K
Knackered
Guest
I had an idea we'd be finding out the new locations today, anyone have any idea if we will?
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WPI UK XMRV testing/study
- Thread starter JAS
- Start date
Countrygirl
Senior Member
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- 5,496
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- UK
QUOTE]
There is no news from PSI yet, I'm afraid. We are still waiting for a response and will let you know as soon as we do.
warmest wishes,
xmrvweb.me.uk
G
Gerwyn
Guest
Hi yes it was run on time and there was a consent form to fill in .The form also gave other info re the study.
K
Knackered
Guest
With flights being canceled in the UK chances are there won't be any draws until the volcano smoke's cleared, just a thought.
VillageLife
Senior Member
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- 674
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- United Kingdom
There was me complaining earlier in the week, that I might have to wait untill July for my results and now the volcano could hold things up!
Of course we don't have to use planes, how about a speed boat to get the samples to USA quickly...or a rocket, or carrier pigeons!
Of course we don't have to use planes, how about a speed boat to get the samples to USA quickly...or a rocket, or carrier pigeons!
I'm hoping for a few hints at the Invest in ME conference (before publication for any paper). The original XMRV hints were given there.
Although the volcano erupting has added to our delay we do have the Ashford samples off at least and someone can make a start on that (I hope). The Ashford bloods should be happily sitting in a couple of labs being worked on right now.
If we heard (for example) that 97% of bloods tested so far were positive, at the Invest in ME conference end of May, this would be a huge discovery for patients and quite high for individuals in the study.
All musings of course.
Although the volcano erupting has added to our delay we do have the Ashford samples off at least and someone can make a start on that (I hope). The Ashford bloods should be happily sitting in a couple of labs being worked on right now.
If we heard (for example) that 97% of bloods tested so far were positive, at the Invest in ME conference end of May, this would be a huge discovery for patients and quite high for individuals in the study.
All musings of course.
- Messages
- 76
villagelife said:Would a speed boat get the samples to USA quick enough...or a rocket....or pigeons.
I say go with the speed boat or rocket for blood samples, since this pigeon is very large i reckon it should be used exclusively for flights over Wessley's & McClure's heads
.There is an update on the UK study website: http://www.xmrvweb.me.uk/index.html
Reading the Invest in ME Newsletter, as thought Invest in ME funded the study after the Kerr study was pulled, but when more of us applied to be included WPI funded us out of their own pocket
Reading the Invest in ME Newsletter, as thought Invest in ME funded the study after the Kerr study was pulled, but when more of us applied to be included WPI funded us out of their own pocket
- Messages
- 76
a big thankyou to all those involved in updating us with this new info.
omerbasket
Senior Member
- Messages
- 510
WPI's people can be described in one word: Angels. They are just angels.
bullybeef
Senior Member
- Messages
- 488
- Location
- North West, England, UK
Questions & Answers week commencing 12th April
Is the XMRV testing in the UK study definitive, i.e., if you test negative with this UK Study then you will not have XMRV?
The answer right now is yes. While the assays are still the first generation assays, we will be using the samples in several newer and more sensitive assays and a better serology test.
Is someone less likely to test positive if in a 'better' patch or even if in a remission?
Because we do all four tests in the Science paper, including serology, it does not matter if we don't isolate virus. If you have an antibody to the virus in your blood, you are infected. That is also why it does not matter if you take supplements, medications or immune boosting drugs
When will people receive their results?
It was originally reported that they would hear within three weeks. We do certainly appreciate the disappointment and will tell everyone their results as soon as possible, but encourage everyone that the purpose of the study is to show that XMRV can be detected in ME/CFS patients in the UK. While we do not have treatments or know what role the virus may play in the pathogenesis, this study is vital in order to show that XMRV may indeed be a world-wide public health concern and so compel governments and other organisations to support research and drug development.
How likely is it that XMRV is pathogenic in humans? Is there a possibility that it is just an innocent passenger virus that does not cause disease or symptoms?
This question can be answered by these kinds of larger studies. While it is a possibility that XMRV is not causing symptoms/disease, HTLV and HIV, the other two eogenous human retroviruses both cause immune deficiency, cancer and neurological disease. Of course, HTLV-2,3,4 and HIV-2 are far less pathogenic than other viruses in this family but that is why research is warranted and necessary!
Immunoglobulin injections/infusions are one of the treatments prescribed for ME. Is it possible, especially as each dose is reputed to be manufactured from thousands of different donors, that XMRV could survive the treatment process and infect the recipient?
It is more likely that antibodies from infected donors that are protective in the donor actually provide the therapeutic benefit.
Is XMRV capable of dysregulating the GABA and NMDA receptors? It is hypothesised that this is the cause of the wired/exhausted symptom in ME.
It is more likely to be an indirect effect as such as damage from reactive oxygen, reactive nitrogen species, inflammation and insertional mutagenesis, but again no one knows and that is why we need research dollars. Our governments won't think we need research dollars if XMRV is not in sick people either prostate cancer patients or ME/CFS patients and that is the purpose of our current studies. We must find out where XMRV is and is not. It won't be everywhere. It could be like the HTLV1 endemic in the Caribbean and Japan.. Their governments spend lots of money because lots of people are sick or could get sick or develop cancer.
It was acknowledge that horses and dogs can develop a ME-type illness. (See Dr Ann Macintyre's documentary) It has been noted that dogs develop the condition following their third booster vaccination. Has it been established yet which animals can be infected with XMRV?
No one has detected XMRV in any animal other than humans. Research needs to be done to determine how XMRV got into the human population
Will the study also be determining the RNase L status of the samples too?
In the original Silverman study there was only one specific genetic variant of RNaseL where he found XMRV. Our original hypothesis was that a group of patients with the same genetic variant would have XMRV and CFS (the variant is ~15% of the North American population) We found no correlation with this variant in our study. These data are published in the supplement of the science paper, so we are not doing RNAseL testing as a part of the initial study, but it is certainly our hypothesis that there is something wrong with the IFN/RNaseL pathways, which plays a role in the susceptibility to XMRV, allowing it to multiply more in those cells.
Is the XMRV testing in the UK study definitive, i.e., if you test negative with this UK Study then you will not have XMRV?
The answer right now is yes. While the assays are still the first generation assays, we will be using the samples in several newer and more sensitive assays and a better serology test.
Is someone less likely to test positive if in a 'better' patch or even if in a remission?
Because we do all four tests in the Science paper, including serology, it does not matter if we don't isolate virus. If you have an antibody to the virus in your blood, you are infected. That is also why it does not matter if you take supplements, medications or immune boosting drugs
When will people receive their results?
It was originally reported that they would hear within three weeks. We do certainly appreciate the disappointment and will tell everyone their results as soon as possible, but encourage everyone that the purpose of the study is to show that XMRV can be detected in ME/CFS patients in the UK. While we do not have treatments or know what role the virus may play in the pathogenesis, this study is vital in order to show that XMRV may indeed be a world-wide public health concern and so compel governments and other organisations to support research and drug development.
How likely is it that XMRV is pathogenic in humans? Is there a possibility that it is just an innocent passenger virus that does not cause disease or symptoms?
This question can be answered by these kinds of larger studies. While it is a possibility that XMRV is not causing symptoms/disease, HTLV and HIV, the other two eogenous human retroviruses both cause immune deficiency, cancer and neurological disease. Of course, HTLV-2,3,4 and HIV-2 are far less pathogenic than other viruses in this family but that is why research is warranted and necessary!
Immunoglobulin injections/infusions are one of the treatments prescribed for ME. Is it possible, especially as each dose is reputed to be manufactured from thousands of different donors, that XMRV could survive the treatment process and infect the recipient?
It is more likely that antibodies from infected donors that are protective in the donor actually provide the therapeutic benefit.
Is XMRV capable of dysregulating the GABA and NMDA receptors? It is hypothesised that this is the cause of the wired/exhausted symptom in ME.
It is more likely to be an indirect effect as such as damage from reactive oxygen, reactive nitrogen species, inflammation and insertional mutagenesis, but again no one knows and that is why we need research dollars. Our governments won't think we need research dollars if XMRV is not in sick people either prostate cancer patients or ME/CFS patients and that is the purpose of our current studies. We must find out where XMRV is and is not. It won't be everywhere. It could be like the HTLV1 endemic in the Caribbean and Japan.. Their governments spend lots of money because lots of people are sick or could get sick or develop cancer.
It was acknowledge that horses and dogs can develop a ME-type illness. (See Dr Ann Macintyre's documentary) It has been noted that dogs develop the condition following their third booster vaccination. Has it been established yet which animals can be infected with XMRV?
No one has detected XMRV in any animal other than humans. Research needs to be done to determine how XMRV got into the human population
Will the study also be determining the RNase L status of the samples too?
In the original Silverman study there was only one specific genetic variant of RNaseL where he found XMRV. Our original hypothesis was that a group of patients with the same genetic variant would have XMRV and CFS (the variant is ~15% of the North American population) We found no correlation with this variant in our study. These data are published in the supplement of the science paper, so we are not doing RNAseL testing as a part of the initial study, but it is certainly our hypothesis that there is something wrong with the IFN/RNaseL pathways, which plays a role in the susceptibility to XMRV, allowing it to multiply more in those cells.
Countrygirl
Senior Member
- Messages
- 5,496
- Location
- UK
On behalf of the nameless three, thank you C.M. :Retro smile:
bullybeef
Senior Member
- Messages
- 488
- Location
- North West, England, UK
Based upon the following:
Is the XMRV testing in the UK study definitive, i.e., if you test negative with this UK Study then you will not have XMRV?
The answer right now is yes. While the assays are still the first generation assays, we will be using the samples in several newer and more sensitive assays and a better serology test.
Are the WPI stating now that there are no false negatives?
Is the XMRV testing in the UK study definitive, i.e., if you test negative with this UK Study then you will not have XMRV?
The answer right now is yes. While the assays are still the first generation assays, we will be using the samples in several newer and more sensitive assays and a better serology test.
Are the WPI stating now that there are no false negatives?
Countrygirl
Senior Member
- Messages
- 5,496
- Location
- UK
K
Knackered
Guest
Do any of you know why the WPI won't do anymore blood draws until after the Ashford group's been tested?
The only thing I can think of is that they're hoping to get enough possitives that they would need to test anyone else.
I hope this isn't the case I'd had my heart set on being tested.
Also: Why has the venues section been taken down on the website set up by countrygirl etc?
The only thing I can think of is that they're hoping to get enough possitives that they would need to test anyone else.
I hope this isn't the case I'd had my heart set on being tested.
Also: Why has the venues section been taken down on the website set up by countrygirl etc?
I suspect that they want to make sure that those results are very acurate and that they will have them in time for the ME conference in May in London. Maybe it will be there that they will reveal the percentages of positives/negatives.
In the website they still say they are planning to collect blood samples from 200 people. I think they will do it.
Countrygirl
Senior Member
- Messages
- 5,496
- Location
- UK
QUOTE]
We have taken the venue section down because, now that the Ashford collection is complete, we have nothing to enter in it yet, and we were receiving a number of messages saying people couldn't access it.
When the testing of the fifty blood samples from Ashford is completed and the next venue is announced, we will let you know asap.