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By Kent Atkinson of NZPA
Wellington, April 21 NZPA - New Zealand's blood banks plan to reject donors with a record of chronic fatigue syndrome (CFS).
The move follows research overseas which has raised concerns about the potential for a recently identified virus XMRV to spread through blood transfusions.
XMRV is a retrovirus, a kind of virus that inserts its genetic map into the cells it infects -- something that can have a variety of effects, including killing the cell or turning it cancerous by affecting its genetic makeup.
It was first detected in prostate cancers in 2006 and has been found in 27 percent of such tumours, especially aggressive tumours.
There is now conflicting evidence surrounding a link to CFS, which is also known as ME in New Zealand where there are reported to be 20,000 sufferers.
Canadian authorities have already imposed a lifetime ban on former CFS patients donating blood.
They took the precautionary step earlier this month, based on US research that showed the retrovirus may be transmissible through infected blood.
Across the Tasman, Australia's Red Cross Blood Service is also reviewing its donation guidelines.
The national medical director for New Zealand blood banks, Peter Flanagan, told NZPA the NZ Blood Service (NZBS) would be adopting a similar approach to that being developed by the Canadian blood services.
The NZBS reviewed the issue at a meeting held earlier this month and decided the present exclusion of blood from people still suffering CFS or patients who had been diagnosed in the past two years "should be extended to also exclude donors who report ever having been diagnosed with chronic fatigue syndrome," he said.
The decision was made despite a lack of good scientific data on the issue, he said.
Of the 97 CFS patients excluded from donation in New Zealand over the past 11 years, 12 have recovered and subsequently donated blood at least once.
New Zealand health officials have known of the potential linkage since at least October last year.
A US study of blood samples taken from 101 people with CFS found 95 per cent also showed evidence of XMRV infection.
CFS was first identified in New Zealand, when West Otago doctor Peter Snow identified what became popularly known as "Tapanui flu". Research he published with two Otago University academics attracted international attention despite scepticism by some elements of the medical profession claiming the severe debilitation was a psychological condition, or "yuppie flu".
After hundreds of Americans in Nevada also developed fatigue and memory problems after suffering flu-like symptoms, the US Centres for Disease Control labelled the illness chronic fatigue syndrome, which led to many patients being labelled as malingerers.
But the identification of the XMRV retrovirus in CFS patients at a private US institute supported the late Dr Snow's initial suspicions the disease was caused by a virus. XMRV was also found in 2006 in some prostate cancer patients.
Researchers are now trying to work out how the virus is transmitted, whether it is the cause of CFS, or an opportunistic infection which triggers other underlying conditions and viruses and how people could be screened for the virus in a simple lab test. If it is confirmed as a cause of CFS, researchers will want to know if it requires an environmental trigger, such as stress, to affect the patient.
There is an anti-HIV drug, Isentress, which was effective against XMRV, according to Utah University researchers.
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Comments
I am a XMRV+ Kiwi and need
I am a XMRV+ Kiwi and need help
Born and Bred in NZ and tested for XMRV at a laboratory in the USA (mentioned above) and am positive for the retrovirus XMRV.
This follows over 25 years of very poor health and a high level of disability. Terrible suffering due to a lack of understanding and treatment by doctors.
Diagnosed with ME or "Tapanui Flu" as part of the epidemic in the mid-80's in New Zealand.
We were let down by New Zealand's health services and by all the government agencies who should have helped us.
We even suffered the ridiculous name of "chronic fatigue syndrome" being thrust at us, when no patient world-wide thought that it was appropriate or descriptive of the disease.
Why not call cancer, Chronic soreness syndrome? I don't have fatigue, I have an incurable and devastating virus. It was the wrong thing to do and part of a attempt to denigrate patients.
New Zealand should have resisted this for us and looked after it's vulnerable people with ME.
For the past 25 + years I have had a sore throat, glands and been to weak to bathe, cook or look after myself for long periods of time. As I type this I am fighting yet another infection for which yet another course of antibiotics will be used.
25 years of opportunistic infections like the ones that people with AIDS get.
People with CFS are said to be as sick as someone with final stages AIDS, yet we were subject to a campaign to push this disease under the carpet. Patients died of heart disease and cancer younger than the general population, often after decades of terrible suffering.
Dr Snow, Professor Murdoch and Dr Holmes did a great job for people with ME in NZ.
Dr Holmes (Otago) Medical School saw a retrovirus in our blood in 1992! Prof Murdoch spoke publicly about how similar this was to AIDS and how likely it was that another retrovirus caused it.
Yet, they could not get support and funding from the NZ authorities. People like me were left to rot in our beds.
Patients were marginalised and denied proper testing and treatments and benefits.
What a waste of life. This still continues as there is no cure for XMRV and the treatments have not been tested on any patients. It may take a cocktail of drugs (like HIV needs).
We need an urgent program of testing and treatment to be set up in New Zealand. No more deaths, suicides and wastes of young lives like my own.
You said you were "tested
You said you were "tested for XMRV at a laboratory in the USA (mentioned above)" could you give more details of how to get this done. I became ill in 1990 and have never been the same since - I had my blood sample sent to Dr Snow who confirmed that I was suffering from ME however since then I do not know that I have found anyone that I feel believes that I am truly ill (including my husband!) I went from a very energetic and go getter to being a weak bed mite - I have survived but would love to have a definite answer to my condition - I know it's not in my head. Please let me know how to get this test done. Thanks.
What year did you become
What year did you become ill? I became very sick in 1984 in New Zealand and I'm still sick today. I haven't been tested for XMRV yet and was wondering whether it had would show up in New Zealand patients. When/where were you tested? Did you go to the US or send your blood from New Zealand?
I couldn't agree more with
I couldn't agree more with the first commentator. I too have been sick since 1983/84 and know others who fell ill at that time who are still ill today. I have only survived because my parents looked after me. We had no help from any services - Mum had to leave her job. At 44, I've lost so much of my life. I really hope the treatment trials being discussed will lead to treatment in New Zealand and that Pharmac will take this illness seriously. The ignorance and down right neglet has gone on far too long.
My test was done through the
My test was done through the VIP dx lab in the USA and my bloods sent to them.
I became ill at the end of 1983/ start of 1984.
Sadly there is a huge waiting list for XMRV test kits and they have now restricted access to testing.
My advice would be to wait until they release a new more sensitive test in their Summer 2010.
It's looks as if Otago Uni is doing some research into XMRV
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University of Otago Division of Health Sciences.
Indicative projects for 2010:
XMRV as a potential cause of chronic fatigue syndrome
Supervisor: Professor Warren Tate
"Currently there is no diagnostic test for Chronic Fatigue Syndrome (CFS) although millions world wide are affected with the syndrome. A very recent Science paper (9.10.09) has linked CFS with a rodent retrovirus XMRV (rather like HIV-1) that can as well cause aggressive prostate cancer.
About 70% of the affected group had evidence of the virus compared with only 4% of the control population. My lab has done developmental work on a rogue RNAse L cleavage fragment for a biomarker since it is claimed to be specific for CFS and indirectly to deplete affected cells of 50% of their ATP. We would like to examine the virus and its translational mechanisms as a potential drug target and establish the RNAse L fragment as a biomarker."
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Also USA researchers are looking at drugs to fight the virus.
Forty-five compounds, including twenty-eight drugs approved for use in humans, were evaluated against XMRV replication in vitro. We found that the retroviral integrase inhibitor, raltegravir, was potent and selective against XMRV at submicromolar concentrations, in MCF-7 and LNCaP cells, a breast cancer and prostate cancer cell line, respectively. Another integrase inhibitor, L-000870812, and two nucleoside reverse transcriptase inhibitors, zidovudine (ZDV), and tenofovir disoproxil fumarate (TDF) also inhibited XMRV replication. When combined, these drugs displayed mostly synergistic effects against this virus, suggesting that combination therapy may delay or prevent the selection of resistant viruses.
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There is hope for us but we need clinical trials of these drugs NOW and support for patients who are severely affected by the virus.
"My test was done through
"My test was done through the VIP dx lab in the USA and my bloods sent to them."
Did you have to travel to the US to have the blood collected.
They will not accept samples less than 24 hours old and so getting it their within 24 hours from NZ might be near impossible.
Fedex can get the blood
Fedex can get the blood there from some parts of NZ, within times acceptable to VIP dx
You need to talk to them (Fedex and VIPdx) and negotiate it first.
The big problem was getting the test kit. A USA patient sent it to me. I launched an "appeal" on CFS patient sites on the internet.
Then I had to convince VIP dx.
Plan what you intend to do first and how long it will take. Talk to all the international couriers in your area. Plan how you intend to draw the blood.
Then present this to VIP dx as a proposal. Don't expect them to do the work.
They may allow you some lee-way on the understanding that they will not run the test if your blood is not viable.
I have very limted strength to type.
I contracted ME in 1993 and
I contracted ME in 1993 and I improved over eight years and than fell sick again for 14 months and now I am having another bout. I have always thought that HIV and ME were closely related. It is true to say we have not had normal health since 1983/4. I agree that not enough is done to help those with ME although their are some valiant GP's out there. MS is also neglected in research, so it shows you how hard it is to get these illnesses cured. I am disgusted with the UK's cynical drive to have this illness catorgorised as psychological. I believe this is financially motivated. I would like to say to many New Zealand doctors, if we cannot give blood, how about giving us appropriate help and treatment. Clearly if we cannot give blood we have tainted blood. I realise this post is late, but hope someone reads it. Given how anonymous many in the New Zealand medical profession would like it's ME community to be, just go to bed and go away...I will leave the nic.