New Amy Dockser Marcus on the Lyndonville cohort

[urbantravels]

http://online.wsj.com/article/SB100...76176823580854478.html?mod=wsj_share_facebook

Ok, I have a few nits to pick with this one, I bet the rest of you will identify them immediately.

Interesting to read this one back to back with the new David Tuller article in the NYT that I just posted -- to see how psychobabbly stuff gets through the filter if you don't use the right criteria, such as that (&^%! childhood trauma paper. I can't believe Amy let that stuff get in her article so uncritically.

 

[Wayne]

Wall Street Journal Report on XMRV in Lyndonville 'CFS' Cohort

I thought this was another very good article by Amy Dockser Marcus. I was even more impressed by the video that accompanied this article; I can't think of another CFS video that succinctly explains as much about CFS in such a concise manner.

Wall Street Journal Report on XMRV in Lyndonville 'CFS' Cohort

This video offers both historical perspective, and recent research findings, although unfortunately, nothing about the spinal fluid proteins findings. In my mind however, a great 6-minute video with a compelling story that has the potential to stop many of our detractors in their tracks.

I think this video would also be excellent for those who would sincerely like to know more about CFS. It offers a convenient (and credible) way to find recent and easily understandable information in a short and easy to view segment. Kudos to Amy Dockser Marcus for an extraordinary article and video combo.

 

[urbantravels]

Somehow I missed it before, but there is also an interactive graphic on the WSJ site with a timeline of events having to do with XMRV:

http://online.wsj.com/article/SB10001424052748703580004576180390453207196.html?mod=wsj_share_twitter

What I found interesting about it is that it really de-emphasizes the release of negative studies, emphasizes the various bans on blood donation etc., and mentions the cluster of "contamination" papers in words that, glory be, seem to be appropriate to the *actual* significance of the papers rather than declaring them the death knell of XMRV research and a "demonstration" of contamination in any actual study.

With the WSJ continuing to give such big play to CFS and XMRV, I've got to assume that they, based on their sources, think the XMRV story is going somewhere positive. The WSJ is not really in the compassion business; they're in the business business. They *must* think that this is a major story going forward for businesses and industries having to do with health care and pharma to be giving it so much ink.

 

[urbantravels]

I was just noticing the stats on the sidebar in the WSJ article, all sourced from the CDC:

* Number of Americans estimated to have CFS: 1 to 4 million
* Annual productivity lost to the U.S. economy attributable to CFS: $9.1 billion
* Annual CFS-related medical costs for an individual with the condition: $3,286
* Recovery rate: 31% during the first 5 years of illness, 48% during the first 10 years of illness
* CFS is most common in women (522 cases per 100,000) and minorities, especially Latinos (726 cases per 100,000)

Where the &^%! are they getting those recovery rates? Are those Fukuda patients, empirical, what? I've heard 5-10% recovery rates quoted, but I'm not sure of the source - it seems to me those might be numbers for CCC patients, not the mixed bag produced by applying the other criteria.

 

[LaurelW]

I don't believe those medical costs either.

 

[SOC]

I was just noticing the stats on the sidebar in the WSJ article, all sourced from the CDC:


Where the &^%! are they getting those recovery rates? Are those Fukuda patients, empirical, what? I've heard 5-10% recovery rates quoted, but I'm not sure of the source - it seems to me those might be numbers for CCC patients, not the mixed bag produced by applying the other criteria.

Taking a guess here --
Some of the 31% "recovered" have to be the not-really-CFS patients they habitually include in their studies.

Additionally, I think some people go into remission if everything goes right in the first 5 years. My daughter was one of those. Today, 7 or so years after the sudden onset flu-like illness, she is out of remission and is a typical highish functioning PWC (after Valcyte treatment).

I'm guessing some of those "recovered" people will have similar stories -- they felt "recovered" at some point in the first few years, but didn't stay that way. I'd love to see a follow-up on some of the CDC's "recovered" PWCs.

The Latinos thing is new to me. Has anyone heard that before, or from ME/CFS doctor?

I'm also wondering about the word "recovery". What exactly does that mean and how do we measure it?

 

[urbantravels]

All very pertinent questions. And I don't think those medical costs per year even cover the cost of a year of antidepressant treatment.

And the economic cost of the illness per year that I've always heard is $20 billion, not $9 billion, and that the $20 billion figure comes from the CDC.

Of course the CDC makes nailing all those numbers down *quite* difficult by the wide net they're casting with their disease definition. Continually saying that CFS affects "between 1 and 4 million people in the USA" is a HUGE range. I gather that the higher number would be obtained by using the widest possible definition and including lots of tired achy people. Seriously, is there any other major disease where there's such a huge uncertainty about how many people even have it?

 

[SOC]

Seriously, is there any other major disease where there's such a huge uncertainty about how many people even have it?

It's all about biomarkers. As long as they keep focusing on "fatigue", there's no way to even come close to a reasonable estimate of the number of people who have ME/CFS. As far as I know, all other major diseases have some sort of biomarker to clearly identify the patient cohort. Why the CDC continues to ignore known biological findings is beyond me.... well, you know what I mean. It makes no sense to ignore potential biomarkers if you're really trying to identify the number of patients.

 

[SilverbladeTE]

Some folk DO recover..or perhaps more accurately "go into remission" which is somehting else entirely, as oftenyou see them relapsing years later.
exact numbers...I've heard so many, personally I'd suspect 5% go into actual full remission, and maybe 30% have *improvement*, thats' what I think they are really talking about and deliberately confusing it with.
We all know that by managing, copign we can imrpove things...the extent varies.
Also, we can likewise make things worse, by over doing it getting to stressed out etc.

 

[urbantravels]

exact numbers...I've heard so many, personally I'd suspect 5% go into actual full remission, and maybe 30% have *improvement*, thats' what I think they are really talking about and deliberately confusing it with.

You mean "improving" by PACE trial standards?:In bed: