New XMRV study to be undertaken.

[Cookie Monster]

During infancy I also had very unusual problems (for a child) with social anxiety... Since getting ME, my depression seems to have cleared up, completely... this maybe just a coincidence, but it's very strange because I'd have thought the depression would have increased while I'm coping with a severe chronic illness... so i can't help wondering if maybe I've always had XMRV, since birth, and that it has caused me to have neurological problems all my life... And maybe when I went down with full-blown ME, the inflamation (or immune response) moved away from my brain into my body... maybe my body now responds to the virus in a different way.

Thanks Bob. Lots of similarities in our history there.

I also no longer get full blown depressions, with ME its more like a series of much milder and shorter lasting low periods that occur randomly...almost as if a depression has been chopped into timy pieces and fed through my brain it little bits over the period of a few years.

Psychiatrists always said my clinical depression is caused by having a genetically-linked natural reduction in the appropriate level of neurotransmitters (serotonin/norepinephrine)in certain parts of my brain.

However, now having had ME for 12 yrs (since my mid 20s), i would hazzard an experienced guess that my depressions were more likely caused by temporary blockages to the blood supply in those certain parts of the brain, those blockages being formed by neuroimmune-activated inflammation. If i am found to be XMRV positive i would also expect to have had it from birth.

 

[Bob]

Thanks Bob. Lots of similarities in our history there.

I also no longer get full blown depressions, with ME its more like a series of much milder and shorter lasting low periods that occur randomly...almost as if a depression has been chopped into timy pieces and fed through my brain it little bits over the period of a few years.

Psychiatrists always said my clinical depression is caused by having a genetically-linked natural reduction in the appropriate level of neurotransmitters (serotonin/norepinephrine)in certain parts of my brain.

However, now having had ME for 12 yrs (since my mid 20s), i would hazzard an experienced guess that my depressions were more likely caused by temporary blockages to the blood supply in those certain parts of the brain, those blockages being formed by neuroimmune-activated inflammation. If i am found to be XMRV positive i would also expect to have had it from birth.

That's an interesting theory Cookie Monster...
I think I read recently that there is a new theory that some anti-depressants might actually do most of their work by reducing inflammation of the brain rather than by their direct action on neurotransmitters... unfortunately, I can't remember the details of this as my memory is useless!

It's interesting that it is widely agreed that bi-polar is an 'organic' disease (i.e. it is based in biology, not psychology), so why shouldn't this be the case for some types of depression?!

I'm waiting for JM to announce a link between XMRV and bi-polar disorder... but maybe I'm just getting too carried away with the excitement now!

 

[parvofighter]

Have a V99!

:victory:First of all V99 - you ROCK! :victory:
​

Coming late to this thread, but thanks for this wonderful find! OK, here are my take-aways:

• Glaxo Smith Kline has bought into the "Cohorts matter" position (especially the Canadian Criteria) - even if the BMJ and others-who-shall-remain-nameless didn't adequately tackle this issue earlier. This is HUGE.

Glaxo Smith Kline... has funded a new study that will evaluate
CFS patients with characteristics similar to the Science paper.​

• GSK believes XMRV exists. And GSK believes XMRV was found in the Science cohort of Canadian Criteria/Fukuda Criteria patients. This is a massive endorsement of the WPI/Cleveland Clinic/NIH(NCI's) Science work. Evidence of this?:
  

"CFS patients known to have XMRV from the Science paper
will be used as a positive control." ​

• The XMRV Snowball is growing. My instinct - GSK isn't just listening to the Science results, but in-the-pipe results, such as from CROI, Mikovits, Singh, etc. In other words, Mikovits, Silverman, & Ruscetti aren't t the lone voices in the wilderness. Even better, BIG ears are listening!

• Posturing and politics only go so far when trumped by good science. The BMJ and others have got some s'plaining to do. Move aside for the big boys. The cat has been let out of the bag. As Ladybugmandy said:

Well now that GSK is involved, its a whole different ballgame isnt it?
i guess the big players didnt pay too much attention to the dutch and UK studies then."​

• Use of BioBank requires publication. Negative studies to be published too, which is after all what we all want. We want robust science, so we know what we're dealing with in terms of viable treatment options for Canadian-criteria ME/CFS. Thanks to Jennie for the update from the CAA. Perhaps it's time now for Dr Vernon to come out swinging, to put the BMJ study's cohorts out of their misery?

I would also like to mention that researchers who use samples from the BioBank will be
required to submit their findings to peer-reviewed publications.​

• The BioBank is off to a running start. Great news that the BioBank is getting involvement (and funding now) from GSKs study. This will create immediate momentum for other studies too.

But my absolute fav:

• Cohorts are starting to matter to the big boys too. When a multi-billion dollar pharma giant says, "Cohorts matter in research on ME/CFS and XMRV", people listen. (FYI: GSK's common stock on the NYSE: $97 Billion market capitalization). And thats an AMAZING development!

I think I'll celebrate with a bone that I buried in the garden. Now where'd I hide it...:Retro smile:

 

[julius]

This is kind of a shot in the dark here, but yesterday this article came up on Medical News Today;

'GlaxoSmithKline (NYSE: GSK) announced that it has re-submitted the supplemental New Drug Application (sNDA) for Avodart (dutasteride) for prostate cancer risk reduction among men at increased risk of developing the disease to the US Food and Drug Administration (FDA).'

It's a drug that inhibits the conversion of testosterone into dihydrotestosterone. It is probably not related to the XMRV announcement...but who knows.

 

[parvofighter]

DHT inhibitors - agree

This is kind of a shot in the dark here, but yesterday this article came up on Medical News Today;'GlaxoSmithKline (NYSE: GSK) announced that it has re-submitted the supplemental New Drug Application (sNDA) for Avodart (dutasteride) for prostate cancer risk reduction among men at increased risk of developing the disease to the US Food and Drug Administration (FDA).'

It's a drug that inhibits the conversion of testosterone into dihydrotestosterone. It is probably not related to the XMRV announcement...but who knows.

Not a short in the dark at all Julius. Despite cannibalization of their inappropriately-prescribed antidepressant market for ME/CFS'ers, they're looking at the big picture. I think your hunch is s spot-on. GSK is thinking a market for prostate cancer, ME/CFS, potentially autism...

Remember this from Dong & Silverman's "Androgen stimulates Transcription and Replication of XMRV" from: http://www.ncbi.nlm.nih.gov/pubmed/19906923?dopt=Abstract

Furthermore, DHT stimulated XMRV replication by 3-fold, whereas androgen inhibitors
(casodex and flutamide) suppressed viral growth up to 3-fold.

​

FYI from what I understand drugs like casodex and flutamide are no longer under patent, so not much economic incentive to flog these. Adovart/dutaseride from GSK on the other hand...

All we needed was for substantial economic interests (the sleeping giant, as it were) to recognize that ME/CFS is a significant market if treated appropriately. Consider also the financial impact of antiretrovirals vs antidepressants. A powerful motivator for them to get on the biological bandwagon for ME/CFS - and quickly.

 

[julius]

And a much better side effect profile than ART.

Impotence 6% - Decreased libido 4% - Ejaculation disorders 2% - Breast Disorders 1%.....

Ok, maybe not the best news :Sign giggle:, but still the lesser of two evils.

 

[sproggle]

Glaxosmithkline baby!!! :victory: :victory:

Ok that was way too energetic for this time of night/morning :tear: 3.40am!

But things seem to be moving in a positive direction &here's hopin it continues we all definitely deserve to finally have some bleeding answers!

Jan xx

 

[Eric Johnson from I&I]

I think I read recently that there is a new theory that some anti-depressants might actually do most of their work by reducing inflammation of the brain rather than by their direct action on neurotransmitters... unfortunately, I can't remember the details of this as my memory is useless!

Yeah, there is such a theory. Some labs have found spectacular levels of inflammatory cytokines in depression, including a lab at Harvard that found big elevations in like 20 different ones. Other labs find nothing on this front. Been going on for several years, 7+ I think.

It's interesting that it is widely agreed that bi-polar is an 'organic' disease (i.e. it is based in biology, not psychology), so why shouldn't this be the case for some types of depression?!

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.

Seen from the outside, unipolar depression doesn't resemble laziness perfectly: rather than contentment there's the rather relentlessly depressed speech and face of the person. But bipolar depression resembles laziness even less. The manic phenomena can be spectacular and sometimes psychotic. When Virginia Woolf had manic episodes come on, she would talk a bit faster and a bit more bit by bit until finally she was yammering constantly, and then she would move on to blathering incomprehensible stuff, though I don't know whether she would have then reached a delusional state or not.

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.

 

[dmarie4301]

Whoo hooo!!!

It's been SOOOO quiet and now this!!!! However, if it doesnt replicate WPI's study, then what?
Funkster, I think it makes sense that these new illnesses in our generation have sprung up from contaminated vaccines. How else could an animal retrovirus transfer to humans?

BUT, it's a great thing that this new study is going on, WPI has got more in the works, and there's ARUP in Utah now too doing a study. They are not telling us everything yet at all.

I SO hope for all of us this nightmare can be explained and treated.

This time, however, Im cautiously optimistic, since in October I jumped the gun and blew $400 with Co-op. I realize now this research is very complicated stuff and will take alot of time.

But this is looking hopeful!!!:victory::Retro smile::victory:

And I gotta add, Im amazed at how quick info gets to this site. I had just gotten WPI's word of this on Facebook, came here, and you all had been already talking about it! This forum and website is a great resource. Thank you CORT!!!!

 

[Funkster]

GSK is a large producer of vaccines of all kinds - Rotarix is one of them, and March 22, 2010 the FDA found that this vaccine was contaminated with DNA material from porcine circovirus 1, a virus from pigs that is not known to cause disease in humans or animals http://www.cnn.com/2010/HEALTH/03/22/rotavirus.vaccine/index.html.

A pig virus in a childrens vaccine? In 2010? Not very convincing. What might have happend there from 1970 - 2010?

So, if ME/CFS = XMRV and XMRV comes from MuLV (in rodents) - how did it come into human beings - possibly in 3,7 % of the healthy population?

Well, 30-40 years of a very slow worldwide epidemic casued by contaminated vaccines?

It might be that GSK will find themself in a double position over the next weeks and months, as this story unravels...

- Funkster

I find it quit interesting that nobody bothered to discuss the above, and I am just wondering if this is due to;

a) total lack of interest in how XMRV came into humans?
b) the story is too incredible to be true?
c) its considered to be paranoia?
d) just dont know yet, so I dont bother to comment?

As long as there is the slightest possibillity tthat XMRV is brought upon us as a result of contaminated vaccines from the Big Pharmas, I would be careful in celebrating their show up on the arena.

They bring money and resources, but they also bring the potensial "Big Pharma Dilemma" - we are actual the cause of the disease and now we have to fix it. By any means.

The fact that all this vaccination programs is developed in cooperation with the health authorities and orchestrated by The Big Pharmas make me a bit concern on this matter.

They are kind of in the same boat.

I find this "Big Pharma Dilemma" intriguing, especially for you people that live in the "Class Action Land".

Today you might celebrate them into ME/CFS research - tomorrow you might meet them in court.

So, anybody up for the discussion...?

- The Funkmaster

 

[free at last]

This is great news really changes a lot doesnt it, but dont overlook the WPI uk study its happening now, im due to be tested in two weeks, and a lot of others even sooner, might see the results of that before GSKs results, Much to be watching in the coming weeks, We all dont want this virus, but if we have it, no amount of wishfull thinking is going to make it go away, i want the truth, and soon should be getting it, Not sure how im going to react if negative, ( back to square one for a reason of the past traumas or future ones ) or how im going to react if positive. But the truth is worth having, what ever that turns out to be, My reasons are somewhat less important now ( Im mostly recovered but not completely so excersise can sometimes be a trigger ) But i realize how this is so important for all of you still suffering badly on a daily basis, Good luck for the truth everybody, An end to the lies might actually happen soon Go WPI and GSK if vaccines did cause this then it doesnt change the truth of a cause or reason to understanding what made me so ill, in the short term, i dont care but long term thats another matter we just want to know whats in our bodys right now. Not sure what vaccine caused my condition 15 years ago as i didnt have any, apart from childhood ones, very long delay to ME / CFS So thats on the fence in my mind ? had pelenty of flu shots since though

 

[Kati]

awww funkmaster, I read but decided to leave the debate to someone else that has the energy. There has been some animated discussion lately to say the least and I am choosing to stay away for it leads me nowhere and takes energy, precious energy... But you've been read !!! :yinyang::yinyang::yinyang:

 

[dmarie4301]

Funkmaster: Im not sure if Im up for the debate. I dont have any sources. But there is plenty of talk about the polio vaccines that many baby boomers took, being contaminated, causing HIV. You get lots of hits when you put in polio vaccine and HIV.

I remember back in the 70's, there was another swine flu outbreak, and I got a shot in the arm for that. I was in highschool.

My nephew is autistic. He started talking, then stopped after vaccinations. Could it be it wasnt just the mercury, etc in the vaccine that did this?

Vaccines have to be cultured on animal tissue. If that animal has a retrovirus in it, wouldnt it be possible the vaccine would carry the retrovirus with it? Assuming we are sick from a possible exogenous retrovirus.

I dont have resources to back me up. I had stumbled across a website that was all about this, saved it on my old computer and the source didnt transfer in my favorites to my new computer.

So, I have nothing to refer you or anyone to. But it has been an idea posed on the board before.

Has mankind, in fighting other illnesses created new ones??? Sounds to me like a familiar sort of error mankind tends me make....in solving one problem in dealing with life on this planet, we create new problems. We do this out of ignorance, not understanding possible repercussions.

BUT, XMRV is related to a mouse retrovirus, have any vaccines been made using mouse tissue as the culturing tissue? I dont know.

I think it is important to ultimately understand how HIV jumped from monkeys to people. I dont know if I buy the idea that it came from hunters eating contaminated monkey meat in the jungle.....all speculation, unless someone has info that can address this issue.

I do find it interesting, that as far as we know, CFS/ME, Fibro, etc, appears to show up in "civilized" countries....where they vaccinate. Is there CFS in underdevelped countries? Havent heard of that yet.

If XMRV has caused my illness, I want to know how I got it.

Those are my thots on it. I will be trying to recall the website I ran into a few months back....it was very intriguing. Vaccination as a source of this catastrophe, with subsequent spread via infection, makes the most sense to me as the origin of XMRV or HIV. We got vaccinated, and then could then pass it to our children.

I would like to see more debate on this for sure. And I know there are people on this board better educated than me.

So I will close my little mouth now.

 

[Mithriel]

I didn't want to discuss vaccine contamination because it is a big mess of a subject with polarised positions, disinformation on every side and no clear answers.

This is a happy, happy thread so starting a new one about vaccine contamination would be better.

For information, I will just say that polio and the ME epidemics were thought to be worse in countries where children did not meet the organisms till later. Polio was feared because dirty slum kids didn't get it, it was expected they would get sick, but more middle class communities where germs didn't spread so quickly.

My mother grew up in a place where there was 1 toilet for 6 families with each family averaging 10 people. Enteroviruses spread easily in those sorts of conditions. Her best friend died of diphtheria but there was no polio epidemic here til the fifties when everyone was rehoused to decent homes.

Many children's diseases are much worse if caught as an adult.

Mithriel

 

[Gerwyn]

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.

I wonder if the Glaxo microbiologists found a hitherto unidentified retrovirus in one of their test subject's blood and have put two and two together.This time making four!

 

[Funkster]

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

 

[willow]

As long as there is the slightest possibillity tthat XMRV is brought upon us as a result of contaminated vaccines from the Big Pharmas, I would be careful in celebrating their show up on the arena.

No, I'm not up to the discussion Funkster. But after the initial joy that GSK is upping our profile and implying we're suffering from an organic treatable disease, using the Candain Critera etc, a number of concerns including this one permemated my dense skull.

 

[Mithriel]

I just meant you should start a new thread titled "Vaccine contamination; should we trust CSK" or something rather than discuss it in this one. Then anyone interested can know what it is about and it will be possible to find it in the future. I've no objections to a discussion.

By "polarised positions, disinformation on every side and no clear answer" I mean that this could easily lead to seventy pages about that mixed in with a thread about something else.

We deserve happy happy threads. After forty years I finally have a chance to discover what has gone wrong in my body and ruined my life. I want to be glad. There is precious little for us to be happy about, we are oppressed on all sides.

Is one thread too much to ask?

Mithriel

 

[Cookie Monster]

I think I read recently that there is a new theory that some anti-depressants might actually do most of their work by reducing inflammation of the brain rather than by their direct action on neurotransmitters..

Yeah, there is such a theory. Some labs have found spectacular levels of inflammatory cytokines in depression, including a lab at Harvard that found big elevations in like 20 different ones. Other labs find nothing on this front. Been going on for several years, 7+ I think.

Very interesting stuff . I would expect these will be some of the antidepressants that are outside of the Reputake Inhibitor class then.

If you take Mirtazapine (Zispin by trade in UK) as an example, it doesnt have any of the traditional range of anti-depressant properties, it kind of sits in a class of its own. It is actually a reformulated version of an old banned (or withdrawn?) drug called Mainserin. Mainserin was manufactured initially for use as an anti-histamine (an extremely potent one at that). It has no reuptake inhibition effect, but does effectively dry out mucus linings especially targetting the lungs and the guts. If this is the case, then i suspect it may well also reduce swelling of the linings/fascia(meninges?) of the brain .

Off on a tangent now...apologies...Has anyone got any knowledge as to how accurate scientists can be at predicting something like when the XMRV virus jumped to the human population? Could it be possible it happened considerably earlier than 30-40yrs ago?
I ask because some doctors say that ME has probably been around for well over a hundred years.

 

[Mithriel]

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

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