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This is also useful: (I believe it has it's own thread also) Medically Documenting Disability in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Cases Barbara B. Comerford1* and Richard Podell2 https://www.frontiersin.org/articles/10.3389/fped.2019.00231/full

The rest of the site also has additional info for US based folks on housing, medicaid, travel (for those who can), long-term disability, etc https://howtogeton.wordpress.com/

@Tom Kindlon Thanks. Staff at MEAction would be the ones who generate an infographic and my understanding is they are kind of swamped at the moment. Hopefully infographics can be produced for future calls.

@Tom Kindlon - I am not sure what you mean by infographic for the meeting.... (And I always appreciate your reposting, sharing news/events, etc. :) )

Reminder ME Caregivers Support Group - June 22nd Our next call is this Saturday, 22 June 2019 at 4:00 PM EDT https://bluejeans.com/308337288 Want to dial in from a phone? Dial one of the following numbers: +1.408.740.7256 (US (San Jose)) +1.408.317.9253 (US (Primary, San Jose)) (see all...

Francis Collins will no longer take part in all male panels June 12, 2019 Time to End the Manel Tradition The National Institutes of Health is committed to changing the culture and climate of biomedical research to create an inclusive and diverse workforce. The recent report by the National...

I put "therapies" in quotes because some of the discussion in this article is about stem cells being used in unproven ways. Interesting details in the article about how easy it is to post things on ClinicalTrials.gov and problems that can ensue as a result. Stem cell clinics co-opt...

The war to free science How librarians, pirates, and funders are liberating the world’s academic research from paywalls. By Brian Resnick and Julia Belluz Updated Jun 10, 2019, 9:18am EDT ...

It's not an either or situation (either education of healthcare professionals or de-stigmatization). We need both. If it were only the healthcare profession became appropriately educated, that wouldn't wipe out the negative views the public, family members, etc have about us.

Perhaps we just don't understand the gravity of the situation. ;)

Levitate?

It looks as though CDC has recently produced recordings and some transcripts of recent SEC calls. If this call was recorded, this is where you are most likely to find it. https://www.cdc.gov/me-cfs/programs/meetings.html

@Andy said "NIH have launched an Early Career Investigators Network website, see https://mecfseci.rti.org/" Just wanted to note that this site is hosted by the company doing the data management center funded by the RFAs.

I wonder if identities were confidential in order to prevent harassment, etc. For instance, before, during and after testifying at confirmation hearings for (US) Supreme Court Justice Kavanaugh, Dr. Blasey Ford was subjected to intense harassment, had to hire security, she and family had to...

I believe BHC is part of the CDC multi-site study.

Rowe, who tests for it and other reflexes at each appointment was also in favor of Hoffman testing being part of the Baseline. ETA I think his experience with this and(and paper on) patients with cervical spine stenosis may be worth taking into account.

To clarify - I am not saying that the Hoffman test is diagnostic --- but a positive Hoffman could be an indication that further neurological testing should be done - beginning with looking at briskness of reflexes and proceeding from there.

@Jonathan Edwards above mentions symptoms (brisk reflexes, positive Hoffman's etc) that would lead (hopefully) to further testing for patients. During the development of the NIH Common Data Elements for ME/CFS (CDEs) I pressed hard for Hoffman reflex testing to be included in Baseline testing...

Thanks for making me aware. I appreciate it.

(I am not being flippant) - that'd be a good question to ask them. ETA - (this is from their listserv email) "Please note that questions for the Guest Speakers and CDC can be submitted only via email at MECFSSEC@cdc.gov. This mailbox cannot respond to inquiries received and is in use only for...