Article: WPI Throws the Glove Down

You can view the page at http://www.forums.aboutmecfs.org/content.php?102-WPI-Throws-the-Glove-Down

 

I think this is less about egos, and more about politics and money — research money.


Dr. Mikovits says they are "attempting to isolate and sequence XMRV from as many people as possible" and that it's costly, around $2500 per isolate. They had a donor who promised to pay for this who then backed out.

She says WPI hasn't been able to get funding "because of the efforts worldwide to make certain that XMRV has nothing to do with CFS."

[from a personal email]

You can get research $$ if you're looking at a prostate cancer patient and XMRV.
You can get millions of research $$ if you want to look at the immune response to XMRV in monkeys.
You can get NO research $$ to study XMRV in patients with ME/CFS.

Thank you, Gracenote.

 

I think this is less about egos, and more about politics and money research money.

Dr. Mikovits says they are "attempting to isolate and sequence XMRV from as many people as possible" and that it's costly, around $2500 per isolate. They had a donor who promised to pay for this who then backed out. She says WPI hasn't been able to get funding "because of the efforts worldwide to make certain that XMRV has nothing to do with CFS." [from a personal email]

You can get research $$ if you're looking at a prostate cancer patient and XMRV.
You can get millions of research $$ if you want to look at the immune response to XMRV in monkeys.
You can get NO research $$ to study XMRV in patients with ME/CFS.

In my opinion, it's politics. Specifically politics that does not want there to be a connection between XMRV and ME/CFS. Just look at who the players are! That's what I see anyway.

Gracenote please post this to the main board!

There have to be *some* people out there who aren't totally wiped out when it comes to money! :worried:

 

I posted this in response to a blog a couple of days ago.

(sunnyslumber, I'm open to suggestions for a more effective place to post.)

Some talking points derived from thoughts Dr. Mikovits expressed to me in an email:

MAKE YOUR VOICE HEARD BY YOUR GOVERNMENT!

Ask why the National Institute of Allergy and Infectious Diseases (NIAID) is not allocating money for the more than 10 million Americans infected with XMRV while spending billions on the less than 1 million Americans infected with HIV.

Demand that NIAID immediately put resources into XMRV, an HIV-like virus that is destroying American families. After all, these are our tax dollars being allocated.

XMRV is real. Every infected individual and family deserves the same attention that an HIV infected individual or cancer patient receives.

XMRV is a new human infectious retrovirus which is in the blood and can infect anyone.

WPI, NCI and CC did the most rigorous research possible to show that XMRV is associated with CFS. As taxpayers, we need to demand that our government not deny us for one more day!

 

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

No one in science counts up the number of studies and says there are so many in favor, so many against, thus the greater number wins! Shall we do it by number of pages? Of course not equally absurd.

There are false equilalencies being promoted here. The other fallacy is that one paper cannot change things. It certainly can!

Again, we hear this as the world against WPI, again you fail to mention that two other labs, the Cleveland Clinic, and the National Cancer Institute, their researchers, plus Science magazines peer reviewers all were engaged in the work required to publish this result.

The other studies methods and cohorts were well critiqued by parvofighter (so much so that foreign press picked it up!) and others here.

XMRV has been found, is being found in patients with ME/CFS. This should not be in dispute. What to make of that is where the science is now proceeding.

 

good post Stuart, i like that

 

I think this is less about egos, and more about politics and money research money.

Dr. Mikovits says they are "attempting to isolate and sequence XMRV from as many people as possible" and that it's costly, around $2500 per isolate. They had a donor who promised to pay for this who then backed out. She says WPI hasn't been able to get funding "because of the efforts worldwide to make certain that XMRV has nothing to do with CFS." [from a personal email]

You can get research $$ if you're looking at a prostate cancer patient and XMRV.
You can get millions of research $$ if you want to look at the immune response to XMRV in monkeys.
You can get NO research $$ to study XMRV in patients with ME/CFS.

In my opinion, it's politics. Specifically politics that does not want there to be a connection between XMRV and ME/CFS. Just look at who the players are! That's what I see anyway.

Wow Gracenote, this is unreal. Unbelievable.

 

No one in science counts up the number of studies and says there are so many in favor, so many against, thus the greater number wins! Shall we do it by number of pages? Of course not equally absurd.

There are false equilalencies being promoted here. The other fallacy is that one paper cannot change things. It certainly can!

Again, we hear this as the world against WPI, again you fail to mention that two other labs, the Cleveland Clinic, and the National Cancer Institute, their researchers, plus Science magazines peer reviewers all were engaged in the work required to publish this result.

The other studies methods and cohorts were well critiqued by parvofighter (so much so that foreign press picked it up!) and others here.

XMRV has been found, is being found in patients with ME/CFS. This should not be in dispute. What to make of that is where the science is now proceeding.

Can't get too much.

 

Whew...that's bad news about the money. It's still an uphill battle.

That does illustrate how vitally important it is that we get some positive replication/validation studies going. Once that happens I would assume that the federal grant spigot would open up.....I hope I'm not living in la-la land on that......

 

Whew...that's bad news about the money. It's still an uphill battle.

That does illustrate how vitally important it is that we get some positive replication/validation studies going. Once that happens I would assume that the federal grant spigot would open up.....I hope I'm not living in la-la land on that......

I hope you're right Cort but you're catching me on a less than optimistic day. I'll counter that it may take FEAR (of spreading of infection, evidence of an unsafe blood supply, convincing evidence of the scary word cancer, etc.) to really open up the spigot. Replication/validation may take us from a dribble to a trickle. I'm not sure even solid causation is a large subgroup, will be a big motivator. I'm worried it may take a years to really get a snowball rolling.

I'm hoping I'm wrong, I do have confidence of WPI in their ability to maximize the momentum and ability to use their funding wisely, leveraging cancer $, etc.

Otis

 

Interesting quotes of e-mail. Can we see the whole thing?

Tina

 

Interesting quotes of e-mail. Can we see the whole thing?

Tina

Hi Tina,

I received two emails from Dr. Mikovits. She was okay with me posting but wanted first to tidy up the grammar and wording. Since the second email was long, I haven't sent it back with a request that she polish it up; that's why I'm not posting the whole thing.

I will say this: She doesn't understand why "every single advocacy group and website" isn't supporting the rigorous research that went into the Science study and demanding that our government make resources available. I must agree that this is THE moment for ME/CFS to finally get some traction, with or without any more studies. But instead of coming out with a roar, our biggest advocacy organizations are quibbling about cohorts.

I don't think we need to wait for any more studies. We don't have to know if XMRV causes ME/CFS in order to seize the moment and demand funding from our government. We don't need to wait for any more studies in order to support the work that WPI is doing. If nothing else, WPI has grabbed the attention of scientists around the world and CFS is now mentioned seriously along with prostate cancer in paper after paper.

What are we waiting for really? Why have we let the psychologizers dominate the conversation? There is no doubt any longer that ME/CFS is a neurological and immune illness. That XMRV is a plausible causative factor says all we need to know to start demanding more funding from our government than is allocated for erectile dysfunction.

 

here here Gracenote! well said

 

I know it's a bit early to re-post this, but I'm going to do it anyway. Thank you, Gracenote.

I received two emails from Dr. Mikovits. She was okay with me posting but wanted first to tidy up the grammar and wording. Since the second email was long, I haven't sent it back with a request that she polish it up; that's why I'm not posting the whole thing.

I will say this: She doesn't understand why "every single advocacy group and website" isn't supporting the rigorous research that went into the Science study and demanding that our government make resources available. I must agree that this is THE moment for ME/CFS to finally get some traction, with or without any more studies. But instead of coming out with a roar, our biggest advocacy organizations are quibbling about cohorts.

I don't think we need to wait for any more studies. We don't have to know if XMRV causes ME/CFS in order to seize the moment and demand funding from our government. We don't need to wait for any more studies in order to support the work that WPI is doing. If nothing else, WPI has grabbed the attention of scientists around the world and CFS is now mentioned seriously along with prostate cancer in paper after paper.

What are we waiting for really? Why have we let the psychologizers dominate the conversation? There is no doubt any longer that ME/CFS is a neurological and immune illness. That XMRV is a plausible causative factor says all we need to know to start demanding more funding from our government than is allocated for erectile dysfunction.

 

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

Hi Tina,

I received two emails from Dr. Mikovits. She was okay with me posting but wanted first to tidy up the grammar and wording. Since the second email was long, I haven't sent it back with a request that she polish it up; that's why I'm not posting the whole thing.

I will say this: She doesn't understand why "every single advocacy group and website" isn't supporting the rigorous research that went into the Science study and demanding that our government make resources available. I must agree that this is THE moment for ME/CFS to finally get some traction, with or without any more studies. But instead of coming out with a roar, our biggest advocacy organizations are quibbling about cohorts.

I don't think we need to wait for any more studies. We don't have to know if XMRV causes ME/CFS in order to seize the moment and demand funding from our government. We don't need to wait for any more studies in order to support the work that WPI is doing. If nothing else, WPI has grabbed the attention of scientists around the world and CFS is now mentioned seriously along with prostate cancer in paper after paper.

What are we waiting for really? Why have we let the psychologizers dominate the conversation? There is no doubt any longer that ME/CFS is a neurological and immune illness. That XMRV is a plausible causative factor says all we need to know to start demanding more funding from our government than is allocated for erectile dysfunction.

Awesome. Wow, gracenote!

I'm quoting this again, bolding the last paragraph, and starting a new thread: What are we waiting for really?

 

The WPI is getting desperate letters from patients while the other labs are not. I think their recent collection of patients blood in UK for testing was a real humanitarian act. They are working on so many fronts at once. They are committed to getting treatment for ME/CFS patients.
When we ask the US to fund XMRV they are going to give the money to the CDC and FDA who will be looking at the blood supply and counting people for years again.
We need to ask for the ME/CFS centers for excellence to be funded and specifically WPI.

 

MAKE YOUR VOICE HEARD BY YOUR GOVERNMENT!

Ask why the National Institute of Allergy and Infectious Diseases (NIAID) is not allocating money for the more than 10 million Americans infected with XMRV while spending billions on the less than 1 million Americans infected with HIV.

Demand that NIAID immediately put resources into XMRV, an HIV-like virus that is destroying American families. After all, these are our tax dollars being allocated.

XMRV is real. Every infected individual and family deserves the same attention that an HIV infected individual or cancer patient receives.

XMRV is a new human infectious retrovirus which is in the blood and can infect anyone.

WPI, NCI and CC did the most rigorous research possible to show that XMRV is associated with CFS. As taxpayers, we need to demand that our government not deny us for one more day!

Gracenote, these are excellent suggestions for the CFSAC meeting in May. (love your signature--I enjoyed reading her)

 

Gracenote said of Dr. Mikovits:


Yes, yes, yes, Gracenote! This is what I do not understand. Personally, I am doing all I can to support WPI, and I just don't understand why others are saying "wait." Wait for what? We know XMRV exists and we know it is important in CFS/ME. What more do we need?
Let's get real here: What is wrong with the CFIDS Assn of America. Why is it not supporting research into XMRV?

As a footnote to this I stumbled upon a poll on ME Association website.

http://www.meassociation.org.uk/index.php?option=com_content&view=frontpage&Itemid=130

Do you think that XMRV is likely to be directly involved in causing ME/CFS?

Definetly? Probably? Possibly? Unlikely? No chance? Not sure?

Of 462 respondents 23.9 % answered unlikely, not sure or no chance.

I find that staggering.

Anyone else agree/disagree?

PS Brilliant post Gracenote.

 

I agree that's astounding Adam. That's a great link, thank you.

What are we waiting for really? Why have we let the psychologizers dominate the conversation? There is no doubt any longer that ME/CFS is a neurological and immune illness. That XMRV is a plausible causative factor says all we need to know to start demanding more funding from our government than is allocated for erectile dysfunction.

We're waiting for someone to tell us whether XMRV really causes ME/CFS or not. Meanwhile the psychologizers are able to dominate the conversation because this is in doubt.

Why aren't we demanding more funding for the WPI from our government right now? I didn't know we could. We kept being told that they are privately funded. Our government can't even keep track of the piddly amount of money CFS gets at the CDC. I didn't think the government would ever fund something like WPI but if Dr. Judy thinks we should be asking for it to then lets do it.

We could also set up another Pay Pal button here for WPI donations.