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The livestream difficulties are ridiculous and are making it tough to follow things. For a patient population plagued with cognitive issues it is additionally exhausting to try to piece things together with all of these gaps in the streaming. I hope that in addition to posting the videos...

Especially since they said the space was oversubscribed. I wonder how many people were at the young/new investigator meeting yesterday and what will come of that....

Sorry OMF. It's not just mobiles. Livestream isn't working on my computer.

It reminds me of the effects of ME ..... start up, work a little bit, then dead stop. [ETA - and during the dead stop (no livestream), it's like a blackout (PEM - patient not visible to the world) .]

It's difficult (and disheartening) for those new to the scene to understand how much of what goes on in agencies like CDC and NIH are repeats of what's been going on for countless years. NIH needs to innovate when it comes to ME. We don't fit neatly (or messily) into their categories and their...

Has NIH explained why this teleconference is being held 4 days after their conference on accelerating ME research? What is NIH going to convey during the teleconference (the conference the previous week will have updates on the clinical study)? Clinicians and researchers who viewed/took part in...

I think ensuring points are covered is very important. I also think there is value in NIH hearing the important points in several submissions as it shows support for those points among the community. Possible point to consider - not dwelling on warnings. Readers may end up looking into why the...

Bump Join us tomorrow, Saturday 16 March at 4pm EST. Call info and registration: https://my.meaction.net/events/me-caregiver-support-call-march Phone Dial-in +1.408.740.7256 (US (San Jose)) +1.888.240.2560 (US Toll Free) +1.408.317.9253 (US (Primary, San Jose)) (Global Numbers) Meeting ID...

ME Caregiver Support Call Announcement Sorry we didn’t get a call in February. Caregiving responsibilities (including self-care) took precedence. Please join us for our next call on Saturday 16 March at 4pm EST. What are the top 2 or 3 things you would suggest to a caregiver? (Reminder - we...

Meeting Agenda 3:00pm Welcome and SEC Call Overview 3:05pm Updates from CDC – Elizabeth Unger, PhD, MD Branch Chief, Chronic Viral Diseases Branch Centers for Disease Control and Prevention 3:15pm “Orthostatic Intolerance: Research and Clinical Insights”...

@Webdog- NICE work! Thank you very much!

For ME Caregivers only Our next call is this Saturday 26 January 2019 at 4pm ET Our calls usually have a topic though we also have time to discuss additional things that crop up. Our January (2019) topic is recurring grief, chronic sorrow as they relate to caregivers of people with ME...

Is there a website for IAFME? Is this group different from IACFSME?

Crucial word "IF" That said - I emailed to ask if caregivers can participate on behalf of patients who are too severely ill to take part by phone. The response was that the focus group is limited to patients. However the contractor asked to speak with me separately about the situation of the...

Full text now available (pdf has tables, figures etc): Estimating Prevalence, Demographics, and Costs of ME/CFS Using Large Scale Medical Claims Data and Machine Learning (Valdez et al.) https://www.frontiersin.org/articles/10.3389/fped.2018.00412/full.

Another article (from today) about Watson and his views: https://www.statnews.com/2019/01/03/where-james-watsons-racial-attitudes-came-from/?utm_source=STAT+Newsletters&utm_campaign=7a5df9cf0c-MR_COPY_08&utm_medium=email&utm_term=0_8cab1d7961-7a5df9cf0c-130622217 On a related note - I am...

New documentary explores the 'complexities and contradictions' of James Watson PBS is premiering a new documentary tonight [2 Jan 2019] about James Watson, the scientist who won the Nobel Prize in 1962 for his role in the research that revealed the structure of DNA. Watson went on to serve as...

It also seems that in order to get accurate prevalence figures, the uninsured have to be taken into account (which the study cannot do). That's in addition to dx'ing via specific criteria that have required (intensity/frequency/duration of) symptoms..... (Sigh. We have huge knowledge gaps, too...

(I am quite fuzzy-headed at the moment and hope this is somewhat understandable) I agree that if these numbers rely on GP diagnoses, it is likely that they are inaccurate because of the poor level of knowledge of most GPs. Could it also be that the very high estimated prevalence is because they...

ME Caregiver Support Call Saturday 27 October 2018 TIME: 4pm (ET) Call registration link: https://my.meaction.net/events/me-caregiver-support-call-october ME Caregiver Support Call (October) We invite caregivers (spouses, parents, siblings, partners, etc) of people with ME to join us...