Release of the IOM report - live webcast-2/10/2015

[Joss]

You can click on the free download button & then when you are prompted for an account, you can click that you don't have one & then set one up on the spot and download.

Get 404 error for link to Annuls of Internal Medicine?

 

[worldbackwards]

Reporting that up to 2.5 million Americans may suffer of this, with up to 91% of sufferers not diagnosed. Those are some staggering and scary numbers, and an indictment of the medical community for ignoring this illness for over three decades since the major outbreaks that made the news.

Sounds strikingly like a midpoint between the 4 million on the psychs and the 900,000 of Lenny Jason. The criteria, though vastly better than Fukuda, is a bit odd - why sleep and not pain?, no clear neurological signs. I'm quite enjoying the name though, especially the 'disease' rather than 'syndrome' bit.

ME/SEID patients.

The first of many?

And another ridiculous picture...

Tense, nervous headache?

 

[Valentijn]

I can't wait to see what the British media make of the report

 

[alex3619]

so what of those who are ill even without exertion?

Are you awake? Did you get out of bed? The most sick may be overexerting just being awake, breathing and eating. Post exertional issues are hallmarks, not the only symptoms.

 

[wdb]

Lots of news coverage already:

Panel Asks: What Defines Chronic Fatigue Syndrome?
HealthDay - ‎22 hours ago‎
MONDAY, Feb. 9, 2015 (HealthDay News) -- Chronic fatigue syndrome is about to get a new clinical definition, with the hope that it will help physicians better diagnose people afflicted with the mysterious and complex disorder. On Tuesday, the Institute of ...

Chronic fatigue syndrome is real condition, not just psychological, panel says
Washington Post - ‎1 hour ago‎
Chronic fatigue syndrome is a "serious, debilitating" condition with a cluster of clear physical symptoms — not a psychological illness — a panel of experts reported Tuesday as it called for more research into a disease that may affect as many as 2.5 million ...

Chronic fatigue syndrome is real, but don't call it that, panel says
Today.com - ‎1 hour ago‎
“SEID should replace myalgic encephalomyelitis/chronic fatigue syndrome for patients who meet the criteria set forth in this report.” Too many doctors dismiss patients with the condition, which is characterized by extreme fatigue, the panel of experts says.

Chronic Fatigue Syndrome Gets a New Name
New York Times (blog) - ‎1 hour ago‎
The Institute of Medicine on Tuesday proposed a new name and new diagnostic criteria for the condition that many still call chronic fatigue syndrome. An institute panel recommended that the illness be renamed “systemic exertion intolerance disease.

Report Urges New Name, Better Diagnosis for Chronic Fatigue
ABC News - ‎59 minutes ago‎
A new report declares chronic fatigue syndrome a real and serious disease and needs a new name to reflect that — along with a straightforward way to diagnose the illness. The Institute of Medicine sought to redefine this long-controversial ailment Tuesday, ...

Seeking to redefine chronic fatigue syndrome, advisory group urges new name ...
Minneapolis Star Tribune - ‎58 minutes ago‎
The Institute of Medicine sought to redefine this long-controversial ailment Tuesday, after hearing from patients that the "chronic fatigue" moniker belittles their suffering. The panel advised the government that instead, it should be named Systemic Exertion ...

Institute of Medicine calls for renaming chronic fatigue syndrome
Al Jazeera America - ‎52 minutes ago‎
Chronic fatigue syndrome, a disorder that has for decades been trivialized by an inappropriate name should be renamed systemic exertion intolerance disease (SEID), according to a study released Tuesday by the Institute of Medicine. Sufferers of chronic ...

New Name, New Criteria for Chronic Fatigue Syndrome?
HealthDay - ‎16 minutes ago‎
TUESDAY, Feb. 10, 2015 (HealthDay News) -- Chronic fatigue syndrome, a debilitating illness affecting up to 2.5 million Americans, may soon get a new name and set of diagnostic criteria. In a report released Tuesday, an independent panel of experts ...

Redefining the Chronic Fatigue SyndromeRedefining the Chronic Fatigue ...
Annals of Internal Medicine - ‎1 hour ago‎
The chronic fatigue syndrome, a disease that devastates patients' lives and affects between 836 000 and 2.5 million Americans (1), is often ignored or mismanaged by clinicians. The disease affects both children and adults and both males and females.

IOM Gives Chronic Fatigue Syndrome a New Name and Definition
Medscape - ‎1 hour ago‎
The illness that has been called "chronic fatigue syndrome" (CFS) in the United States and "myalgic encephalomyelitis" (ME) elsewhere is a "serious, complex, multisystem disease" that physicians need to view as "real" and diagnose, the Institute of Medicine ...

New IOM report identifies five symptoms to diagnose chronic fatigue syndrome
Medical Xpress - ‎7 minutes ago‎
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome—commonly referred to as ME/CFS—is a legitimate, serious, and complex systemic disease that frequently and dramatically limits the activities of affected individuals, says a new report from the Institute of ...

Chronic fatigue syndrome - What's in a name?
EurekAlert (press release) - ‎1 hour ago‎
The author of a related commentary being published in Annals of Internal Medicine suggests that a new name alone will not improve the lives of people suffering with chronic fatigue syndrome, but expresses optimism that improved clinician knowledge and ...

 

[Sidereal]

I am SO GLAD that they have done a 180 on the issue of comorbidity. Fukuda, Oxford and other psych geared criteria have always pushed the argument that you can't have this disease if your "fatigue" is explained by another disease. I am sick and tired of being told that you can't have ME/CFS (SEID... whatever) if you are discovered to have another "real" condition. What other condition accounts for PEM and OI/POTS/NMH and all the other symptoms? I have a couple of comorbidities that also can cause fatigue yet when I go on patient forums for those diseases I feel like an alien in terms of the amount everyone else can do compared to me.

 

[Sean]

I would like pain to be in the primary diagnostic criteria. Major symptom for me, always has been.

But I have not read the full report yet, so they may discuss that in there. (Be surprised if they don't.)

 

[Anne]

You can click on the free download button & then when you are prompted for an account, you can click that you don't have one & then set one up on the spot and download.

I don't see a free download button. Could someone download it and copy-paste here?

 

[waiting]

The Washington Post: "Chronic Fatigue Syndrome is real condition, not just psychological, panel says".

http://www.washingtonpost.com/news/...ot-a-psychological-illness-expert-panel-says/

 

[acer2000]

Seems positive that they recommend including PEM. But I wonder why they didn't just keep the name ME? I mean its pretty straightforward and accurate...

 

[waiting]

I don't see a free download button. Could someone download it and copy-paste here?

Top right of page, click on "Download Report"
http://www.iom.edu/Reports/2015/ME-...il&utm_term=0_5e3a5cfc5c-efea9cf86a-180323193

 

[CantThink]

Ugh, Q: "can we donate blood?" A: Dr. Bateman: "I don't think this has been an issue for a while now."

Personally, I don't think they should be encouraging anyone with an illness of unknown etiology to donate blood.

As far as I am aware we are not allowed to donate blood in the UK.

 

[alex3619]

I can't wait to see what the British media make of the report

How about "those whacky Americans, see what crazy thing they came up with now?".

An even worse one would be "The report does not explain causation. All of these symptoms can be caused by a functional somatic syndrome." It doesn't seem to matter there is no proof any functional somatic syndrome exists unlike ME, ahem, SEID, uhhhm, ME.

 

[Antares in NYC]

The Washington Post: "Chronic Fatigue Syndrome is real condition, not just psychological, panel says".

http://www.washingtonpost.com/news/...ot-a-psychological-illness-expert-panel-says/

"...not just psychological"

 

[alex3619]

As far as I am aware we are not allowed to donate blood in the UK.

Or organs.

 

[Sasha]

Our lovely David Tuller in the NYT:

http://well.blogs.nytimes.com/2015/02/10/chronic-fatigue-syndrome-gets-a-new-name/?_r=3

 

[jimells]

They also mentioned, when asked why they didn't stick with CCC, that that is now 10 years old and a lot of new research has been done since then. I like CCC but hadn't thought of it like that.

Did they mention just what research in the last ten years invalidates the CCC? If there is any, apparently everyone here has missed it.

 

[eafw]

If the CDC decide to adopt this SEID definitition, do they then expect the rest of the world to fall in line ?

That is, in this day and age you would expect an international consensus for such a serious and significant disease (imagine if everyone had different names and definitions for MS or HIV, it would seriously hinder research for one thing)

 

[worldbackwards]

I haven't really been following this too closely until now, but what will actually happen now? Anything? Will it be shoved in a drawer and the medical establishment be left to go about their business?

 

[Sasha]

"...not just psychological"

Comments are allowable - to be fair, I think that the headline maybe meant 'not a mere psychological illness' but I know what you mean! Anyone want to register and ask for a correction to 'not psychological'?