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

I've listened again to Smith, from 29:18 to the end. There is no longer the bit where he quips that the "umbrella term" could be named after him - that would appear to have been redacted, too. I can't recall for how long they were discussing names in the Smith section but they may have edited out all of that discussion.

If the naming after himself bit occurred earlier, for example, during Oved's segment, or Michael Bowker's, then I've missed it and will need to review those sections again.

 

According to presentation moderator, Michael Bowker, they are going to be visiting various companies to learn from them how to "rebrand a disease".

 

Even if somebody was scripting a new Whitehall farce about how not to improve perceptions of contested illnesses, the Solve story would still be rejected as too ridiculous.

 

Update on my correspondence with OMF:

This morning I have received a response from Ms Janis Maslyk, Open Medicine Foundation to my request for a position statement.

Ms Maslyk says that Linda Tannenbaum, OMF founder, has reported that OMF has been taken off the [One Name Campaign] website and that Chesley Heymsfield [Director: One Name Campaign] will be issuing a clarification of her intentions.

She thanks me again for reaching out to them and asks that I let them know if I have any further questions or concerns.

 

You're welcome, Sean. A pleasing start to the day. Still nothing from #MEAction, though.

The response from Ms Maslyk doesn't say whether OMF intends to put out a public statement but I have paraphrased their response and put it out on Twitter. I have also placed a copy in the comments under SOLVE's original Tweet (1 August) about its participation in the One Name Campaign launch, as this thread is still receiving comments.

 

A warm hello to everyone on the forum. Thank you for your comments. I am so very sorry that all of us are suffering terribly with M.E. or are caring for loved ones who are. As we know, there is the pain of illness, and then there is the pain of not being believed, understood, 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.

Just to clear up any confusion, we are not proposing that M.E., Long COVID, POTS, MCAS, or any other related illnesses be formally renamed, reclassified or that any diagnostic codes be changed in any way medically or scientifically.

Perhaps having a category that simply refers to the greater community would be easier solely for the purpose of raising awareness and increasing research funding? Our goal is to create 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.

All of this is in development, nothing is final - so thank you for your understanding and input. I look forward to your comments.

 

Is this similar to having a post-infectious illness category dedicated to ME, LC, post-Lyme etc.?

 

Chelsey: "Just to clear up any confusion, we are not proposing that M.E., Long COVID, POTS, MCAS, or any other related illnesses be formally renamed...."

Then why so much effort, resources, publicity, recruiting, into a 'One Name Campaign'?

Additional names/new names/ are just not our priority atm.

 

Hi Chesley,
I’m sorry to hear how long you have been ill. I think your film is a worthy endeavor, but having seen the “medical expert” you had at the launch, it gives me a lot of concern. Joseph Smith very confidently espoused on a few things that seemed either fringe ideas or not widely accepted or supported by science, and indeed his website lists things like “meridian therapy” and “craniosacral”. I’m tired of seeing pseudoscience pushed on our community, so would hope the film takes a scientific approach if it addresses possible underlying disease mechanisms or treatments. I think it’s ok to hear from patients themselves if they use alternate therapy’s, because they do, and it’s part of the lack of proper care, but not to hear from people who are selling services like this. Best of luck w the film.

 

I have received a response (dated August 9) to my email from Laurie Jones, Executive Director, #MEAction:

Laurie says that #MEAction had signed on to be a community partner for the film being made, A FILM ABOUT ME, which means [#MEAction] would be introducing the filmmakers to individuals to be interviewed about their experiences with ME.

That [#MEAction] has heard from the filmmakers that they are sending out a statement of clarification on their fundraising event, The One Name Campaign, of which [#MEAction] had no direct involvement.

That [#MEAction] are always excited to see people with lived experience using their voice and talents in their own unique way and wish the filmmakers the best.

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

I have replied (by email, August 10):


From: Suzy Chapman
To: Laurie Jones <redacted>; #MEAction <info@meaction.net>
Re: Concerns regarding MEAction and support of the "One Name Campaign" (Director: Chesley Heymsfield)


Hi Laurie,

Firstly, thank you for your response.

It's not entirely clear, though, from your response how your org stands regarding the objectives of the "One Name Campaign".

You say you had no direct involvement in the "One Name Campaign" but you haven't clarified whether your org supports the campaign's objectives or whether your org's name will still be listed on the "Partners" page, when that page is reinstated by Chesley.

Kind regards,

Suzy

 

I note that the https://onenamecampaign.com website has been taken off line this afternoon.

 

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.

 

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.

 

@Chesley i hope you are alright.

regardless of whether we agree with your ideas/campaign, you are a fellow sufferer and this must have been hugely stressful for you. Wishing you well

 

I think it is worth reading the "Short Summary" text (my bolding):


[I can't get the link to display as it's being blocked if pasted and also if put in a quote.]

The site is Indiegogo and the title of the fundraiser is:

"Help Get Documentary MOVIE ABOUT M.E. made!"


THIS CAMPAIGN IS CLOSED [Ed: no closure date given - it may not have been closed recently.]

Help Get Documentary MOVIE ABOUT M.E. made!

We are on an important mission! Tell the world about M.E. That's Myalgic Encephalomyelitis/CFS.

"...M.E. has been termed, “The Disease of a Thousand Names” highlighting the vast number of names used to describe the illness at various times and places around the world — like Yuppie Flu, Chronic Fatigue Syndrome, Fibromyalgia, Chronic Lyme, etc. Often misinterpreted by physicians and misreported by the media as a new mysterious disease following pandemics or epidemics (MERS, SARS, COVID-19), ME has actually existed and been chronicled for centuries.

Now COVID-19 is poised to change that..."​

No, ME is not Fibromyalgia or Chronic Lyme.

We've had enough problems with White, Per Fink et al trying to lump ME, IBS and Fibro together as manifestations of the same condition.

 

A further response from #MEAction's Laurie Jones:

"#MEAction does not support the renaming of or combining of diseases under one name but we do support people with complex chronic disease working together and supporting one another.

"We are in touch with the filmmakers to see how the future film campaign will change and will then decide on an official partnership. Thank you for your email and your concern..."

Laurie Jones, Executive Director, on behalf of #MEAction, August 10, 2023​