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

rvallee said:
Hi Chelsey. Sorry this is happening to you. Please know that many of us understand how hard it is to deal with the politics of ME, how things can get out of hand, and that good intentions can lead to weird reactions. Especially with how much harm the good intentions that frame our illness as psychological have done. A lot of this in the LC community is that they don't want to end up like us, but ironically some of them reject any overlap with us and it's especially awkward because they end up pushing for the wrong things.

Hopefully the lesson for Solve is that they consult with the community before they do things. They have accomplished a lot dealing with politics but this was poorly done, especially with the alternative medicine dude and the trauma overlap.

There are good ideas here and that it's not about renaming ME, or LC, but rather an overarching label for those conditions, similar to what autoimmune disease is to MS and Lupus. I think this is necessary, but the idea needed more polishing here and none of that is your fault. It's a really tough context for everyone having a deeply maligned illness.
Click to expand...

Thank you very much. This is one of the most complex issues to talk about - even in our own community/communities. I understand first hand why there is mistrust, anger and frustration. It’s sad for everyone that we have not yet been able to achieve ubiquitous awareness despite noble efforts by many including yourselves.

Any time that would you like to talk, I am available and would love to discuss your ideas on how to polish.

The psycholization of M.E. has hurt me very much and is a large part of my impetus to want to help raise awareness and clinician education. So everyone knows, the doctor completely agrees that these illnesses are ‘real’ biologic and not psychological in nature. There may have been parts of the event that would have made that much more clear.

In the future, I am open to sharing more about my own experiences with disbelief.
 
The "One Name Campaign" web space is now overlaid with a new domain name and a message:


https://www.bannerforawareness.com

Hello.

A warm hello to everyone. I must apologize for any misunderstanding around the purpose of this awareness campaign. There was important information that, by my fault alone, was not clearly conveyed that would likely alter the interpretation of its motivation and intention.

I am also very sorry that all of us are suffering terribly from these illnesses or are caring for loved ones who are. As we know. there is the physical pain, and then there is the pain of not being believed, or compassionately supported.

As a person who has suffered with M.E., MCAS, and POTS for twenty-five years, at times severely, I am highly sensitive to your concerns - especially maintaining autonomy within diagnoses.

For clarity, I am not proposing that M.E., Long COVID, POTS, MCAS, or any other related illnesses be formally renamed or reclassified in any way medically or scientifically or require any new ICD Code or criteria.

Perhaps simply having a category or banner that refers to the greater community (which can be defined) would be easier solely for the purposes of raising awareness?

Just an awareness campaign that can amplify our voices - so that the larger general public will finally see the magnitude of our suffering.

Thank you to those who reached out to me. IF you would like to share more thoughts or if you are interested in helping to shape the vision, I would love to hear from you. I am always happy to jump on a call or zoom. If you can please message me on the website contact form.

All of this is in development, nothing is final - so thank you for your understanding. I am open to all of your comments.

Big hug,


Chesley
 
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Hi Suzy, I have heard very good things about your work. If you would like to talk by phone or zoom, please feel free to message me.

Very much appreciate,
Chesley



Dx Revision Watch said:
The "One Name Campaign" web space is now overlaid with a new domain name and a message:

https://www.bannerforawareness.com

Hello.

A warm hello to everyone. I must apologize for any misunderstanding around the purpose of this awareness campaign. There was important information that, by my fault alone, was not clearly conveyed that would likely alter the interpretation of its motivation and intention.

I am also very sorry that all of us are suffering terribly from these illnesses or are caring for loved ones who are. As we know. there is the physical pain, and then there is the pain of not being believed, or compassionately supported.

As a person who has suffered with M.E., MCAS, and POTS for twenty-five years, at times severely, I am highly sensitive to your concerns - especially maintaining autonomy within diagnoses.

For clarity, I am not proposing that M.E., Long COVID, POTS, MCAS, or any other related illnesses be formally renamed or reclassified in any way medically or scientifically or require any new ICD Code or criteria.

Perhaps simply having a category or banner that refers to the greater community (which can be defined) would be easier solely for the purposes of raising awareness?

Just an awareness campaign that can amplify our voices - so that the larger general public will finally see the magnitude of our suffering.

Thank you to those who reached out to me. IF you would like to share more thoughts or if you are interested in helping to shape the vision, I would love to hear from you. I am always happy to jump on a call or zoom. If you can please message me on the website contact form.

All of this is in development, nothing is final - so thank you for your understanding. I am open to all of your comments.

Big hug,


Chesley
Click to expand...
 
Dx Revision Watch said:
As already mentioned, a Twitter account had been created in April for the One Name Campaign.

That account @onenamecampaign

has also been deleted. The Twitter @movie_about_me account is still extant.
Click to expand...


Another account that was also set up in April 2023 still exists:

Chesley Heymsfield
@TheOneNameOrg


The launch YouTube has a new title and the "more..." text which had listed the participants in the launch presentation has been deleted.


Edited to add: there is a domain name registered for

theonename.org

It was registered on 2023-04-25 but details of the owner of the domain are not available.
 
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There is another website here for the "Iceberg PSA" [A storyboard for an animated Public Service Announcement about Long Covid and ME].

The "PSA" page on the now taken down "One Name Campaign" domain had not been populated with any text.


https://www.doyouhaveme.com/

This domain was registered on 2021-08-19.


FOUNDATIONAL SUPPORT
ICEBERG PSA is made possible by the generous visionary support from our friends.

Logo for the Irene W. and C.B. Pennington Foundation.


https://www.doyouhaveme.com/storyboard

https://www.doyouhaveme.com/sponsor

"sponsor the Iceberg PSA

Your brand - regardless of industry, scope or demographic - will enormously benefit by aligning with us to address the urgent M.E. humanitarian crisis.

By supporting the efforts of this PSA to share life saving information with the public, you are exhibiting a moral core to your company. Together we must amplify this most vital message.

Vast visibility will be required to make this campaign a success. Your brand will be along for the global ride!

We need sponsors like you to be able to share this message with the world. Your support can help to save lives. Join us in this global endeavor.

To discuss further sponsorship tiers, collaboration and opportunity... please contact us here"


Sponsor

Atlas Health​


https://www.doyouhaveme.com/partners

Partners

Open Medicine Foundation
Solve M.E.
#MEAction

and the logos of four "Global" partners.​

----------------------------------


According to Twitter:

Movie About M.E.
@Movie_About_ME

·9h

Hi Lou, that is not at all what Dr. Joe Smith was attempting to convey*. We are working on a longer more detailed response to come. Chesley is happy to speak with anyone over the phone or on Zoom. Please feel free to reach out to her: https://www.bannerforawareness.com

-AG

----------------------------------

It's unclear who the "AG" spokesperson is who is responding on the @Movie_About_ME account.


*From the presentation launch video, Dr Joseph Smith:

Dr Smith had said:

"What if your Long Covid isn't from infectious disease; what if your Long Covid is from living with a narcissistic parent and not having what you needed from your parent and your brain boiled in its skull because of that?"
 
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ch2.png
 
From the presentation launch video, Dr Joseph Smith segment:

Dr Smith had said:

"What if your Long Covid isn't from infectious disease; what if your Long Covid is from living with a narcissistic parent and not having what you needed from your parent and your brain boiled in its skull because of that..."

That appears to have been edited out, since yesterday, along with the reference to wildfire smoke.

Pick up from 29:04mins:



-----------------------------

Edited August 16 to add:

Movie About M.E.
@Movie_About_ME

Those parts were removed from the video because people were finding them triggering. (Even though what they took issue with was not at all what Dr. Joe was trying to convey.) We heard the feedback and we responded to those in our community.

12:09 AM · Aug 16, 2023
 
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Chesley said:
Hi Suzy, I have heard very good things about your work. If you would like to talk by phone or zoom, please feel free to message me.

Very much appreciate,
Chesley
Click to expand...


Thank you Chesley, but no. I think I have said pretty much all I want to say about the One Name Campaign. Whatever direction this project takes going forward, I have too many concerns to be able to support it.

Suzy
 
There is still disturbing lack of clarity about this video, the film and campaign. And in my view the instigator is still not listening to long term advocates.




@Movie_About_ME - "Those parts were removed from the video because people were finding them triggering. (Even though what they took issue with was not at all what Dr. Joe was trying to convey.) We heard the feedback and we responded to those in our community."
 
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Dx Revision Watch said:


Dr Alice
@calirunnerdoc

"The remarks of “Dr. Joe” were opinion-based, bizarre, offensive, & harmful. Not sure I’ve seen anything like it in my entire medical career of attending & participating in conferences discussing lethal and disabling medical conditions."

9:09 PM · Aug 16, 2023
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Weird comment. There is far worse coming out of, well, everywhere in medicine. The official model is just as bad, and I've never seen this doc criticize it in any way. She is extremely committed to keeping a full separation between LC and ME. She is just as damaging, if not more, IMO.
 
I don't think it is a weird comment by Dr Alice, at all. What Dr Joseph Smith said was:

"...What if your Long Covid isn't from infectious disease; what if your Long Covid is from living with a narcissistic parent and not having what you needed from your parent and your brain boiled in its skull because of that?"

I also find that utterly bizarre and offensive.

And then he went on to talk about what if you developed Long Covid after several years' exposure to wildfire smoke.

I assume you did watch his segment of the presentation before parts of it were edited out?
 
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For context for the above:

Michael Bowker introduces Dr Joseph Smith: ...Now, a member of my family, a close member of my family, came down with something like this and we went so many places; let me say it was just the two of us, and I would go to this doctor, that doctor, this specialist, that specialist, top specialists in the world and we just got nowhere. We got somewhere when we got to the doctors who adhered to the same kind of program that our next guest explained to me on the phone - I was so excited to hear his plan, his idea for how medicine should be practiced in the future and I hope to heck that people listen to him.

I'd like to introduce Dr Joseph Smith and I'm going to let him explain his philosophy of medicine, his philosophy of treating people, because I think it is critical if we're going to go forward with ME and Long Haulers and actually defeat this disease.

Dr Joseph Smith: I can't tell you how many people I've met this year that have been completely pancaked by Covid. They're out of work, they basically have lost all their relationships in their life and they're basically completely stuck; and you're talking about the future of medicine and what I want to say is, Chesley mentioned this earlier and Oved mentioned this earlier about like these mysterious viruses that happen, and we can talk about viruses, we can talk about head trauma, we can talk about environmental toxicity, we can talk about pre-existing autoimmunity, we can talk about high adverse childhood event scores, we can talk about PTSD and what we need to understand is: the name matters.

OK, you get a diagnosis, OK, but once you get the diagnosis the most important question in my clinic is: Why? Why do you have this diagnosis? Why did you get Covid and suddenly something went wrong and never came back? What I want you to know is for all these chronic issues, it's not harder, it's just more complex, and for every person out there who has this situation going on there is an opportunity for recovery by understanding why? Why?

And so first we have to get medicine to acknowledge it's a thing, but my bigger concern with medicine is once they find the thing, the want to create a protocol for what to do with it; they're looking for one drug or one medication.

The problem with this condition is it's multi-factorial. It requires a history, an exam, diagnostics, labs, and it's like a Rubik's Cube, once you find one of the pieces and you do the right thing you might get one side of the Rubik's Cube to match.

Maybe you work with the Epstein-Barr virus and now they're feeling a little bit better but now they have a food sensitivity or their PTSD was triggered because they're in a toxic relationship. Your genes when you have this condition think that that's the right thing that your body's supposed to do because of your environment. So instead of focussing on the condition, we focus on why that is and try to create conditions that are right for recovery and focussing on barriers to recovery instead of a disease.

My biggest fear is that this takes off and then there's all this research and money piled into a model that is focussed on treating the condition where the problem is there's a departure from health and vitality and we need to remove barriers for that instead of just treating the condition. So that's what I think is going on and I don't think it's the future, I think it's happening now. Remember that medical practice is a science and it's an art and there are some artists out there doing it right now and you've just gotta find them.

Michael Bowker speaks:

Dr Joseph Smith: [This section has been edited out of the video but can be read in the previous post. The "P-60" stuff and quips about naming it after himself have also been removed.]


[Edited to insert additional transcription for Michael Bowker's initial introduction for Dr Smith.]
 
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Dx Revision Watch said:
There is another website here for the "Iceberg PSA" [A storyboard for an animated Public Service Announcement about Long Covid and ME].

The "PSA" page on the now taken down "One Name Campaign" domain had not been populated with any text.


https://www.doyouhaveme.com/

This domain was registered on 2021-08-19.


FOUNDATIONAL SUPPORT
ICEBERG PSA is made possible by the generous visionary support from our friends.

Logo for the Irene W. and C.B. Pennington Foundation.


https://www.doyouhaveme.com/storyboard

https://www.doyouhaveme.com/sponsor

"sponsor the Iceberg PSA

Your brand - regardless of industry, scope or demographic - will enormously benefit by aligning with us to address the urgent M.E. humanitarian crisis.

By supporting the efforts of this PSA to share life saving information with the public, you are exhibiting a moral core to your company. Together we must amplify this most vital message.

Vast visibility will be required to make this campaign a success. Your brand will be along for the global ride!

We need sponsors like you to be able to share this message with the world. Your support can help to save lives. Join us in this global endeavor.

To discuss further sponsorship tiers, collaboration and opportunity... please contact us here"


Sponsor

Atlas Health​


https://www.doyouhaveme.com/partners

Partners

Open Medicine Foundation
Solve M.E.
#MEAction

and the logos of four "Global" partners.​
Click to expand...
​
Please note that the following pages on this site have been taken down over the last few days:

https://www.doyouhaveme.com/sponsor

Sponsor

Atlas Health​


and this page:

https://www.doyouhaveme.com/partners

Partners

Open Medicine Foundation
Solve M.E.
#MEAction

and the logos of four "Global" partners.
​
---------------------------------------

Before the pages were removed, Dr Smith had been listed as a "Partner" on the One Name Campaign site and also as a "Sponsor" on the https://www.doyouhaveme.com/sponsor animated PSA site.

I consider his close association with these projects should have been disclosed during the presentation.
 
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Update on new content on Chesley's https://www.doyouhaveme.com/ website:

New text has been added to the Contact page. Whereas previously, the Contact page displayed only a phone number and email address, the following text has been recently uploaded:


https://www.doyouhaveme.com/contact

CAMPAIGN

We are inviting you and/or your company to join us as a Sponsor for the important and inspirational Do You Have M.E. Clinician Education & Public Awareness Campaign to directly address the immediate and long-term informational needs of medical physicians and the public with regard to Myalgic Encephalomyelitis (M.E.)., Long COVID and related post-infectious illness .

As you may know, M.E. is a serious, chronic complex illness with a broad array of neurological, muscular, metabolic, endocrine, autoimmune, cellular and connective tissue symptoms often triggered by infection (HHV-6, HSV-1, EBV, SARS, MERS, COVID-19, etc.). There are a staggering estimated 43+ million people in the United States alone who are exhibiting physical symptoms that may meet the diagnostic criteria for M.E. Costing the US economy an estimated $1 trillion annually in lost income and medical expenses. However, due to the lack of an FDA approved diagnostic test combined with a long-standing stigma and lack of physician education, an estimated 90% of people with M.E. remain undiagnosed.

The Do You Have M.E.? Campaign is a health education and awareness campaign comprising a Continuing Medical Education event and a Public Service Announcement (PSA) for distribution across media (television, radio, print, outdoor & digital).

The series of Continuing Medical Education events will start in early 2024 and educate primary care and specialist physicians. The audience will hear from prestigious national and local special guest speakers sharing enormous insights on cutting edge research, scientific innovation and experiential knowledge. The conference will include distributor booths for NGO’s, research centers and more. The PSA will run during and concurrent to the event with thoughtful distribution to reach everyone including our diverse and vulnerable populations.

Now it is even more urgent for primary care and specialist physicians to be equipped with the necessary knowledge, skills and tools to accurately and compassionately diagnose and manage M.E. By providing access to an early diagnosis and taking caring steps in the early phase - rather than going from doctor to doctor - we can dramatically decrease a person’s symptom severity and increase the likelihood of a recovery.

You have the opportunity to place itself [sic] at the forefront of health, innovation and discovery by joining the Do You Have M.E. Campaign?.

Join us.

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The series of Continuing Medical Education events will start in early 2024 and educate primary care and specialist physicians. The audience will hear from prestigious national and local special guest speakers sharing enormous insights on cutting edge research, scientific innovation and experiential knowledge.
Click to expand...


It's unclear whether "Dr Joe" will be one of the "local special guest speakers sharing enormous insights on cutting edge research, scientific innovation and experiential knowledge" who are projected to be presenting at these Continuing Medical Education events.
 
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