2019 Ann W. Caldwell Lecture on ME at MGH Institute of Health Professions

Learn About the Millions Missing from ME/CFS – Sundance Award-Winning Film Screening and Panel Discussion
January 15, 2019 5:30 PM - 7:00 PM

Boston

https://www.massbio.org/events/lear...ning-film-screening-and-panel-discussion-3244

eta: same event
https://bouve.northeastern.edu/even...-compassionate-care-for-a-person-with-me-cfs/
eta2: same event
https://www.massmecfs.org/images/MGH-IHP_INVITATION.pdf

 

I believe Rivka has been organizing this. She's an absolute powerhouse.

Ron Thompkins was at the last Stanford symposium. It should be interesting to hear what he has to say.

If you live in the Boston area, please encourage clinicians in your area to attend.

 

Yes, @JaimeS, Rivka is great at this, and so much more! We have many talented wonderful people moving knowledge and awareness along.

 

Merged thread

Boston, MA — On Tuesday, January 15, the MGH Institute of Health
Professions hosts an event for over 600 healthcare professionals,
researchers and graduate students, and the public, to learn about the
highly disabling disease ME/CFS (Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome). The program will be held at 342 Huntington Ave,
Boston, MA, in Northeastern University’s Blackman Auditorium, at
5:30-7 pm (doors open 5 pm). Pre-registration not required.

https://hhv6.blogspot.com/2019/01/the-mgh-health-professionals-at-chronic.html

 

https://www.mghihp.edu/ann-w-caldwell-presidents-lecture-interprofessional-rounds

 

Credit where it's due: quite a bit of this is Rivka's work.

[Edit: LOL threads were merged, so now it seems as though I am reminding the community:

RIVKA.

And BTW, all the Massachusetts team -- it takes a village for a project on this scale. Well done, everyone!]

 

It seems there might be a video of lecture to come (it's not up yet):
link for when it is
https://www.mghihp.edu/ann-w-caldwell-presidents-lecture-interprofessional-rounds-prior-years

 

Merged Thread

'Students Hear of Little-Known Illness'

https://www.mghihp.edu/students-hear-little-known-illness

 

https://twitter.com/user/status/1089550267467661318

 

There was IMO an unfortunate thank you from a Lisa Nagy MD who thinks we'll all recover (treatments are available) given the tools to do so. She must think that all PwME have a very mild version of it. Which means she doesn't really know very much at all. Dangerous.

 

It's not really a thank you, it's an advertisement for her business. It even includes her website. Pretty shady if you ask me.

 

For those who missed the link the slides are pretty good.

I liked the warning against CBT/GET (printed in red, no less) on this slide:

 

I didn't notice that somehow. I don't think Rivka S is on S4ME. Does anyone know how to contact her? I think if advertising for something like that is the purpose it should be removed.

Although in the scheme of things I recognise it's not a huge issue.

 

Ann W. Caldwell President's Lecture: Invisible Disability: Providing Compassionate Care for a Person with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)

video here:
https://hosting2.desire2learncapture.com/mgh/1/Watch/7763.aspx

slides here:
https://hosting2.desire2learncaptur...achments/Archive/7763/Presentation_Slides.pdf

(I managed to download the video but have not watched it yet)

 

Have just watched this; for anyone interested the Q&A session starts around 30mins in.
Also occurred to me that it might be worth someone making a note of the questions asked at these (and other) sessions with medical professionals to add to any guidance for healthcare professionals produced.

@JaimeS

 

That's a good idea... my plate is really full but I will pass this idea on.

 

I did -- apparently it's already in the works, though with the bulk of Q&A it may take awhile to transcribe!