Archive for November, 2014

Videos from Stockholm seminar on ME(cfs) in young people

The videos are mostly in English

Regrettably the one with Nathalie (young person with ME(cfs)) and Camilla Gillberg is in Swedish.

 

http://rme.nu/seminarium-2014
http://translate.google.com/translate?hl=en&sl=sv&u=http://rme.nu/seminarium-2014

Goggle translate:

Seminar on children and young people with ME/CFS – 2014

On November 12, 2014 organized the National Association for ME patients a seminar on children and young people with ME/CFS. The
seminar was conducted in cooperation with RME Stockholm and RME Scania and held at County Hall in Stockholm. They filmed lectures accessed through the links below.

(Second speaker – Stig Nyman – in Swedish) Introduction- http://youtu.be/mMssaa7i5y0 Henrik Fransson, chairman RME Stockholm, Stig Nyman, councilor

Orthostatic intolerance and ME/CFS in children- http://youtu.be/7OMEGjBWQdo Peter C. Rowe, Johns Hopkins Children’s Center, United States

ME/CFS in children – Diagnosis and Treatment- http://youtu.be/kl5EfvzsL88 Nigel Speight, The University Hospital of North Durham, UK. Dr. Speight also discussed the “assault” as health professionals and other agencies expose children to because of feldiagnosticering in cases of ME/CFS.

The immunological / viral / endocrine interactions in ME/CFS- http://youtu.be/VUDhI0gXbbE Dr. Amolak S. Bansal, Department of Immunology, St Helier Hospital, UK.

(In Swedish) Living with ME/CFS as a child- http://youtu.be/tAjEryHR4L4 Nathalie Gillberg 14 years and suffering, and Camilla Gillberg, parent says.

Panel Discussion- http://youtu.be/-60Bzf35OLY

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Dec 2014 CFSAC registration is now open – correction

For those who are interested

Agenda:

https://www.blsmeetings.net/cfsac/documents/agenda.pdf

To registration:

https://www.blsmeetings.net/cfsac/

NOTE – Public comment is limited to 3 minutes. To be included in the public record written comment must be submitted by Monday 26 24 Nov 5pm ET.

Confusion at NIH

Quote from “P2P and Dr. Francis Collins”

“Ok, let’s pause for a minute. NIH is co-sponsoring the IOM study under their contract with the National Academy. The IOM contract had been controversial for months, and Dr. Maier was scheduled to speak at the IOM meeting in just three weeks. Yet the Deputy Director of NIH had no idea what is going on with it, Dr. Collins needed an explanation of the difference between IOM and P2P, and now Dr. Murray had to scramble to figure out if there was a third meeting he was not aware of. “

Would a trail of breadcrumbs help them?

The full post is well worth reading:

http://www.occupycfs.com/2014/11/10/p2p-and-dr-francis-collins/

P2P draft agenda is now available

Good grief!

Does P2P actually stand for “Purpose: to Prevent” meaningful research?

Given important portions of the draft agenda (and those presenting those portions), one might not be mistaken for thinking so….

For instance,

The second main topic of the Workshop is titled: “Given the unique challenges of ME/CFS, how can we foster innovative research to enhance the development of treatments for patients?”

The three speakers for this section are Dr. Dedra Buchwald, Dr. Dan Clauw, and Dr. Niloofar Afari. If anyone thought that psychosocial theories and functional somatic syndromes would not make an appearance at the Workshop, I’m afraid I must correct your false workshop belief. “

read the full post at OccupyCFS (here: http://www.occupycfs.com/2014/10/31/p2p-agenda-what-the-huh/ )

link for draft agenda:

https://prevention.nih.gov/programs-events/pathways-to-prevention/upcoming-workshops/me-cfs/agenda