XMRV Article in Chicago Tribune and other papers

[ukxmrv]

Mr Kite

I hope that I am understanding you correctly and aplogise if not.

So you use the word "hysterical" because you feel that Dr Mikovits responses are not "appropriate within a scientific framework"?

Why the word hysterical, why not "unproven" or something similar.

Is that correct? I'm not trying to bait you just understand.

From my side I don't find it alarmist. I'm quite calm about it all and it doesn't alarm me or appear hysterical. I'm happy for her to speculate on how bad it could possibly be?

If others want to stop this conversation I'll stop it now if nothing valuable can be gained. Doesn't bother me.

 

[alex3619]

Hi Mr Kite

You are completely correct about this from a scientific viewpoint. I am not convinced it is even remotely relevant in a political viewpoint. The arguement here is between the scientific and political viewpoints, and both are relevant. No matter how hard you try, using scientific arguements will convince nobody with a political point of view. They are different domains of discourse, with different social agendas and methodologies. This arguement will just go round and round until somebody gives up, but nobody will be convinced.

It would be fairer to argue that Judy Mikovits is outside her area of expertise when she delves into politics, just as I am when I delve into advocacy. That may imply her strategy is flawed, it does not imply her reasoning is flawed. Just to restate: her actions are completely understandable, even laudable, from a political perspective, athough there is some doubt about how effective her political actions actually are.

Bye
Alex

That's already been addressed. Within the framework of scientific inquiry, Mikovits' responses are inappropriate. She admits that herself, when she acknowledges that her participation in the autism conference to present unverified information could end her career.

 

[jeffrez]

Mr Kite

I hope that I am understanding you correctly and aplogise if not.

So you use the word "hysterical" because you feel that Dr Mikovits responses are not "appropriate within a scientific framework"?

Why the word hysterical, why not "unproven" or something similar.

Is that correct? I'm not trying to bait you just understand.

From my side I don't find it alarmist. I'm quite calm about it all and it doesn't alarm me or appear hysterical. I'm happy for her to speculate on how bad it could possibly be?

If others want to stop this conversation I'll stop it now if nothing valuable can be gained. Doesn't bother me.

First, we don't even know if XMRV has anything to do with CFS. It hasn't been proved or verified yet.

Second, even if it does, for all we know it could be transmitted in some as yet unknown, non-easily communicable way. That is completely different from HIV being spread by one of the most common human activities there is, not to mention through blood.

So, even if XMRV *IS* responsible for CFS, the route of transmission could make it so unlikely that most people would contract it that the comparison to AIDS in Africa is simply absurd at this point. We don't know enough yet with any certainty to be making alarmist statements like that. It doesn't help anyone, it only creates an environment of nervousness and fear. From the context of some of her other her comments, that appears to have been her intent. I think that is irresponsible. An approach like that tends to damage the credibility of anyone who makes those kinds of statements (and arguably of anyone associated with that person, i.e., us).

The Tsouderos chat says there are at least half a dozen papers in the pipeline as we speak. This issue will get sorted out. Trying to "prod" people with alarmist statements (is that better for you?) is an ineffective strategy that can even backfire and cause more damage than not doing anything. There is no reason why we can't wait for the replication studies. By the end of the year this will probably all be sorted out one way or another. And then if XMRV is a causal factor, appropriate treatments can be developed. But we are definitely not there yet.

 

[Martlet]

So, even if XMRV *IS* responsible for CFS, the route of transmission could make it so unlikely that most people would contract it that the comparison to AIDS in Africa is simply absurd at this point.

I agree. 6,000 Africans die of AIDS every single day of every single week while 11,000 Africans contract it. ME/CFS is serious, but comparing it to AIDS is irresponsible, in my view, and does nothing to further our cause.

 

[free at last]

Mr kite your qoute

The problem is that when we have a group of people who are not scientifically minded or trained and/or who are heavily emotionally invested in an outcome, we tend to see that group want to have their unfounded beliefs confirmed regardless of the truth. On the other hand, researchers and members of the CFS community with a more rigorous and analytical approach to the issue would prefer the truth to come out regardless of what it turns out to be end of qoute

Seems a rather stupid comment Mr kite because although your correct that many are emotionally involved ( im one of them and proudly so )
Makes little sense to want to have that belief confirmed UNLESS IT IS THE TRUTH.

why do you think that might be ? erm let me guess, unless XMRV is in some way connected and responsible for illness, then wishfully hoping for it to be, is not ever going to bring releif from symptoms is it. It will never cure those so desperate for a cure that they will try toxic drugs will it.

That statement is just a little bit off i think, although i hope XMRV will turn out to be the smoking gun, i assure you i ( and i guess others too )
are really not that naive or stupid to want a false truth, with absolutely no benefit to health of the individual whatsoever now would we. Very strange comment that Mr Kite

Strikes me as a little clutching at straws to win a argument that one. So now we can add the emotional card being played now, with the hysterical one

Give us a break, i may not be as intellectual as many on these forums, But my emotinal qualities can often cut through rubbish statements like that. Damm glad im emotionally involved. Otherwise i might end up sounding like someone who likes winning arguments at the expense of obviouse commen sense

Just a little stretching now to play the emotional argument. Ive seen before. ill see it again. HOPEFULLY NOT

 

[lululowry]

I agree. 6,000 Africans die of AIDS every single day of every single week while 11,000 Africans contract it. ME/CFS is serious, but comparing it to AIDS is irresponsible, in my view, and does nothing to further our cause.

Right now, we have no idea what the death rate is from ME/CFS, nor do we know how many people have contracted it or are contracting it.

 

[redo]

And often they don't, too. I think with a Master's degree in Communication I'm well qualified to assess the rhetorical content of discourse appearing in a news article.

What are your qualifications for assessing discourse? Or is making childish plunger jokes the extent of your verbal and analytical ability?

About rhetorics and communication:
What makes me think that Tsouderos is taking the quotes out of context (besides having a history of doing it) is using a picture where she's indirectly portrayed M as alone and despondent, and writing about her in a way that it's easy to believe that she's alone, and not part of a institute. And when she's chosen that thread for the article, I think the quote about "Our continent will be like HIV Africa only worse!" is likely to have been taken (totally) out of context.

After all, Mikovits has a lot to say about what the WPI means and says, and if she wished to send out such messages, she could have easily have done that by writing on the WPI's website, or issuing press releases.

What I think is the case is that the scientist, meaning Mikovits, has a lot more knowledge about science then she has about the media. And unlike the main stream of researches she writes long emails to both people she can trust, people who she don't know, and people who she can't trust.

That makes her vulnerable, and I think the article we've just seen is a result of that.

I think what made the journalist chose to go the path she has, was reading about the link to autism, atypical MS and FMS (combined with the other studies which have been neg.). And that made her convinced that the researcher was nothing but a "sensationalist", and therefore she felt it was safe and correct to do the story the way she did.

What are your thoughts about that Mr. Kite?

 

[free at last]

Think i would also like to add, if the figure of 3.7% Of xmrv infection turns out to be worldwide, how long is it actually going to be before that number jumps to 8% or 16%

what if XMRV is found to cause cancer and ME/ CFS in a large proportion of those infected worldwide, surely the potential for a world disaster is a Possibility, even though many do not die of ME as is the case with HIV, AIDS some may argue death can often be better than years of suffering with this illness, the walking dead if you will.

The potential impact of XMRV worldwide in years to come may be nothing short of a potential disaster.
How long has XMRV been infecting humans anyone know ? Because some math could be applied

because we are possibly close to a 4% worldwide infection, as the infection rate climbs, so will the speed of the infection rate.

4% 8% faster still watching 16% not long now 32%

People may not be falling and dieing like aids, but a 32% worldwide infection rate, could actually turn out to make the HIV problem look like something thats completely controllable

Billions world wide developing ME is going to make the HIV problem look like something where only a small propotion of the world is in trouble. The worlds infrastructure could be in really deep trouble, if XMRV causes illness, and if the figure of 3.7% jumps in the next hundred years. but of course this not even remotely possible is it. ? its all just hysteria isnt it.

Well i agree yes it could be,

But what if its not. Glad some are willing to dither and take that chance. This could potentially be a new Aids that doesnt kill you, just destroys whole communitys and familys, and have a infection rate that makes HIV infection look small in comparison.
Yes im stretching now and possibly being hysterical

But what if im not ?

Is anyone actually bothered about the Possibilities, instead of winning arguments about Politics
No thought not, i give up really i do

If any of what ive said turns to be true, and they cant produce a vaccine, Then we will see hysterical alright

 

[citybug]

The Tsouderos chat says there are at least half a dozen papers in the pipeline as we speak. This issue will get sorted out. Trying to "prod" people with alarmist statements (is that better for you?) is an ineffective strategy that can even backfire and cause more damage than not doing anything. There is no reason why we can't wait for the replication studies. By the end of the year this will probably all be sorted out one way or another. And then if XMRV is a causal factor, appropriate treatments can be developed. But we are definitely not there yet.

I don't think we can assume anything will be sorted out by the end of the year. That's why we need the funding. We don't know which papers are in the pipeline, and Dr. Mikovits is the most likely to know. Some could be poor like the dutch study and some could be great like the in vitro study of antiretrovirals or the monkey study that showed xmrv in other organs. There could easily be no replication study for a year or a few as Glaxo doesn't appear to have started yet (and what if they make a mistake in replication or don't want to compete against AZT?).

Meanwhile if CFS did have funding there could be treatment trials on right now that would give the most information on the causal aspect. She's right it will be much much easier to get funding on Xmrv in cancer. How much of that will apply directly to CFS treatment? I've been afraid this year that I will die soon. Waiting till some scientist gets curious about failed studies and says maybe we should have tried their primers ten years from now is not okay with me. And it's not okay for the new people who will catch this zombie disease and miss high school or college or the rest of their lives. Science is not fast. It's okay with science if they say in 15 years, when everyone is up on the techniques, WPI was right.
Scientific objectivity means the individual lives don't matter.

I agree. 6,000 Africans die of AIDS every single day of every single week while 11,000 Africans contract it. ME/CFS is serious, but comparing it to AIDS is irresponsible, in my view, and does nothing to further our cause.

I agree it's never good to compare yourself to the biggest disasters in world history. Even if I feel I'm already in one. What if it spreads 10,000 to 50,000 a month? Remember Dr. M is seeing it in lyme, gws, autism, ms, fm, maybe breast cancer (prohealth) prostate cancer. If they are 10 to 30 percent Xmrv the spread is huge. It's needs to get checked out! I'm grateful she is sticking with us. What pressure on a 7 person team.
Anyone have figures on how many cats get feline leukemia, and how many cat deaths there are?

 

[citybug]

I guess there is no appropriate comparison.

 

[usedtobeperkytina]

From Wikipedia: Approximately 0.5% of pet cats are persistently infected with FeLV, but many more pet cats (>35%) have specific IgG antibodies which indicate prior exposure and subsequent development of immunity instead of infection.


About forty percent of cats extinguish the virus. Sixteen percent fight it off due to minimal exposure to it. The other twenty-four percent resist the virus at phase four, which will be described later. About twenty percent are able to put the virus into a latent stage, in which the virus will remain until the cat becomes stressed, causing the FeLV to re-emerge. About five to ten percent of cats go through a sequestered stage in which viremia is limited, intermittent, or absent altogether. Approximately thirty percent of cats go through the disease from start to finish, normally resulting in death.

Tina

 

[lansbergen]

Anyone have figures on how many cats get feline leukemia, and how many cat deaths there are?

Cats can be vaccinated for FeLV.

Wikipedia
There are many possible outcomes as to how successfully the cats immune system will react to the virus. About forty percent of cats extinguish the virus. Sixteen percent fight it off due to minimal exposure to it. The other twenty-four percent resist the virus at phase four, which will be described later. All of this usually occurs between sixteen to eighteen weeks after the FeLV infection begins. About twenty percent are able to put the virus into a latent stage, in which the virus will remain until the cat becomes stressed, causing the FeLV to re-emerge. About five to ten percent of cats go through a sequestered stage in which viremia is limited, intermittent, or absent altogether. Approximately thirty percent of cats go through the disease from start to finish, normally resulting in death.

Once the virus has entered the cat, there are six phases to a FeLV infection:

* Phase One: The virus enters the cat, usually through the pharynx where it infects the epithelial cells and infects the tonsorial B-lymphocytes and macrophages. These white blood cells then filter down to the lymph nodes and begin to replicate.

* Phase Two: The virus enters the blood stream and begins to distribute throughout the body.

* Phase Three: The lymphoid system (which produces antibodies to attack infected and cancerous cells) becomes infected, with further distribution throughout the body.

* Phase Four: The main point in the infection- where the virus can take over the body's immune system and cause viremia. During this phase the hemolymphatic system and intestines become infected.

If the cat's immune system does not fight off the virus, then it goes onto:

* Phase Five: The bone marrow becomes infected. At this point, the virus will stay with the cat for the rest of its life. In this phase, the virus replicates and is released four to seven days later in infected neutrophils (white blood cells), and sometimes lymphocytes, monocytes (white blood cell formed in the bone marrow), and eosinophils (another white blood cell).

* Phase Six: The cat's body is overwhelmed by infection and mucosal and glandular epithelial cells (tissue that forms a thin protective layer on exposed bodily surfaces and forms the lining of internal cavities, ducts, and organs) become infected. The virus replicates in epithelial tissues including salivary glands, oropharynx, stomach, esophagus, intestines, trachea, nasopharynx, renal tubules, bladder, pancreas, alveolar ducts, and sebaceous ducts from the muzzle.

Cats diagnosed as persistently infected by ELISA testing may die within a few months or may remain asymptomatic for up to 4 years. The fatal diseases are leukemias, lymphomas, and non-regenerative Anaemias.

 

[lansbergen]

Another source

http://www.felipedia.org/~felipedi/wiki/index.php/FeLV

Feline leukaemia virus (FeLV) is a retrovirus infection that causes immunosuppression in cats.

Since its discovery in the 1960s, the incidence of this disease has been decreasing worldwide, due primarily to rigorous vaccination and elimination strategies of affected cats[2]. In North America, the prevalence of FeLV-infected cats is about 2.3% of the general population[3].

And another one

http://www.merckvetmanual.com/mvm/index.jsp?cfile=htm/bc/57000.htm

Education sites

http://www.peteducation.com/article.cfm?c=1+1316&aid=211

http://www.ragdollcatsecrets.com/blog/feline-leukemia-virus-symptoms-of-felv/

 

[Martlet]

Right now, we have no idea what the death rate is from ME/CFS, nor do we know how many people have contracted it or are contracting it.

But we do know the annual death rate from all causes and, for the most part, we do know those causes. I think it a travesty to liken ME/CFS in the USA to AIDS in Africa.

 

[JillBohr]

Sorry if I had not read all the comments but I am not feeling well but felt compelled to respond to Mr. Kite. Mr. Kite, I have two children with autism. My oldest also started having grand mal seizures two years ago. He has to be watched 24/7 so that he does not injure himself when he a seizure. Our children's hospital opened up an autism clinic because the demand is so great. For ten years, I have heard "scientists" argue that there is no epidemic and is is just a matter of better diagnosis. Well, guess what, years later they now realize that this is a HUGE problem. The majority of the autism cases in the US are under 18 years of age. Most of the states are broke and there is no plan in place to take care of our kids when they become adults. My son's pediatrician did not take me seriously when I said he has having problems with his bowel movements. I took him to Urgent Care to get him X-rayed and sure enough, he is completely full of shit and I am working diligently to get him emptied. I do not know why they have to wait until they start vomiting or bleeding to take them seriously. The Autism Clinic in my city has a standard routine of prescribing anti-psychotic medication and behavioural therapy. If your son had a retrovirus, would you give him risperdal and behavioural therapy? Well, guess what. I did that (because I was an idiot and did not want to take any alternative routes) and my son started developing tics and gained 30 pounds in 3 months. This is what our children are going through. 1 out 63 boys born in the US in 1998 have autism. If that is not an epidemic, I do not know what is. Do I know if XMRV is the cause of this? NO! This is why I am frustrated. Why did not the NIH send funding (even just a small amount) to WPI to test a larger sample of ASD kids to see if they are XMRV positive? If they so concerned about our children's safety when it comes to using chelation, HBOT, vitamins, etc., they would at least take a closer look at this. If this virus can be transmitted via breast feeding, I think it is important for future mothers out there to not breast feed their children. If I was a new parent today breast feeding my son XMRV breast milk, I would be pissed as hell if I knew the powers that be knew that there may be a link between XMRV and autism and they did and said NOTHING. The Science paper was released in October of last year, Tom Insel of the NIH said he was "hot on this" when discussing this at an IACC (Interagency Autism Coordinating Committee) and yet not one dime has been sent to the WPI regarding this. I have still not heard a word as to what the NIH has found because I am sure they have not even looked. They are just words, no action. Yes, I am emotional when it comes to people saying bad things about Dr. Judy. Perhaps it will be too late to cure my children but I will do anything in my power to help other children not to suffer from this. I had such a great life and such a healthy family and in one decade, I lost 2 relatives to MS, 1 relative (my dear father) to brain cancer and I now have 3 relatives with ME/CFS and 2 children with autism. Dr. Mikovits does not sound like she is hysterical at all.

 

[Martlet]

I guess there is no appropriate comparison.

I'd agree with that statement. It's enough that people suffer without trying to quantify the amount of suffering and compare it to suffering from other causes.

Few seem to consider that it is still entirely possible that XMRV has nothing to do with ME/CFS. It is possible that this is just a harmless retrovirus that affects a percentage of the population and that among that population, there are naturally going to be some sick people from all causes. It is possible! So how do we sound to those we want to take us seriously when we start screaming about it being as bad as (or worse than) AIDS? How do we sound when we are not even remotely prepared to accept that Judy Mikovits may be wrong? We have to be patient. We have no choice. Science has to go through its paces. Until it does, the medical profession will not take us more seriously because we shout louder.

 

[Daffodil]

personally, i love what dr. mikovits said. yes, XMRV might not kill quickly like HIV did, but what we go through is a slow death, taking years. because of this, no one "sees" us.

i know plenty of people who said their children were doing well until they got a "flu" and then autism.

i think we need extreme comments like dr. mikovits made. we need panic.

 

[natasa778]

Science has to go through its paces. Until it does, the medical profession will not take us more seriously because we shout louder.

Just as a reminder if HIV positive wasn't shouting VERY loud the science would most likely still be going at very slow pace, and the medical profession would STILL not be taking them seriously...

 

[natasa778]

And btw Scientists take their research efforts where the funding is. If there is no funding they simply won't be interested, or will be interested on personal level but powerless to pursue. Panic can be good if it brings research funding.

 

[parvofighter]

Thank you

Thank you Mr Kite for framing your comments, and deeming the context of the linkage of XMRV to:

• cancer/lymphoma
• fatal heart disease
• other neuro-immune diseases.

as "irrelevant". And thank you also for your perspective that risk to the blood supply is irrelevant.

All that is irrelevant. She comes across as hysterical, and that damages her credibility. That's the only relevant point here.

The relevance of your comments duly noted.