Aussie Advocacy

[Snow Leopard]

The science behind XMRV is not yet clear. As patients, we should not be 'choosing winners', but merely pointing out the underlying facts - that CFS is far more common than the average person realises and has long been ignored by the government. It has the lowest ratio between research spending and societal impact on quality of life and economic costs, but despite this many abnormal biological findings have been found suggesting this is a biomedical disease that warrants a serious response.

Excessive emphasis on XMRV can be dangerous as it makes it seem like the answer is found and researchers need not bother looking at other novel hypotheses. It will also make us look like 'the boy who cried wolf' if this hypothesis turns out to be false.

 

[insearchof]

Hi Snow Leopard

The science is only 'not clear'to those who do not fully understand it in a way that they feel that they can confidently present a legitimate case for it IMO. There is sufficient science and other very strong factors that can and do make a very powerful case for XMRV. Perhaps you personally do not feel you can put such forward, but I feel otherwise.

In any event - what science in relation to CFS is clear and settled? If it was, we certainly would not be faced with the headaches that we have endured for nearly 25 years.

If your waiting for the science in relation to CFS to be clear, before you move forward and try to make a case - you never will and you will die waiting I am afraid.

I dont plan on doing that. I plan on putting forward the best case I can. That is after all, what advocacy is about. And right now, I really do not see what we have to loose. When you have nothing - you loose nothing.

XMRV is a scientific fact, that has not been successfully dismantled - even by the contamination camp. There are several threads here giving very intelligent discourses and arguments that make this very clear.

XMRV now presents as part of the body of facts that you say we should be pointing out. It is the most significant fact in many years, and for that reason alone, could justify stealing the lime light for one year!

Excessive emphasis on XMRV can be dangerous as it makes it seem like the answer is found and researchers need not bother looking at other novel hypotheses. It will also make us look like 'the boy who cried wolf' if this hypothesis turns out to be false.

I do not share your fears. What is the worst thing that could happen Snow leopard in that regard. What? That we wont have credibility? Do you really believe we have that currently ? Or is it that you fear that the millions of dollars in CFS research in this country will be diverted to another area of biomedical research?

Further, the boy who cried wolf, suggests that we would be moving forward with some sort of falsehood. The facts of the matter are anything but. An infectious retrovirus has been found by two independant research groups - from some of the most credible and prestigious institutions in biomedical research, who had their findings published in the most prestigious of scientific journals. This is not a finding made by an obscure group or goups published in a questionable journal. It has, as you well know, prompted interest from scientists all across the world with many countries investing in the research. It is solid and credible. Going forth and making a case on the basis of such would not be regarded as questionable and affect our credibility. It might not succeed, but I think your fears - that we might be questioned for doing so - are without foundation. This remark also suggests that we should simply sit back and let our Amercian friends stick their necks out on this matter, and let them do so - with Australians being more than happy to ride on the coat tails of their success, if they get lucky. This is not fair. I think a contingent of Australian activists need to support our American friends in this important and historic moment.


Australia has some of the worlds leading retrovirologists who could also make an important contribution - if the interest and the funding was made available.

At a very minimum, these fact can be used to pressure the government to channel research funding into XMRV in Australia.


ISO

 

[Snow Leopard]

You may not have noticed, but the scientific picture is showing that the association of XMRV with human disease is becoming less likely over time. I'm not merely talking about the negative studies either.
XMRV is only a 'fact' with relation to the cell cultures that are known to produce variants of it.

Some of us have been following it from the beginning and ask questions as to why the VIPDx patient results that I have seen don't quite match the statements that Mikovits has been making.

I obviously agree that ME/CFS is under-researched in Australia. But if we make out XMRV to be a more important hypothesis than it really is, then such a failure may result in researchers unwilling to take such gambles in the future, since they would like to avoid negative results. What we need to do is advocacy of research funding in general. If amongst fresh research grants, some researchers then decide to study XMRV in Australia, then all the better..

 

[insearchof]

Hi Snow leopoard

You may not have noticed, but the scientific picture is showing that the association of XMRV with human disease is becoming less likely over time

No, I have not noticed this because I don't consider it a valid observation and certainly notone that has any strongly probative evidence that would seriously lead me to arrive at this conclusion.

Some of us have been following it from the beginning and ask questions as to why the VIPDx patient results that I have seen don't quite match the statements that Mikovits has been making.

Yes some of us have been following it right from the beginning, myself included. Do you work at VIPDx and have access to all the test results, which would render your assessment of Mikovits statements, an accurate and educated one?.

Frankly, even if you were a doctor and saw results coming in from CFS patients - quantatively, the total sum of results that you would see would be so small, (especially given the very small number of Australian patients that have had access to testing )- to hold litte probative value.

obviously agree that ME/CFS is under-researched in Australia. But if we make out XMRV to be a more important hypothesis than it really is, then such a failure may result in researchers unwilling to take such gambles in the future, since they would like to avoid negative results. What we need to do is advocacy of research funding in general. If amongst fresh research grants, some researchers then decide to study XMRV in Australia, then all the better

''But if we make out XMRV to be more important hypothesis than it really is''

I am sorry, but I have not shared suggestions on how I would attempt to approach my advocacy iniatives on XMRV - so you are being very presumptious, I must say - suggesting that any campaign would overstate the case for XMRV.

And your logic, that if we elevated its importance would result in researchers being unwilling to take a gamble, does not sit with my understanding of scientists and scientific research in general.

Further, how does one down play a retrovirus with a biological footprint similar to HIV/AIDS, unless of course you are an HIV/AIDs denialist?

How do you contend that your ''advocacy of research funding in general'' approach - would be successful in light of 25 years worth of evidence that suggests otherwise?

ISO

 

[ixchelkali]

I notice that ABC radio health program is doing a program on the PACE trials on Monday. Just a heads-up.

http://www.abc.net.au/rn/healthreport/stories/2011/3192571.htm

 

[TinyT]

Thanks for the link, will do my upmost to tune in. Wonder if they'll let people call in?

It doesn't sound good

 

[alex3619]

Hi Alex,

did u do a final draft for your letter? and do u have any addresses etc for health ministers etc state and federal?

cheers!!!

http://forums.phoenixrising.me/show...etter-to-the-Australian-Health-Minister/page3

Post 29 on page 3 was my final letter, but I think two of the email addresses were wrong. In any case, all need to be rechecked because of the recent elections - things change in politics.

Bye
Alex

 

[alex3619]

I notice that ABC radio health program is doing a program on the PACE trials on Monday. Just a heads-up.

http://www.abc.net.au/rn/healthreport/stories/2011/3192571.htm

Hi, this link has a page with an active comments section. Should we not send in some comments or questions?

Bye
Alex

 

[Snow Leopard]

Why is Richard Horton, the 'Editor in Chief of the medical journal' going to be on the show? Can you say editorial bias!?!

 

[Sean]

Sharpe and Horton? That's it? The Health Report producers couldn't find a serious legitimate critic among the entire research/clinical community to bring a little balance? You are kidding me. Did you guys even try?

Plus the intro blurb is truly appalling prejudice:

"While this trial actually has some good news, the reactions from some people who claim to represent patients has been extraordinary."

A gutter level tactic straight from the Wessely school propaganda handbook, designed entirely to smear and dismiss criticisms in advance, especially from patients, before even hearing them.

Particularly disappointed seeing this in a program by Norman Swan, who does have a pretty good track record of challenging the medical establishment. Wanna bet that Sharpe and Horton are going to try to make out they are the ones battling against entrenched establishment prejudice and unscientific ignorance, blahblahblah?

However, let's see what is actually said before we go in with guns blazing.

 

[Snow Leopard]

Maybe we need someone like Dr Don Lewis or Dr John Graham on a subsequent show to provide background on ME/CFS and why CBT/GET are poor quality treatments.

Can someone record the show if possible? Or will the shows be posted online by ABC (unsure?)

 

[TinyT]

I have contacted the Triple J Hack program to suggest they do a report on ME/CFS research, politics, latest developments, etc.

My letter:

Hi Hack team,

I am writing to request an accurate and even journalist report on the latest research, politics and treaments for ME/CFS.

I would like to direct you to the website of the Health Report and recent controversy over its biased coverage of the PACE trial results in the UK. http://www.abc.net.au/rn/healthreport/stories/2011/3192571.htm

The Australian ME/CFS association also provides coverage of recent research into ME/CFS including the detection of an infectious retrovirus, XMRV, in blood cells of patientswith chronic fatigue syndrome. http://www.mecfs.org.au/latest-research-articles

Researchers at the NIH & FDA have also found murine leukaemia virus (MLV) in 86.5% of patients tested with ME/CFS.http://www.pnas.org/content/107/36/15874

While Australia has banned blood donations from any past or present patients with ME/CFS, Australia has taken no initiative to conduct research or testing into the link between ME/CFS and XMRV/MLV.

The Royal Australian College of Physicians [RACP] published clinical practice guidelines in 2002 which were condemned by patient advocate groups. These guidelines contained an overemphasis on psychological and psychiatric factors and largely ignored much of the biomedical research into ME/CFS. They have not been updated since.

Here are two concise summaries of biomedical abnormalities and research findings in ME/CFS.

http://esme-eu.com/resources-guidelines/ten-discoveries-about-the-biology-of-cfs-article35-112.html

http://www.mecfswa.org.au/UserDir/Documents/Biomedical Review.pdf

I have included some links for your information and reference.

This is from Dr. Jose Montoya, Associate Professor of Medicine, Division of Infectious Diseases at Stanford University. In this video he discusses CFS and current research regarding diagnosis and treatment and the possible CFS-infection connection. http://www.youtube.com/watch?v=Riybtt6SChU

Here is a link to the videos from the recent NIH: State of Knowledge Conference http://videocast.nih.gov/PastEvents.asp?c=0&s=21 and here is a list of the presenters and topics http://orwh.od.nih.gov/CSF 2011/newsEvents.htm

International ME/CFS/FM Awareness week is on the 8th - 14th May 2011, International ME/CFS/FM awareness day is the 12th of May.

I implore your team to provide a report on ME/CFS to commemorate the above awareness day/week.

Sincerely yours,

(NAME)

Here is a link to their website: http://www.abc.net.au/triplej/hack/

When you go to the contact tab you can suggest stories/news for them to cover.

I think it would be great if others could contact them and suggest they do a story for ME/CFS awareness day/week. We could also suggest good contacts for them (e.g. Dr Don Lewis, ME/CFS association, Alison Hunter Foundation, other researchers/clinicians etc.)

 

[insearchof]

Great work TinyT. Thank you!