WSJ: Amid War on a Mystery Disease, Patients Clash With Scientists

[Jemal]

Amy Dockser Marcus keeps pumping out articles. This one is a lengthy article about the clash between patients and scientist and contains some background information about earlier events. Including the delay of the positive MLV study done by Lo/Alter.

http://online.wsj.com/article/SB10001424052748704008704575639193973468402.html

 

[Sean]

In the harsh public glare, the traditional culture of science is turned upside down. Dr. Le Grice is worried that public pressure will cause scientists to rush, resulting in experiments that end up "clouding the field even more."

[snip]

Dr. Le Grice explained that because of Mr. Miller's patient-advocacy email campaign, Dr. Le Grice has less time to spend doing science about XMRV.

We need to listen to this. We gain nothing by blitzing and alienating dedicated, and (more-or-less) independent researchers.

Let the real scientists do their job.

 

[Nina]

We need to listen to this. We gain nothing by blitzing and alienating dedicated, and (more-or-less) independent researchers.

Let the real scientists do their job.

Yes, because that has worked really well for us in the past, right?

For the first time, I am disappointed in an article by Amy Dockser Marcus. I think she has missed some vital points in this discussion, namely the relation of severity and disability to funding, expecially compared to other diseases.

Imho it would have been totally justified and helpful to give a little background on AIDS activism back in the days. AIDS patients weren't just fighting for their own lives, they fought for the people who hadn't yet been infected, just as we do now.

It's also unfair to presume that it's the patients who want to "rush" scientists. We want quality science, that is the point. The most rushed studies were the ones we criticized the most, like the Erlwein, Kuppelfeld etc papers.

What we battle more than any individual or group of researchers is the lack of funding for the most promising areas or reasearch. I would have liked her to address this issue as well.

 

[Esther12]

Things like this:

"Mr. Miller, for one, questions CDC studies that he says are denigrating and irrelevant to those with the disease. For example, a paper by CDC researchers was published in July, shortly after the CDC said it could not find XMRV in patients. It reported that 29% of chronic fatigue syndrome patients in the study had a personality disorder compared with 7% of healthy controls. "

Look bad for us imo. It doesn't point out any of the real problems with that study, and a lot of people will have more faith in researchers than patients. There's a danger that this article could make CFS patients look anti-science, rather than angry that so much CFS research is poorly done. This is a real danger for us... if people like Silverman and other pro-XMRV researcher decide that XMRV is just a contaminant, but CFS patients refuse to accept it, it will be used to portray us as anti-science loonies.

 

[Sean]

Yes, because that has worked really well for us in the past, right?

We gain nothing by harassing and wasting the time and energy of legit researchers.

I am not saying we should not fight back hard and publicly, of course we should. But how we do it, and who we target, is critical. We need to be much smarter in how we go about this, because as it stands, so far the other side has won the public relations propaganda war hands down.

We are clearly doing something wrong on that front.

 

[anciendaze]

"There's a danger of deflecting us from what we really want to do," Dr. Le Grice says.

I think that says it all.

What most people in large organizations want to do is draw regular paychecks while avoiding risk and controversy. Science is scarcely immune. As a field matures, avoiding criticism becomes increasingly important, new results scarcer. The way you play organizational politics is to submit proposals which most evaluators agree with, meet milestones in those proposals on schedule, and wrap everything up with publications which show "more research is needed". Actually solving a medical mystery might put an end to a large research institution. Overturning previous results always involves conflict with established researchers.

Imagine Pasteur writing a proposal, "By the third quarter, we will have isolated the microbe responsible for rabies. This will lead to preliminary work on appropriate potential treatments by fourth quarter. In the second year, clinical trials will need six months of ethics review. Roll-out of the newly discovered treatment to medical practice should be started in the third year of research." (For those unaware, he never isolated visible virus.)

Nobody has to be cynically aware of all this, they are all too busy burrowing deep into their own subject, and dealing with the constant paper blizzard which defines modern bureaucracies. Those at the top have lost direct experience with anything fundamental. They are entirely dependent on the opinions of others, whose primary motivation is to hang on to current funding. Unless new funds, specifically earmarked for new research, are available, all funding for new subjects must come from existing budgets. Even when congress earmarks funds for a subject, as with CFS at the CDC, the way these are used can be directly contrary to legislative intent.

Bombarding Harvey Alter with messages was counterproductive. Many highly personal flame wars are a waste of time. Relying on information from patients to filter through established channels is also a waste of time. Each message has to be carefully targeted and reasoned. Researchers like junk mail no more than the rest of us.

 

[floydguy]

We need to listen to this. We gain nothing by blitzing and alienating dedicated, and (more-or-less) independent researchers.

Let the real scientists do their job.

I agree to some extent. However, their "culture" seems to be back in the 50's. Yeah it kind of sucks to have a spotlight on them and be pressured to have more accountability. But they need to suck it up and deal with it. Like Wall Street they want to go about their business the way they want but that's not always in the best interest for the rest of us. And it almost certainly is not going to get the most bang for the public buck.

 

[toddm1960]

We need to listen to this. We gain nothing by blitzing and alienating dedicated, and (more-or-less) independent researchers.

Let the real scientists do their job.

Without this pressure XMRV would have been buried already, just like the first retrovirus discovered in 1991. If the internet had been more developted back then I think you would have seen much more research done, just from the pressured applied by patients. Sorry but being quiet has not worked for the past 30 years, if speaking up and forcing issues doesn't work this time at least we've stood up to be heard.

 

[SOC]

We gain nothing by harassing and wasting the time and energy of legit researchers.

I am not saying we should not fight back hard and publicly, of course we should. But how we do it, and who we target, is critical. We need to be much smarter in how we go about this, because as it stands, so far the other side has won the public relations propaganda war hands down.

We are clearly doing something wrong on that front.

Agreed.

The point that many people seem to be missing is the scientists -- even the best of them -- work at the end of a long political and bureaucratic chain. They are not the ultimate decision makers. We need to directly address the politicians and bureaucrats in charge of funding and policy, not the scientists who are trying to get the work done.

We'll get the best results talking to people in languages they understand -- political pressure with the politicians, exciting new research opportunities with the scientists.

Suppose our city is not taking care of the sidewalks in our neighborhood. Is the condition of our sidewalks more likely to improve if we stand around nagging, distracting, annoying, and ultimately slowing the people who are doing the repairs, or if we nag the city council or the city engineer?

The politicians and bureaucrats decide policy and funding. They are also more susceptible to political pressure -- that's part of their job. We want them in the hot seat.

Our energy is limited. We should not be wasting it on the people who are not in the position to do the most for us. If we want to communicate with the workers, let's encourage those who are doing the best they can for us within the confines of their management's program. We want them on our side. We want the policy-makers to be getting pressure from both directions. That's when they'll get off their behinds and do something for us.

 

[grant107]

Some scientists have preconceived ideas before they do their experiments. Some are saying XMRV is a contaminant before they have proved it. They need to be held accountable. I think some do not take this illness seriously enough.

 

[Ember]

Amid war on a mystery disease?? Yes please.

 

[justinreilly]

"There's a danger that we'll be deflected from what WE WANT TO DO." Are you kidding me? Dr. LeGrice is a public servant and he's trying to cast us, the victims of the NIH and CDC war on patients and science, as meddling!

And shame on Dr. Monroe for pretending to be righteously indignant at the accusations of CDC malfeasance!

There was good stuff in this article, but it didn't provide the context of CDC and NIH's criminal history (other than Mindy Kitei's statement) without which, it may seem like we are being hysterical.

The final insult is the continued use of "Chronic Fatigue" in the box headline and links to the story. The disease is called Myalgic Encephalomyelitis (ME/CFIDS) NOT "CHRONIC FATIGUE". Marcus is more than fully aware of this. If an editor is doing these things, she has to make it VERY clear that that is absolutely unacceptable!

The article explored an area that desperately needs to be reported and included some good info, but leaving out the critical background, makes it seem like we are anti-science and left me feeling angry once again at the media misrepresentation.

Marcus has written some very good stuff, it frustrates me that she puts out a mostly slanted article like this.

 

[meadowlark]

Re the headline:

I'd bet any money that it's an editor using "chronic fatigue," not ADM herself. I worked in journalism as an editor and writer for more than twenty years. I wrote many headlines as an editor. As a writer, I could suggest one .... and it was always ignored. In fact, in newspapers (not necessarily magazines) the writer often doesn't even see the headline, which sometimes is slapped on just before the paper goes to press. Also, the choice of headline relies on what fits the space available. It's unfair and wrong, but it's likely that an editor thinks "oh, everyone knows what 'chronic fatigue' means" as they cheerfully cut the word "syndrome." In addition, headlines are often made by committee ... for instance, a copy editor can cut or rephrase the commissioning editor's headline. So mistakes are often made by committee. I've even known people in production or the art department to take a word from a headline because it makes the page look less print-heavy--thus, easier to read.

When I was a factchecker at magazines, I factchecked the headlines and found errors in about half of them. Newspapers, unfortunately, don't use checkers, and they're even very rare now at magazines.

* * * *

I do wish ADM had written about the decades of neglect and malfeasance that are the cause of our frustration. After all, in terms of patient attitude, the CDC is reaping what they sowed. Somebody, somewhere, should write about that powerfully, in a major piece. I wish ADM had mentioned it even briefly in this one.

 

[justinreilly]

We need to listen to this. We gain nothing by blitzing and alienating dedicated, and (more-or-less) independent researchers.

Let the real scientists do their job.

Yes, because that has worked really well for us in the past, right?

For the first time, I am disappointed in an article by Amy Dockser Marcus. I think she has missed some vital points in this discussion, namely the relation of severity and disability to funding, expecially compared to other diseases.

Imho it would have been totally justified and helpful to give a little background on AIDS activism back in the days. AIDS patients weren't just fighting for their own lives, they fought for the people who hadn't yet been infected, just as we do now.

It's also unfair to presume that it's the patients who want to "rush" scientists. We want quality science, that is the point. The most rushed studies were the ones we criticized the most, like the Erlwein, Kuppelfeld etc papers.

What we battle more than any individual or group of researchers is the lack of funding for the most promising areas or reasearch. I would have liked her to address this issue as well.

EGG-ZACTLY!! Well said, Nina!

 

[Snow Leopard]

Look bad for us imo. It doesn't point out any of the real problems with that study, and a lot of people will have more faith in researchers than patients. There's a danger that this article could make CFS patients look anti-science, rather than angry that so much CFS research is poorly done. This is a real danger for us... if people like Silverman and other pro-XMRV researcher decide that XMRV is just a contaminant, but CFS patients refuse to accept it, it will be used to portray us as anti-science loonies.

Well said. We have to be cautious not to alienate the scientific community. While there is scientific debate about XMRV/MLV from Alter, Ruscetti, Silverman and the like, then by all means discuss it. But if these guys change their tact, we must do so also.

 

[invisible ME]

Agreed.

The point that many people seem to be missing is the scientists -- even the best of them -- work at the end of a long political and bureaucratic chain. They are not the ultimate decision makers. We need to directly address the politicians and bureaucrats in charge of funding and policy, not the scientists who are trying to get the work done.

We'll get the best results talking to people in languages they understand -- political pressure with the politicians, exciting new research opportunities with the scientists.

Suppose our city is not taking care of the sidewalks in our neighborhood. Is the condition of our sidewalks more likely to improve if we stand around nagging, distracting, annoying, and ultimately slowing the people who are doing the repairs, or if we nag the city council or the city engineer?

The politicians and bureaucrats decide policy and funding. They are also more susceptible to political pressure -- that's part of their job. We want them in the hot seat.

Our energy is limited. We should not be wasting it on the people who are not in the position to do the most for us. If we want to communicate with the workers, let's encourage those who are doing the best they can for us within the confines of their management's program. We want them on our side. We want the policy-makers to be getting pressure from both directions. That's when they'll get off their behinds and do something for us.

Agreed! I think this is an important point, and a fair analysis of the situation.

I also agree that for people who are not familiar with the wider context that is the historical and ongoing ME/CFS debacle (i.e. Osler's Web CDC, PACE trial, "yuppie flu" etc.), it may be difficult to understand where we're coming from. An outside might understandably regard the level of ME/CFS community outrage and criticism as paranoid. Of course, it ISN'T paranoid, but I can see why it might seem that way.

In my opinion, it's imperative that we find a way to effectively communicate that we ARE NOT anti-science. In fact, as a community PWCs are generally more informed and literate on the relevant science than most doctors, policy makers, and researchers. We have in fact, been begging policy-makers, funding agencies, and our GPs to read, fund, and take seriously existing scientific research on ME/CFS for years!

Reading ADM's piece, I am struck by two thoughts: (1) We need to find a way to engage constructively with the scientists/scientific process (as others have mentioned, this includes supporting good research, and acknowledging that individual researchers - especially those actually standing in front of the microscope, so to speak - act within narrow constraints); (2) We ARE entitled to openly question and criticize the scientific process - the agendas, the funding, the politics, etc. That's what patient advocacy/activism does. But that should never translate into wanting legitimate research to be "rushed" and thereby weakened. (NOTE: I don't think this is what people are asking for, but we should be concerned if that's how it sounds. Any thoughts on communicating more effectively?)

- invisible ME

 

[justinreilly]

I think that says it all.

What most people in large organizations want to do is draw regular paychecks while avoiding risk and controversy. Science is scarcely immune. As a field matures, avoiding criticism becomes increasingly important, new results scarcer. The way you play organizational politics is to submit proposals which most evaluators agree with, meet milestones in those proposals on schedule, and wrap everything up with publications which show "more research is needed". Actually solving a medical mystery might put an end to a large research institution. Overturning previous results always involves conflict with established researchers.

Imagine Pasteur writing a proposal, "By the third quarter, we will have isolated the microbe responsible for rabies. This will lead to preliminary work on appropriate potential treatments by fourth quarter. In the second year, clinical trials will need six months of ethics review. Roll-out of the newly discovered treatment to medical practice should be started in the third year of research." (For those unaware, he never isolated visible virus.)

Nobody has to be cynically aware of all this, they are all too busy burrowing deep into their own subject, and dealing with the constant paper blizzard which defines modern bureaucracies. Those at the top have lost direct experience with anything fundamental. They are entirely dependent on the opinions of others, whose primary motivation is to hang on to current funding. Unless new funds, specifically earmarked for new research, are available, all funding for new subjects must come from existing budgets. Even when congress earmarks funds for a subject, as with CFS at the CDC, the way these are used can be directly contrary to legislative intent.

Bombarding Harvey Alter with messages was counterproductive. Many highly personal flame wars are a waste of time. Relying on information from patients to filter through established channels is also a waste of time. Each message has to be carefully targeted and reasoned. Researchers like junk mail no more than the rest of us.

Anciendaze, good points. I do think it is more productive to target politicians and health agency brass than the scientists. I don't get involved in the intricacies of the science, because I don't understand it; but I think those who do have legit points that the scientists need to be made aware of. I don't remember people saying 'everyone send letters to this or that scientist', just some well informed individuals sending emails to scientists bringing up valid scientific points. There has been a lot of emails sent to agency admins and some to politicians.

So, while i totally agree we should focus on pressuring agency managers and politicians, I think the comments in the article by LeGrice exaggerated the amount of 'interference' we have been directing towards scientists, though i don't know for sure since i don't know how much he has been subjected to. And, obviously, considering the history of CDC and NIH, unfortunately, monitoring and feedback is necessary.

I agree with those who have said we don't want 'fast science', the only thing we want is the appropriate amount of good science, undistorted by lies from our government. Why is that considered unreasonable overreaching??

 

[invisible ME]

A few more thoughts on "Patients Clash with Scientists"...

While I don't want "fast" or "rushed" results of scientific research, I DO want a speedy allocation of funding for that scientific research. Questions raised by recent studies regarding XMRV/MLVs raise the profile of ME/CFS, and what is in the worst case scenario, a public health emergency. Regardless of whether XMRV turns out to be causative of/associated with ME/CFS, the possibility that there is a real human retrovirus circulating in the population for decades, deserves serious and timely examination. We should be gravely concerned about this possibility, as should everyone.

In the scenario that XMRV/MLVs are not infectious in humans and/or not causative of/associate with ME/CFS, we still have a severely debilitating disease that is getting serious consideration from the medical/scientific communities for the first time in memory (ever?), and we still deserve speedy allocation of funding, appropriate to severity of this disease. I can't think of any reason for us to be patient about that.

XMRV has been a game-changer in many respects, not the least of which that we are now publicly interacting with actual scientists.* Of the "hard science" variety. For so many years (decades), people with ME/CFS and our allies have been battling it out in the world of pseudo-science, where public perception reigns supreme. In the world of pseudo-science (i.e. "the psychobabblers" as they are commonly referred to here), politics is paramount, and it is nearly impossible to beat them at their own game. Especially when it's premised on that tired old false illness beliefs/malingerers logical fallacy. (Does anyone else wonder how it is that media coverage of such "research" never calls out these studies on their methodological imperative of begging the question? How do these studies even get approved? Who sits on their research committees? Yikes!)

Years of fighting these pseudo-scientists have taught us to be suspicious about research done on us/about us. It makes me a little nervous when the scientists keep repeating the mantra that it (i.e. the truth) will all shake out in the end. We know from experience that research results can be spun in a surprising number of ways (i.e. see recent media coverage of the PACE trials), especially in the face of public misunderstanding and indifference. I believe these are important lessons, but I also wonder if this new turf of "hard" science requires new approaches... I'm not sure what they might be.

Do Le Grice's comments reflect the wider community of scientific researchers? Do we risk alienating ourselves from potential allies? Or is he simply naive in thinking that "science" can exist in a vacuum from the wider political context? After all, aren't we entitled to be just a teensy weensy bit invested?


*I suppose there are some actual scientists in the field of psychiatry. I wonder where they are?

 

[justinreilly]

I posted this on the WSJ comments:

"The feedback by patients is more than reasonable against the backdrop (which this article didn't provide) of CDC and NIH's efforts against ME/CFIDS science and patients for the last 27 years.

Please, those Good Americans reading this, I ask you to please become educated on how we ME/CFIDS patients have been treated by our government. Please pause a moment to reflect on how you would feel and react if, as is the case with us, you were extremely ill and your human rights had been violated for 25 years by our own government.

And I am not an anti-government conspiracy theorist. My grandfather ran for Congress; my Dad is a former federal prosecutor, FDA lawyer and Navy Commander; my uncle is a former Deputy CIA Director. I love America! This does not change the fact that CDC and NIH have violated the civil rights of one million extremely sick Americans for over a quarter-century.

Again, please learn about ME/CFIDS and how we pwME have been treated by CDC and NIH.
NYTIMES op-ed piece by Hillary Johnson addresses this issue:
http://www.nytimes.com/2009/10/21/opinion/21johnson.html?_r=1&scp=1&sq=chronic denial johnson&st=cse "

 

[justinreilly]

In comments to the article:

MICHAEL RINALDI replied:

Justin,
You have misinterpreted this quote. He is saying "what we want to do" meaning "what we should do" that is follow the unfolding evidence thoughtfully using the scientific method and logic and keep emotion at a minimum. I am quite sure his intent was not to say what he wants to do personally for his own enjoyment.
I'm all for advocacy but let's not get rabid about it. These folks really are trying their best.
Chronic fatigue syndrome is almost certainly a wastebasket of a number of disorders both organic and non-organic which all phenotypically manifest similarly. As an example, multiple disorders can cause fever and malaise including a host of bacterium, viruses, cancer, autoimmune diseases, etc. If our understanding of the disorder is very primitive, as it is with chronic fatigue, you might try to assign a cause to all patients with fever based on one infection and call victory but clearly it is not that simple and a majority will not respond to the assigned treatment.
For physicians, like myself, CFS is a difficult and frustrating diagnosis because we don't really understand it and can't effectively treat it in all patients. What is fairly clear to most of us is that patients who manifest symptoms of CFS are very different and likely are suffering from more than one kind of disorder. Thus the concern of the medical community of the tendency to be myopic in the frantic push for answers.



Reply to MICHAEL RINALDI
15 minutes ago

Justin Reilly replied: (your comment)

Dr. Rinaldi,

You have been mislead, like the vast majority of MDs, by the propaganda put out by CDC, NIH, the UK government and a small cadre of UK insurance lobbyists, trained as psychiatrists and posing as scientists.

While, as in many diseases, there are subgroups to ME/CFIDS, which have been identified by sophisticated testing (Prof. Kerr's work), this does not change the fact that ME is a discrete neuro-immune disease with a discrete presentation, much like MS. You speak of 'chronic fatigue.' The above-named malfeasors have deliberately tried to lose ME in a sea of chronic fatigue because, inter alia, insurers and governments don't want to pay for research and treatment.

CDC renamed Myalgic Encephalomyelitis (so denominated by WHO in ICD-10 at G 93.3 (neurological diseases) since 1968) as "Chronic Fatigue Syndrome" to make it seem trivial and psychogenic and to confuse it with the symptom chronic fatigue. This strategy has been very successful (as illustrated by your conflation of "CFS" and "chronic fatigue" in the above post). In the UK, ME continues to be used, but in 1993 Sharpe and other charlatans introduced their new definition of "CFS" which defined nothing more that Idiopathic Chronic Fatigue and explicitly ruled out patients with neurological signs.

This is exactly like a group of psychiatrists coming together to redefine Multiple Sclerosis as Idiopathic Chronic Fatigue with no neurological signs and renaming it (MS) as "Chronic Fatigue Syndrome." If this was done, you would think that MS, now named "Chronic Fatigue Syndrome" was a wastebasket of chronic fatigue states. For an accurate definition and clinical recommendations please see the definitive ME document, the Canadian Government's ME/CFS Consensus Criteria:
http://www.cfids-cab.org/MESA/ccpccd.pdf

All this talk of misdirection and malfeasance carried out in broad daylight, usually sounds implausible to those who have not carefully studied the political history and science of ME/CFIDS. As ME authority Prof. Malcolm Hooper says "You just can not believe this is happening." I do not blame you and other clinicians for falling for the lies and misdirection of CDC and other 'authorities'. You are surely a busy physician and rationally rely on the pronouncements of CDC and others appearing to be bona fide authorities to be a close proxy for the state of the knowledge. Of course you do not have the time to pore over hundreds or thousands of documents and studies as I and many ME patients have in order to get to the truth. I ask you, though, to not rely on CDC and NIH and intentionally or negligently misleading review articles and medical texts, but to have an open mind until you have had a chance to review the facts yourself.

Some basic questions to ponder, that I hope raise red flags for you:
- Why are the studies that suggest psychogenesis of ME/CFIDS based on the patently invalid 1991 Sharpe/"Oxford" criteria that define nothing more than ICF?

- Why did CDC promulgate and still use today the 2005 Reeves "CFS" Criteria which has been shown in the literature (by Prof. Jason) to define a patient cohort of approximately 90% people with ICF and/or depression in the ABSENCE of ME/CFIDS?

- Why is funding at NIH at approx. $3M per year for a disease afflicting one million Americans which is more disabling than MS or untreated AIDS?

If you (or anyone else) wish to discuss further or have any questions or comments, pls contact me on mecfsforums.com under my name.

Thanks for your consideration.

Justin Reilly, esq.