Live webcast IoM meeting Jan. 27th 1:pm starting

[justinreilly]

She said it's hard to get ME science published so consider articles from journals you wouldn't normally consider.

 

[Valentijn]

My sound cut out just when Proskauer started talking about journals. What did she say?

That many of the well-known journals refuse to publish ME/CFS research, so the researchers must use alternative publications. She implored the committee keep in mind that there is quality research in those locations.

 

[justinreilly]

Klimas made a nice comment about children getting taken away from parents for supposed Muchausen's by proxy (factitious disorder by proxy).

 

[Valentijn]

Schweitzer is pushing for a narrower definition. Also mentioned the letter signed by 50 experts opposing the IOM contract.

 

[justinreilly]

Schweitzer is good. emphasizing viruses; anaerobic metabolism shown by CPET; Keller noding her head; emphasizing NO GET. will be bedridden again if Ampligen taken away.

 

[justinreilly]

Letter from 50 experts mentioned, yay!
let's use biomarkers we have, don't go back to the drawing board for symptom definition, don't loose another generation to the disease. Let's study the disease already, it's been 30 years!

 

[Valentijn]

Schweitzer is getting passionate now, regarding the harm from GET. Very powerful ending.

 

[Valentijn]

Next is Jennie Spotila from OccupyCFS

 

[JT1024]

Excellent presentation by Mary.

 

[justinreilly]

Schweitzer: BS is on CDC website including GET

Casey Fero died at 23 from myocarditis because he exercised and got a job like he was told to by the 'experts.' how many other Caseys are out there. Don't go back to the drawing board to do another definition, study the disease already!

Awesome speech, thank you Mary!!

 

[Iquitos]

Yay Mary Schweitzer!!! We need some passion in there! Wake up you idiots in the audience!

 

[justinreilly]

Jennie is looking weak so far; Mary is a hard act to follow!

 

[Valentijn]

Jennie mentioned the need for a sensitive and specific definition. Patients with other treatable diseases are harmed by being thrown in the Fukuda CFS wastebasket, which results in a delay in an accurate diagnosis.

 

[justinreilly]

Jennie finally mentioning something good- PEM crucial symptom; objectively measurable.

 

[Valentijn]

That's the last of the advocacy organizations, and I'm off to sleep!

 

[justinreilly]

Overall Jennie's was weak, I have to say. Sticking together and insisting on expert's demands- adopt CCC would have been infinitely stronger and better for patients. But like she says, she was only going to speak for herself. The only person speaking for herself that gets 7 minutes.

 

[Firestormm]

@jspotila You rocked!

Sorry to hear about the dreadful cold. Hope you get better soon and can share your presentation with us on your website.

 

[alex3619]

Mindy is great.

 

[alex3619]

Jeanette Burmeister!

PS Loved it!

 

[justinreilly]

Yay, Mindy Kitei, talking forcefully about 50 expert letter; Reeves fake definition is 'insanity'; PEM is the hallmark; Unger intentionally not doing 2 day CPET to hide the epidemic. IoM recommends CBT and GET for MECFS; IoM must recuse itself! Excellent!