Will WPI find the answers for those sufferers who are XMRV Negative!

[Otis]

"This is why I'm disappointed that the CFIDS Association's BioBank is screening out gradual onset patients to begin with. "

Yeah I just learned yesterday they are screening out CFS patients who are males without pain. This is suppose to be a pretty well known subset of CSFers. I go to one of the four docs who screen for Biobank and prior to yesterday I was looking good as a candidate but not after my doc visit yesterday where I was excluded.

I'm sure that's disappointing to say the least.

I was not aware of this subset despite the fact that at one time it would have fit. Personally I would like to see LESS arbitrary divisions until we find MORE common ground amongst CCC-based studies.

Do the study, track the "subsets" and make conclusions accordingly. Otherwise the conclusions are clouded (I'm sure the counter-argument is that this is a well-defined cohort) by an assumption. It would also seem to limit retrospective studies based on the data. Perhaps real scientists know better than I.

I'm a gradual onset male for whom pain was a late-arrival but it's bad and it appears to be here to stay.

Oddball all around, 'tis me. :Retro smile:

Otis

 

[Adam]

Respecting each other

It's still the working hypothesis of WPI that XMRV causes CFS though, that 6 months after the initial press release. Of course, they have to be prudent otherwise they would lose all credibility in the scientific community.

So far, history taught us that all exogenous retroviruses are serious bugs, causing AIDS and cancer. So If the (good) studies consistently find it in patients, we can be pretty confident that treating it will improve our health, causal factor or not. At this point, any help is welcome.

We don't know yet the cause of multiple diseases like MS, that doesn't mean that shouldn't be treated. You can be sure that drug company won't give up the opportunity to give us their expensive drugs...

gu3vara. Nice, well thought through and rational post. Thank you.

Or not. Do you people even read the press releases about this discovery? originally posted by JPV

A small gripe JPV - As we are all members of the same online community, might it not be better to show respect to another fellow member, even when pointing out something you believe they may have missed or not understood? Employing phrases such as You people can upset people and suggests a lack of kindred spirit.

 

[jspotila]

My apologies to the moderators if this is an inappropriate threadjack. The thread on the BioBank covers many of the concerns expressed here, including why the criteria are what they are now, and the fact that the Association will widen the criteria as soon as it can. That's not a vague promise; it's a fact.

 

[PoetInSF]

I have started to wonder, for those who are XMRV positive that will probably be your cause of CFS symptoms.
But what about those who are XMRV negative, are WPI going to continue to search for what is wrong with those patients.

Because we could be left with a frightening situation, ...

XMRV-CFS association is not yet established, let alone the causality. I wouldn't worry over NON-EXISTENT problem for now. (That's the kind of stress that you don't want for your CFS). We can cross that bridge if/when it is ever proven.

 

[Overstressed]

Many questions, so little answers... It will be though for the WPI to get the research on XMRV-CFS ongoing, so your concerns are valid, realistic I think. But also, how hard will be the search for a cure for CFS ? If, if XMRV is the cause of this misery, we know, there are already anti-retroviral drugs available, thanks to HIV. So, I think funding for any new drugs for CFS would be extremely difficult, and so we're doomed to take antiretroviral drugs for the rest of our lives.

Sure, it's a huge improvement, but, after 3 decades of research on HIV, if new research is conducted on XMRV, an eradication of this virus is a MUST, in my humble opinion. It can not be the case that the pharma industry make little modifiactions to their existing drugs and establish a chemical marriage between patient and drugs, for a lifetime.

Eradication of XMRV ? I have my doubts...

OS.

 

[oerganix]

WPI has 10 other research projects going on

I have started to wonder, for those who are XMRV positive that will probably be your cause of CFS symptoms.
But what about those who are XMRV negative, are WPI going to continue to search for what is wrong with those patients.

Because we could be left with a frightening situation, a huge amount of people that maybe given a psychiatric lable.

I have something called POTS - postural orthostatic tachycardia syndrome. I have had this since I got CFS, no one knows what causes POTS.

If I am XMRV negative, I'm not happy to have a psychiatric lable to explain my physical suffering, so I guess I would simply just have POTS and not CFS or XMRV.

What I'm trying to say is, will WPI continue to fight for the rest of us, if and when they get the XMRV/CFS connection approved.
Will they continue there research to explain the rest of us ?

1) Being XMRV negative by blood test may not mean you don't have it. Sometimes the immune system is so damaged not even antibodies can be found. Sometimes it can only be found in other tissue.

2) WPI is investigating other aspects of CFS: (All the more reason to donate NOW, if you can.)

Current Research Program

Study Title and Description Collaborators

Role of Chronic Inflammatory and Immune Stimulation by Active Herpesvirus Infection in the Development of Immune Dysfunction in CFS
Studies of immune abnormalities in this CFS cohort will involve phenotypic analysis of NK, DC, and T cell populations. States of activation and differentiation will be studied to determine whether the cells are immune activators or suppressors due to response to infection. The goal is to understand the imbalance in the immune system that leads to unregulated virus expression. Francis Ruscetti, PhD, NCI
Dennis Taub, PhD, NIA
(INIP Research Award)

Novel Viruses/Co-infections in Subgroups of CFS
A Virus DNA Microarray (Virochip) was used to screen a cohort of CFS with Immunological defects and increased incidence of Mantle cell lymphoma (MCL). Francis Ruscetti, PhD, Cancer Inflammation Program, NCI

Role of the Interferon/RNaseL Antiviral Pathway in CFS
The goal of this study is to characterize defects in the Interferon/RNaseL antiviral pathway which result in viral persistence. Robert Silverman, PhD, Cleveland Clinic

Role of Inflammatory Cytokines and Chemokines in CFS
The purpose of this study is to identify and develop the serum biomarker patterns of cytokine and chemokines, which correlate with clinical disease and can be used to monitor intervention. Dennis D. Taub, PhD, NIA

Host Susceptibility in CFS
The goal of this study is to elucidate genetic factors of susceptibility and the dysregulation of the host defense system in order to develop biomarkers for diagnostic development and thus predict response to immune modulating therapy and vaccines. Jonathan R. Kerr, MD, PhD, St. Georges University, London UK
Mary Carrington, PhD, NCI
Mike Dean, PhD, NCI

Enumeration and Function of Natural Killer (NK) Cells in CFS
The purpose of this project is to develop improved NK diagnostic tests for both the number and function of NK cells. Doug Redelman, PhD, UNR, Dept. of Microbiology & Immunology

Epidemiologic Evaluation of Lymphoma and Cancer Incidence in Nevada CFS Cohort
The goal of this study is to determine if a possible cancer cluster exists in the cohort of Nevada CFS patients. Paul Levine, MD, George Washington University

Study of Clonal T Cell Receptor-gamma Rearrangements in Nevada CFS Cohort
The purpose of this study is to determine the significance of clonal T cell receptor-gamma rearrangements in the pathogenesis of CFS. Dorothy Hudig, PhD, UNR, Dept. of Microbiology & Immunology

Development of a Whole Genome Transcriptome Assay for HHV6
The goal is to develop a whole genome transcriptome assay for HHV6 and a sub array for HHV6A specific detection to be used as a diagnostic tool or research tool to understand the viral life cycle in disease. Rachel Bagni, PhD, Applied Technology Program, NCI

HHV6 Latency in CFS
The goal of this study is to understand the role of HHV6A latency in bone marrow hematopoietic stem cells in the pathogenesis of CFS. Stephen St. Joer, PhD
Marianna Bego, PhD, UNR, Dept. of Microbiology & Immunology

 

[Adam]

Hi Oerganix

Thanks for reminding us just how much ongoing research there is, not only at the WPI, I should add, but also in UK. The ME Research UK site lists all the ongoing projects they are currently funding/co-funding. One day there will enough research papers, not only to pinpoint the causes of this disease, but to bury the psyche lobby.

 

[Mithriel]

A few thoughts on things in this thread. I hope you will forgive me not quoting everything. :Retro smile:

A research biobank should have people who are most likely to have the illness, then any results can be applied to a wider population. It is like that for all illnesses as you are most likely to get reliable information if you have a homogeneous population.

From my reading, I think Judy Mikovitzs thinks that XMRV is like HIV. AIDS consists of many illnesses that HIV allows to take hold. XMRV may well be the thing that makes some cases of Coxsackie B or EBV become chronic and severe leading to what we know as ME/CFS.

Even if XMRV is accepted as the cause of ME/CFS, I doubt if we will all be tested immediately. We might get treated better by medics and benefit agencies based on our long standing diagnosis. :Retro smile:

Once the drug companies realise how many of us there are the dollar signs will appear and they might do lots of research. Treating our symptoms could make them a fortune!

As ME/CFS becomes respectable the psyches might lose their stranglehold.

Mithriel

 

[subtr4ct]

On the subject of BioBank patient characteristics, I just added a poll to the testing, treatment, and transmission forum regarding sudden vs. gradual onset illness.

 

[alex3619]

NonXMRV CFSers will not be forgotten

Hi, I just wanted to reply to the general debate about nonXMRV CFS patients. According to Judy Mikovits this is currently holding at about 15% of us, if I recall correctly. However, as has been pointed out the testing is still in development. Many of the 15% may be diagnosed in the future, some with just retesting (yes, lab tests sometimes fail for technical reasons).

The WPI is has a mandate to research and develop treatments for neuro-immune diseases. CFS is just the starting point, and XMRV the lead research candidate for understanding and treatment. I expect that those who are XMRV negative will find research into their condition will slow down, but this is NECESSARY even for them (and I am mindfull this could be me). If these patients have something different, then they are not being served by being included in the same studies. Data from these patients will just be noise in the statistics. The researchers will have to start looking for alternate leads, then design studies, run pilot studies, etc. This all takes time. Since I was diagnosed with CFS, at least two alternate diagnoses have been discovered, one a rare genetic disorder. I was a test subject in one of the follow-up studies for a mutation in the cortisol binding globulin gene (I don't have one of the two known mutation types) but this raises the point that there are many as yet undiscovered genetic diseases. Add to this the likelihood that XMRV wont be the only lurking virus that awaited discovery, and there are many potential avenues still to be researched.

I have had a private exchange of emails with a leading CFS advocate, and we both agree that nonXMRV patients cannot be ignored. I wont let it happen if I can do anything about it, and there are many who think like me. So if you test negative for XMRV, do not despair. It is just one more step on the path to a solution, and many will be with you. Bye, Alex Young

 

[*GG*]

"This is why I'm disappointed that the CFIDS Association's BioBank is screening out gradual onset patients to begin with. "

Yeah I just learned yesterday they are screening out CFS patients who are males without pain. This is suppose to be a pretty well known subset of CSFers. I go to one of the four docs who screen for Biobank and prior to yesterday I was looking good as a candidate but not after my doc visit yesterday where I was excluded.

They contact me, I fit the description. I am a male and I have pain. More info please!

 

[jspotila]

They contact me, I fit the description. I am a male and I have pain. More info please!

You can read more about the BioBank and the current enrollment criteria at www.solvecfs.org.

 

[Cort]

I've never heard that males with pain are excluded from the Bio Bank! ?????

The exclusionary criteria for the first study are what they are because the first study is on XMRV. Because its a pathogen it makes sense to look at people with acute onset. This is a good thing; they're trying to get together the group of patients who are most likely to have XMRV infection and examine them. Basically they're building up as strong a cohort - who meet the CCC criteria, have acute onset and NK cell problems - as they can. With all these problems with the Oxford Definition and the Wessely cohort, etc. - this is exactly what the WPI and the CFS community wants to see with regard to XMRV.

I have gradual onset and I was upset at first but now I think the CAA should be hailed for doing it this way. They're basically creating the best chance to find XMRV that we've had since the WPI study.

 

[gracenote]

The exclusionary criteria for the first study are what they are because the first study is on XMRV. Because its a pathogen it makes sense to look at people with acute onset. This is a good thing; they're trying to get together the group of patients who are most likely to have XMRV infection and examine them. Basically they're building up as strong a cohort - who meet the CCC criteria, have acute onset and NK cell problems - as they can. With all these problems with the Oxford Definition and the Wessely cohort, etc. - this is exactly what the WPI and the CFS community wants to see with regard to XMRV.

I have gradual onset and I was upset at first but now I think the CAA should be hailed for doing it this way. They're basically creating the best chance to find XMRV that we've had since the WPI study.

Subtr4ct started a Phoenix Rising Poll on XMRV for sudden or gradual onset. It will be interesting to watch this as more people take it.

Sudden 4
Gradual or since birth 2

Here is the thread:

For those who are XMRV positive, was illness onset sudden, gradual, or since birth?

 

[aepalisades]

Heart Symptoms and Valcyte

Alphahusky- I had a lot of heart symptoms too- severe palpitations which are almost completely gone after taking valcyte. I only get palpitations now when I lay down in bed at night for less than 1 minute the palpitaions act up, amke me cough. Coughing seems to reset the palpitations so I wonder if now it is due to Mitral valve prolaspe I have that is mild.

Yeah, we people do. And the last quote:



"There is still much that we do not understand," including whether people with either disease just are more prone to infection, cautioned Tufts University microbiologist John Coffin in an accompanying editorial. Still, "further study may reveal XMRV as a cause of more than one well-known 'old' disease."

The jury's still out.

I don't think retroviruses are usually "passengers," but say they are. Doesn't mean that anti-retrovirals won't help improve our situation. I was on acyclovir for awhile, and it definitely helped. It was when I had to stop seeing that doctor for insurance reasons, and I had to cut down and then stop it, that my body went back to being basically non-functioning. I ended up losing my job, that I'd held for some time though was in danger because when the doctor cut back on the acyclovir, I just started getting sick with one thing after another, so because of sick days I was already on the chopping block. Taking care of my daughter is pretty much more than I can do. You bet when my current pregnancy is over, I'm going back on a lot of meds I was on before that helped. And if anti-retrovirals help, then I will go on them. I also took Valcyte very briefly but that same doctor was afraid of it, and my insurance wouldn't cover it at a dose suggested by Montoya. I understand that many turned out to not have been helped by it, but I have significant cardiac symptoms (and POTS and NMH) and Valcyte was definitely doing something. But three weeks in, he stopped it and refused to put me back on Acyclovir.

If I don't have XMRV, which I doubt because for me, I got this abruptly with Mono (though I think I was exposed with a vaccine a few years before as my immune system started showing problems, and while I got sick more often and "weirdly" I didn't consider myself sick at all. But after Mono, I just never recovered and I date the illness from then), and in the early years I matched AIDS patients' symptoms 1:1. If there is no retrovirus causing this, then there is something else very seriously wrong. I mean, to this day, 25 1/5 years later, I still get night sweats frequently. I mean so bad, the bed is soaked. My glands are still swollen all these years later. So if a retrovirus is not causing this, if XMRV is not causing but is a "passenger," I still want some treatment for it.

The 4% or so of people who have XMRV and no symptoms may develop them later on. Just as Epstein-Barr can cause just a "cold" in a lot of people, it can cause severe Mono, as in my case. I would be willing to be the 4% without symptoms are like the small number of people with HIV who don't get sick. But maybe, somewhere down the line, people with XMRV may get some kind of cancer.

The jury is still out.

 

[Bob]

What I'm trying to say is, will WPI continue to fight for the rest of us, if and when they get the XMRV/CFS connection approved.
Will they continue there research to explain the rest of us ?

Hi villagelife...

I have read Judy Mikovits saying that she will absolutely fight for everyone with CFS/ME, and she won't leave anyone behind... and she won't rest until everyone has an answer...

She was absolutely passionate about this...

Unfortunately I can't find the quote... but she definitely said it... I was struck by her passion... and very pleased to hear her say it.

I share your worries about XMRV villagelife...
but if XMRV does turn out to be a cause of ME, then I expect that the WPI will then turn their attention to everyone else with ME/CFS who doesn't have XMRV.

Bob

 

[Bob]

Do you people even read the press releases about this discovery?

JPV, I don't know if you are aware, but the tone of your message comes across as slightly aggressive... or at least, that is my perception of it.

To answer your question, yes, we people do read the press releases... and we read far far more...

XMRV has not been shown to be the cause of ME... but there is a possibility that it might, in time, be proven to be the cause of ME/CFS, or a subset of ME/CFS... or it might end up being another false dawn.

 

[Bob]

If I am XMRV negative, I'm not happy to have a psychiatric lable to explain my physical suffering, so I guess I would simply just have POTS and not CFS or XMRV.

What I'm trying to say is, will WPI continue to fight for the rest of us, if and when they get the XMRV/CFS connection approved.
Will they continue there research to explain the rest of us ?

Hi villagelife,

Relating to testing negative for XMRV...

Another thing that I have read is that Judy Mikovits says that she will keep the XMRV negative blood samples in storage (those tested by WPI) and retest them continuously when new testing techniques evolve...

She also says that there might be an XMRV type I and XMRV type II, and if this is the case, then she might only be able to detect XMRV Type I at the present time...

So an XMRV negative blood test at the present time does not indicate that a patient definitely does not have XMRV... it will take time to perfect the testing.

Bob

 

[Adam]

Hi villagelife,

Relating to testing negative for XMRV...

Another thing that I have read is that Judy Mikovits says that she will keep the XMRV negative blood samples in storage (those tested by WPI) and retest them continuously when new testing techniques evolve...

She also says that there might be an XMRV type I and XMRV type II, and if this is the case, then she might only be able to detect XMRV Type I at the present time...

So an XMRV negative blood test at the present time does not indicate that a patient definitely does not have XMRV... it will take time to perfect the testing.

Bob

Nice post Bob. We need to keep our faith in Judy M, Annette Whittemore and the WPI and anyone else who is batting for us right now.

 

[anciendaze]

CFS is, as my on-line name suggests, a long-term problem. My possible acute phase took place before there was a convenient label, assuming I did not get it through vertical transmission. Don't pin all your hopes on a magic wand which will sweep away XMRV and fix everything.

Research which is not in serious dispute shows XMRV has only three genes which have been completely sequenced and identified by function: gag, pol, env. These provide the capsid containing genetic material, reverse transcriptase, and the envelope shown to the immune system. There are no separate "payload" genes.

This strongly suggests most of the incredibly varied problems which turn up in this illness are caused by coinfections. XMRV simply doesn't carry a lot of information.

Once you get past the original infection, you can expect a series of battles to correct all the subsequent cascade of failures. For the general public, this has considerable value, because it is very likely diseases with unknown etiology will be found to have identifiable origins, at least in CFS patients. This will benefit people who don't have CFS.

A final caution, if you aren't in this for the long haul, you may not survive to become healthy. This illness is not for quitters.