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

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.

https://www.independent.com/events/movie-screening-movie-about-m-e-long-covid-event/

 

The film sounds like it could be interesting.

But, I don't like the idea of lumping all the conditions into one name. We need to know a lot more about each of them before we consider anything like that.

 

me too I dont want to be lumped together, we already got enough trouble being lumped into FND/MUS CF etc, i dont think helping them with that process will be good for us

 

Yes.

 

Working together seems like a good way to achieve more political power, which we desperately need.

But having one name for all of these conditions sounds like a recipe for disaster.

 

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:

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!

https://www.youtube.com/watch?v=1Q0ZLxYbZdE

 

Oh - I was hoping for this:

Spoiler

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.



https://twitter.com/user/status/1686407179060789248



YouTube:

https://www.youtube.com/watch?v=j9UYPBa4ba0

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.]

 

Note: this YouTube is 46.27mins long and I have not had the time yet, today, to watch it.

 

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.

 

It’s a waste of energy from the people who gave us, CFIDS Association of America aka Solve CFS aka Solve ME/CFS.

 

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.”

 

Can't find a summary of this initiative on the SOLVE M.E. site or on their Facebook - only the long YouTube.

 

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.).”

 

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.

 

"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?

 

"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.