MedPage Article Says "Real Answers Needed" For ME/CFS

[Cort]

More good press! This time aimed right at doctors. This Medpage article "2015 Recap: Call for Real Answers to Chronic Fatigue Syndrome" on ME/CFS continues a long run of excellent articles that started with IOM report early last year.

[fright]

[/fright] It adds one bit of news; the FDA says six open new drug applications for ME/CFS are under review at the FDA. That news came from the CFSAC meeting. I'm not sure what "under review" means.

Some highlights

More importantly, the IOM report validated the message patient and advocacy groups had been pushing for decades -- that ME/CFS is a debilitating, multisystemic, medical illness.

It also noted that as many as 2.5 million people in the U.S. may have the disease, but 84% to 91% of patients go undiagnosed.

...............

Both the IOM report and the CFSAC recommendations emphasized the dearth of federal investment in the disease.

The economic burden of ME/CFS to society -- based on lost productivity and medical expenses -- stands somewhere from $17 to 24 billion annually, according to the IOM.

Yet NIH spent only $5 million on the disease in fiscal year 2015. An agency report ranks funding for the condition at 231 out of 244 disease research categories, noted a patient's open letter to Francis Collins, MD, PhD, director of the NIH, in the Washington Post.

 

[Merry]

Good article, but I wish someone would challenge the comment by H. Robert Silverstein, MD, who insists that patients suffer from a false illness belief and a sense of entitlement and can only recover if they exercise (and change diet -- no potatoes!). He claims that patients get ridiculous ideas about being ill from participation on online groups. He scoffs at the notion that patients are as ill as the article claims. According to him, and he's the expert, most patients are not bedbound or housebound.

(I tried to go back to copy his comment to paste or to simply reread it, but I got an obscuring pop-up telling me to login.)

 

[Cort]

Good article, but I wish someone would challenge the comment by H. Robert Silverstein, MD, who insists that patients suffer from a false illness belief and a sense of entitlement and can only recover if they exercise (and change diet -- no potatoes!). He claims that patients get ridiculous ideas about being ill from participation on online groups. He scoffs at the notion that patients are as ill as the article claims. According to him, and he's the expert, most patients are not bedbound or housebound.

(I tried to go back to copy his comment to paste or to simply reread it, but I got an obscuring pop-up telling me to login.)

I got a comment in there. Since Medpage warns about negative comments I tried to make it as positive as possible. Silverstein's comment - is completely contrary to what is posted in the article. I added

Thanks for the comprehensive article on chronic fatigue syndrome. It is a real and serious disease. Studies indicate it has amongst the highest impacts on functioning and quality of life of any disease. Exercise studies suggest that a unique metabolic dysfunction may impair patients ability to exercise.

Unfortunately, as the review notes and the one comment entered thus indicates, too few doctors have little knowledge of ME/CFS. I encourage Dr. Silverstein to watch some of the CDC's video presentations featuring some of the physicians mentioned in this article and attend the CME courses found there to learn more about it.

The most salient fact about ME/CFS is that it, like other disease's it's often associated with such as fibromyalgia, migraine, irritable bowel syndrome and interstitial cystitis, poses a large economic burden upon the U.S. yet receives almost no federal funding. That, hopefully, will change.

 

[Merry]

Oh, thank you, @Cort! That's a great response. I didn't trust myself to post a calm response or one that made sense.

I googled to find out who H. Robert Silverstein, MD., is and am astonished to discover that he's grew up in the county seat of the same rural Ohio county where I grew up. Small world.

 

[Cort]

Oh, thank you, @Cort! That's a great response. I didn't trust myself to post a calm response or one that made sense.

I googled to find out who H. Robert Silverstein, MD., is and am astonished to discover that he's grew up in the county seat of the same rural Ohio county where I grew up. Small world. I feel sick.

It's like he just didn't even read the article....Oh well...