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.
 
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bobbler said:
2. why is someone who isn't a brand expert talking about rebranding anything? do they know how to go about doing that, and those who do know that they would need a process that very much involves stakeholder management at the heart of it - ie it begins and continues with getting the right people involved in the right way at the right time never just giving those who it matters to most a choice of 2 at the end.
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According to presentation moderator, Michael Bowker, they are going to be visiting various companies to learn from them how to "rebrand a disease".
 
Chiropractic, Residual Rehabilitation, Ocular Motor Therapy, Tone Pacing, Neuro Sensory Motor Integrator, Functional Neurology, Orthopedic Rehabilitation, Meridian Therapy, Clinical Nutrition, Balance, Aerobic High Impact, Specific Customized Programs, Light Therapy, Sound Therapy, Color Therapy, Chiropractic And Massage Therapy, Interval Training, Balance Therapy. Therapeutic Massage, Neurolymphatic Therapy, Tilt Table, ARP, High Volt Galvonic, Trans-cutaneous Vagal Stem, Repositioning Maneuvers, Brain Tap, Hypnosis, Cold Laser, Rotational Therapy, Hemistim, Vibrational Therapy, Percussor, Aromatherapy, Meridian Therapy, Righteye and SSEP.
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What utter shit. :grumpy:
 
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.
 
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Sean said:
Thanks once again, Suzy, for your efforts on all this nonsense.
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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.
 
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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.
 
Chesley said:
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.
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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, welcome and thank you for joining us.

I'm not clear about whether you are making a film about ME/CFS, your and others' experiences etc, and the One name idea came up in your discussions as a handle to use for publicity for the film, and to attract people interested in the other diseases you list, or whether the plan is to make a film about your one name idea and travel the country promoting the idea.

If it's the former, perhaps, given the confusion and adverse social media reaction to the idea, you could simply drop the idea and the 'One Name Campaign' publicity, and focus instead on some other aspect of ME/CFS as your publicity angle for your film.

If the latter, then I really think you need to think again about the whole 'One Name' project. Assuming you have read through this thread and the reactions on Twitter to Solve's initial involvement and then backtracking, you must surely realise by now that the idea is not going to work. It's not something that has arisen from a medical, care or research need, and is not useful in advocacy because of the confusion and bad feeling it causes.
 
Chesley said:
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.
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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
 
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Chesley said:
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.
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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.
 
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.
 
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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​
 
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