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

Wow - what a bullshit response from SOLVE M.E.

Solve ME/CFS Initiative
@PlzSolveCFS

27s

This campaign is an artistic expression by a community member interested in generating awareness. We view this as part of growing discourse about infection associated diseases & aren't seeking to rename existing disease names in the clinical/research space.

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Solve ME/CFS Initiative
@PlzSolveCFS

2m

We are also not financially supporting this effort. We're interested in bridging our experience in the #MECFS space w/ the evolving understanding of #LongCovid & how infection-associated chronic diseases could be understood more broadly by the scientific & research communities.

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

Solve ME/CFS Initiative
@PlzSolveCFS

3m

We do see momentum building around new understanding and connections of these diseases and feel there is a lot to be gained by working together for the benefit of this larger community.

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

 

Yes, I see that frequently enough in local LC groups too. It's a little exasperating when, at the same time, there are constant enquiries about these completely bizarre and awful symptoms person x is now experiencing - followed by description of core-definition and very common ME symptoms.

xkcd has us covered —

 

Indeed, essentially:

a) We don't support the campaign's objectives.

b) But we will continue to support the campaign because we feel promoting discourse around infection associated diseases is important.

I'm struggling with their logic.


The ONC website dropdown for the "Partners" page is still not available this morning. There is a PDF of that page in Post #92

 

That partners page going down is a promising sign of backpedalling pacy enough to satisfy even S4ME’s Tour de France spods.

 

Pike Wielder
@PikeWielder

 

Dx Revision Watch
@dxrevisionwatch

44s

@PlzSolveCFS

16 June: "'Amitay . . . is firmly behind the move to rename some of the confusing names given to autoimmune diseases. "Rebranding these..."'

7 Aug: "[we] aren't seeking to rename existing disease names in the clinical/research space."

So which is it?

 

Waffling around the issue doesn't earn much trust no. People fuck up, and if that's what he did just own up to it.

 

Another source for June comment from Amitay:

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

 

"Sorry. Had an ME moment. Completely forgot what would happen if the medical profession found out we'd made up yet another name for something half of them don't believe exists in the first place."

 

Kitty, the 16 June launch presentation was held at La Lieff and promoted as a "winetasting event and conversation".

"The public is invited to a winetasting event and conversation at La Lieff in the Funk Zone in Santa Barbara on Friday, June 16 from 5pm - 7pm..."

Tone deaf considering how many PwME cannot tolerate alcohol and are on benefits. La Lieff wines range from $38 to $65 a bottle (£30 - £51 a bottle).


I didn't know that Amitay was "co-founder of the Long COVID Alliance."

 

When I still used social media, I'd capitalise any hashtags I made up for just this reason. It means screen readers used by visually impaired and blind people can make sense of them, but also people with squelchy ME brains!

 

The originator has it as #notonename

ie #NotOneName

I'll add caps in future when I use it for better clarity.

 

Well this is getting very dirty. A segment of the launch video has been edited.

The redacted segment included the P-60 comment. Note how the whiteboard suddenly appears with "P-60" written on it, when there is now no mention of P-60 in the video.

On Friday, the video was 46.27mins long and now it is 39.59mins long; now shorter by a good 6 minutes.

Pick up video from 33:04mins from start:

Pike Wielder
@PikeWielder


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

In another Tweet, Pike says:

Replying to @dxrevisionwatch @inducekarmaaa
and @CaroleBruce17

Tweet below on 1 part edited from video: 33:34-33:36 on version visible yesterday. In original Solve pres solicits new name recs [recommendations] from audience. He or Smith write down P-60. In yesterdays version P60 magically appears on board A bunch of us keep receipts. Several have full video.

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

Pike says he'll be reviewing all of the edited version tonight and will try and work out what else has been edited out.

 

I'm confused and struggling to articulate it. Which says a lot about how confused what it is in the first place I think.

what I think I can put down:

1. is this really about saying we need a 'specialism' in medicine that covers the gap - a bit like when the Nice guideline people probably had to work out what consultants/medical specialties you'd need on a multi-disciplinary team vs what we'd try and answer to the question (I'm sure there was one somewhere on s4me) of what disciplines do we want involved in research. ie are they really talking about whether we need an ology for this?

Which is very different to the name bit.... but worthy of discussion to put together a brief that covers more than the name?

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.

3. why is the whole thing called the name thing then? It's like using a Boaty McBoatface competition as a tactic to gain 'apparent numbers' for something that really should have weightings about which people and groups need to be represented on a serious topic. It also seems a bit of a distraction - albeit if we do talk about a new area, we'd of course want the word psych, mysterious, fatigue or anything we've seen as code-wording in the past left out of things.

There are quick ways to gain attention, and then there is a well-put together marketing strategy that aims to get attention in the right way for the right things ie actually links to the end-objective. So I'm confused by the lack of coherence I think.

 

My takeaway from the sections of the presentation that I have watched so far, is that Dr Joseph Smith considers his Atlas Health practices approach* is the approach that LC/ME/CFS/Fibro/et al require and that Oved Amitay also considers that Dr Joseph Smith's practice is what these patients require, and I suspect that Chesley probably does, too.

*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.