt is worried, the Aussie Govt should be too.

It is your letter of course so up to you how you approach it - I'd be sensationalist/hypothetical with the media but professional/conservative with Govt.

Who did you want to send it to?

Nicola Roxon MP - Minister for Health and Ageing

Peter Dutton MP - Shadow Minister for Health and Ageing

Anyone else at federal level? They'll be contactable via those two sites.

State level is too daunting to start looking through for me atm sorry.

 

[Victoria]

Please let me know as soon as possible what your preliminary action is likely to be, and keep me updated with further information as you make it public.

Hi Alex,

I really think it's a bit presumptuous of you to ask a busy Health Minister to keep you, personally, up to date with information. For all you & I know, she may be inundated with hundreds of emails & requests & unable to answer you personally (even if she did remember your earlier 2 emails. Perhaps she hasn't even seen those earlier e-mails. Her secretary/personal assistant may scan all her emails first).

For all we know, she may delegate many tasks & communications, & depend upon a team to keep her up to date with what they consider urgent requests. I don't have the experience or knowledge of how Government Departments work in Australia (or any other country for that matter).

I have never been particularly concise in my own writing, but I feel your email is too long.

Your first sentence should stand alone as the first paragraph (& needs to grab the immediate attention of the person reading that email). At some other stage of your email, you can refer to the fact that you've written twice before.

If you don't grab their attention straight away, their attention will wander futher (as they read down the page).

Just my thoughts........

PS

so developing a vaccine should be very easy.

I believe this statement is very naive - developing a vaccine is never "easy". I would rephrase, or take this statement out. They spend months or even years (depending on the urgency) & do lots of trials before a vaccine is approved for human use.

 

[Melodie]

Alex and anyone needing contact details including email addresses of Federal Ministers,

There is a pdf file of Members of Parliament contact details on this page:
http://www.aph.gov.au/house/members/index.htm

Scroll down a little to;

" Contact list of Members of Parliament

* List of Members, Vol 85, 1 July 2010 (PDF 241 Kb) " and there is the list.

 

[alex3619]

Hi Ash,

I got CFS in Townsville, I used to live in Aitkenvale, and went to Pimlico State High.

I want to send the email to every state minister as well, plus the ABC, plus someone from the Greens. Maybe also someone from the Nats, I am not sure yet. I will look into it tonight, but I am about to become brain dead so it will have to wait a few hours.

I get the point you are making about keeping it simple and provable and to the point, I have advocated for that myself. Its why I never email straight after writing something major, as I always want to write a novel when I need to write a limerick.

Ideally it would be a 300 page thesis with 200 pages of references ... but I gave up on that when I had to quit my Ph.D. as I could no longer read nor write at the time. Politicians almost never read beyond page one however. The reason I wanted to say more is that this is a weapon. When we are ignored, but they were publicly warned, we have information that can be used for the next fight, beyond this one. I have no doubt this will still be a running battle in two or three years unless things turn out much better than I dare to hope. Fight this war, but plan to win the next one too.

Prior emails from me covered the economic cost, going back to October last year. This is an ongoing story with me, this is just the latest instalment. Even before XMRV, I had sent an email covering many of the primary issues, but I don't intend to resurrect that one as XMRV wasn't even in the picture.

I could say more, but I need to crash or fall asleep at the keyboard.

Bye
Alex

 

[alex3619]

Hi Melodie,

Federal contacts I have already posted to in the past, it is state contacts that I have yet to go looking for. Every government has a page somewhere with a list of all contacts. I just have to find them for every state and territory.

Thank goodness we don't have as many states as the USA!

Bye
Alex

Alex, there is a pdf file of Members contact details on this page: http://www.aph.gov.au/house/members/index.htm

 

[alex3619]

Hi Victoria,

Not presumptuous, I do not expect any reply even from a secretary (and Nicola has probably not seen any of my emails, she has staff to do that). This is about strategy. I have a long term game plan in mind, and no I wont be discussing all the details. This is an information war. Governments want to ignore us. When they do there will be a very public email trail showing that every disaster they have failed to deal with they were warned about, in detail, repeatedly, and that it was entirely forseeable. My real target will be whoever wins the next election anyway. This is one of the reasons I will be distributing this email far and wide. It is also why it is so long, this is deliberate and part of my game plan.

Of course if any of this results in real action I will be very pleasantly surprised. We needed action two decades ago, it is waaaay past time for it. I am still hoping that all the retroviral research will turn out to be wrong, but I think that is very very unlikely. The science is just too compelling.

This was only a first draft, and I will be rewriting it tonight, or at least I hope to. I agree with you about the first sentence, it is one of the things I want to focus on.

I do mean that it is very easy to make a vaccine, but if I had to explain what I meant by that it would be a twenty page document with hundreds of references. So I don't - politicians don't need all the science. XMRV is a highly conserved ultra simple virus with an extremely low mutation rate. We already know multiple highly conserved sequences on the envelope and elsewhere. Viruses we can spam out bodgy vaccines for in three months are much more complex with high mutation rates. Its all relative. I particularly want to emphasise that XMRV is not HIV, for which a vaccine may prove to be impossible. Maybe I will rewrite to say something to that effect. If they wanted to, they could have candidate vaccines in a couple of months, the real delay will be testing because this type of vaccine is entirely new. Hell, give me my health, twenty thousand bucks and a lab and I could design a vaccine in a month. Dead easy. Testing is not easy, an entirely different issue.

I am also struggling to make a shift from scientific arguement to political arguement. This has me in stuck in the twilght zone between the two, and I am still learning the rules. I am not natively a political animal.

Bye
Alex

Hi Alex,

I really think it's a bit presumptuous of you to ask a busy Health Minister to keep you, personally, up to date with information.

I have never been particularly concise in my own writing, but I feel your email is too long.

Your first sentence should stand alone as the first paragraph (& needs to grab the immediate attention of the person reading that email). At some other stage of your email, you can refer to the fact that you've written twice before.

If you don't grab their attention straight away, their attention will wander futher (as they read down the page).

Just my thoughts........

PS

I believe this statement is very naive - developing a vaccine is never "easy". I would rephrase, or take this statement out. They spend months or even years (depending on the urgency) & do lots of trials before a vaccine is approved for human use.

 

[cruzgirl]

Alex, I am very interested in what you are doing. I think it is great. Yes some of the replies make sence but in the end it is your letter. I would love to see your end letter and I will forward it on to the Canadian ministers as well. The more governments knowing about this can only help us in the long run. Thanks, Lynn

 

[alex3619]

Hi cruzgirl (Lynn)

Thanks for your reply. I fully intend to make my letter public, but I will probably split it into three parts for this forum as the inclusions (appendicies if you will) will make it long. I also intend to post the full letter on cocure, as is my usual practice.

I have severe limitations in what I can do, and what I can't do. I decided some time ago to go with my strengths and ignore my weaknesses, as it would burn me out to try to do everything the way I would like to, and something needs to be done even if it is imperfect. I would like to implore everyone to send their own letter, especially if you have a different viewpoint to me. Just make them public. We need a paper trail. Politicians like to use the "I didn't know" defence. If it is public this wont wash and they will probably try to use the "this didn't come from credible sources" defence. That is fine except for two things. One, I hope they will receive warning from many sources (and several times from me). Two, they are ignoring the published science and scientific debate.

Let me give you an analogy. Global warming is not a proven fact. Climate change, and in particular man-made climate change, are not proven facts. The IPCC report I recall had the probability of man-made climate change, including possible catestrophic climate change, at 90%. There was a 10% chance they were wrong (although obviously this was only a guess, I wonder how they came out with that number?) The issue here is something else: risk management. In risk management it is critical to look at both the probable case and the worst case scenario. Climate change is not proven, our contribution is not proven - so what? At a 90% risk (or pick some other number), with potentially catestrophic outcomes, there is a very clear case for substantial risk mitigation. Nobody can ever claim otherwise unless it can be proven the science is all wrong.

It is no different with XMRV. For the record, I do not believe that XMRV causes CFS or any other disease. I think it is very probable, and a compelling case can be made for both urgent research and preliminary planning for action. It is never too late to plan, and it is way past time we had enough decent research to properly manage the risk. We are basing public health policy on ignorance, not on good science - given the potential downside of XMRV this is equivalent to the same bungles made in the majority of great disasters in history, including the sinking of the Titanic and the Gulf of Mexico oil spill. AIDS in Africa is bad because HIV was ignored and denied for far too long. In risk management, as far as I am concerned, the onus is on naysayers to prove that it is wrong, not the other way around. Until then, risk has to be acknowledged, although the level of risk will be highly debatable. Please note that risk does not mean proof.

I will have more to say on the general principles of my strategy in later emails. Anyone who has been following my posts for the last year and half will see a definite trend - I am slowly refining my strategy as I go. We are in a war, just one that is about information and power, not violence, although there is no doubt that we are physical victims of this war. I have decided to treat it as such. Since there are many parts of society who are on our side, and many who simply don't know the issues, nobody can be considered an enemy, not even the strongest naysayers. Could you imagine the impact of someone like Reeves coming out and saying he was wrong? A highly unlikely scenario I admit, but it would really be something. The enemy is not people, it is bad science, bad reasoning, bad politics and bad policy.

I don't doubt I will get many things wrong in my campaign. I know I am not alone, and I know that doing nothing would be worse - that is enough for me. So I again implore everyone to do something that is within their ability, no matter how small. I can't change the world, but if a substantial portion of the (arguably) seventeen million people with CFS or ME did something even very small, the combined effect would be a tsunami.

Bye
Alex

Alex, I am very interested in what you are doing. I think it is great. Yes some of the replies make sence but in the end it is your letter. I would love to see your end letter and I will forward it on to the Canadian ministers as well. The more governments knowing about this can only help us in the long run. Thanks, Lynn

 

[alex3619]

Hi
For anyone who might be interested in contacting Australian ministers, they can all be found through the following link apparently (I am about to being using it instead of trolling through government links):

http://www.actnow.com.au/Tool/Whos_the_minister_or_shadow_minister_for__.aspx

Bye
Alex

PS I knew that was too easy. Some of the links don't work, and not everybody has a direct email address.

 

[alex3619]

Hi Tina

Nearly all of your suggestions have now been addressed. Thanks.

Bye
Alex

 

[jonc]

Hi Alex,

I think you (we) should try to get Get Up (http://www.getup.org.au/), the advocacy organisation, interested in this issue. They have tremendous experience and skills mobilising people around issues that they consider important.

They are currently campaigning around mental health issues, but I wonder if it would be possible to get them interested in this one as well.

- Jon.