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

[zoe.a.m.]

Not sure what his intent was, but he missed some things...

He sounded to me like an educated adult speaking about taking charge of one's own health to some degree. However, he lost me when he spoke about others waiting for someone else to fix things; after all, it sounds like it was not him, but his humorously-named naturopath, who got him to a place where he could begin to improve.

If all people who got CFS/ME were 38 and financially independent when they got sick, the playing field would be different. I have been fortunate enough to employ alternative practitioners--but not because I'm more motivated or responsible--but because I was able to convince a family member to pay for it. On the other hand, I was unlucky enough to get sick in my early 20s, before I could get enough of a career under my belt to have some income, before I could get married to a healthy partner, before I was able to own or secure a home. The real cost of this illness is embedded in all of these factors.

I get turned off whenever I hear anyone speak about the "realities" of CFS/ME without talking about how limited the choices for so many are. His opinion is a popular one in the US: that if you pull yourself up by the bootstraps (to some degree), you can improve your lot. But illness, especially those that hit children, do not discriminate. Considering the bulk of bankruptcies in the US are illness-related, and there are stories on a daily basis of people in need being denied even the most basic care, I would consider him more a lifestyle writer than a reporter.

If this guy wants to know how a reporter might look at this story, he can rent The Wire's last season and learn a bit about the levels of complexity at work beneath any outright problem. Perhaps, with his fierce desire to be responsible and knowledgeable, he can make the time!

 

[kolowesi]

wavelength

Hi, all,

I couldn't stop thinking about that article. I wrote a new comment, and then I came on here, and found out ten other people were talking about the same issues.

Here's what I said (I wish I were more articulate):

After much thought on Mr. Sklar's piece, I'd like to add that no one I know was excited or happy to think they might harbor a retrovirus which could cause cancer and other disease and which could be transmissible.

Some were exceedingly distressed.

I didn't read or hear any reaction that was "Oh, goodie, I can take a pill instead of modifying my behavior." No doubt, someone did, if Mr. Sklar says so.

Most people I know were excited at the prospect of more research being done, and at the acceptance of this "syndrome" as an organic disease by doctors.

Many people can't afford accupuncture, supplements, or even medicine. Many have been denied disability. I know more than a few who live on the charity of family (I am one).

Many do not have the money to travel to the few specialists in the U.S., some of whom do not take insurance.

Others have spent their life savings pursuing various treatments.

At least one person I know is contemplating suicide as there is no treatment in her country and she spent all her money coming to the U.S., cannot work, and is in a lot of pain.

Note to Quizzical: Narcissists don't commit suicide, but it is one of the leading causes of death in PWME/CFS.

I know several people who live on very little money with none for treatments. Others must live outside due to chemical and mold sensitivities.

If more research follows the retrovirus discovery, it is possible that insurance will have to pay for testing, treatment, and disability.

It is possible that doctors will stop assuming that we have a psychological problem and offer help for the many disorders we have.

You might imagine that there is a huge financial incentive to the insurance industry to keep the status quo: CDC recommendations for no testing, and treatment consisting of cognitive behavioral therapy and graded exercise therapy.

I wish the Washington Post would be more balanced in its reporting. Though I totally believe in doing whatever I can on my own, supportive treatments like organic food and acupuncture are a luxury beyond reach for too many.

Oh dang, I misspelled acupuncture. Off to read Jody's blog. Thank you all, I have learned a lot today.

Kelly

 

[bluebird]

I have to say that it is my humble opinion that if you've been extremely ill for 20 years, bedridden, suffering, unable to care for yourself, have availed yourself of everything known to man and are still this ill and growing more so, that just maybe you would take offense when anyone, anywhere suggests that you are not trying to feel better. Just sayin'...cuz I do take offense. I do whenever I hear this kind of diatribe. Very poor and irresponsible journalism in that article.

Ditto everything Jerry S said in his letter to the Washington Post.

And yeah: "I'm happy that lifestyle changes helped Mr. Sklar recover from whatever illness he may have had."

 

[Wayne]

Excellent Points 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.

I think it's very disappointing to see something that belongs in a patient discussion group showing up in the WaPo.

Wow Annunziata, great points and great writing. I was wondering if you posted this on the Washington Post comment section. I would recommend it if you would be open to doing that.

I was willing to give this writer a lot of leaway until I learned he was a professional writer. I cringed when he was dismissive of the "1990's retrovirus". But thought he was just some sort of guest writer or something. His lack of some basic knowledge about something this important at this important time really is inexcusable, especially since he knew it would be published in the WP.

I would disagree with the writer on a key point of his article. I have been watching the many posts being made here involving neural therapy and some adjunctive therapies (such as acupuncture) to it. I normally respond very well to these types of therapies and have been fairly keen on trying to find somebody fairly locally who I could work with.

But, it's generally a fairly long and fairly expensive proposition to go this route. I've pretty much decided that I will wait until we know more about the XMRV virus, and perhaps some relatively inexpensive ways to treat it will be found. To me this makes sense. But I don't intend to quit doing the hundreds of things that I've found has helped me over the years to go from about 4% functionality to about 20-25%.

Doing these kinds of things I believe was the jist of his article, which I wouldn't argue with. It's the points you mention that I also take issue with. Congratulations on that piece. Your brain sure seemed to be perculating on that one! I occasionally have moments when I can pull off something like that. Kinda rare and far between these days however.

Best Regards, Wayne

 

[Jerry S]

xchocoholic:

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 points! I'm cautiously optimistic about the study mainly because I would like some validation and recognition that I have a real disease.

I've often thought that ME/CFS doesn't get the same attention as AIDS because people with it don't die as obviously from the disease. It does shorten lives, but it goes unnoticed. Thanks for contributing.

 

[Jerry S]

Kelly

You wrote:

I couldn't stop thinking about that article. I wrote a new comment, and then I came on here, and found out ten other people were talking about the same issues.

Here's what I said (I wish I were more articulate):

I think you're plenty articulate! I misspelled Sklar twice as Skar. I hope he doesn't think I did it on purpose.

Wow! Kelly. You made so many really great points in your comment. Well done indeed!

 

[annunziata]

I was willing to give this writer a lot of leaway until I learned he was a professional writer. I cringed when he was dismissive of the "1990's retrovirus". But thought he was just some sort of guest writer or something. His lack of some basic knowledge about something this important at this important time really is inexcusable, especially since he knew it would be published in the WP.

Wayne, thanks for the kind words. I agree completely -- this sort of dreck is just inexcusable for a professional. It made me angry and sad to see things like this 15 years ago, never mind now, with thousands of peer-reviewed medical journal articles and the WPI research in Science. Ah, well, righteous anger has completely worn me out.

Amy

 

[Robin]

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.

That's an area of research that is often overlooked: who recovers and why. Pretty much everything we know about it is anecdotal. Even the CFS doctors don't seem to have a bead on it. I wish there was an effort to actually enroll the recovered people into studies and look for patterns.

I've known people who have recovered that did nothing more than rest, and also some who took antibiotics, and one guy who really believe smoking marijauna cured him. I've been ill for a long time and tried quite a bit of things, but nothing helped. I did improve a lot to semi-wellness by just resting. I'm very ill now from overdoing for a year and a half due to a family crisis, but, I'm starting to slowly improve again -- no "treatments" except bed. ;-)

I have no doubt that most of if not all of us have tried dietary changes, homeopathy, sleeping medication, etc. If Sklar's protocol was a truly treated CFS everyone here would be back at work.

 

[annunziata]

xchocoholic:

Good points! I'm cautiously optimistic about the study mainly because I would like some validation and recognition that I have a real disease.

I've often thought that ME/CFS doesn't get the same attention as AIDS because people with it don't die as obviously from the disease. It does shorten lives, but it goes unnoticed. Thanks for contributing.

Xchocoholic and Jerry,

I'm also cautious about the XMRV findings, and have no expectation that I will get any kind of effective treatment soon, or possibly ever. My feeling was more one of prospective vindication.

I know people who have had CFS for years who have developed imminently life-threatening illnesses. I ran into another patient about six weeks ago, I've known her for a long time and her history and tests are very similar to mine, although her onset was less abrupt. She has leukemia and has had a stroke. I've heard about others through the grapevine, although she is the only one I actually have talked to.

X -- how did you become an EX-chocoholic? Ambrosia of the gods, I say

Amy