From the 1st annual XMRV conference

[Navid]

Huh. I'd have to go back and look, but I remember PittsburgMan simply making the point that replication studies should be done where all parties use blood from the same patients, use the same methods of collection and strorage, and the same assay. Sounds like a really sound, logical idea to me, to end once and for all this stupid in-fighting, as well as the politicization of the definition of ME/CFIDS when it is really a medical science issue.


Of course for us, that would mean the blood samples coming from Peterson, Cheney, Bell, Klimas, WPI, etc.....but wouldn't that be grand?

pittsburgh guy also responsible for this:

" insisting on XMRV/prostate cancer connection be "divorced" from the XMRV/MLV/CFS issue. I took that to mean: "How dare you compare this serious male illness to the one that depressed/crazy women get"


yes very sound ideas....that will take forever...before we ever see any treatments...that is what i worry about. i want him to understand the urgency ppl afflicted with the disease feel now and everyday.

i think he's very wise and i want him on our side...but i want speedy action. i don't wnat to wait 5-10 yrs for treatment.

your last scentence is right on....we have dr's who understand (and treat) this patient cohort inside out...use their knowledge and the patient base...we don't need to start from zero.

clinical trials could be started w/cheney, bell, peterson, klimas, bateman, enlander, komaroff, levine, burrascano's xmrv+ base NOW!!!!

thanks.

 

[leela]

right on shebacat!:victory:

 

[LJS]

Huh. I'd have to go back and look, but I remember PittsburgMan simply making the point that replication studies should be done where all parties use blood from the same patients, use the same methods of collection and strorage, and the same assay. Sounds like a really sound, logical idea to me, to end once and for all this stupid in-fighting, as well as the politicization of the definition of ME/CFIDS when it is really a medical science issue.

Of course for us, that would mean the blood samples coming from Peterson, Cheney, Bell, Klimas, WPI, etc.....but wouldn't that be grand?

I was under the impression that is already underway according to this:
http://www.forums.aboutmecfs.org/co...gen-Ace-Lipkin-to-Lead-Big-NIH-XMRV-CFS-Study

The Study - When asked by Amy Dockser Marcus why the conflicting results thus far he cited different types of patients, sample preparation and methods. His study will include testing samples from different areas of the country at the WPI, FDA and CDC. Here's some info on the study from the Marcus article

The new study, Lipkin says, will involve fresh blood samples from 100 CFS patients and 100 similar, but healthy people — 25 of each group from four different sites around the country, to provide geographic diversity. The samples will be processed, blinded and sent to the FDA, the CDC and the Whittemore Peterson Institute, which led the team that published the original Science paper. If a lab finds a sample is positive for XMRV, further tests will be needed to confirm the result. If one lab finds a positive sample but another lab doesn’t, the same samples can be shipped again, with a new blinded code, to be tested again. “If you get the same result, it is valid,” Lipkin says.

 

[OneWaySurvival]

Loving the WPI optimism

Andrea Whittemore left a very encouraging comment about 6 hours ago under the Q&A transcript from XMRV global action. http://www.facebook.com/notes/xmrv-...t-international-xmrv-workshop-qa/438284026796

Andrea Whittemore: "I know it seemed discouraging but what people can say in public vs. Behind closed doors is very different . I trust Judy if she said Grand Slam she knows a lot more than we do"

Now I like the sound of that!

It's part of a larger comment where she also requests people write to Fauci and Collins for funding of WPI research and 5 centers of excellence. Does anyone know if there is an advocacy project doing this yet (coordinating letters to send to Fauci and Collins)? I get overwhelmed sometimes with following the various advocacy efforts and being unsure of where to best invest my limited energy to help out, but this seems like a big one, and it's coming as a suggestion from Andrea herself. I'll post this on the Advocacy section too so we can stay on topic here.

Mainly I just wanted to share that gold nugget of enthusiasm from Judy about how well the conference apparently went. Leave it to the WPI to pick me up when I'm feeling discouraged about how far away help seems for our illness. Thank you WPI!

 

[August59]

"5 Centers 0f Excellence"

Andrea Whittemore left a very encouraging comment about 6 hours ago under the Q&A transcript from XMRV global action. http://www.facebook.com/notes/xmrv-...t-international-xmrv-workshop-qa/438284026796

Andrea Whittemore: "I know it seemed discouraging but what people can say in public vs. Behind closed doors is very different . I trust Judy if she said Grand Slam she knows a lot more than we do"

Now I like the sound of that!

It's part of a larger comment where she also requests people write to Fauci and Collins for funding of WPI research and 5 centers of excellence. Does anyone know if there is an advocacy project doing this yet (coordinating letters to send to Fauci and Collins)? I get overwhelmed sometimes with following the various advocacy efforts and being unsure of where to best invest my limited energy to help out, but this seems like a big one, and it's coming as a suggestion from Andrea herself. I'll post this on the Advocacy section too so we can stay on topic here.

Mainly I just wanted to share that gold nugget of enthusiasm from Judy about how well the conference apparently went. Leave it to the WPI to pick me up when I'm feeling discouraged about how far away help seems for our illness. Thank you WPI!

The "5 centers of excellence" is going to be very big, as this is what is going to be needed to "validate" Dr. M's work to the "science" community. Funding for these "centers" has been virtually impossible until now. We all know what doctors and facilities have the "correct" cohorts in place to make this happen. These "coordinating letters" to Fauci and Collins (maybe Lipkin too?) are crucial and need to very convincing and to the point. My biggest fear is the "CDC" screwing this up in 2 ways. They don't know how to perform the test and if they supply cohort samples, with it being a blinded study, it's going to put a lot of negatives in the batch right from the start. They should test them "unblinded" first, which would kick CDC samples out from the start and show the scientific world that there cohort selection was the problem from the very beginning (Wishful thinking!).

 

[Otis]

pittsburgh guy also responsible for this:

" insisting on XMRV/prostate cancer connection be "divorced" from the XMRV/MLV/CFS issue. I took that to mean: "How dare you compare this serious male illness to the one that depressed/crazy women get"


yes very sound ideas....that will take forever...before we ever see any treatments...that is what i worry about. i want him to understand the urgency ppl afflicted with the disease feel now and everyday.

i think he's very wise and i want him on our side...but i want speedy action. i don't wnat to wait 5-10 yrs for treatment.

your last scentence is right on....we have dr's who understand (and treat) this patient cohort inside out...use their knowledge and the patient base...we don't need to start from zero.

clinical trials could be started w/cheney, bell, peterson, klimas, bateman, enlander, komaroff, levine, burrascano's xmrv+ base NOW!!!!

thanks.

His name is John Mellors and he's the Chief of Infectious Disease @ U of Pittsburgh. I'm pretty sure if you google his name and Universiity of Pittsburg you'll turn up an email address.

 

[Navid]

thank you otis...hopefully my brain will create a forceful yet eloquent letter tonite while i sleep and i can send it out to him tomorrow.

good night

 

[xrayspex]

I have a raging toothache so in no mood for b.s. and still skipping around reading comments and news here, but sunshine says SToye from UK and involved with keeping m.e. stuff secret there and was he the dude pulling the mic from Judy? WTF!? is going on here. I don't want to jump the gun but reading what george wrote about the two camps emerging, govmt and wpi.....so it is turning out collins and alter not on our side or what? what is the bottom line here or hopefully its not that cut and dried, nuances?

So anyone have the emails of who we should write organized somewhere and easy link? would be much appreciated. When I compose myself can send one from my work email and try to sound pro and calm etc

I feel really done with the games, I mean they say you can't win against the government, perhaps not, but really really ready to go down over it

 

[Dr. Yes]

I don't want to jump the gun but reading what george wrote about the two camps emerging, govmt and wpi.....so it is turning out collins and alter not on our side or what?

Hey Spex,

I see no evidence that Alter is on the wrong side.. if anything I would say he is probably the closest thing to an 'ally' the WPI has had in a government agency (outside the NCI).

Don't know where Collins stands, but writing to him can't hurt...

 

[xrayspex]

thanks dOc YeS

sure hope yr right

 

[ixchelkali]

What i find irronic is the fact that all the psychological studies base whether their treatments work or not on changed functioning alone... but it seems a study based on us taking AIDS drugs, wouldnt be classified as a good study using that same thing to guage success or not.

Does this mean that all the psychological studies werent good including all the ones done by the government departments in the past???

Its interesting how what makes a good study, the criteria is varying in the different fields, seems a kind of bias thing there. What is good enough to proclaim success with psychological studies is said not to be good enough to use in retrovirus med studies. I think its pathetic that the very sick has to wait till scientists sort themselves out more when surely even if it is a very small study of using these meds in XMRV postives, could be started. Why is what was good enough before, suddenly isnt good enough now for even just a wee study being started?

Personally, I can't help but think it's good news if future research into ME/CFS is held to a higher standard of science than those pschological studies have used. I personally don't want to take a drug that's proclaimed successful according to the Simon Wessely standard of success (i.e., a drug that works as well as CBT or GET). No, thanks.

 

[Forbin]

(H. Pylori - Dr. Marshall proved that bacteria caused stomach ulcers and antibiotics would literaly cure them. It took down a huge industry of surgeons who operated on hundreds of patients per year to remove ulcers and portions of patients stomachs. It was believed that the ulcers always came back because people engaged in the same stressful and poor habits after the surgery. Ulcers were caused by stress, poor eating habits and drinking. The new form of treatment was implemented very quietly over a five year period and no one really new about the change unless you were a patient.)​

It didn't just take down surgeons. Tagamet (cimetidine), a prescription ulcer drug, was the first "blockbuster drug" to reach $1 Billion dollars in sales annually.

In 1994, the NIH published its Consensus Statement on the treating of peptic ulcers with antimicrobials.
http://consensus.nih.gov/1994/1994HelicobacterPyloriUlcer094html.htm

By a mysterious co-incidence, just one year later, in 1995, that the FDA cleared Tagamet for over the counter treatment of "heartburn." That same year, the FDA also cleared the prescription ulcer drug "famotidine" for OTC use for the same purpose, i.e. "heartburn."
http://findarticles.com/p/articles/mi_m1370/is_n7_v29/ai_17434463/

 

[Berthe]

Hi everybody,

I just want to thank everybody ons this forum who made and will make fantastic comment on this topic. I want to thank George (and Cort) in particular for making it possible. The information on this topic is high-quality and I praise myself lucky to be able to read and understand the bigger part of it. Because I'm Dutch this doesn't speak for itself.
I'm not able to go into lenghty discussions with you because of the energy it requires to do this in another language. But I wanted to let you know that you all give me hope and make me warlike.
Please know that I'm very grateful!

Love,
Berthe

 

[Bob]

I understand that antibodies can form and attack almost anything foreign, and as with autoimmune disease can attack the body.

But if we speak specifically of XMRV, antibodies wouldn’t form and attack XMRV if it was benign, so wouldn‘t this show that XMRV is causing damage, and therefore disease?

And on this point, if a person is infected with latent XMRV, would they show negative on a serology test? Again proving that the body specifically creates antibodies for XMRV when it is active, and causing disease.

Hi bullybeef,

I'm no expert here, but that's not quite my understanding of how our immune systems work...

I think we do have an immune response to many viruses and bacteria that do not cause disease.
If you think about AIDS, then it gives an example of this...
With AIDS, the body's immune system is severely compromised such that everyday, ubiquitous, viruses, that do not usually cause disease, become a serious risk to life for the AIDS patient.
These usually benign viruses are only benign as long as we have an active immune response to them.

As far as I'm aware, there's a few different types of benign bacteria/virus... One type of benign virus has no chance of infecting us in the first place because it simply hasn't evolved to infect us (i.e. it might be an animal virus) and so it doesn't have the cellular equipment to invade our cells. But this doesn't mean that there's no immune system response to them... Our bodies tend to attack and get rid of any foreign invader in our immune system. A virus that is unable to infect our cells still activates an immune response, so that it is completely destroyed.

It could be that case that XMRV is a normally benign virus, which always has an immune system response in everyone it infects. But maybe it causes disease in a fraction of those who are infected with it because of a susceptibility due to genetic differences or environmental factors such as infection with other pathogens.

Or it could be the case that XMRV is always benign, albeit with an immune response, and that it just happens to infect people with ME more than the normal population. (This might be due to a compromised immune system or genetic factors.)

So there are many possibilities, but my understanding is that an immune response does not indicate disease or illness, but it can be purely a healthy immune response.

It might also be the case that a person is no longer infected with any virus whatsoever, but that they still have anti-bodies to the virus which show that they were once infected with the virus. (This would be due a totally successful immune response that eliminated the virus.)

So my understanding is that an antibody doesn't prove that there is a disease process, or that there is presently infection... It only proves that there was once an infection with that virus.

My personal belief is that XMRV causes damage... And there do seem to be parallels with ME, AIDS and HTLV infection...

Like I said, I'm no expert, but that's my understanding of how it works.

 

[bullybeef]

Thanks Bob,

My questioning was completely open to discussion, I’m not knowledgeable enough to give any opinions yet.

What you say does obviously make complete sense. I was just throwing the antibody response out there, and whether it could give us a clue to what XMRV is doing.

I do suspect that the likes of Mikovits, Klein and Silverman may actually know exactly what it is doing, but maybe it is difficult to prove at this time. Maybe it is out there awaiting publication. Here's hoping!

BB

 

[Bob]

Thanks Bob,

My questioning was completely open to discussion, I’m not knowledgeable enough to give any opinions yet.

What you say does obviously make complete sense. I was just throwing the antibody response out there, and whether it could give us a clue to what XMRV is doing.

I do suspect that the likes of Mikovits, Klein and Silverman may actually know exactly what it is doing, but maybe it is difficult to prove at this time. Maybe it is out there awaiting publication. Here's hoping!

BB

Hi bullybeef,
Yes, I understood that you were just asking questions, trying to understand how this thing works, like we all are...
Yep, I agree that Judy knows sooooo much more than we do right now...
We don't even know exactly what she announced at the conference, but I believe that she's now doing research that she didn't even talk about at the conference...
I believe that Judy has linked XMRV with immune irregularities in the paper she is publishing towards the end of the year, and this could be very significant.
Then there's the blood working group... we don't know how much work they've done so far on their various projects.
There's the other positive studies that we haven't seen the results of yet...
We don't know exactly what the Rucetti's are doing, and what info they have regarding disease causation. Are they investigating other diseases like Autism? Have they found a link between XMRV and immune irregularities? Andrea implied that their work is really significant.
We don't know what Alter is doing now... it's been months since he completed his initial research for the paper he published... and he has millions of dollars at his disposal for more research (I imagine), so he could now be undertaking an enormous project for all we know.
How much work has Lipkin done already? How will he chose his cohorts? How will he decide on methodology of collection and storage and process?
And I've probably forgotten other stuff that's in the pipeline?

There's just sooo much going on right now, and we don't know anything about any of it!
It's very frustrating! But at least it's happening!

 

[beaker]

Collaborators:

Collaborators on this research are Dr. Frank Ruscetti, Laboratory of Experimental Immunology, CCR, NCI; Dr. Larry Keefer, Laboratory of Comparative Carcinogenesis, CCR, NCI; Dr. Judy Mikovits, Whittemore Peterson Institute; Drs. Candace Pert and Michael Ruff, RAPID Pharmaceuticals.

Now is not quite the time to lose hope, we are on the radar!!!
It sure would be a great day when we get a time line on how all this will play out. I haven't ever heard of Comparitive Carcinogenesis or Rapid Pharmaceuticals?

Dr. Candace Pert is the co-discoverer of the opiate receptors.
This I have long known....... but here is some interesting tidbits:

http://en.wikipedia.org/wiki/Candace_Pert

she has published with Frank Russetti in the past.
is co-discoverer of Peptide T.
and has a patent on a treatment for cfs ( anyone know what that is? )
-- to name a few interesting items on her very storied career list.
another wonderful and well respected scientist working for us!

 

[pictureofhealth]

Hi Beaker, just found a link to Candace Pert's own website.

Its a bit pink & girly, but if you scroll down about 1/2 way there is more info on the Peptide patents, CFS and AIDS research work that she is involved in.

http://www.candacepert.com/biography.html

'Dr. Pert holds a number of patents for modified peptides in the treatment of psoriasis, Alzheimer's disease, chronic fatigue syndrome, stroke and head trauma.'

One of these, peptide T, is currently undergoing research, in the United States, for the treatment of AIDS and neuroAIDS. More information about Peptide T can be found at TINM.org."

Check out the Peptide T at TIMN.org

ps maybe we need a new thread for this?

 

[pictureofhealth]

Actually couldn't find anything on the TIMN.org link provided, but found this published item from Dr Candace Pert, Dr Ruscetti and others (from several years ago) re a Peptide T viral inhibitor:

http://www.bentham.org/chivr/sample/chivr1-1/Pert.pdf

 

[VillageLife]

Andrea Whittemore, I know it seemed discouraging but what people can say in public vs. Behind closed doors is very different . I trust Judy if she said Grand Slam she knows a lot more than we do

Grand Slam
:victory::victory::victory::victory::victory: Dr. Judys the best !