Article: Wall Street Journal on "Unlocking Chronic Fatigue Syndrome"

Article: Amy Dockser and Wall Street Journal on ME/CFS Research

You can view the page at http://forums.aboutmecfs.org/content.php?384-Amy-Dockser-and-Wall-Street-Journal-on-ME-CFS-Research

 

Here is what I put

Amy's article illiuminates some of the many interesting areas of research occurring in CFS - which itself is amazing given the miniscule amount of funding the NIH has provided year after year to a disease their own studies indicate strikes at least a million people in the US. Amy mentioned that the last research conference was in 2003 and that spawned the last 'big' grant opportunity - which funded all of 6 studies - a big breakthrough for the CFS field.

The NIH's unwillingness to roll up their sleeves and take on CFS is the story that has not yet made into the pages of the Wall Street Journal or NY Times and other media outlets. The fact is that about 1 out of every 200 in the US suffers from a chronic, lifelong disabling condition that the US government has basically ignored for over 20 years. Nobody knows how or why they are sick - which is something the well amongst might think about. It' past time for the NIH to devote a bit more of its 25 billion dollar a year budget to CFS ($6 million).. which, despite its horrific statistics, is perenially in the bottom 5% of diseases funded.

One fascinating bit of research has been the finding by the Pacific Fatigue labs and replicated by other labs - that some people with CFS suffer from a unique metabollc dysfunction that causes them to be unable to exercise without having their ability to generate energy the next day becoming severely impaired.

For an amazingly little amount of funding given CFS the field has generated some fascinating possibilities. One wonders what would happen if the federal government actually put some money into it?

 

For the most part, I really liked this article. Thanks so much to Amy Dockser Marcus yet again.

The only part that bothered me, although it is absolutely the truth, is the first sentence where it says that ME/CFS has "long considered by many doctors to exist in patients' heads". I find too many articles in newspapers highlight the fact that many physicians still believe that ME/CFS is a psychological disorder. They often have that suggestion in the title even though the subsequent article is about how it is NOT a psychological disorder. I'm always concerned that this actually suggests to non-medical people that this could be a possibility. I am concerned that many people just read the headlines or the first few sentences of an article. Most non-medical people I talk to are unaware that there is a lot of controversy surrounding this disease. They believe the disease to be real and that it has a biological cause mostly because they actually don't know much about it (sometimes ignorance is a bliss!). I actually don't mention the controversy and just inform people about all the things that ARE known about ME/CFS. Hopefully one day soon we can have articles about this disease where there is no mention whatsoever of psychology, psychiatry, laziness, or malingering.
I don't mean to be critical of this particular article, although it might look that way. Really my post should be directed at other articles by other people but I just happen to be in the mood and my brain is functioning at the moment so I have to "strike while the fire is hot".

 

The only part that bothered me, although it is absolutely the truth, is the first sentence where it says that ME/CFS has "long considered by many doctors to exist in patients' heads".

I agree Gamboa. At what point in time do we get to stop prefacing articles with the outdated psycological beliefs and just start out describing the conditon. Everytime they bring that up it creates doubt in the reader's mind.

I do however - love, love, love Amy Dockser - she is incredible and I beleive she truly cares about our illness.

 

Those would be good comments to put in the comment section.

Hopefully most people, by the time they were done with the article, will have forgotten that sentence. I think I would have.

In any case the best way to support this kind of reporting which emphasizes pathophysiological research and ensure that it continues is to click on the article and comment.