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

[Dx Revision Watch]

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.

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

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.

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

 

[Trish]

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

I think it's a bit of honesty at last about what their real motives in supporting the campaign are. So they spoke at the launch in a patronising 'supporting artistic expresssion' way, not a sincere support of the stated aims of the campaign. So basically Amitay was bullshitting at the launch.

As a result they have upset lots of pwME and pwLC and turned this into a divisive issue, leaving the artist/filmmaker involved in an impossible position of appearing to be supported but then abandoned and criticised.

Surely it would be far better for all concerned to be honest from the start - to wish Chesley well with her filmmaking, but to make it clear the campaign is a non starter and they don't support it.

 

[SNT Gatchaman]

There is a small but loud segment of long covid Twitter* which opposes the association of long covid with ME full stop

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.

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

"Names over time have included:

xkcd has us covered —

 

[Dx Revision Watch]

I think it's a bit of honesty at last about what their real motives in supporting the campaign are. So they spoke at the launch in a patronising 'supporting artistic expresssion' way, not a sincere support of the stated aims of the campaign. So basically Amitay was bullshitting at the launch.

As a result they have upset lots of pwME and pwLC and turned this into a divisive issue, leaving the artist/filmmaker involved in an impossible position of appearing to be supported but then abandoned and criticised.

Surely it would be far better for all concerned to be honest from the start - to wish Chesley well with her filmmaking, but to make it clear the campaign is a non starter and they don't support it.

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

 

[Shadrach Loom]

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

 

[Dx Revision Watch]

Pike Wielder
@PikeWielder

 

[Dx Revision Watch]

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?

 

[Trish]

I think Amitay has listened to the responses, and perhaps consulted more among SOLVE people, and realised he made a mistake with his support, and is backtracking. That's a good thing, though perhaps it would be better to say that's what he's done, rather than trying to reframe it as artistic support.

 

[Solstice]

I think Amitay has listened to the responses, and perhaps consulted more among SOLVE people, and realised he made a mistake with his support, and is backtracking. That's a good thing, though perhaps it would be better to say that's what he's done, rather than trying to reframe it as artistic support.

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.

 

[Dx Revision Watch]

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

Amitay is a powerful patient advocate and is firmly behind the move to rename some of the confusing names given to autoimmune diseases. “Rebranding these diseases so people and doctors can understand them better will be helpful and provide hope,” he said. “It’s going to be a terrific discussion.”

 

[Kitty]

People fuck up, and if that's what he did just own up to it.

"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."

 

[Dx Revision Watch]

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."

 

[Trish]

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

See this thread:
USA: The Long COVID Alliance (set up by SOLVE)

 

[Trish]

shouldn't that be #notonewname

I assumed #notonename meant: not one name.

 

[Kitty]

I read it as 'no tone name'

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!

 

[Dx Revision Watch]

The originator has it as #notonename

ie #NotOneName

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

 

[Dx Revision Watch]

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.

 

[Trish]

I would suggest we remember that at the centre of this is an individual with ME/CFS whose motive is to do something to help people with ME/CFS and other diseases.

It's not her fault people at SOLVE and OMF misled her into thinking she had support from major US ME organisations, and on that basis went ahead with her launch believing her One Name idea was helpful.

She has now been unceremoniously dumped by Solve and attacked from all sides on social media.

If we are going to level blame, I think most of it should go to the organisations that initially offered their support.

I can only imagine how distressing this is for Chesley. She has my sympathy. I hope she will cancel her campaign and take some time out to take care of her health. I wish her well.

 

[bobbler]

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?

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.

 

[Dx Revision Watch]

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?

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.