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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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It is my understanding that Drs. Light, Light, Singh and Bateman have been working on two studies. The first was the addition of an XMRV component to the original Exercise Study participants (original patient group had and n=32; original study - J of Pain, Nov, '09?). The second study involved 100 CFS patients and 200 controls. This was in late March (I gave blood samples on 3/23). As for what was found or when to expect publication, I don't know.
3-Which brings us to the third study that is also being held up and that's the NIH study. Again rumors abound and I've read "reliable" reports of 80 to 95% in CFS patients and 3 to 7% of HC*** (This number seems to come from the slide given at the IPFA/PEI 17th Workshop on 'Surveillance and screening of Blood Borne Pathogens' in Zagreb. The slide states that XMRV and MLV's are present in the blood supply at 3 to 7% so those numbers are ambiguous at best) Totals unknown
Sources also say that the CDCs study, which utilized both antibody testing and PCR testing, did not find XMRV in any of the ME/CFS patients it tested. In addition, the CDC tested 22 independently confirmed positive controls from different labs, but in the CDCs experiment none of those confirmed 22 was positive. The CDC also tested negative controls and found them all negative as well.
Really? REALLY? I've never heard of this happening after papers have been put out for publication. And are CDC and NIH considered the same agency in this regard? Yes, it might go on within an agency long before the papers leave the building.
Let me just say that no government scientist that I know would agree that scientists would want to reconcile differences in the research results of different agencies before the research is published. That's just not how science works. Science publishes the results of the research as the researchers found them and the international scientific community makes independent assessments about the reasons for discrepancies.
Exactly. So why pull both? If they're not sure which is "right", they publish both, they don't pull both. CDC and HIH are not the same agency. I can't imagine HHS has the right to tell those agencies that they are required to pull their papers. And if they did, why did they wait until they were peer-reviewed and ready for publication? It they cared that much about image issues, they could have done something much earlier in the process.
WRONG! The studies have already been peer-reviewed. Unless government officials want to play Gods of peer-review. Are they going to start judging the peer-reviewers now???!!! Un____ believable!
So none of these government agencies had any clue that they had conflicting findings until after they submitted their papers? I find that hard to believe.
It is unsurprising that contaminated blood is what driving the FDA/NIH study, whereas the CDC have more reasons not to find XMRV, than they have to prove it.
Kurt, sweety, sometimes I think you make things up. Either that or you worked on a whole different planet. (grins) But I love ya Woof!
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. If you want, I will make this a separate thread - if you are a moderator, feel free to move this.
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.
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:
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.
B.Sc. (biochemistry), B.Inf.
(I have omitted inclusions for brevity.)
Statement from Dr. Harvey Alter, transmitted by the NIH Office of Communication and Public Liaison: "Our paper has not yet been accepted for publication. My colleagues and I are conducting additional experiments to ensure that the data are accurate and complete. Our goal is not speed, but scientific accuracy." Harvey Alter, M.D
For more information please see http://www.cfids.org/xmrv/default.asp