Article: CFS Hits Big Time "War on Mystery Disease" on Front Page Wall Street Journal

Article: CFS Hits Big Time Wall Street Journal Front Page: "War on Mystery Disease"

You can view the page at http://forums.aboutmecfs.org/content.php?379-Front-Page-of-the-Wall-Street-Journal-War-on-Mystery-Disease

 

Too bad ADM didn't mention the previous findings of misuse of funds allocated to CFS research. *That* would certainly open some eyes in the public & show a continued history of abuse by the CDC...

 

Maybe that's for the next article Here's my comment

The public may not understand where the CFS community is coming from. This is a community that is well aware that the federal governments own studies show that this disorder effects at least a million people and costs the US economy about 20 billion dollars a year in funding yet it ranks near the bottom in research funding. While diseases the magnitude of CFS typically get hundreds of millions of dollars in funding and several hundred studies funded a year the CFS population gets all of 2 or 3 studies funded a year.

Over that past 25 years that has breed a bitter and angry community. Its one thing to be sick for decades and have the sense that the medical community is working on your problem. Its quite another to become ill relatively early in life and be sick for decades and know that no one is working on your problem and that you're basically stuck. It's another thing to go to doctor after doctor and have them tell you its all in your head (but provide no relief) or to just be discarded...It takes a tolll

So when the CFS community sees an opportunity like this arise they hang onto tenaciously. If we go to far at times then think about taking a walk in our shoes and think how you would respond.

 

I also put this

This is from Dr. Alter ( in the article)

"I thought it was important they know what might be coming," he said.

The conference organizers put the presentation on the web, and two Danish journalists issued a press release about the brief XMRV remarks.

For weeks, Dr. Alter, who works at the NIH, was hounded by reporters and patients demanding more information—information that Dr. Alter says he didn't feel was ready for presentation.

"It never dawned on me that one sentence would have such impact," he says. He couldn't respond to all the email and worried that any comments might be misinterpreted."

This simply illustrates the pent up yearnings found in the population for wellness. We are not depressed. We are not sitting in our homes feeling sorry for ourselves. This is population that will do almost anything to get well. We have tried behavioral treatments and snake venom and antivirals and whatever......we have spent our last nickels trying to get better. Dr. Alter may have been surprised but no one in the CFS community was that his comments aroused so much interest.

 

And in response to another comment

I agree Blaire there is no reason for researchers not to want to find this virus. All I can say is that XMRV was like a meteor streaking over the sky for the ME/CFS community. It promised to lift an urecognized disorder into legitimacy and there was no reason to believe that researchers wouldn't, as they did with HV, find a cure.

Its simply an almost unworldly opportunity for alot of really sick people and given that, and the years of telling them 'its all in their head' they will tenaciously fight for it just as hard as they can.

There really are few other good options for the community.

 

This is a smear campaign and hit piece aimed squarely at any that dare to speak up. They've even got all of you posting apologetic responses. Wow. Maybe there really is something to this retrovirus talk.

 

Wow, Cort. Way to stick up for patients, for us "really sick people."

Your response to Blaire was really not helpful, in my opinion.

Thanks, but no thanks.

 

This is a smear campaign and hit piece aimed squarely at any that dare to speak up. They've even got all of you posting apologetic responses. Wow. Maybe there really is something to this retrovirus talk.

So Amy Dockser Marcus who has been such a supporter for the past year...who has done piece after piece after piece...is now the enemy....hmmmm

 

Front page Wall Street Journal - delighted to see for you all - it's been a long hard battle to bring into the open. Hope good repercussions.

 

Not only is it factually incorrect, it is also morally and ethically completely unacceptable to blame patients or their advocates for lack of funding, lack or research or lack of quality research.

I was sad to see you, Cort, reinforce the prejudice of "bitter, angry" patients. Why not leave the patient slagging to the press and a certain group of researchers? They are doing a very good job at it.

It is also far from the truth that all the patients cling "tenaciously" to this theory, not because the science convinces them but because they are desperate for help.

Patients never asked for "rushed" research. On the contrary, we harshly criticized the rushed and flawed studies we were bombarded with soon after the Lombardi paper.

But the speed of the scientific process is not only influenced by care and diligence on the researchers' side, it is also vastly determined by the allocation of sufficient funding to the right institutions.

The proportion of patients who have contacted researchers directly is marginal. What we have really "clamored" for from the beginning is federal funding for the WPI, the institute that was leading this breakthrough discovery, and to date this still hasn't happened. That is the tragedy, that is where patients clash with government institutions. That is what this article should have been about.

 

Some of us might not like all its content, but I think this is a pretty balanced article. Amy Dockser Marcus is not necessarily our friend. She's a journalist and as all good journalists should do, she's just reporting multiple sides.

 

I think Nina makes excellent points and Jemals remark is worth remembering. I don't quiet know what to make of this article as it is certainly not what I was expecting from an article deemed worthy of the front page of one of the worlds most highly regarded newspapers...on one of the most important scientific developments since HIV.

It didn't do us any favors leaving the reader with an overall impression of....pushy patients jeapodising quality research. How does this qualify as front page news amongst scientific findings of researchers and other developments in this field over an extraordinary full 12 months?

ADM has produced articles on the subject more worthy of the distinction...but it is undoubtedly her Editor who may have selected this piece from her for front page status. On a more positive note, it suggests that advocacy efforts are sorely being felt!

 

I thought the article was fair. I read it multiple times. I think she is writing for a public unaware of CFS or XMRV. Of course, she is forgetting the aids controversy, I remember how political ACT UP was and they didn't have the internet.

Wendy

 

Wow, Cort. Way to stick up for patients, for us "really sick people."

Your response to Blaire was really not helpful, in my opinion.

Thanks, but no thanks.

I'm actually a bit confused

I agree Blaire there is no reason for researchers not to want to find this virus. All I can say is that XMRV was like a meteor streaking over the sky for the ME/CFS community. It promised to lift an urecognized disorder into legitimacy and there was no reason to believe that researchers wouldn't, as they did with HV, find a cure.

Its simply an almost unworldly opportunity for alot of really sick people and given that, and the years of telling them 'its all in their head' they will tenaciously fight for it just as hard as they can.

There really are few other good options for the community.

Which part did you not like? The first sentence? There is no reason for researchers not to want to find this virus? Or that I put the push by the patients in the context of an opportunity that, of course, they will tenaciously fight for?

 

Not only is it factually incorrect, it is also morally and ethically completely unacceptable to blame patients or their advocates for lack of funding, lack or research or lack of quality research.

I was sad to see you, Cort, reinforce the prejudice of "bitter, angry" patients. Why not leave the patient slagging to the press and a certain group of researchers? They are doing a very good job at it.

It is also far from the truth that all the patients cling "tenaciously" to this theory, not because the science convinces them but because they are desperate for help.

Patients never asked for "rushed" research. On the contrary, we harshly criticized the rushed and flawed studies we were bombarded with soon after the Lombardi paper.

But the speed of the scientific process is not only influenced by care and diligence on the researchers' side, it is also vastly determined by the allocation of sufficient funding to the right institutions.

The proportion of patients who have contacted researchers directly is marginal. What we have really "clamored" for from the beginning is federal funding for the WPI, the institute that was leading this breakthrough discovery, and to date this still hasn't happened. That is the tragedy, that is where patients clash with government institutions. That is what this article should have been about.

I do see what you mean by one of my comments. It could have been worded better. Given the opportunity I would have worded this differently. I would have put it in the context of 'fighting tenaciously' to see that this opportunity gets fully researched.

So when the CFS community sees an opportunity like this arise they hang onto tenaciously. If we go too far at times then think about taking a walk in our shoes and think how you would respond.

.I think we should embrace the angry theme - because we are an angry community and that given our history its hard to see how we could be anything but angry, in my opinion. After all, how to explain comments by Mindy Kitei and Chris Cairns that the CDC or the NIH - which the general public admires - is trying to sabotage XMRV research or choke off funding to it! That makes us look a little strange in the public's eye - yet that is a common theme in our community.

My response was to show that, CFS patients, after decades of marginalization, have alot of reasons to be angry. Given the context of the article - a wary, sometimes untrusting patient community pushing hard against the research community - I felt it was important to provide to show why; ie to provide reasons why patients might distrust them. That's why I pointed out the lack of funding over the years.

Is that 'slagging' the patient community'? I was trying to provide a rational explanation for the things Amy wrote about. It was an attempt to humanize the situation - perhaps it failed.

It was an odd topic to make it to the Front Page of the WSJ but every article gives us the chance to respond and make our views known - and it keeps us in the news.

 

Exactly Cort, the downside of the article was some parts of it sounding as though we are frustrated and demanding over current research, and leaves off illumination of the real source of our discontent and anger, which is 25 years of being marginalized. I too sent an email to Amy suggesting the same. Other than this, I think article is great. I see Amy as our Ali because she seems to just want the truth exposed about this illness. I don't need her to slant anything in my favor....I need her to expose the truth, and I feel she is doing her best to make that happen. She responded to my email right away expressing thanks for my input.

 

Exactly Cort, the downside of the article was some parts of it sounding as though we are frustrated and demanding over current research, and leaves off illumination of the real source of our discontent and anger, which is 25 years of being marginalized. I too sent an email to Amy suggesting the same. Other than this, I think article is great. I see Amy as our Ali because she seems to just want the truth exposed about this illness. I don't need her to slant anything in my favor....I need her to expose the truth, and I feel she is doing her best to make that happen. She responded to my email right away expressing thanks for my input.

Glad to hear that. I see the article as an opportunity for us to illustrate the past history of the illness - and to educate Amy on it as well. It appears she is getting some education

 

Some more comments. I can't stay off of there!

I would argue that given the vague definition of CFS that the research community will have difficulty figuring anything out about this disorder UNTIL they classify it and its subsets correctly. This demonstrates another critical failure by the federal government with regards to CFS. In the standard definition of the disorder which was produced over 20 years ago the authors noted the high likelihood that CFS contains several subsets which must be ferreted out before successful research efforts can be made.

Federal officials haven't even begun to grapple with CFS and it wouldn't take much. Increasing the budget for CFS ten times to 60 million dollars (still a paltry amount for a disorder of its magnitude) is emminently doable when other disorders that have less impact are getting hundreds of millions of dollars a year. CFS advocates have been advocating for substantial increases in research funding for 20 years yet the govt never seems to be able to find the money in its vast purse to even provide a minimal increase.

As taxpayers and citizens we deserve and demand equal representation in the medical community. We're not asking for the moon - just levels of funding appropriate to a disorder that effects at least a million people and causes, by the govts own figures, disability rates as severe as those found in MS and other 'legitimate disorders'.

In response to another post

I agree that main culprits in the almost tragic history of CFS are the bureacrats who understand that CFS is a major disorder affecting a substantial portion of the population (their own studies show that) yet who year after year simply choose to pretend as it doesn't exist. This is a disorder that the government chooses to spend from 2-6 dollars a year per patient per year on research. Other disorders with far less economic impact receive hundreds, even thousands a year per patient in research funding.

Is that upsetting to us? Of course. Are we not as trusting as some other disease groups? Yes, and as the comments in for this article have shown - there is a history present that goes far beyond the events mentioned in the article.

If the federal government and the research community want a trusting, happy community they can achieve that fairly easily - after 25 years finally pour some real money into researching this disorder - and every aspect of it; not just XMRV.

 

I'm actually a bit confused



Which part did you not like? The first sentence? There is no reason for researchers not to want to find this virus? Or that I put the push by the patients in the context of an opportunity that, of course, they will tenaciously fight for?

I think it's speculative to assume that researchers want to find this virus. There are way too many half-assed studies and then declarations that there is nothing to see and to move on.

On the one hand you have people saying "the science takes time" and on the other you have people doing these two week studies and then making absolute declarations. How to reconcile this?

 

thanks for posting Cort, you are always on top of your game!
finally, attention where it is deserved.