New XMRV study to be undertaken.

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Interesting you mentioned Mianserin. My mother had severe intractable pain in her left leg which almost totally disabled her.

She was given a combination of painkillers and Mianserin. The first night she took them she wakened up the next morning lying on the bathroom floor where she had swallowed them :eek:

She then took just one tablet lying in bed. Very quickly, her pain went after months of trying out treatments. The consultant said she had had an infection in the nerve causing inflammation which the mianserin got rid of that. (No one ever digested it was psychological or depression)

Mithriel
I used Mirtazapine in the past myself, it didnt do anything in terms of altering my mood but it was one hell of an effective sleep med, worked on me in the same way you described, almost instant. Knocks the socks off of things like Zopiclone. However, there are still some potentially dangerous properties i have since discovered with it too so noone should take this as an endorsement .
 

free at last

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Dear Mithriel,

This tread is about a new XMRV study to be undertaken, funded by GlaxoSmithKline, annonuced on the ME Associations website.

I respect your choice not to discuss vaccine contamination.

I just cant understand why the fact that the subject has polarised positions, disinformation on every side and no clear answer is the reason for you not to discuss it.

Basicly, that is the kind of subjects that is meaningful to discuss. Make no sense to me to discuss subjects where everyone agrees, no polarised positions exists, all information is known and there is a clear answer to the subject.

I also wonder why treads now are categorized as either Happy, Happy or Sad, Sad - and that only happy things should be posted in this tread.

I dont have any answers to the vaccine contamination story, but would sure like the wonderful ladies and gentlemen in this forum to discuss it.

It is announced that they shall use WPI patient blood samples as positive controls.

Well, lets say the statement from them would be: "we cant find it in the BioBank patients, and we cant find it in the WPI samples."

Is that a statement from a true truthseeking researcher, or is it a statement from a company trying to cover up a potensial loss of many billion dollars?

Are we better of, then?

So much for Happy, Happy.

Wish you a Happy and Funky Easter :)
oooooooo someones not happy about the fact that they was politley asked to start a seperate thread about something that hasnt been proven, if it turns out as you suggest, then of course that will not make any of us happy, But i agree with the statement whole heartedly that after so many years of being laughed at, and left to rot in a bed with a illness that most get very little medical help with, can you really blame us for not wanting to see something good in this.

Indeed untill what your saying is proven to be true, or actually pans out, then at the moment its not much more than a theory that really puts just negativety into a thread that brings just a little bit of hope for the future, from a group that so clearly desperatly need hope, any hope.

If you cant see that, or are insensetive to that, then ill let on lookers look at this conversion and they can decide for themselves who if anyone is just a little bit out of line here. I could go much further but ill refrain myself, and try be polite before it starts to get real negative, on what could be something positive for us all.

If your right about this, then at the moment theres no way of really knowing for sure, and i still think we can ( should ) try to be just a little bit optomistic untill the conspirecy breaks our damm hearts
Thats the whole point, hope you really understand Mithriels view more clearly now, which i wholeheartedly agree with, Thanks for being understanding happy easter
 

JillBohr

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julius

Watchoo lookin' at?
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I find it quit interesting that nobody bothered to discuss the above,
Gee funkster...I did;

from post #54

Is it possible that they have been looking at their old vaccines and found XMRV in them, and now have a real motivation to try to squash this bug out of existence? If they could 'devise' a negative study (which they certainly could) using this cohort, that could possibly knock XMRV right off the map. They would certainly have the motivation given the sht storm that would ensue if they had been giving kids XMRV for the last half century. I dunno, is this just crazy talk.

I think these guys will find whatever they want to find. If they want to find XMRV, then thats good for us. If they want to not find XMRV, then that's bad for us....very bad.
 

justinreilly

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Research into Other Retroviruses could Yield an XMRV-style Bonanza for Us.

I have a feeling that GSK have seen a bigger market than just us ME patients at stake in all this. Dr Mikovits has been gradually laying out the foundations for encouraging research into other possible fields of XMRV associated illness such as autism. Controvertial to say this here probably, given the arguments about cohorts and patients and selection criteria, but what if ultimately a whole category of teenage onset anxiety-related disorders (such as panic disorder or eating disorders for example) were also discovered to be caused by this retrovirus. Who knows where the boundaries will end? We ME patients are maybe just the linkpiece in a much bigger picture.

Imagine if there is ultimately a big switch of anti-depressant usage over to anti-retroviral medication. GSK would have a huge market to mop up.
WPI and Dr. Mikovits are so smart, saavy, effective and efficient! My respect for them grows every day. It is people like Dr. M and others at WPI who really spur huge advances in science, tech and society.

I kind of pity the people I read on places like erv blog who are obviously bright and knowledgeable, but are so arrogant they think they know it all when I, as a non-scientist but informed ME patient, see through many of their naive mistakes. They have such a childlike faith in 'science' as it is currently practiced. America was built by people who combined knowledge with vision and passion to help (or to at least 'add value').

Dr. M has made these possiblities clear to big pharma. That a big pharma study such as this has been greenlighted is so huge! Dr. DeFreitas tried nobly to do this with Chiron, but unfortunately NIH's Steven Straus told Chiron the DeFreitas retrovirus (CAV) was BS and we were a bunch of neurotic middle aged women and he was able to kill pharma interest in retroviruses in ME. Thank god WPI has been smart and diligent enough to learn from CDC's and NIH's savage and totally unwarranted destruction of her reputation.

I agree this could be the next blockbuster drug with monster profits. I feel that XMRV is causative, but there are probably one or more retroviruses (CAV, and perhaps JHK) and retrovirus/virus hybrids (Dr. Martin's bug, etc.) contributing in some fashion. Once we get some momentum and funding I'd really think a big push to look into these bugs would yield a lot of fruit. On CAV for example- DeFreitas has done so much of the groundwork, and tech has improved so much since her finding in 1991 that a little research could potentially produce another XMRV-type bonanza for us. I really hope WPI looks into these.
 

Bob

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Very interesting stuff. I would expect these will be some of the antidepressants that are outside of the Reputake Inhibitor class then.
I've found the articles where I read about it:

http://www.newscientist.com/article/dn18442-drug-for-depression-tried-on-stressedout-rats.html

http://www.newscientist.com/article/mg17022954.600-a-mind-under-siege.html

Here's a quote from the first article:

Duman hopes that a cytokine inhibitor could be developed as a treatment option for depressed people who don't respond to conventional therapy. "Depression is not just a single disease," he says. "A subgroup of depressed patients could have the inflammatory condition, while other subgroups might be better off with existing antidepressant drugs."
And from the second article:

...They suggest that some people who are depressed may actually be suffering from an over-heated immune system, and that damping down inflammation could offer a brand new way to treat routine clinical depression—while making billions for the pharmaceuticals industry into the bargain. It's a theory that recasts depression—one of the great plagues of our time—as a chronic inflammatory disease like rheumatoid arthritis.
The first inkling of a connection between mood and inflammation came around 1990. Michael Maes, a psychiatrist now at the University of Maastricht in the Netherlands, was investigating claims that depressed people are unusually vulnerable to infections and cancer, a theory that could be explained by a lacklustre immune system. But when Maes looked at immune cells from depressed people such as natural-killer cells, monocytes and macrophages, he found instead that the cells were more active than normal, and spewed out more inflammatory cytokines. "We had expected to find just the opposite," admits Maes.
 

Hope123

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Vaccines themselves reactivate latent viruses.

Apparent contamination can just mean that the reactivated virus can be detected where it could not be before .

Proliferation then causes a rise in titre sufficient to cause symptom.
This is correct. Dr. Klimas in her talk last December stated that vaccination causes B and T cells to become activated and to proliferate. If a retrovirus happens to be sitting quietly already in our chromosomes, the activation of the immune system by vaccination will cause some immune cells to divide. Each division means that another copy of the retrovirus is generated and this might tip us over the point to symptoms and illness. This is a theory of course but implies that it's not vaccine contamination that is leading to illness but activation by the vaccine. Hence, onset might not be traced to one type of vaccine (flu, hepatitis, tetanus, etc.) but rather to a number of different vaccines.
 

justinreilly

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The good news is that GSK will be totally motivated to get a positive result, so that they can sell more anti-viral medicines... This is their only motivation for getting involved so they will be purely focused on finding XMVR... They will use all of their resources to make this work for a positive result... And I think that they will consult with JM... She has already said that she has been working with the pharma industry.

This is completely the opposite situation to the UK study by Wessely, who was totally motivated to get a negative result, and did just enough work to make sure that the result would be negative, and no more!
This strikes me as so key and makes me very hopeful! Whether or not a negative bias exists going in to a study strikes me as the single biggest predictor of results.
 

cfs since 1998

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So, anybody up for the discussion...?
No, because I think if GSK suspected that one of their own vaccines contained XMRV they would be ignoring it, not funding a study. The simplest explanation is usually the correct one: a pharmaceutical company wants to sell products.
 

justinreilly

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This GSK study raises two questions in my mind, one optimistic, the other pessimistic

First one (optimistic), does this give us any window into the state of the assays right now? Would they be undertaking this if the blood working group or someone else had not yet developed more accurate, sensitive tests? I notice that Dr Lapp mentions a similar cohort to WPI, but nothing about testing methods.

Second question. Is it possible that they have been looking at their old vaccines and found XMRV in them, and now have a real motivation to try to squash this bug out of existence? If they could 'devise' a negative study (which they certainly could) using this cohort, that could possibly knock XMRV right off the map. They would certainly have the motivation given the sh:Dt storm that would ensue if they had been giving kids XMRV for the last half century. I dunno, is this just crazy talk.

I think these guys will find whatever they want to find. If they want to find XMRV, then thats good for us. If they want to not find XMRV, then that's bad for us....very bad.
Wow! Really insightful! You're making me really wonder now.

The energy that many establishment players have put into supressing and warping ME science and crushing patients makes me think that it is possible there is some big 'secret' out there (beyond the fact that there is an severe infectious disease out there , care for which insurers do not want to pay) such as this. Food for thought.
 
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Motivation issue...

Well, I don't think there is any evidence yet that XMRV is in vaccines. Unless GSK has tested their vaccines and found it, they should have no fear in XMRV research.

Even if they did, the point here is there is more than one drug company. If GSK didn't do it first, someone else would. How much better to be first and get the sales first along with the golden egg called the patent. This is not a time to be reading the scientific journals waiting until everything is more settled before you start a study. By that time, some other company would be half way around the track while you are just starting.

And given the past, very likely there will be more than one drug (see HIV). So there is enough possibility for many. But the first one out of the gate gets the patent and the patients. This is why two drug companies called Mikovitz the day the Science Journal article came out. It was not validated and yet they still jumped like a scared frog.

Also, as much as companies have been trying to push anti-depressants on us by blurring the lines between CFS and depression symptoms in their ads, I assure you they have been keeping up with latest studies that show the difference and they know their drugs aren't making CFs patients well. They can access the Internet and they can read, too.

Even if they thought it was the same, the patients and many doctors don't. So you got to market based on perception, whether it is reality or not. Remember, CDC did announce in 2007 that CFS is a separate and real illness.

There's a whole bunch of patients carrying a diagnosis of CFS and they want our money or our insurance money. To get the medicine that markets for "CFS" in the ads would be big bucks.

It's capitalism. And while I think of capitalism is immoral when it comes to health care, occasionally it does work. Competition is good.

Tina
 

justinreilly

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Originally posted by Erik Johnson:

I dono. It could be partly just that social organisms are programmed to be very suspicious of and hostile toward a person who seems like they might be shirking full and energetic compliance with duty. They might therefore be less reluctant to admit that such a person's behavior might not be the person's own fault.

CFS resembles laziness even more than unipolar depression does - at least if you discount the person's claims of extraordinary fatigue - because many CFSers aren't deeply depressed (and so lack depressed speech and face), and even among those who are depressed some are much less intensely depressed than they are fatigued.
That's interesting. Hadn't thought of that much before. I think that uneducated doctors and laypeople are less likely to think we're lazy than depressed since the average losses experienced by pwME are so huge and the distress expressed at this by patients doesn't jibe with the 'happy lazy' person image. But I do have to say that this false attribution to laziness is common among less than averagely disabled people with ME.

I have an about average case of ME- can only work say 5 hours a week with extreme difficulty and my parents were convinced forever that I was malingering and didn't want to work, so the laziness false attribution has been a huge problem for me.
 

fred

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Bob: "Duman hopes that a cytokine inhibitor could be developed as a treatment option for depressed people who don't respond to conventional therapy. "Depression is not just a single disease," he says. "A subgroup of depressed patients could have the inflammatory condition, while other subgroups might be better off with existing antidepressant drugs." "

[Apologies for being too stupid to work out how to quote this properly]

Given that cytokines often have been mentioned in the same sentence as ME (see quote below from telecon discussion between Dr Mikovits and Dr Cheney), does this mean that cytokine inhibitors may be a potential treatment for both this disease and depression?

Cheney: "In the Lake Tahoe epidemic many years ago, but also here in my clinic in Ashville, we frequently see an elevated CD4 to CD8 ratio, primarily due to CD8 depletion, and I wonder if you might comment. Is CD8 depletion something that XMRV might be able to cause?"

Mikovits: "We dont see XMRV as a cytotoxic virus, thus far. Certainly, it is possible through indirect effects, through mediators or whats known as cytokines, we could see dysregulation of the adaptive immune response which is the CD8 cell. But we dont see direct cytopathic. More this virus seems to be like HTLV-1 and not kill its cells like HIV."
 

Bob

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Apologies for being too stupid to work out how to quote this properly.
lol, don't worry fred, it takes a while to get used to the forum...

At the bottom of the message you want to quote - If you click on 'Reply with Quote' - it will automatically quote the entire message for you - you can then delete any of the text you don't want to include - but make sure you leave the QUOTE marks at the beginning and end of the text intact. i.e. the bits that look like this: [/QUOTE]
 

Bob

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I think if GSK suspected that one of their own vaccines contained XMRV they would be ignoring it, not funding a study. The simplest explanation is usually the correct one: a pharmaceutical company wants to sell products.
I agree. This isn't a cover-up story... JM has already said that she has been contacted by pharma companies about collaborating to find successful anti-retrovirals for XMRV.
 

Bob

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This may be irrelevant.

But according to 'Pharmexec', GSK have just signed a $1.5 billion deal with Isis, a company specialising in 'antisense' RNA therapies and have established a 'rare diseases' R&D section.

Short article :

http://pharmexec.findpharma.com/pharmexec/Deals/GSK-Inks-15-Billion-Collaboration-Deal-with-Isis/ArticleStandard/Article/detail/663527?contextCategoryId=43753.
That's very interesting Marco. There's no suggestion that they intend to apply this RNA technology to viruses, although it's a very interesting thought that they might be able block viral DNA/RNA, and therefore block the replication of viruses, using these drugs. The article talks only about blocking human RNA though, and I can't see how this would apply to XMRV research.