P2P workshop Dec. 9 & 10, 2014

[Nielk]

study of twins sleep. One CFS and other healthy. Results of sleep test was the se but perception of CFS twin was worse.

 

[Valentijn]

Can't do the same things you could before you were ill, now that a psychobabbler has declared you are recovered? It's all down to aging!

 

[Nielk]

Can't do the same things you could before you were ill, now that a psychobabbler has declared you are recovered? It's all down to aging!

Yes. It is normal for a fifty year old to be mostly bed bound compared to a fourth year old.

 

[Nielk]

Keep in mind that this is for the listening ears of the workshop members- the jury model of all non-experts who ahave been chosen to write the final report.

 

[Nielk]

She seems to love twin studies. Perfect control of childhood exposures and genetics.

One twin is sick and the other healthy. Comparing one twin to co-twin.

In Fibromyalgia pain sensors in brain light up compared to healthy.

 

[Valentijn]

She seems to love twin studies. Perfect control of childhood exposures and genetics.

She loves them because she's the author of the ones she was talking about

 

[Nielk]

MAPP - all types of pelvic pain syndromes. Identify subsets of people

She loves them because she's the author of the ones she was talking about

what did her speech have to do with ME?

 

[Nielk]

Claw talking about pelvic pain syndromes.

What does this have to do with ME?

 

[Nielk]

They cast a BROAD net for criteria for these pelvic pain syndromes.

 

[Nielk]

Scientists were very broad. 20 different backgrounds.

They had 20 to 25 publications from study they did from MAPP study.

Longer term patients did not have more severe symptoms they found.

Patients with pelvic pain and beyond seem to encompass CFS?

 

[Nielk]

They couldn't find anyone to speak about MECFS studies?

 

[Nielk]

Buchwald talked about fatigue and Claw about pain.

 

[Wally]

According to Dr. Buckwald - "CFS is a trait". So glad that she was able to provide such expertise.

Definition of a trait - http://www.thefreedictionary.com/trait
"trait (tr

t)
n.
1. A distinguishing feature, as of a person's character. See Synonyms at quality.
2. A genetically determined characteristic or condition: a recessive trait.
3.
a. A stroke with or as if with a pencil.
b. A slight degree or amount, as of a quality; a touch or trace: a sermon with a trait of humor."

 

[Wally]

Anyone else bumped off the internet connection to the meeting? My connection began buffering right after Buchwald finished talking and I can't get back in. Perhaps it is payback for the things I uttered to my computer screen while Dr. Buchwald was speaking.

 

[Hope123]

Yes. It is normal for a fifty year old to be mostly bed bound compared to a fourth year old.

Yes, I was concerned about that comment as well. 30-40 year olds with ME/CFS should not be compared to 70-80 yr. olds and we have seen that vis-a-vis studies comparing the SF-36 score of younger patients with scores that included 60-80+ year olds.

At the same time, symptoms of the elderly have often been dismissed as "aging" when in fact they have genuine medical cause(s) for their symptoms. It's an age-related prejudice.

You can submit any questions/ comments you have LIVE online:

http://www.videocast.nih.gov/ContactUs/?LiveID=14723

Don't just vent here, make sure the right parties hear your concerns.

 

[Nielk]

Keep in mind that the panel of five of this workshop will be responsible for the final results. None of them have any knowledge of MECFS.

 

[Nielk]

Afari - no biomarkers for mecfs. Most of what we know if from CDC Fukuda.

There are overlapping clinical conditions with CFS.

Large list of ten comorbid conditions.

Fibromyalgia, INS,interstitial cystitis, migraine and tension headaches...

 

[Nielk]

We don't understand and can't diagnose mecfs?

 

[Nielk]

Focusing on comorbidity can help with understanding with diseases.

This comes from Helena Kraemer's works.

 

[Nielk]

Epidemiological comorbidity.

A treatment for one can work for the other
The two conditions share risk factors.