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(Sorry for the short notice!) MEAction Caregiver Support Call - May We invite caregivers of people with ME (spouses, parents, siblings, partners, etc) to join us for the next meeting to connect with, and support other caregivers. During this call we’d like to discuss how we can cultivate...

@Webdog - I suppose it's partly a question of one's definition of recovery.... The only 3 references listed in her slides were the pediatric primer, Nijhof et al - http://pediatrics.aappublications.org/content/early/2011/04/18/peds.2010-1147, and Crawley on school absence. But she...

What is the definition of recovery?

If you are on the CDC email list but did not receive the notice pasted above, I think it'd be good to let CDC know that. MECFSSEC@cdc.gov (use this same email to ask to submit questions for this call and/or to be added to their email list)

Hi, I don't think I have seen this posted elsewhere but please remove (or let me know how to do so) if appropriate: May 10, 2018 3:00 pm - 4:00 pm Eastern Time CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call participants can either call in using the following...

MEAction Caregiver Support Call (21 April 2018) We invite caregivers (spouses, parents, siblings, partners, etc) of people with ME to join us for the next meeting to connect with, share with and support other caregivers. On this call we will be discussing the recurring sense of loss that comes...

Thanks @Skycloud ! @Kafka - please DM me.

I think Fukuda needs to go ASAP because it doesn't require PEM. For me, an ME definition has to require PEM and in the definition, PEM must be very clearly characterized.

Tobe clear - this is a notice that will go live sometime (soon?). But it'd be good for people to be preparing to apply.

#MEAction Caregiver Support Call ME Caregivers Connect! We invite caregivers (spouses, parents, siblings, partners, etc) of people with ME to join us for the first in a series of calls to connect with, share with and support other caregivers. We - Jane, Bobbi and Denise, the call organizers -...

@Trish - it's worth keeping in mind that this study used Fukuda and if I am not mistaken went further and used the Reeves criteria, so it is entirely possible that many of those included in this study had nothing like ME......

In looking at changes in cerebral spinal fluid, Baraniuk found "The changes in brain chemistry — observed in levels of miRNAs that turn protein production on or off — were seen 24 hours after riding a stationary bike for 25 minutes. “We clearly see three different patterns in the brain’s...

@Billt -is it something like what's described here?

So the problem stems from not sleeping enough when younger??? R i i i i i ght.

So "Recovery Network" is limited to people who have had CBT/LP/similar. How do they assess what patients had before the "treatment"? What is considered recovery? The hype about so many patients being highly gifted, sensitive, motivated, Type A, etc. doesn't take into account that it is very...

To clarify- the PR thread was about the 2016 IACFSME poster http://iacfsme.org/ME-CFS-Primer-Education/News/IACFSME-2016-Program.aspx page 121 (broken up to make it easier to read - I hope) Cervical spine stenosis as a cause of severe ME/CFS and orthostatic intolerance symptoms Peter C. Rowe...

Male-specific IL-33 expression regulates sex-dimorphic EAE susceptibility Abigail E. Russi, Mark E. Ebel, Yuchen Yang and Melissa A. Brown PNAS 2018; published ahead of print January 29, 2018, https://doi.org/10.1073/pnas.1710401115 Add to Cart ($10) Edited by David Artis, Weill Cornell...

This uses Fukuda and the "Chaldea [sic] fatigue scale" as well as the SF-36 for physical function.The reference for the depression scale is an article referenced from 1965 entitled "A self-eating depression scale". (Say what???) Self-report by the students with the help of trained...

@Leonard Jason - question #27 asks about precipitants of abnormal response including positional changes. In parentheses it says "...from the standing to lying down)". I am guessing "the" should be removed here but also wonder if the wording was intended to be about going from lying down to...

@Mij - generally what I have noticed about the immediate onset is the pwME being immediately rendered monosyllabic (or only able to grunt) and limp as a rag. Autonomic dysfunction is a constant - with or without PEM but it is worse during PEM (immediate or delayed).