You may wonder why the CAA treats XMRV the way they do... So:

[V99]

Cort, I am utterly offended at the comment you made in post 172 about the WPI. Are you deliberately trying to undermine this research? I suggest that you remove the false accusation about myself and the WPI.

 

[bakercape]

I don't see

in any way how V99 accused WPI of doing a quick and dirty study. I hope that was just a bad joke. Utherwise it seems like a kind of quick and dirty little comment.

 

[taniaaust1]

Go back and read the abstract. The citation is a comment on a study done by N. Klimas and friends. The author of the comment wasn't attributing cardiovascular problems to deconditioning, they were comparing the results to bed rest deconditioning as had been done in the original study. I listed it because the author is part of the group funded by the CAA and it clearly shows that the group takes the issue of low blood volume seriously.

No one is blaming this on deconditioning. That said, I'm sorry you're doing so poorly.

The results clearly demonstrate reduced cardiac stroke volume and cardiac output in more severely afflicted patients with CFS, which is primarily attributable to a measurable reduction in blood volume. Similar findings are observed in microgravity and bed rest deconditioning, in forms of orthostatic intolerance and, to a lesser extent, in sedentary people. The circulatory consequences of reduced cardiac output may help to account for many of the findings of the syndrome.

That is exactly the kind of study that one who believed that CFS was a psychological illness may get funded... if they want to find psychological reasons for our symptoms eg Its in our heads that we are sick and our bed rest deconditions us.. hence we end up with reduced blood volume.
It makes it look as if "physical causes" are being believed and researched.. but even Wessely may do such a study to help prove our symptoms are due to psychological reasons and the way we act.

Talking about such things dont mean that Dr Suzanne D. Vernon believes this is a "real" physical illness. If she's on our side of the fence and not Wessely's, i wish she'd make this clear to everyone instead of so often appearing wishy washy.

I are thou happy about her statement about the negative XMRV studies but that still doesnt show what side of the fence she's really on.

 

[taniaaust1]

Clinical Science (2006) 110, (255–263) (Printed in Great Britain)
PDF


Increased plasma angiotensin II in postural tachycardia syndrome (POTS) is related to reduced blood flow and blood volume

Julian M. STEWART, June L. GLOVER and Marvin S. MEDOW
Center for Pediatric Hypotension, New York Medical College, Valhalla, NY 10595, U.S.A.

Abstract
POTS (postural tachycardia syndrome) is associated with low blood volume and reduced renin and aldosterone; however, the role of Ang (angiotensin) II has not been investigated. Previous studies have suggested that a subset of POTS patients with increased vasoconstriction related to decreased bioavailable NO (nitric oxide) have decreased blood volume. Ang II reduces bioavailable NO and is integral to the renin–Ang system. Thus, in the present study, we investigated the relationship between blood volume, Ang II, renin, aldosterone and peripheral blood flow in POTS patients. POTS was diagnosed by 70 upright tilt, and supine calf blood flow, measured by venous occlusion plethysmography, was used to subgroup POTS patients. A total of 23 POTS patients were partitioned; ten with low blood flow, eight with normal flow and five with high flow. There were ten healthy volunteers. Blood volume was measured by dye dilution. All biochemical measurements were performed whilst supine. Blood volume was decreased in low-flow POTS (2.140.12 litres/m2) compared with controls (2.760.20 litres/m2), but not in the other subgroups. PRA (plasma renin activity) was decreased in low-flow POTS compared with controls (0.490.12 compared with 0.900.18 ng of Ang Iml-1h-1 respectively), whereas plasma Ang II was increased (8920 compared with 324 ng/l), but not in the other subgroups. PRA correlated with aldosterone (r=+0.71) in all subjects. PRA correlated negatively with blood volume (r=-0.72) in normal- and high-flow POTS, but positively (r=+0.65) in low-flow POTS. PRA correlated positively with Ang II (r=+0.76) in normal- and high-flow POTS, but negatively (r=-0.83) in low-flow POTS. Blood volume was negatively correlated with Ang II (r=-0.66) in normal- and high-flow POTS and in five low-flow POTS patients. The remaining five low-flow POTS patients had reduced blood volume and increased Ang II which was not correlated with blood volume. The data suggest that plasma Ang II is increased in low-flow POTS patients with hypovolaemia, which may contribute to local blood flow dysregulation and reduced NO bioavailability.

off topic but i wanted to say thank you CBS for posting that study as i hadnt seen it before and didnt even know that such a thing as high blood flow POTS even existed.

Maybe that is what is wrong with me? my body has shifted a lot during the time ive had CFS/ME, i used to have always very low BP and be always cold (others would comment how cold i felt)..except when i had a fever, now days my body eg hands seems to be nearly always warm and warmer than other peoples. My Raynauds is gone and now i suffer from high BP quite a bit (along with the POTS). Maybe the blood volume is caused by some kind of body dysregulation issue??..

 

[taniaaust1]

. That are lots of chronic diseases -in fact i would think most chronic diseases do not have a pathogen involved - they come from, i guess, breakdowns in the system's over time caused by ??????. I think they know what's happening on the surface but they don't know why. Do they know why diabetics stopped producing insulin? For the genetically caused diabetes I would guess yes but for the other types I really don't know.

diabetes is probably caused by a virus http://www.nhs.uk/news/2009/03March/Pages/DiabetesVirusLink.aspx Just like most chronic diseases are being caused by pathogens

 

[judderwocky]

That is absolutely true.

Do you hear of anyone, though, that is looking for retroviruses other than XMRV in CFS? There doesn't appear to be. Why? Because there is not enough evidence that they are present to spend the money.

Remember the WPI did their big pathogen arrays. They started doing that several years ago. They found no evidence of retroviruses in CFS Not even XMRV - which was odd because XMRV was first captured in a pathogen array. It does suggest that the arrays are not always effective...but still, if you don't have evidence of a retrovirus in an array that usually works why would you spend alot of money plowing through patients blood looking for them. You wouldn't.

Put it another way...if XMRV had not shown up in patients with RNase L problems...the WPI would have never looked for it again. They'd already decided that retroviruses do not play a role in CFS. That's what their evidence showed.

failing to not find one retrovirus, does not remove the rest from the list. there are still other retroviruses, and with so many cohorts in the disease, its possible that different cohorts correspond to different retroviruses. CFS might simply be "Lymphotrophic Retroviral Syndrome" .... there are other classes of retroviruses that attack the lymph and nerve systems... not finding xmrv doesn't say anything to the presence of these other viruses. I believe they continued to look for retroviral links... and found them .... Mikovits did study retroviruses specifically... thats why they hired her... at least that was my impression...

 

[taniaaust1]

Listen, people, there are many many responds here, but the fact remains the same. Dr. Vernon said that this is not a disease caused by a retrovirus, even though she has no proof for it, and even though many scientists that know the disease would have raised retroviruses, even before the "Science" paper, as a possible cause.
Not only that, she says that CFS is "not a retroviral infection", but that it is not a "recognised psychiatric disorder".
In the big words and in the little ones - her bias is clearly shown. And what's also shown is at least one little reason for her to dismiss XMRV as the cause of ME/CFS: Because a very short-time before the "Science" paper, she literally said that it is not.

***thumbs up****

 

[jace]

Cort, when V99 referred to "quick and dirty studies" I took her to mean the recent CDC retrovirology study, and the Imperial College BMJ study, among others. BTW, have you read the comments page on the CDC study? It illuminates the many flaws.

So it's a shame that you made that 'quick and dirty' comment.

"the outcomes of pathophysiological research have generally featured delineation of what CFS is not - a muscle disorder, a retroviral infection, a recognised psychiatric disorder, a known autoimmune disorder, etc."

I believe this was Dr. Vernon's own assumptions, based on her interpretation of the pathophysiological research, up to that date, July '09. It behoves her to restate her position clearly, on the "front page", in light of the events that followed that date. Everyone has a right to be wrong, but good people own up when they realise their mistakes.

 

[judderwocky]

We're not going to agree

BLAH BLAH BLAH....

none of us are going to agree on this... no side is hearing what the other is really saying... its just gibberish and unfortunately we're only hurting each other at this point... i think we're all getting frustrated.

consider the words of the very wise Ke$ha ;p

[video=youtube;3taEuL4EHAg]http://www.youtube.com/watch?v=3taEuL4EHAg[/video]

 

[richvank]

Clinical Science (2006) 110, (255263) (Printed in Great Britain)
PDF


Increased plasma angiotensin II in postural tachycardia syndrome (POTS) is related to reduced blood flow and blood volume

Julian M. STEWART, June L. GLOVER and Marvin S. MEDOW
Center for Pediatric Hypotension, New York Medical College, Valhalla, NY 10595, U.S.A.

Abstract
POTS (postural tachycardia syndrome) is associated with low blood volume and reduced renin and aldosterone; however, the role of Ang (angiotensin) II has not been investigated. Previous studies have suggested that a subset of POTS patients with increased vasoconstriction related to decreased bioavailable NO (nitric oxide) have decreased blood volume. Ang II reduces bioavailable NO and is integral to the reninAng system. Thus, in the present study, we investigated the relationship between blood volume, Ang II, renin, aldosterone and peripheral blood flow in POTS patients. POTS was diagnosed by 70 upright tilt, and supine calf blood flow, measured by venous occlusion plethysmography, was used to subgroup POTS patients. A total of 23 POTS patients were partitioned; ten with low blood flow, eight with normal flow and five with high flow. There were ten healthy volunteers. Blood volume was measured by dye dilution. All biochemical measurements were performed whilst supine. Blood volume was decreased in low-flow POTS (2.140.12 litres/m2) compared with controls (2.760.20 litres/m2), but not in the other subgroups. PRA (plasma renin activity) was decreased in low-flow POTS compared with controls (0.490.12 compared with 0.900.18 ng of Ang Iml-1h-1 respectively), whereas plasma Ang II was increased (8920 compared with 324 ng/l), but not in the other subgroups. PRA correlated with aldosterone (r=+0.71) in all subjects. PRA correlated negatively with blood volume (r=-0.72) in normal- and high-flow POTS, but positively (r=+0.65) in low-flow POTS. PRA correlated positively with Ang II (r=+0.76) in normal- and high-flow POTS, but negatively (r=-0.83) in low-flow POTS. Blood volume was negatively correlated with Ang II (r=-0.66) in normal- and high-flow POTS and in five low-flow POTS patients. The remaining five low-flow POTS patients had reduced blood volume and increased Ang II which was not correlated with blood volume. The data suggest that plasma Ang II is increased in low-flow POTS patients with hypovolaemia, which may contribute to local blood flow dysregulation and reduced NO bioavailability.

Hi, CBS and the group.

I just want to note that quite a few PWCs have taken Dr. Amy Yasko's nutrigenomic panel, and one of the genomic polymorphisms on this panel is a deletion in the ACE (angiotensin converting enzyme), which converts angiotensin I to angiotensin II. This deletion causes an elevation of angiotensin II, and PWCs very commonly have a homozygous (+/+) result for this polymorphism. Since many PWCs also have diastolic dysfunction, which results in low cardiac output, as well as having POTS, I think there might be a connection here. Thanks for posting this.

Best regards,

Rich

 

[Cort]

Cort, I am utterly offended at the comment you made in post 172 about the WPI. Are you deliberately trying to undermine this research? I suggest that you remove the false accusation about myself and the WPI.

Yes, I was having some fun at your expense but it was tongue in cheek - did you see the smiley? Here's your post (which was in response to my post)

V99 - No, I said looking for what is obvious. Viruses, retroviruses, entroviruses, they are the obvious choice.

You added this quote from my post referring to work done by the WPI. That's what the 'they' refers to

Cort
They started doing that several years ago. They found no evidence of retroviruses in CFS Not even XMRV - which was odd because XMRV was first captured in a pathogen array.

To that you responded

That is why you have to keep looking, not just some quick and dirty study. A virus or retrovirus is the obvious cause for ME, but if you look at the wrong one then you will get negative results. It doesn't stop it from being the cause.

Again, it was tongue in cheek by the way. Hence the dots and the smiley at the end.....

 

[Cort]

That is exactly the kind of study that one who believed that CFS was a psychological illness may get funded... if they want to find psychological reasons for our symptoms eg Its in our heads that we are sick and our bed rest deconditions us.. hence we end up with reduced blood volume.
It makes it look as if "physical causes" are being believed and researched.. but even Wessely may do such a study to help prove our symptoms are due to psychological reasons and the way we act.

Talking about such things dont mean that Dr Suzanne D. Vernon believes this is a "real" physical illness. If she's on our side of the fence and not Wessely's, i wish she'd make this clear to everyone instead of so often appearing wishy washy.

I are thou happy about her statement about the negative XMRV studies but that still doesnt show what side of the fence she's really on.

What she's doing is what all good researchers are doing - which is presenting all the research in the area; basically she's covering all the bases. It can be uncomfortable to witness, for sure, but its important to her standing as a researcher.

If you really want to know what side of the fence shes on then the best way to do that, I think, is to look at the research she is promoting with the CAA. That's her job - she earns her keep by promoting research that produces results so I'm sure its outcome is of real importance to her. Everything she's doing is physiological.

Here's the link to check it out of you're interested. For me, I don't see any fence sitting there. I don't see have behavioral and half physiological - I see all physiological stuff. - http://www.cfids.org/about/acceleratecfsresearch.asp

 

[Cort]

failing to not find one retrovirus, does not remove the rest from the list. there are still other retroviruses, and with so many cohorts in the disease, its possible that different cohorts correspond to different retroviruses. CFS might simply be "Lymphotrophic Retroviral Syndrome" .... there are other classes of retroviruses that attack the lymph and nerve systems... not finding xmrv doesn't say anything to the presence of these other viruses. I believe they continued to look for retroviral links... and found them .... Mikovits did study retroviruses specifically... thats why they hired her... at least that was my impression...

I don't believe they hired her because she was a retrovirolist. (They weren't studying retroviruses at the time nor are they studying other retroviruses now). As I remember they hired her because she was a virologist with a cancer background and Dr. Peterson had just found a cancer cohort in his Incline Village patients. She found out about that at an HHV6 convention. It was the cancer viral connection what hooked her.

They did look for other retroviruses and they didn't find any. If there were other retroviruses associated with CFS we would surely know about it. Maybe when the next human infectious retrovirus is found it will show up in CFS as well. I really think there is this overemphasis on retroviral thinking in general.l If it was not for HIV retroviral research would be a very small field. Until 2006 there were only two human infectious infectious retroviruses. Now there are three.

There are probably hundreds of infectious viruses......Statistically you'd have a far better chance if you went with viruses instead of retroviruses. Researchers have been looking like mad for retroviruses in other diseases since HIV showed up almost 30 years ago. They've only found two since then! It hasn't exactly been a growth industry. Who knows, it could be fifty years before the next human infectious retrovirus shows up....

I'm just saying I don't think any of this was easy...or obvious.....

 

[Cort]

Cort, when V99 referred to "quick and dirty studies" I took her to mean the recent CDC retrovirology study, and the Imperial College BMJ study, among others. BTW, have you read the comments page on the CDC study? It illuminates the many flaws.

So it's a shame that you made that 'quick and dirty' comment.

I believe this was Dr. Vernon's own assumptions, based on her interpretation of the pathophysiological research, up to that date, July '09. It behoves her to restate her position clearly, on the "front page", in light of the events that followed that date. Everyone has a right to be wrong, but good people own up when they realise their mistakes.

Jeez, Jace - when she writes another review paper I dare say she will....The fact that the CAA is doing an XMRV study now does seem to suggest that they think it might play a role in CFS???? Isn't putting money towards an XMR study of all things enough of a 'restatement' for you?

Or maybe she should wear a sign around her chest for a couple of weeks saying.....I was right at the time but events have proved me wrong - please forgive me? What exactly do you want?

I know some people worry about Dr Vernon because she comes from the CDC but I am very comfortable with her - she's working very hard, she has big, big (BIG) ideas and she's focused entirely on physiological research. I'm very happy with how she's turned out.

 

[V99]

Yes, I was having some fun at your expense but it was tongue in cheek - did you see the smiley? Here's your post (which was in response to my post)

V99 - No, I said looking for what is obvious. Viruses, retroviruses, entroviruses, they are the obvious choice.

You added this quote from my post referring to work done by the WPI. That's what the 'they' refers to



To that you responded



Again, it was tongue in cheek by the way. Hence the dots and the smiley at the end.....

Yes, I could see the smiley. That comment undermines XMRV research and is at the expense of every patient, not just me. You need to remove it.

 

[pieddours]

Yes, I could see the smiley. That comment undermines XMRV research and is at the expense of every patient, not just me. You need to remove it.

I must admit, it's not quite as funny as this joke:

"Are they helping the CDC perfect that test that finds XMRV in fake samples?"

 

[V99]

Cort, are you going to remove this false accusation or not?

It is highly suspicious that this 'pieddours' first post is aim at me. Clearly you accusation is having an effect.

 

[Cort]

It was intended as a joke - not an accusation. It simply implied that logically one could interpret your statement that way. The fact that it had a smiley on it indicated it was a little stab at the wording of your statement, yes, but that it was tongue in check.....I will make it more clear that it was a joke, though - so there will be no doubt about it.

Pieddours post does not. to me, suggest that you feel the WPI's does quick and dirty studies....it implied that you didn't get 'the joke' or ironic stab or whatever it was.

 

[V99]

No Cort, it is a personal attack and accusation, if you do not remove it you are forcing my hand.

It also undermines the research that the WPI is doing. Is this your aim?

 

[Cort]

No one but you is forcing your hand. I have clarified the statement to ensure that no one could consider it anything other than a joke.

If it was my aim to undermine the WPI's research I promise I would write a paper about it. I'm pretty upfront about what I believe and don't believe.

(I certainly wouldn't not scatter little jokes around that tick people off much more than I expected. Hopefully you can accept that. While it was a little dig at your statement it was nothing more than that, I assure you. )

Here's what I put in the post:

(Since this statement really ruffled some feathers let me clearly point out that yes, while it was a bit a stab at V99 from me - it was done tongue in cheek (hence the smiley) and was never meant to imply that she actually felt the WPI did quick and dirty studies.)