USA: “Movie About M.E." and "Banner for Awareness" (formerly "One Name Campaign")

Sly Saint

Sly Saint

Senior Member (Voting Rights)
Date & Time : Fri, Jun 16 5:00 PM - 7:00 PM

**Events may have been canceled or postponed. Please contact the venue to confirm the event.

Join us at the launch event for ‘Movie About M.E.’, a documentary film that follows the One Name Campaign to create one unifying name for related illnesses- Long COVID, Chronic Fatigue Syndrome, Fibromyalgia, Myalgic Encephalomyelitis, Chronic EBV, Chronic Lyme and more.

Expert speakers from Solve M.E., Atlas Health and Stanford University to discuss the connection between these chronic illnesses and what we already know from past research and history.

An open community forum moderated by Michael Bowker, Santa Barbara based author, the conversation will delve into strategies to advocate for greater public awareness, clinician education and research funding.
Click to expand...

https://www.independent.com/events/movie-screening-movie-about-m-e-long-covid-event/
 
I think it depends what lumping is for. For research I think they should be seen as separate groups, though some intergroup comparisons of biological findings might be helpful.

I think lumping could be useful for things like advocacy for research funding and for access to medical care and disability payments. Also for sharing information about management of key symptoms such as PEM when they occur in more than one condition.

I agree they shouldn't be lumped under one name unless and until biomedical proof that they are variations of the same disease. We already have enough problem with the psychosomatic cheerleaders lumping us under MUS, FND, SSD etc.
 
Trish said:
I think it depends what lumping is for. For research I think they should be seen as separate groups, though some intergroup comparisons of biological findings might be helpful.

I think lumping could be useful for things like advocacy for research funding and for access to medical care and disability payments. Also for sharing information about management of key symptoms such as PEM when they occur in more than one condition.

I agree they shouldn't be lumped under one name unless and until biomedical proof that they are variations of the same disease. We already have enough problem with the psychosomatic cheerleaders lumping us under MUS, FND, SSD etc.
Click to expand...

Yes.
 
I went to the movie website to learn more. It's a little wonky in places.

I had trouble viewing the "about MOVIE" page:
https://www.movieaboutme.com/about-movie

I tried two different browsers. In both cases the text and image were shifted left, but no scrollbar, no way to see it.

So in case anyone has the same problem, here's the text from that page:
This satyrical documentary follows the adventure of a lifetime as it becomes an epic movement. Chesley, the film's director, sets out on a cross-country journey to REBRAND, not a corporation or product, but a disease! Thousands of people across the country join forces to change The Disease of a Thousand Names (leading name Myalgic Encephalomyelitis or M.E.) into a disease with one name.
Click to expand...

Also, there seems to be a typo, should be "satirical documentary" not "satyrical documentary."
 
Found this video (I have not watched it) posted on OMF's youtube channel.

"Movie about ME" - Director Chesley Heymsfield shares her story!

 
ahimsa said:
Also, there seems to be a typo, should be "satirical documentary" not "satyrical documentary."
Click to expand...

Oh - I was hoping for this:
u-g-OAO5W0.jpg

The Two Satyrs' Giclee Print - Peter Paul Rubens |
 
Merged thread

So what do we think of this initiative that is supported by SOLVE M.E.?

Other considerations aside, you can call these diseases/disorders whatever you like, but if your term does not have an ICD-10-CM code, your provider ain't going to be able to bill for it.






YouTube:

The One Name Campaign official launch event in Santa Barbara, California featuring guest speakers: Michael Bowker (Journalist & Author), Chesley Heymsfield (Campaign & Documentary Director), Das Williams (Santa Barbara County Supervisor), Mouhanad Hammami, MD, MHSA (Public Health Director, Santa Barbara County), Dr. Joseph P. Smith (Atlas Health) and Oved Amitay (CEO, Solve ME)

[Note: Comments are turned off for this video]

[Edited to correct misassumption that this is SOLVE M.E. initiative.]
 
Last edited:
I understand why they want to do this, but even if it attracted support from heavyweight governmental organisations, it would take years to implement internationally. In the meantime we could well discover more about what causes these illnesses, which would probably mean starting the process over again. Given that a lot more money is being put into research as the result of the pandemic, it feels like the wrong time.

Let's campaign instead for the taxpayer's dollar to go only into biomedical research, and not into BPS hoodoo.
 
https://www.montecitojournal.net/20...rt-of-the-making-of-the-one-name-documentary/

Santa Barbara Is Invited to Be Part of the Making of the ‘One Name’ Documentary
BY MONTECITO JOURNAL | JUNE 20, 2023

...Amitay is a powerful patient advocate and is firmly behind the move to rename some of the confusing names given to autoimmune diseases. “Rebranding these diseases so people and doctors can understand them better will be helpful and provide hope,” he said. “It’s going to be a terrific discussion.”
 
Quite worrisome nonsense spouted by the panelists especially Dr. Joseph Smith who wants to name the disease “P-60” and “really likes” neural retraining programs.

And on the movie website it really overstates the number of people who will end up with ME..
“Scientists estimate that 1 out of 3 people who were infected with COVID-19 will go on to develop post-viral symptoms consistent with Myalgic Encephalomyelitis (M.E.).”
 
Braganca said:
Quite worrisome nonsense spouted by the panelists especially Dr. Joseph Smith who wants to name the disease “P-60” and “really likes” neural retraining programs.
Click to expand...

That's going to work marvellously well in a country where the annual statement of earnings and contributions issued to all taxpayers has been known as a P60 since WWII.

Might I suggest P45 instead? For him, I mean.
 
I agree this looks incompetent. I see nothing wrong with using the term infection-associated chronic illness to refer to this group of illnesses. The NASEM has already used it in a professional setting. We do need such a term to refer to these illnesses as a group.

But is the intent to create a name and diagnosis that is intended to replace entities like ME/CFS, long covid, post-treatment lyme disease, etc? That does not seem like a good idea because it implies an underlying assumption that these are all the same.

Also, would the patients with these other illnesses even consent? I have some doubts.
 
Last edited:
"P-60"? A term that will be meaningless to everyone other than Dr Joseph Smith.

There is so much Long Covid centric stuff on SOLVE M.E. website, I don't know why they don't just rebrand themselves as "SOLVE Long Covid".

I wonder what the Long Covid advocacy groups think of this initiative?
 
Last edited:
"infection-associated chronic illness to refer to this group of illnesses".

But not everyone with a historical diagnosis of ME can link the onset of their illness to a virus. Some consider their illness was triggered by a vaccination (often those required by nurses and other hospital staff) or following chemical insult, sheep dip, for example, or crop spraying in fields adjacent to their homes.
 
You must log in or register to reply here.
Back
Top Bottom