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

Twitter exchange between

Janet Dafoe @JanetDafoe

and

ME/CFS News @MECFSNews


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There are now around 87 comments under the original post by SOLVE M.E. promoting the launch - most are critical.

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As far as I can see, questions directed to IOM, per se, SOLVE M.E. and #MEAction by me and others have not been responded to yet.
 
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You have to wonder whether #MEAction and IOM are even aware of what the One Name Campaign is actually calling for or have been "grandfathered in" as a result of having agreed to support and promote the film.

I hope they will clarify - and clarify their position. I'll ask for position statements from both groups.
 
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Shadrach Loom said:
Is it unfair to suspect that Dafoe is being a little disengenuous? The material that was posted was short and accessible - and it highlighted rape as an example of trauma.
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Indeed:

https://www.onenamecampaign.com/illness

"...Unsurprisingly, these individuals developing this complex array of multi-systemic symptoms are not the first in history, nor are they the last. These symptoms can also present after exposure to other viruses (SARS, EBV, HSV, HHV-6, MERS, etc.) and toxins (mold, chemicals, etc.) and trauma (rape, war, famine, etc.)."

and Dr Smith used the following examples in his presentation:

"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?"

and then went on to talk about repeated exposure to wild fire smoke.
 
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I would think Janet Dafoe has far more pressing things to deal with than reading the details on a website of someone using a naming campaign to promote their film. Yes, Ron did an interview that is on the website, but I get the feeling he does his best to provide interviews with any ME organisation who asks him, so he can help spread the word about ME and his work. Also Janet is not as far as I know the official spokesperson for OMF. That's Linda Tannenbaum. If people want OMF's view on something, better to contact them directly.
 
Dx Revision Watch said:
Indeed:

https://www.onenamecampaign.com/illness

"...Unsurprisingly, these individuals developing this complex array of multi-systemic symptoms are not the first in history, nor are they the last. These symptoms can also present after exposure to other viruses (SARS, EBV, HSV, HHV-6, MERS, etc.) and toxins (mold, chemicals, etc.) and trauma (rape, war, famine, etc.)."
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To be fair, though, I’d thought of OMF as essentially being just an offshoot of the Davis/Dafoe empire. However neither is listed as a member of staff, so all sorts of mad things might be done without them knowing.
 
https://www.onenamecampaign.com/illness

"...It is time that we bring this ole' horse out of the rain and give it a group name.

"Names over time have included:

⦁ Akureyri Disease
⦁ Benign Myalgic Encephalomyelitis
⦁ Chronic Fatigue Syndrome
⦁ Chronic Fatigue Immune Dysfunction Syndrome
⦁ Chronic Infectious Mononucleosis
⦁ Epidemic Myalgic Encephalomyelitis
⦁ Epidemic Neuromyasthenia
⦁ Iceland Disease
⦁ Myalgic Encephalitis
⦁ Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
⦁ Myalgic Encephalopathy
⦁ Post-viral Fatigue Syndrome
⦁ Raphe Nucleus Encephalopathy
⦁ Royal Free Disease
⦁ Tapanui Flu
⦁ Yuppie Flu (pejorative)
⦁ Long COVID
⦁ COVID Long Hauler
⦁ P.A.S.C."


See what's she's done there?


There is also a page for a "Public Service Announcement" (Tab PSA) but there is no text on that page.
 
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Dx Revision Watch said:
and Dr Smith used the following examples in his presentation:

"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 then went on to talk about repeated exposure to wild fire smoke.
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Absolutely right to hold associations to account for lending support to misguided self-publicists.
 
I've emailed OMF and messaged MEAction via their website contact form (they don't appear to offer an email option).

The dropdown Menu where you can pull up the list of "Partners" isn't loading for me today.

But the URL for that page is:
https://www.onenamecampaign.com/partners

and I've attached a PDF of the webpage.
 

Attachments

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Jeez!

Hello, and thank you for contacting Open Medicine Foundation (OMF). Due to the high volume of inquiries, we cannot guarantee an individual response to every email. However, you may find answers to some of your questions on our FAQ page.

We also invite you to check out the information available in our Resource Center. This webpage includes treatment recommendations, parent resources, information to share with your doctor, and more. We will continue to share with the community whenever the page has been updated with new, verified information. We hope you find this to be helpful!

*Please note, OMF is not authorized to provide health-related advice or personalized medical recommendations for doctors. Additionally, we are not involved in the process of recruiting participants for research projects.*​

With hope,

Team OMF​
 
While I agree this project is bad and anything less than a distancing statement from Solve is unacceptable, there’s some additional context to the fervor of the backlash this is generating on long covid Twitter. I want to share that because I don’t think everyone is aware of it.

There is a small but loud segment of long covid Twitter* which opposes the association of long covid with ME full stop—even in the subset who satisfy ME diagnostic criteria. They view LC as something entirely new and thus attempts to link it with ME are, in the parlance of their most combative members, “conflation” perpetuated by “grifters” in the ME advocacy space seeking to either secure funding for ME at LC’s expense or for the leadership at ME advocacy orgs like Solve to enrich themselves personally with ill-begotten funding.

Solve has for a long time been public enemy #1 among this group for their efforts to tie ME and LC together legislatively and in their public messaging, so their endorsement of this misguided project is really a perfect storm. To the ME-critical segment of long covid Twitter, this is further proof of the malicious intent of Solve towards people with LC and the harm caused by associating LC with ME.

*Some notable accounts in ME-critical LC Twitter are

twitter.com/LongCovidAP
twitter.com/calirunnerdoc
twitter.com/D_Bone
 
jonathan_h said:
While I agree this project is bad and anything less than a distancing statement from Solve is unacceptable...
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I agree, but hasn't that horse already bolted?

Isn't SOLVE going to find it a little tricky to distance itself, given that Oved Amitay has already taken part in the launch presentation, with the evidence up on YouTube? The other two orgs listed on the "Partners" page can un-Partner themselves - if they see fit - and issue a statement to that effect. It will be very interesting to see how SOLVE negotiates this. Will look out for the Twitter accounts you mentioned.
 
I have received a brief and friendly email response to my contact via the website from Chesley. She says she has listening to people with the different diseases high on her agenda. I have reiterated my invitation to her to join us here and given her links to the forum and to this thread, with warning that members here express their views openly and there is a lot of criticism of her One name project both here and on Twitter.
 
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jonathan_h said:
While I agree this project is bad and anything less than a distancing statement from Solve is unacceptable, there’s some additional context to the fervor of the backlash this is generating on long covid Twitter. I want to share that because I don’t think everyone is aware of it.

There is a small but loud segment of long covid Twitter* which opposes the association of long covid with ME full stop—even in the subset who satisfy ME diagnostic criteria. They view LC as something entirely new and thus attempts to link it with ME are, in the parlance of their most combative members, “conflation” perpetuated by “grifters” in the ME advocacy space seeking to either secure funding for ME at LC’s expense or for the leadership at ME advocacy orgs like Solve to enrich themselves personally with ill-begotten funding.

Solve has for a long time been public enemy #1 among this group for their efforts to tie ME and LC together legislatively and in their public messaging, so their endorsement of this misguided project is really a perfect storm. To the ME-critical segment of long covid Twitter, this is further proof of the malicious intent of Solve towards people with LC and the harm caused by associating LC with ME.

*Some notable accounts in ME-critical LC Twitter are

twitter.com/LongCovidAP
twitter.com/calirunnerdoc
twitter.com/D_Bone
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Yup. And ironically, the same also insist that LC should always be used, itself an umbrella term. I see this future goal of an overarching term in the same sense as autoimmune disease, which doesn't erase the existence of type 1 diabetes or MS.

It's not something that should replace ME, although a name change is inevitable in the future, given all the whining about it. Just not yet, but the general idea is sound, Long Covid is similar in that it causes issues that span ME/CFS, chronic fatigue, fibromyalgia, dysautonomia, POTS, IBS and more. But mostly because it depends far more on the attitude of the MDs than the patient's illness.

They're vocal but not very relevant, I ignore them. No community is always aligned with its own goals and they're doing this from a position of ignorance, they don't have the background that many of us here have. It's not as if they'll change anything.
 
Here's another page that has turned up on Bing (I've swapped to Edge to see whether the "More" tab with the dropdown menu will load on Edge, as it won't load today on Opera or Chrome). My bolding:

https://www.onenamecampaign.com/documentary

what the doc ordered

This investigative documentary joins Chesley, the film's director, and team as she sets out on a journey across the country launching the One Name Campaign to REBRAND, not a corporation or product, but a disease!

All kinds of people across the country join forces to change The Disease of a Thousand Names (Myalgic Encephalomyelitis or M.E., Long COVID, Chronic Fatigue Syndrome, Fibromyalgia, Chronic EBV, etc.) into a disease with one unifying name - so the illnesses may gain the recognition, resources and research funding that is critical to understanding how all of these subsets are related, develop a diagnostic test(s), treatments and a cure.

What name would you give it? Give us your best suggestion here.

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"All kinds of people across the country join forces to change The Disease of a Thousand Names ... into a disease with one unifying name"


But not the people actually suffering from the diverse diseases that Chelsey wants to conjoin somehow.

It never ceases to amaze me how one individual can wreak such havoc, backed by a staggering sense of over confidence in half baked ideas. Sorry, but so much of what's proposed is considered appalling by so many of the people the overblown project is supposed to 'help'.
 
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