Washington Post article "Don't wait for a cure to appear"

[Jerry S]

I found this article published in the Washington Post yesterday to be misleading and inaccurate. Here's the letter I wrote them.

October 28, 2009

To the Washington Post:

"Don't wait for a cure to appear" by Zachary Sklar, October 27, 2009, is a shameful substitute for honest journalism. I'm shocked to see it in the Washington Post Health section. I'm happy that lifestyle changes helped Mr. Sklar recover from whatever illness he may have had. However, it is irresponsible of the Washington Post to publish these musings of an admitted non-scientist as if they were significant.

The retrovirus XMRV is indeed different from the viruses that have been previously associated with the disease the CDC calls chronic fatigue syndrome. Mr. Sklar should at least know this before airing his uninformed opinions. The new study by the Whittemore Peterson Institute, published in the distinguished journal Science, offers hope for patients with a life-destroying disease to finally get an appropriate diagnosis and effective treatment. The Washington Post seems to have missed this.

Sincerely,

Jerry S [real name]
Chicago, IL

I also left a comment on the article at the site.

Here's a link to the article.

 

[xchocoholic]

I have to agree with the author here. He did say that he felt better not that he was cured. And he said that if the XMRV studies prove to be helpful that's great, but why wait ?

I've seen far too many people, including me, successfully take control of their health via diet, supplements, etc that I could never go back to not believing it's possible for our bodies to heal. We may not heal completely from this DD but IMHO, it's certainly enough to make it worthwhile. If nothing else, it gives us hope and something to work on.

I've been sick since 1990 and spent 15 and 1/2 years waiting for my traditional doctors to help and it never happened. Been there done that ... Ain't going back ... I've healed quite a bit in the last 4 years so I feel much better about my chances of healing from this DD.

I started this DD with a virus that never went away and I'm positive for a slew of known CFS viruses. In my case, my doctors have all told me that all this means is that my immune system is hosed. I was told that antivirals were a waste of time cause I'd just catch something else ...

IMHO, As long as the definition for CFS is so wishy washy and proper tests aren't being run for food intolerances, bacteria, candida, parasites, etc. we'll never have a good definition of what CFS really is. And all those with these problems will remain sick when a good deal of this is treatable.

Just my 2 cents ... x

 

[Frickly]

Jerry

I understand why this article bothers you and it bothers me too. Dr. Teitlebaum made a simular statement stating that we might be sitting around for 5 to 10 years waiting for this XMRV thing to pan out when we could be activly trying to cure ourselves through his SHINE protocol.

I take offense to these kind of statements. Most of the people I talk to online with CFS have tried everything under the sun, including the SHINE protocol. We are not sitting around waiting for someone to give us a pill. The fact is, there are some things we cannot fix. However, this dosen't mean we stop trying.

I will continue taking all my supplements, antibiotics, antiviral injections, glutithione injections, drinking my vegetable juice, ect. I will also continue to be hopeful about this new research and a new treatment.

 

[annunziata]

I am not too impressed with this article. The writer avers, "In the 1990's another retrovirus was announced with fanfare as the culprit. Many were disappointed when subsequent studies could not confirm any link between it and the illness."

Now there's a misleading statement for you. Is he that ignorant? The CDC never made a real effort to duplicate Dr. de Freitas' work. I heard her (at the Albany conference) protesting in the strongest terms that they had not followed her protocol. Having tested positive at that time myself, I've never felt casually dismissive of the retroviral theories.

Also, he seems to think that a retrovirus is no more significant than any of the common herpes viruses. I believe many physicians and virologists would disagree with this -- no?

Amy

 

[kolowesi]

Jerry heal thyself

Thanks for the great letter and kicka$$ comment at the article.

It's funny how this hits some as such a positive opinion piece and others like an implication that it's our own fault we're sick and we aren't trying hard enough to get well.

It seemed to me the author implied that if one hadn't gotten well, one hadn't taken control of one's own health.

I know for a fact he is wrong about that.

I've taken control, I've taken responsibility. I believe that somehow this process is going to teach me something I need. I may die from it, but I intend to take it as an opportunity for growth.

Having tried diets from every doctor I've seen (including naturopaths, DO's, DOM's, MD's with nutritional degrees), from many books I've read, and from all the advice I can glean from the forums, I have to say, diet is not the only factor for me.

I'm glad it is for some. Maybe over a period of many years, one could heal from diet. If one didn't die from all the infections in the meantime.

And don't get me started on exercise. Exercise has done me far more harm than good.

The author is not the only one who gives me the message that I have a weak character because I haven't gotten well. I'm used to it. And I know it's not true. I'm going to use this as an opportunity to stand up for myself and not believe this message.

Once there was a great thread on PH about how we are stronger than we realize. Those of us on these websites, who have access to computers, are so fortunate. We can discuss the best approaches, we have access to a tremendous amount of information, we have others who know what it's like.

It's laughable to suggest we haven't taken charge of our own health. It's absurd. I found out within a month of getting sick that I would have to search out help, and I've been doing it ever since.

I have my prejudices, it's part of being human. But I am striving to be open, to not judge myself and to not judge others. I'll have to say, this Sklar guy has shown me that I'm still doing that.

Kelly

 

[Jerry S]

Quoted by annunziata from the WP article:

"In the 1990's another retrovirus was announced with fanfare as the culprit. Many were disappointed when subsequent studies could not confirm any link between it and the illness."

Yes, I noticed that, too, Amy. Zachary Sklar seemed to be saying not only that XMRV is just another virus, but that it's just another retrovirus. Certainly, fair reporting would have gone into more detail about the 1990's retrovirus.

At any other time, this kind of light opinion piece would not be so troubling. The problem is that, aside from a short blog post on Oct. 8, this is the only coverage the Washington Post has given the WPI study. The intent of my letter was to encourage them to do a better job in the future.

Jerry

 

[Jerry S]

kolowesi:

It seemed to me the author implied that if one hadn't gotten well, one hadn't taken control of one's own health.

I know for a fact he is wrong about that.

Yes, Kelly. It was not emphasized in the article that many of us have made the lifestyle changes and done the alternative therapies, and we're still too sick to work, socialize, or even take care of ourselves.

Great comment you made. I was sorry that I could only recommend it once.

 

[aquariusgirl]

Yep. I agree with him.

I think he's right, or at least my experience is consistent with what he says. I don't think he is casting aspersions on anyone.. that's not how I read it.

From my reading, the people who improve have done lots of things to get well.esp, if like me, they have had this a long time.

I belong to the school of thought that holds it's more complex than one virus or retrovirus...the immune system and various other systems have gone down...and reducing viral load is only part of the solution.

 

[Jerry S]

aquariusgirl:

I think he's right, or at least my experience is consistent with what he says. I don't think he is casting aspersions on anyone.. that's not how I read it.

From my reading, the people who improve have done lots of things to get well.esp, if like me, they have had this a long time.

I belong to the school of thought that holds it's more complex than one virus or retrovirus...the immune system and various other systems have gone down...and reducing viral load is only part of the solution.

I don't think that it was his intent to cast aspersions, either. Mr. Sklar posted in the comments section that he had been misunderstood by many and apologized if he had been misleading.

I think it is very probable that the influential people who read the Washington Post could easily be mislead into thinking this XMRV is no big deal from reading the article, and should see other opinions.

 

[xchocoholic]

Please don't take this the wrong way, but I'm confused at to why some of you are taking offense to this article ..

Maybe you're confusing taking charge of your health with getting healthy ? The difference is that the patient is in charge. He or she is the one holding the strings and not just following their doctor's advice. They're asking for specific tests, asking questions about what they've read, etc. You'd think most doctors would hate this but most of mine have been great ...

Also, the author said that he felt better at 61 than he did at 38, not that he was healed. So he's being perfectly honest with us. And I didn't see him berating anyone for not trying healing themselves. Only encouraging others to try it. This is something I tell my 21 year old DD with severe food allergies, a high ANA, kidney problems, high blood pressure, etc etc everytime I talk with her.

I still respect and listen to my doctors because I know that they know more than I do about how the body works but they're listening to me too.

FWIW ... I'm not totally up on Dr. T's protocal but based on his appearance on the Dr. Oz show, I'm certainly not convinced that he knows what he's talking about. I'm still reading his book, but IMHO sleep is certainly the most important aspect of healing from this DD. Your body can't heal unless you're sleeping soundly.

The rest of his SHINE protocal .. hormones, infections, nutrition and excercise makes sense but only if excercise is last. I'm assuming he's not telling someone who's excercise intolerant to start doing aerobics. But building up our muscles after a long illness is a good idea. I'm definitely deconditioned now.

I'm sure based on how CFS is diagnosed currently that some of his CFS patients do get better. Many people are low on B12, iron, etc and just need supplements ... However, unless he addresses leaky gut, many, like me, wouldn't respond.

TC ... X

 

[Advocate]

I found this article published in the Washington Post yesterday to be misleading and inaccurate. Here's the letter I wrote them.

October 28, 2009

To the Washington Post:

"Don't wait for a cure to appear" by Zachary Sklar, October 27, 2009, is a shameful substitute for honest journalism. I'm shocked to see it in the Washington Post Health section. I'm happy that lifestyle changes helped Mr. Sklar recover from whatever illness he may have had. However, it is irresponsible of the Washington Post to publish these musings of an admitted non-scientist as if they were significant.

The retrovirus XMRV is indeed different from the viruses that have been previously associated with the disease the CDC calls chronic fatigue syndrome. Mr. Sklar should at least know this before airing his uninformed opinions. The new study by the Whittemore Peterson Institute, published in the distinguished journal Science, offers hope for patients with a life-destroying disease to finally get an appropriate diagnosis and effective treatment. The Washington Post seems to have missed this.

Sincerely,

Jerry S [real name]
Chicago, IL

Great job, Jerry! Wonderful letter!

 

[Jerry S]

Thanks, Advocate! I must admit that I didn't think it was so bad for someone who can barely read.

 

[leelaplay]

Thanks, Advocate! I must admit that I didn't think it was so bad for someone who can barely read.

Not so bad at all Jerry!

I find it reassuring when, out of the dark of devasting, almost incomprehensible inability, these flashes of pre-illness self appear.

if

 

[Jerry S]

Gee, thanks, Finn!

Consider this:

The Washington Post got Zachary Sklar to write an opinion piece responding to the WPI XMRV study. The New York Times got Hillary Johnson.

 

[annunziata]

Here is why I'm unhappy with this article.

This is a professional writer, writing about a serious disease that has been terribly maligned, and publishing his thoughts in a major newspaper. Yet he opens with 'Maybe we're not all slackers', etc. -- hardly a staunch defense of the legions of people suffering with this disease, and not much of a memoriam for those who have died. He isn't just cautious about the WPI study, he is dismissive, and doesn't seem to be aware of the import of the previous work by Elaine de Freitas, or the way in which it was suppressed by the CDC.

Surely most people think about the myraid assaults on our health, and many of us are taking the best care that our energy and resources allow. And the majority of us have not recovered, not after imbibing gallons of wheatgrass juice, or injecting kutapressin or glutathione or B12, or trying many of the alternative modalities available. I don't say any of these are bad things to be doing -- my own juicer works hard, almost every day -- but they haven't proven to be a cure.

But what really strikes me is a lack of intellectual excitement about Dr. Mikovits' work and the potential it has to alleviate the suffering of millions of people. That should be the focus of something appearing in the wake of this discovery. Instead, there is a solipsistic discussion of one person's history and what has worked for him. I think it's very disappointing to see something that belongs in a patient discussion group showing up in the WaPo.

 

[Frickly]

Yes!

Here is why I'm unhappy with this article.

This is a professional writer, writing about a serious disease that has been terribly maligned, and publishing his thoughts in a major newspaper. Yet he opens with 'Maybe we're not all slackers', etc. -- hardly a staunch defense of the legions of people suffering with this disease, and not much of a memoriam for those who have died. He isn't just cautious about the WPI study, he is dismissive, and doesn't seem to be aware of the import of the previous work by Elaine de Freitas, or the way in which it was suppressed by the CDC.

Surely most people think about the myraid assaults on our health, and many of us are taking the best care that our energy and resources allow. And the majority of us have not recovered, not after imbibing gallons of wheatgrass juice, or injecting kutapressin or glutathione or B12, or trying many of the alternative modalities available. I don't say any of these are bad things to be doing -- my own juicer works hard, almost every day -- but they haven't proven to be a cure.

But what really strikes me is a lack of intellectual excitement about Dr. Mikovits' work and the potential it has to alleviate the suffering of millions of people. That should be the focus of something appearing in the wake of this discovery. Instead, there is a solipsistic discussion of one person's history and what has worked for him. I think it's very disappointing to see something that belongs in a patient discussion group showing up in the WaPo.

Thank you for putting all my thoughts into actual words. This is difficult for me to do with little ones asking me a question every five seconds.

 

[Jerry S]

Amy,

A thing that got me was - who has the XMRV study stopped from continuing to do what they think is best for their health. I don't know anyone who has reduced their efforts to get healthy because of the study.

Who's supposed to be now just waiting for a cure because of the XMRV study?

I agree with what Frickly just said. Thanks for putting my thoughts into words so well!

 

[Frickly]

What if we have no money?

Jody just put out a new article called "No Money, No Health". I consider myself very lucky that my husband is healthy and makes good money. We have good insurance and can pay "out of pocket" to a degree.

Jodies article made me think about how others with less would view this article. Not all of us have the means to help ourselves. Some of us are depending on research to validate this disease, which in turn, would make it easier and cheaper to get treatment. OK...that is as deep as I can get, my daughter has to go to the bathroom and is scared of the dark.

 

[annunziata]

Frickly and Jerry,

Thanks, guys. Occasionally, the organ I am pleased to call my brain rallies briefly.

Jerry, I thought that, too -- I have no plans to ditch my juicer and start feeding at Dunkin' Donuts, chain-smoking, and staying up til all hours sipping absinthe. Because, hey, I might be on anti-viral chemo someday, so why not!

Frickly, that is such a good point. I must look at Jody's article.

Amy

 

[xchocoholic]

Oh, I get it now. See, I'm the dummy who was waiting for a cure all those years. I can't begin to tell you how many people who tried to get me to eat organics or try aminos or other supplements that I told I had an incurable disease and there wasn't anything I could do about it.

As far as this author and this newspaper goes, I was taking it all with a grain of salt. I just figured this was a guy who has CFS and only works part time ... and in his mind, he's trying to help people like me.

I'm not excited about the XMRV findings either because who knows when something is going to come out of this. A vaccine won't do me any good now. And from what I understand the only reason AIDS got so much attention is that it kills people and they had some high profile people who caught it.

good discusssion all .. thanks ... x