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

Sly Saint

Sly Saint

Senior Member (Voting Rights)
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
Overview
Partners HealthCare's graduate school MGH Institute of Health Professions is hosting an event on January 15, 2019.

Come learn about the "millions missing," those living with the debilitating disease Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), which disables 1-2.5 million Americans.

MGH Institute of Health Professions invites you to the 2019 Ann W. Caldwell President’s Lecture: Interprofessional Rounds on Tuesday, January 15, from 5:30–7:00 p.m. (doors open at 5:00 p.m.) at Northeastern University, Blackman Auditorium, 342 Huntington Ave (Ell Hall), Boston. This event is free and open to the public, no registration is required. This year’s topic is “Invisible Disability: Providing Compassionate Care for a Person with ME/CFS,” with program moderator Ronald G. Tompkins, MD, ScD, Director of MGH Center for Surgery, Innovation, and Bioengineering. Join us for an excerpt of the Sundance award-winning film UNREST, chronicling the hidden lives of patients, followed by a discussion with an MGH researcher, a health care provider, and patient advocates. This program will inspire you to bring a new awareness about ME/CFS back to your clinical practice.
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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
 
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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.
 
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
 
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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!]
 
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Merged Thread

'Students Hear of Little-Known Illness'

Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome, is topic at 2019 Caldwell Interprofessional Rounds.
Robie Robitaille and Rivka Solomon certainly looked healthy enough, sitting up on the stage for the MGH Institute’s annual Ann W. Caldwell President’s Lecture: Interprofessional Rounds. But what the school’s several hundred students would hear about their invisibility disability told a different story.

The two women have Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome, a disease characterized by extreme exhaustion, sleep abnormalities, pain, and other symptoms that are worsened by physical activity but doesn’t improve with rest. They spend their days, weeks, months, and years primarily homebound and bedridden, sometimes unable to muster the energy to do something as simple as moving into a nearby chair. The disease can be mild, moderate or severe. Some severe patients lose the ability to talk or eat and thus require a feeding tube. Even the smallest of noises or bright light can send them into a long-term crash that can last for weeks. It’s a condition that can rob them of their jobs, social life, and joy.
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https://www.mghihp.edu/students-hear-little-known-illness
 
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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.
 
ahimsa said:
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.
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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.
 
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
 
Sly Saint said:
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
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That's a good idea... my plate is really full but I will pass this idea on.
 
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