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From my very sparse notes - in Sept, the Trans-NIH ME/cfs Working Group reviewed the report and categorized the recommendations (things in progress, short-term, long-term). Some "in progress" items include: encourage research topics, general outreach (though the way they talked about that...

There was no update on the NIH clinical study. (The stated purpose of this call was to give an overview of the NANDS report on ME.) The call in August gave a brief update on the intramural study...

If memory serves me (and sometimes it does not) I believe IACFSME has been very quiet for the past couple of years to members and non-members alike. I don't think there have been any newsletters/President's Letters during that time.

@B_V Thank you very much for clarifying. Comorbidities and ME. An all too familiar "tune." (Kind of like an earworm.) I am glad you've been able to find healthcare professionals who are willing to look at more than ME. I hope you continue to get answers.

@B_V I am sorry you are again in the wretched amorphous place where diagnosis is unclear. If I recall correctly, it took some doing but @b-V was eventually included in the first round of the NIH clinical study. He also took part in round 2 of the study. In order to do so the adjudicators had...

I haven't read the article but from the abstract here talks about time to stand as being a possible measure of fatigue ---- but in people with OI, couldn't time to stand be a compensatory measure to avoid triggering OI symptoms? And OI isn't necessarily fatigue. So would this really be a way to...

I am puzzled that the disease is referred to as "C.F.S" and chronic-fatigue syndrome throughout the article....

@FMMM1 Yes you can view this. https://videocast.nih.gov/summary.asp?Live=33390&bhcp=1 - webcast link for the entire day. (I don't know exactly where the ME report begins in the webcast but am guessing it's at least 1/2 way through.) Additional thread on report (and webcast)...

This link is to the caption file (in all caps, accuracy of capture likely to be questionable). There are no breaks in the captions so I can't tell you when the ME report begins.... https://videocast.nih.gov/vodCaptions/ninds090419.txt

An advocate remembered Unger mentioning this webinar as one of CDC's outreach projects.

We understand. Meanwhile I found these links about Pendergrast and I am NOT encouraged. https://www.augusta.edu/faculty/directory/view.php?id=RPENDERG https://www.wjbf.com/news/aiken-augusta-holistic-health-offers-integrative-medicine-approach/ https://store.cdbaby.com/cd/pendergrastmd...

What do people know about the speaker? It'd also be nice to know who is funding this.

Being a very skeptical person I have not followed much about Cortene so I apologize if I am repeating things others have already commented on. I see that there was to be a pre and post trial period and @Barry notes the Cortene website says they think a short course of Cortene may be curative...

Link to agenda https://www.ninds.nih.gov/About-NINDS/Who-We-Are/Advisory-Council/NINDS-Advisory-Council-Agenda-September-4-5-2019 The meeting is actually 2 days long but the 5 September session is closed (not webcast). Relevant session for ME is scheduled to begin at 1:20pm (ET) AGENDA...

Very worrying!!!!

Thanks.

Any word on who will be helping on the pediatric work?

US-focused resource including things like How to Have a Great, Disabled Life Applying for Disability Living on Disability Applying for Affordable Housing Living in Affordable Housing Applying for Home Aides Having Home Aides Financial Survival Homebound/Bedbound https://howtogeton.wordpress.com/

August ME Caregiver Support Call SATURDAY AUGUST 24, 2019 @ 03:00 PM - 05:00 PM EDT We invite caregivers of every sort (parent, friend, partner, sibling, child, etc) to join us to discuss some of the issues specific to caring for loved ones with ME. Our next ME Caregiver Support...

More about Amy Mooney and her daughter (PwME) https://www.s4me.info/threads/on-the-air-two-podcasts-on-me-with-amy-mooney.4442/#post-191339