Does anyone know of anywhere to get this in the uk please, the research on it sounds really interesting
Dr. Mikovits of the WPI to Host Live Q&A Session Regarding XMRV 22nd Jan
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bullybeef
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Are you guys discussing the following:
http://www.dailymail.co.uk/femail/a...-low-Are-suffering-21st-Century-syndrome.html
This story, by our least favourite UK tabloid, was printed just days after the Is ME real? poll! More double standards from the British Press.
http://www.dailymail.co.uk/femail/a...-low-Are-suffering-21st-Century-syndrome.html
This story, by our least favourite UK tabloid, was printed just days after the Is ME real? poll! More double standards from the British Press.
Thanks for this, CJ. I'm still a bit confused.
Yes, I know, no big surprise there. Did she say that they both tested samples taken at different times and ran the test 4 times while 3 was standard.
Or, have I just made up the multiple tests when it's really 1 test multiple samples?
She did say it was standard to run the test 3 times and they ran it 4. Did she mean it's standard to run three separate tests using 3 separate samples from 3 separate times? That doesn't seem likely. Perhaps that protocol is followed only only in a research setting? Even so...
Or, did she say both that you must take samples to test for the virus at different times (I remember her saying this) and you must run the PCR test 3 or 4 times?
All of this, or most combinations, would make PCR testing a very iffy matter. I understand it takes two positives to confirm HIV. But, if the above is true, two tests would be insufficient to rule out the presence of a retrovirus like HIV or, perhaps, XMRV.
I guess this is why they are not running large scale PCR tests.
usedtobeperkytina
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I agree with Mark, although I read lots of other posts after that so I don't remember his point. I just remember as I read it that I agreed.
I disagreed with some points Dysautonomia made that lots of people diagnosed with CFS don't have XMRV. Sorry, that was Dysautonomia, wasn't it?
We again might be dealing with the difference in US to UK. In the US, doctors don't like to diagnose CFS because they can't do anything. (I am talking about doctor population in general, not the specialists.) They don't think CFS (or ME) actually exists. Now I am talking about 50% of doctors, according to surveys I have seen. Someone with "it" is more likely to be misdiagnosed as depression in the US. So in the US, at least, I expect that about 70% of people diagnosed with CFS will have XMRV. And likely a good 30% of people with diagnosis of depression will actually have XMRV.
From what I am reading about UK, from you who live it, CFS has been considered psychological, so the docs there put people into that diagnosis, even if they don't have any biological abnormalities, in fact, they define CFS as people with no biological abnormalities. By contrast, docs who diagnose CFS in the US believe it exists (the other 50%) but they don't know what to do about it, they just send you to another doctor. If they don't believe it exists, they diagnose as depression.
As I have said in another post, there are main definition problems on both sides of Atlantic.
As for cortisol. My theory is that we stress, etc. and adrenal pumps it till it can't pump no more. Many who get sick have very active lives and were under stress at the time. I am one of those. Kind of like diabetes. Maybe we are the XMRV positive folks but not sick until the cortisol dries up, and then we have it all. Does virus infection generally raise cortisol levels? If it does, then that would fit also. If I remember fight, isn't low cortisol compared to high cortisol one of the ways to differentiate between CFS (or ME) and depression?
Anyway, I have low cortisol. So I am on a low dose. I understand that seems counter intuitive if I have XMRV (not tested yet, but assume I have it), but I am feeling better, so I guess I will keep on keeping on.
I think this illness is so complex and involves so many dysfunctions and interrelated systems that when you try to help one thing, you might be hurting another thing. Maybe we need more cortisol to just have normal body functions and handle stress and keep homeostasis, but the cortisol feeds the XMRV, then that causes death of NK and T Cells, which leads to autonomic dysfunction and viruses flourishing, and toxins build up. Then cytokines are elevated because of the flourishing viruses. Sex hormones are messed up because of the HPA axis mess up. And that causes more problems in immune system, and it becomes an unending loop.
Maybe the illness is when so many parts go wrong you can't crawl out because when one thing gets better, something else pushes it back down again. So anything that makes one part better, causes problem in another system.
Basically, XMRV causes a complete failure of the homeostasis such that you can't get out of the continuous loop.
Tina
I disagreed with some points Dysautonomia made that lots of people diagnosed with CFS don't have XMRV. Sorry, that was Dysautonomia, wasn't it?
We again might be dealing with the difference in US to UK. In the US, doctors don't like to diagnose CFS because they can't do anything. (I am talking about doctor population in general, not the specialists.) They don't think CFS (or ME) actually exists. Now I am talking about 50% of doctors, according to surveys I have seen. Someone with "it" is more likely to be misdiagnosed as depression in the US. So in the US, at least, I expect that about 70% of people diagnosed with CFS will have XMRV. And likely a good 30% of people with diagnosis of depression will actually have XMRV.
From what I am reading about UK, from you who live it, CFS has been considered psychological, so the docs there put people into that diagnosis, even if they don't have any biological abnormalities, in fact, they define CFS as people with no biological abnormalities. By contrast, docs who diagnose CFS in the US believe it exists (the other 50%) but they don't know what to do about it, they just send you to another doctor. If they don't believe it exists, they diagnose as depression.
As I have said in another post, there are main definition problems on both sides of Atlantic.
As for cortisol. My theory is that we stress, etc. and adrenal pumps it till it can't pump no more. Many who get sick have very active lives and were under stress at the time. I am one of those. Kind of like diabetes. Maybe we are the XMRV positive folks but not sick until the cortisol dries up, and then we have it all. Does virus infection generally raise cortisol levels? If it does, then that would fit also. If I remember fight, isn't low cortisol compared to high cortisol one of the ways to differentiate between CFS (or ME) and depression?
Anyway, I have low cortisol. So I am on a low dose. I understand that seems counter intuitive if I have XMRV (not tested yet, but assume I have it), but I am feeling better, so I guess I will keep on keeping on.
I think this illness is so complex and involves so many dysfunctions and interrelated systems that when you try to help one thing, you might be hurting another thing. Maybe we need more cortisol to just have normal body functions and handle stress and keep homeostasis, but the cortisol feeds the XMRV, then that causes death of NK and T Cells, which leads to autonomic dysfunction and viruses flourishing, and toxins build up. Then cytokines are elevated because of the flourishing viruses. Sex hormones are messed up because of the HPA axis mess up. And that causes more problems in immune system, and it becomes an unending loop.
Maybe the illness is when so many parts go wrong you can't crawl out because when one thing gets better, something else pushes it back down again. So anything that makes one part better, causes problem in another system.
Basically, XMRV causes a complete failure of the homeostasis such that you can't get out of the continuous loop.
Tina
usedtobeperkytina
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bully
bully, I say gather all these "adrenal fatigue" people and test them for XMRV.
This is another name for CFS. CFS includes adrenal fatigue.
Tina
bully, I say gather all these "adrenal fatigue" people and test them for XMRV.
This is another name for CFS. CFS includes adrenal fatigue.
Tina
fds66
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Thanks to all those that posted information about the remainder of the talk last night. I gave up at about 11pm and went to bed so although I heard the first 27 mins I missed the Q&A session. Can't wait for the rest to be posted up. Was so disappointed last night.
Addison's disease was an exclusion under the CDC Holme's criteria and hypothyroidism, but not a general low cortisol.
Low cortisol isn't a disease and is not listed as a possible cause that would explain the fatigue in CFS. Some doctors argue that CFS is a mild form of Addison's disease but the jury is still out on this one.
It's a general finding in CFS and may be a symptom not a cause.
It's not an exclusion an doesn't satisfactory answer the unexplained fatigue in patients (i.e. supplementing doesn't cure the fatigue and the other CFS symptoms & low cortisol isn't considered a condition). So people can have low cortisol as a finding and that does not make it an exclusion.
The Endocrinologist that I saw doesn't think low cortisol causes fatigue but there are people who disagree with him. It may vary from country to country and obviously that is not satisfactory. It's what the doctors who wrote the various guidelines think and they were conserative.
I've no vested reason to argue the case for and against the inclusion/exclusion of low cortisol as I was diagnosed with ME before CFS was invented so am happy for the CFS people to comment on this better. I have just been reading the literature on cortisol findings in CFS because it is interesting to me - as I have low cortisol I look for clues.
Other people with diagnosed CFS will have real experience both with their diagnosis and with treatment and will be better able to comment on this.
I don't really mind which label I am given / what appears to be most appropriate and will be quite happy to see what develops. People who are diagnosed with CFS may feel differently.
Only Wessely finds a different cortisol pattern in his CFS patients. It would be interesting to see what is left in CFS if low cortisol (or other findings like low blood pressure or low NK cells or immune dysfunction or even sinus infections or fungal problems) is removed. There have been arguments for which of them could cause the fatigue in CFS.
It may be the same with the low blood pressure. Many people with CFS have low blood pressure but it's not an exclusion. It may be felt that low blood pressure causes fatigue though. In Germany I have a friend with that label rather than CFS. The low blood pressure is taken seriously there and treated. It does help but doesn't cure his CFS symptoms (including the fatigue).
All interesting.
Low cortisol isn't a disease and is not listed as a possible cause that would explain the fatigue in CFS. Some doctors argue that CFS is a mild form of Addison's disease but the jury is still out on this one.
It's a general finding in CFS and may be a symptom not a cause.
It's not an exclusion an doesn't satisfactory answer the unexplained fatigue in patients (i.e. supplementing doesn't cure the fatigue and the other CFS symptoms & low cortisol isn't considered a condition). So people can have low cortisol as a finding and that does not make it an exclusion.
The Endocrinologist that I saw doesn't think low cortisol causes fatigue but there are people who disagree with him. It may vary from country to country and obviously that is not satisfactory. It's what the doctors who wrote the various guidelines think and they were conserative.
I've no vested reason to argue the case for and against the inclusion/exclusion of low cortisol as I was diagnosed with ME before CFS was invented so am happy for the CFS people to comment on this better. I have just been reading the literature on cortisol findings in CFS because it is interesting to me - as I have low cortisol I look for clues.
Other people with diagnosed CFS will have real experience both with their diagnosis and with treatment and will be better able to comment on this.
I don't really mind which label I am given / what appears to be most appropriate and will be quite happy to see what develops. People who are diagnosed with CFS may feel differently.
Only Wessely finds a different cortisol pattern in his CFS patients. It would be interesting to see what is left in CFS if low cortisol (or other findings like low blood pressure or low NK cells or immune dysfunction or even sinus infections or fungal problems) is removed. There have been arguments for which of them could cause the fatigue in CFS.
It may be the same with the low blood pressure. Many people with CFS have low blood pressure but it's not an exclusion. It may be felt that low blood pressure causes fatigue though. In Germany I have a friend with that label rather than CFS. The low blood pressure is taken seriously there and treated. It does help but doesn't cure his CFS symptoms (including the fatigue).
All interesting.
Koan,
Doc Mikovits said she took 4 samples at different times form each patient, but ran all the tests in one go. The reason for taking the samples at different times is that over time there are varying numbers of the actual virus present. I suppose at times that you feel particularly sick (or maybe just prior to that) you will be carrying more copies of the virus of the virus than in times of remission.
She mentioned that someone had worked out statistically that if you take samples at three different times, you should be able to find it. She went an extra step and took four.
Doc Mikovits said she took 4 samples at different times form each patient, but ran all the tests in one go. The reason for taking the samples at different times is that over time there are varying numbers of the actual virus present. I suppose at times that you feel particularly sick (or maybe just prior to that) you will be carrying more copies of the virus of the virus than in times of remission.
She mentioned that someone had worked out statistically that if you take samples at three different times, you should be able to find it. She went an extra step and took four.
http://www.youtube.com/watch?v=mEZ1j9RxKtM
luminescentfeeling has posted three tempary videos and has given a run down on the talk in the comments bar.
luminescentfeeling has posted three tempary videos and has given a run down on the talk in the comments bar.
Coxy,
artemisia Annua, (annual wormwood, Qinghaosu)
I imagine most larger herb shops would carry it.
If there is a 'china town' near to you they are often good for getting most herbs. Artemisia is definitely common in TCM.
If you have chinese scripts enabled you can print the chinese spelling of it http://en.wikipedia.org/wiki/Artemisinin and bring that with you. Be sure to look online at a few pictures of it as prepard by the chinese. Just to be double sure your getting the right thing.
artemisia Annua, (annual wormwood, Qinghaosu)
I imagine most larger herb shops would carry it.
If there is a 'china town' near to you they are often good for getting most herbs. Artemisia is definitely common in TCM.
If you have chinese scripts enabled you can print the chinese spelling of it http://en.wikipedia.org/wiki/Artemisinin and bring that with you. Be sure to look online at a few pictures of it as prepard by the chinese. Just to be double sure your getting the right thing.
Thank you for this, Julius. What you write is what I remember hearing about why blood drawn at different times reveals different results. Now I also understand to what the numbers refer. Thanks much.
November Cortisol Thread
Here's what we were saying about cortisol in November:
http://forums.aboutmecfs.org/showthread.php?785-Significance-of-XMRV-Cortisol-Receptors
As I seem to remember (and the part I was looking for), making cortisol requires certain key ingredients and once those are depleted, yes, the balance may adjust to compensate (not really a spooky question of "as if the body knew" so much as a logical dampening response, although I think it does sometimes help to think of the immune system (indeed the body) as being an intelligent entity, or rather behaving purposefully, but I digress).
I hope I also remember right that when we discussed it, some of the relevant enzymes were named, and the pathways and vitamin deficiencies that are related, and this correlated well with existing theories on which certain supplements are based (inc B12? anyone?).
Here's what we were saying about cortisol in November:
http://forums.aboutmecfs.org/showthread.php?785-Significance-of-XMRV-Cortisol-Receptors
As I seem to remember (and the part I was looking for), making cortisol requires certain key ingredients and once those are depleted, yes, the balance may adjust to compensate (not really a spooky question of "as if the body knew" so much as a logical dampening response, although I think it does sometimes help to think of the immune system (indeed the body) as being an intelligent entity, or rather behaving purposefully, but I digress).
I hope I also remember right that when we discussed it, some of the relevant enzymes were named, and the pathways and vitamin deficiencies that are related, and this correlated well with existing theories on which certain supplements are based (inc B12? anyone?).
CJB
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Thanks for this, CJ. I'm still a bit confused.
Did she say that they both tested samples taken at different times and ran the test 4 times while 3 was standard.
Or, have I just made up the multiple tests when it's really 1 test multiple samples?
She did say it was standard to run the test 3 times and they ran it 4. Did she mean it's standard to run three separate tests using 3 separate samples from 3 separate times? That doesn't seem likely. Perhaps that protocol is followed only only in a research setting? Even so...
Or, did she say both that you must take samples to test for the virus at different times (I remember her saying this) and you must run the PCR test 3 or 4 times?
All of this, or most combinations, would make PCR testing a very iffy matter. I understand it takes two positives to confirm HIV. But, if the above is true, two tests would be insufficient to rule out the presence of a retrovirus like HIV or, perhaps, XMRV.
I guess this is why they are not running large scale PCR tests.
This is going to be one of those fascinating memory tests -- can't wait to watch the vid again to see what she ACTUALLY said, but here's how I remember it.
They were sent blood samples of approx 100 patients who met the study criteria for CFS. Each patient submitted multiple samples taken over a period of time (didn't specify how long -- could've been over the course of several days, months, years). She speculated that the samples were collect during doctors visits and that could indicate the patients were sicker than normal for the blood draw. (I think with CFS patients, it could be quite the opposite, but whatever.) It is unclear, but it seemed to me that these samples were taken without regard to her study - they had been collected for some other reason but were made available to her for her study.
Also interesting to note that the study was decoded in December and then they knew the geographic location of the patients and she knew that there were XMRV+ in the UK. Explains why she could be so forceful with her comments in defense of the WPI study.
Ditto with the healthy controls. They were provided by a facility that does reproductive work. These samples could only be decoded for zip code. No other info available as to their health status, age, etc.
Okay. Back to the testing. As I understand it, they tested one sample and if it showed no XMRV, they tested another sample, and if it showed no XMRV, then the next, etc. This was using PCR.
She thinks the variable in how the virus replicates and what load may be in the blood at any given time are the reason for this.
They ran other tests that I don't have the vocabulary to even try to summarize, but they ran the virus through the gamut, even showing transmission from one cell to another. She convinced me that there is an XMRV virus in those CFS patients.
D
DysautonomiaXMRV
Guest
Apologies if this is old news......
I got a note with my XMRV blood test result from VIPdx saying one gets a 'free' serology XMRV test when it's available (if you get a positive culture), presumably because the PCR test is not sensitive enough yet.
Dr M's talk implies this if the samples had to be done 3,4,5 times to 'catch' a positive XMRV PCR result.
I got a note with my XMRV blood test result from VIPdx saying one gets a 'free' serology XMRV test when it's available (if you get a positive culture), presumably because the PCR test is not sensitive enough yet.
Dr M's talk implies this if the samples had to be done 3,4,5 times to 'catch' a positive XMRV PCR result.
gracenote
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not four different samples
Definitely my memory cannot add anything to this discussion. But I have this . . . question . . . quibble . . . about the above explanation.
1. I cannot imagine WPI was able to get four plus blood samples from each patient they tested. The two studies I've been involved with that are working with WPI have only requested one. Also, this has not been brought up with regards to the IC study no one has said that their study may not be accurate because they didn't have blood from CFS patients drawn from four different occasions (although I think ? Judy mentioned that they should have run the tests more than the three standard times). I just cannot imagine any of the sources of the blood for the Science study had four samples from each patient. Nor do I think their Bio Bank contains four different samples from each patient.
2. If they had to test CFS patients from four different blood draws to be sure of their results, wouldn't they have had to test the controls blood from four different draws? How could they be sure the controls were negative without that?
So it's just not making sense to me. It seems rather that there is not usually a lot of XMRV in each sample I cannot remember the quote here so to test it multiple times will make it more likely for you to find that "needle in the haystack."
Just some thoughts. And because I don't trust my brain, they may be completely wrong thoughts, but they are my thoughts. I'm sticking to them.
Definitely my memory cannot add anything to this discussion. But I have this . . . question . . . quibble . . . about the above explanation.
1. I cannot imagine WPI was able to get four plus blood samples from each patient they tested. The two studies I've been involved with that are working with WPI have only requested one. Also, this has not been brought up with regards to the IC study no one has said that their study may not be accurate because they didn't have blood from CFS patients drawn from four different occasions (although I think ? Judy mentioned that they should have run the tests more than the three standard times). I just cannot imagine any of the sources of the blood for the Science study had four samples from each patient. Nor do I think their Bio Bank contains four different samples from each patient.
2. If they had to test CFS patients from four different blood draws to be sure of their results, wouldn't they have had to test the controls blood from four different draws? How could they be sure the controls were negative without that?
So it's just not making sense to me. It seems rather that there is not usually a lot of XMRV in each sample I cannot remember the quote here so to test it multiple times will make it more likely for you to find that "needle in the haystack."
Just some thoughts. And because I don't trust my brain, they may be completely wrong thoughts, but they are my thoughts. I'm sticking to them.
Esther12
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Good points Gracenote. That does sound odd.
It seems like the more info we have, the more undertain things can get. I'm so hungry for a blinded replication study which has been carried out with help from the WPI.
It seems like the more info we have, the more undertain things can get. I'm so hungry for a blinded replication study which has been carried out with help from the WPI.
cfs since 1998
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Cortisol and XMRV
I think what happens is this: the stress of having a retrovirus infection and possibly a bunch of opportunistic infections as well eventually weakens your adrenal gland and you end up with low cortisol. Once you have low cortisol, XMRV slows down. As XMRV slows down and your immune system starts to get the infections under control and you improve just a little bit, the higher cortisol turns up XMRV again and you end up back where you started.
The result is that, after the acute onset phase, you end up "stuck" in an inherently stable low-cortisol state. You don't get better because the higher cortisol would turn on XMRV, and you don't have adrenal failure and die because XMRV is turned off as your cortisol goes down. So you just end up in a balance which is a chronic low-cortisol, low-adrenal-output state, much lower than healthy people but higher than Addison's disease. And some people will repeatedly go back and forth between high and low cortisol (relapsing/remitting CFS).
This is just my guess.
I think what happens is this: the stress of having a retrovirus infection and possibly a bunch of opportunistic infections as well eventually weakens your adrenal gland and you end up with low cortisol. Once you have low cortisol, XMRV slows down. As XMRV slows down and your immune system starts to get the infections under control and you improve just a little bit, the higher cortisol turns up XMRV again and you end up back where you started.
The result is that, after the acute onset phase, you end up "stuck" in an inherently stable low-cortisol state. You don't get better because the higher cortisol would turn on XMRV, and you don't have adrenal failure and die because XMRV is turned off as your cortisol goes down. So you just end up in a balance which is a chronic low-cortisol, low-adrenal-output state, much lower than healthy people but higher than Addison's disease. And some people will repeatedly go back and forth between high and low cortisol (relapsing/remitting CFS).
This is just my guess.
I had a TAP done, which measures salivary cortisol at 4 different times during the day.
My levels before work, after work and before bedtime were all ridiculously low. But the one in the afternoon, while I was at work was high-normal.
I tend to really stress myself out at work, just so that I can function. I wonder if I have subconsciously figured out a way to freak myself out just to get a shot of HPA juice to get me through the day.
Anybody with a similar finding?
My levels before work, after work and before bedtime were all ridiculously low. But the one in the afternoon, while I was at work was high-normal.
I tend to really stress myself out at work, just so that I can function. I wonder if I have subconsciously figured out a way to freak myself out just to get a shot of HPA juice to get me through the day.
Anybody with a similar finding?
Hi Grace, CJ, Julius... and anyone else struggling with the PCR testing # question.
Gracenote,
You raise a number of issues that I wonder about, too, hence my confusion. Thanks for stating it so well because I certainly could not!
CJ (& Julius who are in agreement, I think)
Well, yes, you make perfect sense.
My problem is that I heard it in such a way that it could have meant either and each makes sense.
I think we all heard, very plainly, that the amount of virus found in a sample can vary from hour to hour, day to day, but I think there is still a question re how they deal with that in the lab. Yes?
Ah well, I'm sure we'll find out.
Peace out
Gracenote,
You raise a number of issues that I wonder about, too, hence my confusion. Thanks for stating it so well because I certainly could not!
CJ (& Julius who are in agreement, I think)
Well, yes, you make perfect sense.
My problem is that I heard it in such a way that it could have meant either and each makes sense.
I think we all heard, very plainly, that the amount of virus found in a sample can vary from hour to hour, day to day, but I think there is still a question re how they deal with that in the lab. Yes?
Ah well, I'm sure we'll find out.
Peace out
CJB
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Definitely my memory cannot add anything to this discussion. But I have this . . . question . . . quibble . . . about the above explanation.
1. I cannot imagine WPI was able to get four plus blood samples from each patient they tested. The two studies I've been involved with that are working with WPI have only requested one. Also, this has not been brought up with regards to the IC study no one has said that their study may not be accurate because they didn't have blood from CFS patients drawn from four different occasions (although I think ? Judy mentioned that they should have run the tests more than the three standard times). I just cannot imagine any of the sources of the blood for the Science study had four samples from each patient. Nor do I think their Bio Bank contains four different samples from each patient.
2. If they had to test CFS patients from four different blood draws to be sure of their results, wouldn't they have had to test the controls blood from four different draws? How could they be sure the controls were negative without that?
So it's just not making sense to me. It seems rather that there is not usually a lot of XMRV in each sample I cannot remember the quote here so to test it multiple times will make it more likely for you to find that "needle in the haystack."
Just some thoughts. And because I don't trust my brain, they may be completely wrong thoughts, but they are my thoughts. I'm sticking to them.
No quibble here, gracenote. I'm sure you're correct. don't know what made me think I understood.