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

[Seven7]

Wait disease? So now is not a syndrome!!!

 

[A.B.]

The way they are speaking gives the impression that they finally understand that this is a serious problem that needs to be dealt with. Hopefully the rest of the world will finally get it as well.

 

[eafw]

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

They may as well have called it Post Exertional Malaise Syndrome, which is how they are defining it, and then PEMS is easy to pronounce too

 

[Sean]

Encouraging patients to "act up", and agitate for research money.

They may as well have called it Post Exertional Malaise Syndrome, which is how they are defining it, and then PEMS is easy to pronounce too

Fair point.

 

[Sidereal]

Annals of Internal Medicine editorial is behind a paywall:

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

 

[Sean]

Wait disease? So now is not a syndrome!!!

Never thought I would be so pleased to be formally diseased.

 

[Scarecrow]

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

Seed? As in I'm feeling seedy. Don't like it!

 

[acer2000]

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.

 

[Sasha]

Seed? As in I'm feeling seedy. Don't like it!

Then we should push for spelling out the letters! 'I have S.E.I.D.' sounds OK.

How are the panel pronouncing it?

Thanks to those providing commentary, BTW.

 

[Debbie23]

Seed? As in I'm feeling seedy. Don't like it!

I was thinking maybe 'said' as in rhymes with ted, or shed?

 

[caledonia]

They did not answer my questions.

 

[Sidereal]

Peter Rowe has been pronouncing it by spelling out the letters S-E-I-D.

 

[Seven7]

Out of all I did not expect this. Not sure what to think.

 

[Wally]

My questions were not answered?

 

[caledonia]

I was thinking maybe 'said' as in rhymes with ted, or shed?

S. E. I. D.
Ess Eee Ai Dee

 

[dancer]

I think the change from "fatigue" to the emphasis on post-exertional relapse is an important step in how others understand what we're dealing with. but we have such a long way to go....

 

[Debbie23]

S. E. I. D.
Ess Eee Ai Dee

Ah so like you spell out the letters. I see.

 

[Antares in NYC]

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 from 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 field or discipline 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?

 

[SpecialK82]

I'm encouraged to have a real sounding name, even though not easy to pronounce. Really excited to discover how this will be marketed.

 

[eafw]

Peter Rowe has been pronouncing it by spelling out the letters S-E-I-D.

If read backwards we get DIES, maybe we should call it that