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

[jimells]

So, onto the really critical issue: how do we pronounce SEID?

For only a million dollars I'll assemble a Committee of Experts (or Non-Experts if you prefer) to study the problem, and get back to you when the money runs out.

I may not be qualified to do research, but I guarantee I am qualified to spend money!

 

[Sidereal]

I don't like the new name. It's more serious sounding than CFS but still iffy. Disease is better than syndrome, I'll give them that.

I think they should have stuck with the historic ME name, and if they wanted to avoid the whole -itis (inflammation) controversy, they could have used encephalopathy instead.

 

[wdb]

Do a Google image search for SEID, it's most inappropriate

 

[waiting]

Annals of Internal Medicine editorial is behind a paywall:

http://annals.org/article.aspx?articleid=2118972

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.

 

[Valentijn]

The name is a big improvement. PEM is now at the core of it, and "disease" is a HUGE improvement over syndrome. Syndrome is often used for "yeah, you got some symptoms", whereas disease is an explicit acknowledgement of a biological disease process. That name should also make it clear, to ignorant therapists, that exercise therapies are a generally a really bad idea for ME/SEID patients.

My only concern with the name is that Exercise Intolerance is a common symptom of other diseases as well. Presumably the PEM aspect is suitably defined somewhere?

The basic definition is also a striking improvement over the Fukuda definition. I'm not sure that I like it as much as CCC/ICC, but it's a good starting point which should at least get the research going in the right direction. PEM is now mandatory, and that is a major victory.

The explicit mention of OI in the criteria is also excellent progress. Hopefully this will result in OI being routinely tested for (and treated) in ME/SEID patients, especially since it can be hard for us to figure out why we feel so "fatigued" until someone tells us about it.

 

[SpecialK82]

Just wanted to share my thoughts. So far it's a mixed bag.

.

Not so positive:

• Not crazy about the new SEID name. Not bad, but it ignores the neurological implications that plagued many of us. It specifically rejects the "encephalomyelitis" term, despite the results of Dr. Montoya's MRI studies.

The brain inflammation studies need to replicated on a much larger scale. I think this will be a key diagnostic tool in the future when all is proven. The great thing is that these criteria will be reviewed within 5 years.

Questions:

• What medical filed will take care of us then?

Good question - we need specialists!

 

[Valentijn]

Do a Google image search for SEID, it's most inappropriate

Hey, I'm not complaining! Maybe he can be our spokesperson

 

[Anne]

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.

That was a strange reply!

 

[Scarecrow]

Do a Google image search for SEID, it's most inappropriate

Not as explicit as PENE though.

 

[Gamboa]

WOW! I'm really happy about this. I knew it would be good but this is awesome. I can't wait to read it all in detail.

I'm pleased that they will provide the report, a guide for clinicians and patients and FAQ's on their web site www.IOM.edu/ME/CFS

I liked the fact that they said no study had ever been done of this size on all the past research regarding ME/CFS. 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.

I loved it when Gabby Klein asked whether GET and CBT will be removed from the CDC tool kit and Ms. Clayton responded that treatment recommendations were beyond the scope of their mandate but that since the definition of SEID is that " exercise exacerbates symptoms" it is up to CDC to do what they think best. Yeah! Imagine that.

 

[waiting]

Anyone read the media reports on this? Washington Post, New York Times, etc. -- google search: "SEID chronic fatigue syndrome".

From Canada's CTV News -- the Associated Press-authored article is only a brief summary, but look at the photo at the top of the story -- a lab technician -- at the CDC's "chronic fatigue syndrome lab" (they have one?) in 2006 -- working with DNA samples -- not a stock photo of a woman with her head on her desk.

http://www.ctvnews.ca/health/group-...gnosis-for-chronic-fatigue-syndrome-1.2229275

 

[Sidereal]

It specifically rejects the "encephalomyelitis" term, despite the results of Dr. Montoya's MRI studies.

I agree with the general thrust of your argument but Montoya's studies have not shown encephalomyelitis.

 

[Sean]

Do a Google image search for SEID, it's most inappropriate

Seen worse.

 

[Sidereal]

http://www.today.com/health/chronic-fatigue-syndrome-real-dont-call-it-panel-says-2D80484902

Chronic fatigue is real, serious and needs a new name, panel says
Maggie Fox NBC News
1 hour ago

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Chronic fatigue syndrome is real and doctors should take it seriously, the influential Institute of Medicine said Tuesday.

Shutterstock
Chronic fatigue syndrome is real, the Institute of Medicine says
But it needs a new name to distance it from the stigma of being an imaginary illness, and doctors need clear criteria to diagnose it.

“The committee recommends that this disorder be renamed ‘systemic exertion intolerance disease’ (SEID),” the panel of experts said. “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. The Institute is an independent, non-governmental organization that guides the federal government on important medical issues. Its reports are often considered the final word on a subject.

This report could transform the way doctors treat ME/CFS, which will almost certainly now be called SEID. Insurers will likely change the way they ask doctors to code the diagnosis and the way they pay for it.

Read more here.

 

[alex3619]

Other diseases can still exclude SEID but only if all symptoms are explained, which is "very unlikely". If you have the symptoms, if you meet the criteria, you have the disease. The six month waiting period is mainly because post viral fatigue usually resolves in this time and its not good to label these patients with SEID.

In other words, we were right all along.

Neurological impairment is also central to the diagnosis. However they allow it can be either autonomic or cognitive impairment.

 

[eafw]

I think this report is a clear win to us, and a big kick in the nads to certain people whose names we all know.

Consensus on the disease as a physical syndrome, not psychological

They did say "it's a real physical disease" in the discussion but you can drive a great big psychosomatic truck right through their published definition and the diagnostic algorithm :

Patient presents with profound fatigue -> persists more than 6 months -> PEM and unrefreshing sleep -> cognitive impairment and/or OI -> diagnose

There is nothing there that would stop the psychs saying yup, and it's a conversion/somatisation/anxiety disorder, we still think GET/CBT is the best way forward.

That's a big hole to leave open, especially for a team with a lawyer on board.

http://www.iom.edu/~/media/Files/Report Files/2015/MECFS/MECFS_DiagnosticAlgorithm

 

[Gamboa]

Just wanted to share my thoughts. So far it's a mixed bag.

Positives:

• Consensus on the disease as a physical illness, not psychological
• 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.
• Clear guidelines for diagnosing the illness.
• Outright dismissal of CBT/GET as ineffective.

Not so positive:

• No talk of the severe immune problems linked to the disease. Immune dysfunction is at the core of this illness, but there's no mention of it in the diagnostics criteria. You would think NK cell count/function would enter the equation, as well as cytokine levels.
  
• No word of neurological implications.
• Not crazy about the new SEID name. Not bad, but it ignores the neurological implications that plagued many of us. It specifically rejects the "encephalomyelitis" term, despite the results of Dr. Montoya's MRI studies.

Questions:

• What medical filed will take care of us then?
  
• What treatments are recommended then?
• Will this illness receive more research funding than the current laughable amounts from the fed?

I think it is all in the report. They just didn't have time to discuss all the details for this release. The post exertional problems definitly involve cytokine dysfunction, for example, and they are not ignoring any of that research. As for the encephalomyelitis, that has been so much harder to find in patients and might not be the defining feature after all. Perhaps that will end up as a subset? There are so many other causes of the cognitive dysfunction that we have that maybe encephalomyeltis will be found to not be present after all and a different form of inflammation ( such as glial cell problems) will be the culprit.

 

[Jim]

so what of those who are ill even without exertion?

 

[jimells]

I've only read the "Report Brief", which of course is just a summary, but it ignores more questions than it answers.

It appears they want "SEID" to replace "ME", but what about "CFS"? Do patients who have not yet experienced the joys of PEM but have other symptoms get diagnosed with "CFS"? Or does "CFS" disappear?

 

[Gamboa]

My questions were not answered?

What did you ask?