MedPage Today: "Chronic Fatigue Syndrome: A Call for Real Answers to a Real Disease" (Sept 11)

[Dolphin]

MedPage: "Chronic Fatigue: A Call for Real Answers to a Real Disease" (Sept 11)
http://www.medpagetoday.com/Pathology/GeneralPathology/53502

New quite detailed article. Quite informative as articles go for websites that don't concentrate on ME/CFS. Pity about "Chronic Fatigue" in the title.

Includes comments from Lucinda Bateman, Lily Chu, Elizabeth Unger, Carol Head, Mady Hornig, Leonard Jason and Robert Miller.

 

[Sean]

Myalgic encephalomyelitis (ME/CFS) is the preferred term for patients suffering from what has historically been called CFS.

Gets it completely the wrong way around. It has historically been ME, then was rebranded CFS.

 

[Bob]

There are currently six open new drug applications for the treatment of ME/CFS under review at the FDA, according to an FDA representative who spoke at the CFSAC meeting.

Does anyone happen to know what they are?

 

[anciendaze]

Does anyone happen to know what they are?

Anyone want to place bets on some of these being relabeled antidepressants that failed to gain approval?

 

[Never Give Up]

Does anyone happen to know what they are?

I think Skip Pridgen was applying for patents on his protocol to treat CFS...

 

[jimells]

The advisory committee voted on whether to recommend SEID as the new name for the condition, but ultimately suggested use of the disease's historical name, myalgic encephalomyelitis.

I guess whoever wrote this part of the article didn't read the third paragraph where it says

historically been called CFS.

like @Sean pointed out.

Also, I'm pretty sure the committee actually couldn't agree on a new name but voted to reject "SEID".


The authors sure have a hard time getting details correct:

In 2013, the FDA rejected a new drug application for rintatolimod (Ampligen) ... after the Arthritis Advisory committee voted against recommending approval for ME/CFS. However many patients, including Miller, take rintatolimod off-label for ME/CFS symptoms.

As I understand it, Ampligen is not approved for any disease, so how can it be taken "off-label"? The way this is written implies Ampligen has been approved, but not for us. I think correct details are important, even in journalism, but apparently these journalists can't be bothered.

 

[Roy S]

Carol Head has some very good quotes in that article.

We need a Standing Study Section instead of the Special Emphasis Panel at the NIH. (boring history from the previous millennium deleted)

 

[medfeb]

Does anyone happen to know what they are?

The FDA rep to CFSAC stated that there were 6 INDs (Investigational New Drug Application) but confidentiality rules don't allow the FDA to say what they are. Bob Miller followed up stating that he understood that most were supplements or herbals or something of that type and that the only drug was Ampligen.

That's what I have understood as well from earlier discussions with FDA leaders, unless something has changed in the last year or so.

Link here - https://youtu.be/lKeWBvEBK4E?t=1937

 

[Never Give Up]

Progress! MedPage Today has changed the title of this article to

"Chronic Fatigue Syndrome: A Call for Real Answers to a Real Disease"

 

[*GG*]

Progress! MedPage Today has changed the title of this article to

"Chronic Fatigue Syndrome: A Call for Real Answers to a Real Disease"

So maybe @Dolphin can change the Title now?

GG

 

[Dolphin]

So maybe @Dolphin can change the Title now?

GG

Done