IOM & SEID - Jen Brea, Dr Ellen Clayton, Dr Enlander on NPR phone-in 10am Mon 16 Feb

[Sasha]

Hi everyone! I will be appearing Monday morning live at 10am ET/7am PT on the national NPR show, On Point along with Dr. Ellen Wright Clayton, chair of the IOM committee, Dr. Derek Enlander of Mt. Sinai and Dr. Daniel Neides of the Cleveland Clinic.

The show will discuss Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and the new name and definition for Systemic Exertion Intolerance Disease (SEID).

It is a one hour, live call in show, so you can call in with your questions or comments during the broadcast. Here is how to call on point:http://onpoint.wbur.org/contact-on-point

You can listen to the live broadcast online here:http://www.wbur.org/listen/live

Or find the broadcast time on your local station here (some times are live, some are re-broadcasts): http://www.wbur.org/syndication

And here is how you can listen online after the show:http://www.npr.org/podcas…/510053/on-point-with-tom-ashbrook

 

[Nielk]

From Canary in a Coal Mine https://www.facebook.com/canaryfilm

Hi everyone! I will be appearing Monday morning live at 10am ET/7am PT on the national NPR show, On Point along with Dr. Ellen Wright Clayton, chair of the IOM committee, Dr. Derek Enlander of Mt. Sinai and Dr. Daniel Neides of the Cleveland Clinic.

The show will discuss Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and the new name and definition for Systemic Exertion Intolerance Disease (SEID).

It is a one hour, live call in show, so you can call in with your questions or comments during the broadcast. Here is how to call on point:http://onpoint.wbur.org/contact-on-point

You can listen to the live broadcast online here:http://www.wbur.org/listen/live

Or find the broadcast time on your local station here (some times are live, some are re-broadcasts): http://www.wbur.org/syndication

And here is how you can listen online after the show:http://www.npr.org/podcas…/510053/on-point-with-tom-ashbrook

 

[OverTheHills]

Good luck with it, I am looking forward to listening later (not sure what time this is NZ time)
OTH

 

[SpecialK82]

Wow, thanks for reposting, will be interesting to hear from Dr. Daniel Neides of the Cleveland Clinic. What will be his take??

 

[Sasha]

Bump!

This is on in a few hours. I hope to listen to the recording.

 

[Nielk]

I had started a thread in this already.

 

[Sasha]

I had started a thread in this already.

Sorry, Nielk - we must have crossed - I put this up on Saturday. Can you provide a link, if you'd like discussion to carry on on your thread?

 

[Nielk]

Sorry, Nielk - we must have crossed - I put this up on Saturday. Can you provide a link, if you'd like discussion to carry on on your thread?

I didn't realize this was up on Saturday. The other thread is here http://forums.phoenixrising.me/inde...-monday-feb-16-10am-re-iom-me-cfs-seid.35596/

 

[Valentijn]

If my math is right (ha) this starts in 10 minutes. Or some other time completely

 

[Nielk]

If my math is right (ha) this starts in 10 minutes. Or some other time completely

Yes. should be in three minutes.

 

[Valentijn]

Very good intro by the substitute host - making a clear distinction "fatigue" and CFS. Also a brief audio clip from a soccer player hit with it. Sounds like a real patient, not a fatigue patient.

Dr Ellen Wright Clayton is doing a very good job explaining the symptoms and research.

 

[Valentijn]

Jennifer Brea is up now. They're also asking patients to call in.

 

[Valentijn]

Brea is pointing out some of the concerns regarding the process in general, and implementation, but thinks there's a lot of potential.

 

[GracieJ]

The live link isn't working for me. Will tune in later.

Edit. Hm. Works fine off the FB site but not from here.

 

[Valentijn]

"Just by standing I was running at full throttle" - Brea describing the effect of her heart beat rising to 140 just by standing up. She's talking about her early symptoms and diagnosis - conversion disorder at first

Now she's describing pacing. And that anti-virals have been very helpful for her, and mold-avoidance, and chemical-avoidance. Only a few dozen specialists in the country. Most of what she's learned that is helpful has come from other patients online.

 

[Valentijn]

http://audio.wbur.org/stream/live_mp3.m3u should do it

 

[Valentijn]

Karen from Salem. Sick since January 2007. Sudden onset, initially diagnosed as a virus affecting her body and brain. Bedridden for months, couldn't work. Then diagnosed with CFS, and still doing "terribly". She's also explaining that people hear CFS patients on the media on their good days, and they don't understand the impact that it has afterward, and the preparation required.

 

[ukxmrv]

Yoga!!! (Cleveland Clinic?)

"We are talking beyond Chronic Fatigue, we have patients with MS who can now move"

 

[Nielk]

Great. Promotion of CBT and GET!!! Will we ever get away from that?

 

[Valentijn]

Now Dr Enlander and Dr Neides. Jennifer Brea is still on as well.

Enlander: Congratulating the IOM for positively bringing attention of the disease to the medical world, and as a biological disease not as a psychosomatic disease. "This disease is a massive, catastrophic problem." People's lives come to an abrupt halt.

Neides: Interest developed due to a family member having ME/CFS. Patients are incredibly frustrated and doctor-shop to find an understanding doctor who wants to help them improve their quality of life. His Wellness Institute is taking a holistic approach - enhancing immune system to function: proper nutrition, movement/exercise, and stress-management.

Host is asking about the exercise component - isn't that difficult?

Brea: Exercise is getting up and walking to the kitchen currently. She performs at 20% of normal on CPET: deconditioned patients are at 85%.

Neides: Talking about "chair yoga" offered at his clinic. Simple exercises just to get the patient moving. Working within the patients' current limitations. "It's baby steps." But basically describing GET.