XMRV - Hope and Caution

[Wayne]

Beachhead re: XMRA ?

I think folks should not worry about stigmitization of CFS without XMRV. This finding will translate into a definable illness and easier coverage by insurance.

Hi Jen, Hi All,

Jen, I totally agree with you on this point. I think that once a large percentage of people with ME/CFS are found to have XMRV (which I believe will be the case), that there will be much less likelihood that those with "egg on their face" will want to repeat their error.

Regarding the beachhead analogy: As someone who's been dealing with ME/CFS health issues for some 30-40 years, I don't look at the discovery of this retrovirus as a beachhead so much as I look at it as a major turning point. So far the road has been long, hard, and uphill. I think the ground has just gotten a lot flatter.

I think there's also a good likelihood we can start gradually coasting a bit (perhaps downhill?) as new information and new therapies become available. I also think this can happen fairly rapidly (by scientific research standards and by the painfully slow course of ME/CFS research over the past 30 years).

The one thing that has been encouraging to me have been comments by Judy M. and others that treatment protocols will likely be easier to put in place than was the case with HIV. And HIV is fairly easily controlled these days compared to ME/CFS.

All in all, I have to say that I feel an immense satisfaction in seeing this news come out. News I thought I might never see in my lifetime. I'm also feeling remarkably relaxed and patient about letting this whole process play out as it will. I'm really not feeling concerned about whether I test positive for XMRV or not. I either have it or I don't. Even if I don't, the validation that is emerging for us as a "group" will likely extend to those who do not test positive.

I intend to enjoy every bit of peace that comes with every step along the way from here. Instead of looking at this juncture as a beachhead, I look at it more as one of seeing a little bit wider view, with very good prospects this view will be expanded even more relatively quickly. This will help all of us with ME/CFS, and help rid our culture of arm-chair psychoanalysts who so callously play with others' ME/CFS misfortunes.

Wayne

 

[MEKoan]

I'm really not feeling concerned about whether I test positive for XMRV or not. I either have it or I don't. Even if I don't, the validation that is emerging for us as a "group" will likely extend to those who do not test positive.

Hey Wayne,

Yeah, totally!

peace,
Koan

ETA I may seem to be saying two things in this thread.

Personally, I feel pretty Zen about the new reality one way or the other. And, I completely understand the range of feelings that this news might illicit in other people in different situations -- younger people, people who want to have kids, people who have kids, people who can't get disability coverage, people in the UK who are being tortured... on and on...

PS Waynie How's the journey?!

 

[Wayne]

Veterans of ME/CFS ?

Hey Wayne,

I completely understand the range of feelings that this news might illicit in other people in different situations -- younger people, people who want to have kids, people who have kids, people who can't get disability coverage, people in the UK who are being tortured... on and on...

PS Waynie How's the journey?!

Heeeeeeey Koan,

I think you make a good point about all the different situations that people with ME/CFS are facing. I've long felt like I'm somewhat of a veteran at much of this. And I certainly feel for people who are suddenly faced with major life-altering health situations. Takes a lot of delicate balancing acts to stay afloat at times.

My (our ?) advantage (those of us with long-term ME/CFS) is that we've had a "lot of time" to make adjustments. It took me many years to learn some important things. This would include learning to survive while trying to improve physically. Probably more importantly, it means finding a semblance of balance to navigate the inner turmoil that is associated with all the loss of dreams, friendships, social life, etc. I think forgiveness for all those who have not understood our trials is also important.

By now, I feel I've discovered the importance of patience and feel I've achieved a pretty good acceptance of much that has come my way this lifetime. Yes, lots of disappointments, but also, many rich and rewarding experiences. I would rather finish this lifetime with the latter, than to have good health and feel I frittered my life away. I guess in the end, we can always take our rich human experiences with us, but we can't take good physical health.

My journey? Nice of you to ask... Wonderful in many ways; exhausting in many other ways. I have no regrets however. Despite the trials, I am happy (and grateful) to be able to do this trip, perhaps for the last time. I intend to take advantage of every opportunity that comes my way to make it the best I can.

Be well my friend, I never know when I'll be absent from the board for a few days at a time. Is always nice to check in and feel how harmonious things are here. Thanks for your wonderful greeting!

Warm Regards, Wayne

 

[nina_online]

Peterson on Joey's blog vs Mikovits per Summer

Regarding the issue of whether (nearly?) all CFS/ME patients will be found to have XMVR, or only the viral-onset, this apparent contradiction concerns me:

Why did Peterson tell Joey in August <http://pathogensoup.blogspot.com/2009/08/norcal-update.html>:

Peterson has given up treating non-classic cases of CFS,
such as people that have had fatigue all their lives. He
believes they suffer from an organic mitochondrial disease,
whereas post-infectious fatigue patients have "acquired
mitochodrial disease," which is secondary to immune dysfunction.

Yet, Summer reported in this thread <http://forums.aboutmecfs.org/showpost.php?p=8063&postcount=12>:

Judy Mikovits said that eventually every CFIDS patient will
be positive. They have 98% positivity now (more since the
study as the antibiody test is being refined). Yes, 2/3 had
active virus in the blood, but the others had a strong
antibody to it, so also have XMRV.

Peterson would have known the study results in August.

If anyone (Cort?) has the opportunity to interview or ask questions of Peterson or Mikovits, I'd like to hear how the reconcile these contradictory positions.

Nina

 

[MEKoan]

Wayne,
You leave me speechless.

Share the rhythm with us when you are able, please.

Peace to you, my friend.

Live!

Koan

ETA "Live" slow!

 

[dannybex]

Hi Jen and all...

I don't mind Cort questioning and being cautious.

For me the findings are freeing. At last my restless mind is pleased and the puzzle pieces fit. I no longer have to feel a mysterious pariah with some unidentified immune defect that caused me to be hobbled by a tickbite while for others it was a few weeks illness. It is not me. I'm okay. I am confident this study will bear great riches over time.

Because I am delicate I'm not sure I can take lots of drugs.

I think folks should not worry about stigmitization of CFS without XMRV. This finding will translate into a definable illness and easier coverage by insurance.

A definable illness perhaps for those with XMRV, along with possibly easier coverage. For the rest...perhaps the docs will at least take it more seriously, but I still say many will still be dimissed or sent to psychs if they don't test positive. Especially if Mikovitz is suggesting it will show up in 'all' patients as the testing is refined. (am I making sense???)

I too, and I think many w/CFS/ME cannot take many drugs (perhaps tying in with Rich's methylation hypothesis?) so I'm hoping we'll discover alternatives. The study posted about b12's anti-HIV actions on another thread was encouraging.

Still, I am actually not as freaked out as I was last week. The announcement was exciting, but it also just brought on so many questions, as it still does, but I'm realizing this will all take time and stressing over them does no good...in fact it helps 'turn on' the retrovirus, according to Mikovitz.

We'll have to see how it plays out. I guess I'm just trying not to get my hopes up too high. I don't want to rain on anyone's parade, including my own, and am trying not to be a curmudgeon, but even if tests from WPI are available in a month or so, that doesn't mean they'll be available to the vast majority who might want to be tested, unless they can pay out of pocket.

The rest will have to wait for FDA (?) approval, which I'm just guessing will take at least a year, if not longer. And then who knows if medicaid or medicare will cover them.

And then there's Reeves, who's already announced his testing won't confirm the results.

Deeeeeeep breath. Thanks for letting me vent a bit.

Dan

p.s. Summer...thanks for all the links. Your brain is certainly working better than mine (and a lot of healthy folks I know)!

 

[Summer]

Regarding the issue of whether (nearly?) all CFS/ME patients will be found to have XMVR, or only the viral-onset, this apparent contradiction concerns me:

Why did Peterson tell Joey in August <http://pathogensoup.blogspot.com/2009/08/norcal-update.html>:

Peterson has given up treating non-classic cases of CFS,
such as people that have had fatigue all their lives. He
believes they suffer from an organic mitochondrial disease,
whereas post-infectious fatigue patients have "acquired
mitochodrial disease," which is secondary to immune dysfunction.

Yet, Summer reported in this thread <http://forums.aboutmecfs.org/showpost.php?p=8063&postcount=12>:

Judy Mikovits said that eventually every CFIDS patient will
be positive. They have 98% positivity now (more since the
study as the antibiody test is being refined). Yes, 2/3 had
active virus in the blood, but the others had a strong
antibody to it, so also have XMRV.

Peterson would have known the study results in August.

If anyone (Cort?) has the opportunity to interview or ask questions of Peterson or Mikovits, I'd like to hear how the reconcile these contradictory positions.

Nina

Nina,

A friend of mine was told that Dr. Peterson was going to stop treating patients that did not have this virus, because they have something else. I do not know that that is contradictory. I'm just guessing, but Judy has said those carrying a CFIDS diagnosis have this virus by greater than 95% and in a later study, about 98%, so that is only 1-2 patients out of 100 that might have something else. That is to be expected.

 

[Cort]

One concern I have is that my understanding is that Dr. Peterson focuses on one subset of patient - we call them the Incline village subset (but they are patients, as someone noted, from all over the world) who share similar characteristics; they have RNase L. problems, natural killer cell cytotoxicity problems, increased pro-inflammatory cytokines and increased pathogen loads.

He's stated that these patients don't benefit from virtually any of the supplements that are commonly found in the community and that the only way to really treat them is with antivirals. He believes (or at least did believe) that the rest of the ME/CFS group has problems with central sensitization and are strongly aligned with the fibromyalgia group. They do benefit from supplements, behavioral therapy and things like that.

They sound like distinct groups. Perhaps they are the same group after all ( I certainly hope so because I believe that I'm probably in that second group. )

Just who these findings apply to is one of the big questions in the research community right now. One researcher, after reading that blog, wrote me and stated that few people have read the paper closely. We won't really know how far XMRV is spread in the ME/CFS community until more papers come out. Of course we do have some indications that it does go further than this group.

It may sound silly but if Dr. Peterson only takes one kind of patient (I don't actually know that that's true but it's what I've heard) I don't know why Dr. Mikovits would have samples from other types of patients (?) I could be completely wrong on this - I would love to ask them - its the most burning question I have - but the WPI hasn't responded to requests for an interview.

I certainly do take heart in Dr. Mikovits statements that XMRV will be found in most CFS patients and in autism and the few FM patients that have been tested.

 

[Cort]

Grace's note regarding RNase L. and XMRV is very hopeful in this regard. It states

Some patients have also asked about the test available for RNASE panels at VIP lab, which tests for the original immune defect that pointed to XMRV. We found this test does not have clinical value, nor does it seem to show whether a patient is likely to have XMRV. A recent study of 38 CFS patients at GMA, tested with the RNASE panel, found it was not helpful in directing treatment at this time. Dr. Mikovits' study on CFS patients also found the RNASE panel did not indicate who would have XMRV.

It suggests that you don't need the RNase L defect to carry the virus. When I said the WPI was 'stacking the deck' so to speak it didn't account for the fact that they may have been 'stacking it' incorrectly. That wouldn't be surprising since there's so much we just don't know.

If you don't need to have the RNase L. defect it may be don't need the other things as well - the high IL-6/IL-8 levels or the impaired natural killer cells. That finding in itself just kicked the door quite a bit more open with regard to the larger subset of CFS patients. I like it!

(Thanks - I'm going to put that in my blog.)

I assume of course that virtually everyone 'stacks the deck'. I guess a nicer way of putting it is that you put your best foot forward.

(What a wacky saying that is by the way - I wonder where that came from (your best foot!))

 

[nina_online]

Summer,

I think this is a circular argument, in that the patients that were tested meet stricter criteria than most do, right? I mean they all came from areas where outbreaks occurred. That means that isolated cases were not represented, and I can't believe that the ratio of outbreaks to isolated cases is 98 to 2. Judy didn't test a representative sample of "those carrying a CFIDS diagnosis", but rather a sample that is representative of a subgroup. That's the whole point of Cort's essay.

So, isn't Judy making a leap from CFS patents who fit the profile of her research study patients to the broader CFS community? Unless she just feels so certain that this virus causes CFS no matter what- whether you were born with it, i.e. got it vertically (mother-to-child) but maybe symptoms weren't was triggered until another insult came along (another virus, a vaccine, cortisol, hormones). I would like this answer, but have to wonder: How would she know?

Hope this makes sense, have a screaming 2 year old on my lap.

Nina,

A friend of mine was told that Dr. Peterson was going to stop treating patients that did not have this virus, because they have something else. I do not know that that is contradictory. I'm just guessing, but Judy has said those carrying a CFIDS diagnosis have this virus by greater than 95% and in a later study, about 98%, so that is only 1-2 patients out of 100 that might have something else. That is to be expected.

 

[Sing]

Thank you Summer

Thanks so very much for your detailed summary of findings and links above.

Now for a resentment! I notice in reading the articles that all the people who have staked out territory, or their egos, trivializing ME/CFS are trying to get their licks in. Undoubtedly they will work hard to derail this, but the Whittemore Research Institute has stacked the deck beforehand with high level researchers, protocols and equipment, it appears. They have got this by the b*lls! Almost literally too with the association with prostate cancer. Now that is something that our medical establishment pays attention to. It does bug me because having a seriously disabling, painful, impoverishing, condition for life which affects millions worldwide hasn't qualified as worthy of belief much less a serious research effort. Politically, linking ME/CFS in some way to cancer, the big C (death) men's nether parts (sex) and HIV (death, sex and contagiousness) is a winning play! I know this may seem an odd, unfeeling pt of view but I am cheering at the strategy! I think that the Whittemore is going to continue to lead the charge and be d*mned efficient about it too, unlike the CDC, etc.They want to get this problem taken care of ASAP!

I am thankful for their work and even enjoy the political angles I am seeing.

Cecelia

 

[Summer]

I certainly do take heart in Dr. Mikovits statements that XMRV will be found in most CFS patients and in autism and the few FM patients that have been tested.

So do I, Cort.

 

[Cort]

Grace's note regarding RNase L. and XMRV is very hopeful in this regard. It states

Some patients have also asked about the test available for RNASE panels at VIP lab, which tests for the original immune defect that pointed to XMRV. We found this test does not have clinical value, nor does it seem to show whether a patient is likely to have XMRV. A recent study of 38 CFS patients at GMA, tested with the RNASE panel, found it was not helpful in directing treatment at this time. Dr. Mikovits' study on CFS patients also found the RNASE panel did not indicate who would have XMRV.

It suggests that you don't need the RNase L defect to carry the virus. When I said the WPI was 'stacking the deck' so to speak it didn't account for the fact that they may have been 'stacking it' incorrectly. That wouldn't be surprising since there's so much we just don't know.

If you don't need to have the RNase L. defect it may be don't need the other things as well - the high IL-6/IL-8 levels or the impaired natural killer cells. That finding in itself just kicked the door quite a bit more open with regard to the larger subset of CFS patients. I like it!

(Thanks - I'm going to put that in my blog.)

I assume of course that virtually everyone 'stacks the deck'. I guess a nicer way of putting it is that you put your best foot forward.

(What a wacky saying that is by the way - I wonder where that came from (your best foot!))

 

[Cort]

You're absolutely right Cecilia. The only way Dr. Mikovits got over here is because of the cancer. We're very lucky that she was open enough to that possibility in this disease to check it out. That got the National Cancer Institute involved which got some real money into this disease.

We're not talking about alot of cancer patients. We're talking about a very rare cancer that showed up in I don't know 20 of Dr. Peterson's patients. (I know the potential is there for many more). But we could go on for 100 years disabled, decades of our lives torn away, a burden on society, etc.....with no one in the Federal research arena batting an eye. Thats the way it's been for 20 years.

The federal government's priorities are insane! Cancer is easy to study, its a great career path, there's lots of funding. ME/CFS is difficult to study, the career path sucks, there's little funding. The only reason for this is that the federal government is ignoring it - despite the fact this disease reportedly cost the US economy about $20 billion a year! It's just crazy.

 

[mojoey]

Hi Nina

By "non-classic cases of CFS" I was referring to patients that didn't have an onset at all. Sorry I know that was a bit confusing, but the second part about organic primary mitochondrial disease should clear it up.

Within patients that fit the criteria for CFIDS, he said 20% have a clear case of an agent X infection and the rest have an immune dysfunction. I wonder if the XMRV is present in both cases, because when he was referring to agent X i don't think he was referring to XMRV but rather the herpes viruses.

Regarding the issue of whether (nearly?) all CFS/ME patients will be found to have XMVR, or only the viral-onset, this apparent contradiction concerns me:

Why did Peterson tell Joey in August <http://pathogensoup.blogspot.com/2009/08/norcal-update.html>:

Peterson has given up treating non-classic cases of CFS,
such as people that have had fatigue all their lives. He
believes they suffer from an organic mitochondrial disease,
whereas post-infectious fatigue patients have "acquired
mitochodrial disease," which is secondary to immune dysfunction.

Yet, Summer reported in this thread <http://forums.aboutmecfs.org/showpost.php?p=8063&postcount=12>:

Judy Mikovits said that eventually every CFIDS patient will
be positive. They have 98% positivity now (more since the
study as the antibiody test is being refined). Yes, 2/3 had
active virus in the blood, but the others had a strong
antibody to it, so also have XMRV.

Peterson would have known the study results in August.

If anyone (Cort?) has the opportunity to interview or ask questions of Peterson or Mikovits, I'd like to hear how the reconcile these contradictory positions.

Nina

 

[Cort]

The WPI just posted this on their Facebook site.

For the purposes of this discussion this sentence was the most revealing:

Not all patient samples that were positive had the biological markers of low NK cell function and RNase L defect.

These two don't appear to open the door to XMRV infection. Good news for the very broad group of ME/CFS patients.

XMRV is strongly linked to patients with ME/CFS. This initial finding was confirmed in three different laboratories, the National Cancer Institute, the Cleveland Clinic and the Whittemore Peterson Institute.

Patient samples were donated from different locations around the US. This was not one cohort. All patients met the Fukuda and Canadian definitions for CFS and the study included age and sex matched controls with zip codes but Science did not feel that information was important to this publication. Not all patient samples that were positive had the biological markers of low NK cell function and RNase L defect.

The importance of this finding is two fold. One that XMRV is an infectious retrovirus found in significant numbers in the blood of people who are ill with CFS and only in a very few without symptoms of ME/CFS. Number two is that it was found in 4% of healthy controls which means that 10 million Americans may be infected with this retrovirus.

 

[jenbooks]

Cort I think the NCI is interested in the prostate cancer as a meaningful proof of principle that may ultimately have wider application to our understanding of cancer and viruses. Thus their interest is legitimate and a lucky break for WPI. This finding was news partly because of the cancer connection and research on it will give insights into CFS as well and puts WPI in the mainstream.

 

[Stuart]

From Anxiety to XMRV "da bomb"

This maybe an oversimplification, but my impression is that we may not have to worry about sudden versus slow onset.

It may be analogous to a bomb, XMRV being the charge, a co occuring infection like one of the suspect viral agents or other systemic defect setting the fuse, and the stressor (Cortisol etc.) lighting the fuse.

It maybe that some have a "long fuse," or that the systemic breakdown takes longer to manifest (a function of "terrain"?).

The only tissues tested so far I think are white blood cells, might it be that some PWC have XMRV, but the white blood cells are not infected? Even 67% active infection is an amazing result, but 95-98% subsequent finding (antibody +) seems close to being definitive.

If you watched the youtube video of Judy Mikovits and Annette Whittemore you heard Judy mention that there is in her opinion a definate chance of vaccine activation! Makes the choice on flu shots even more troublesome! A vaccination could induce or exacerbate a flare/relapse, but a bad flu could be as bad or worse.

If my muddled brain recalls correctly, B cells get activated (overactivated?) but can't find (or kill) the agent of activation, and the system wears itself out ("firing blanks").

This may be why we "collect" infections, having been shown by WPI's previous research with the DNA Microarray (from Nancy Klimas' work with NIH cancer reseach) which found we have 10x as many viral infections as healthy controls (something like 30-50 vs. 3-4).

If there is no ridding ourselves of a retrovirus, can "cleaning up the mess" like Mike and Joey's doctors seem to do be an answer? Even if it is, if it doesn't make big pharma $$$, it won't be recognized or approved.

I feel some of the stress and anxiety felt is that maybe we have an answer, but for many it may be out of reach. A bit like the patient who is told by a doctor you need x procedure to save your life, but their insurance company denies treatment as being "experimental," but if you have cash you can have it.

 

[sosumi]

If you read through the Media Links threads, I have pulled out different quotes from Judy, as each article cited different things she said. I really do not have that much inside info, and most of what I am finding is in what Judy has said, reading DeFreitas Patent, which is loaded with info, and a study on hearts infected with XMRV that is producing the type of cardiomyapthy we have and some info I have gotten from some Peterson patients.

Summer, could you direct me to the heart study? I looked through the Media Links thread and I must have missed it. Thanks!

 

[Summer]

Summer, could you direct me to the heart study? I looked through the Media Links thread and I must have missed it. Thanks!

Sosumi, the link to the heart issues with XMRV infection is not in the media links, but here is the link to the study, and it is the type of heart issues seen in PWC's:

http://jvi.highwire.org/cgi/content/full/81/22/12307