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

This is an utterly terrible idea. ME, long Covid, and other post-infectious illnesses should not be lumped under one name.

However, we should recognize that they are all similar and fall under one umbrella, which could use a standard name. I recommend post-infectious illness, as it's accurate and reasonably concise.

 

Copies of tweets:
Solve ME/CFS Initiative @PlzSolveCFS
Last month Solve M.E. CEO Oved Amitay participated in the launch of the One Name Campaign, which seeks to identify the best single medical name for a group of long-ignored, infection-associated chronic illnesses such as #MECFS, #LongCovid, &#ChronicEBV.
Covid Castaways The Long COVID Community would like to formally reject the one name campaign. How is it all one thing if I recovered from my Chronic Lyme after 11 year by treating my chronic tick borne infections. And oh yes I was rightfully dxed with ME/CFS & Fibro).
Dr. Alice @calirunnerdoc
It seems like this session was designed to confuse viewers and attendees rather than inform and empower them. When an attendee asked what “One Name” hoped to achieve, multiple times, no clear answer was provided. Please stop the marketing campaigns & focus on patient’s lives.

 

Another reply to Solve's post:
Dr Elisa Perego @elisaperego78
I want to express my concern at this unilateral campaign, which seems to aim to conflate together not only "post viral illnesses" with different triggers, but also "post trauma illness". I am also troubled by the language I am seeing throughout the material you shared

 

But they are heavily promoting it across SM. Given the strength of the criticism they are getting on Twitter today, perhaps they will consider stepping back with their support.

Replying to Solve:
Persistent @persistingvirus
Really? This is the best you can do? Terribly done & so unprofessional & unscientific. Dump Joseph Smith who suggested P-60 should be the one name & maybe caused by living with narcissistic parents. You are really making your organization look totally illegitimate.

 

The optics of having 3 men on a panel about ME were also awful. And Smith joking “howabout Smith Syndrome… Joe Smith Syndrome”. He obviously feels he is some big personality on our disease and I’ve both never heard of him and found his comments and demeanor unprofessional.

 

Only to replace ME, it doesn't make sense. Oh well.

There is a huge need for an overarching category, similar to what autoimmune diseases represent. But it makes no sense to just rename ME, that is a dead-end. IMO that supercategory would eventually absorb the concept of autoimmune diseases, they are clearly not just "the body attacking itself".

Ironically, all of the concerns long haulers have are exactly what is happening right now, and the main fear is actually that it doesn't change. If someone develops type 1 diabetes from COVID, they'll be seen by diabetes specialists, there is somewhere to send them to.

The main issue with everything caused by COVID that doesn't have an existing, respected, room is that GPs have nowhere to send them to. That place needs to be created, but it's not just about ME at all.

But this isn't it. It may be a mainly a political issue, and is dealing with the political nature of how chronic illness is neglected on purpose, but I expected smarter from SolveME.

 

I meant on twitter from long haulers. I had a more higher level version of it in mind. I agree that this is a bad effort, and it's not entirely clear what is being proposed. I took the more generous interpretation.

What I had in mind was more the lead-up to creating a discipline for the various consequences of infections, giving it the space GPs, especially, need to refer people to. This is clearly not it.

 

That's the part I took and that makes sense to me. The rest is a terrible idea.

 

So, this term is already being used by researchers:

Post-Acute Infection Syndrome (PAIS)


2023 paper from China: https://www.csbj.org/article/S2001-0370(23)00277-5/fulltext



The Microbiome in Post-Acute Infection Syndrome (PAIS)

"A long list of infectious agents, covering various bacterial, viral, and parasite species, is known to trigger the development of PAIS in a proportion of exposed individuals..."

Mentions PASC, ME/CFS, Lyme et al.

"Post-Acute Infection Syndrome (PAIS) is a relatively new medical terminology that represents prolonged sequelae symptoms after acute infection by numerous pathogenic agents. Imposing a substantial public health burden worldwide, PASC (post-acute sequelae of COVID-19 infection) and ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) are two most recognized and prevalent PAIS conditions."


Brief 2022 paper from Korea: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9247451/

Post-acute infection syndrome after COVID-19: effects on the oral and maxillofacial region and the recent publication trends

 

Note that the term: Post-Acute Infection Syndrome (PAIS) is not an ICD-10-CM Tabular List category, either coded-for or included as a non coded-for parent class. Nor is it included in the Index.

 

Facebook page for
Movie About ME

https://www.facebook.com/movieaboutME

June 23

Great audience for the official launch of the ONE NAME CAMPAIGN! We need your support. Our team is traveling across the county to raise awareness about the relationship between the post-viral ‘basket of illnesses’ that share similar, if not the same symptoms. What are they? Myalgic Encephalomyelitis (M.E.), Chronic Fatigue Syndrome (CFS), Chronic EBV, Fibromyalgia, many more… and now Long COVID or Long Haulers.

If you could create ONE NAME to include all of these under that umbrella. What would it be?

Please donate here: https://www.paypal.com/donate/

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

The "post-viral 'basket of illnesses'" have been listed by Chesley as:


Post-viral/post-trauma illnesses
Long COVID/Long Haulers
Myalgic Encephalomyelitis
Chronic Fatigue Syndrome
Chronic EBV
Fibromyalgia
POTS
MCAS
Chronic Lyme
"many more…"

Many more. But which, specifically?

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

Parkinson's, Alzheimer's and Ataxia share some similar symptoms, but they are not all grouped under a single umbrella term for the purpose of categorisation.


[Edited to add "post-viral/post-trauma illnesses" to the list.]
[Edited to add "POTS" and "MCAS" to the list.]
[Edited to add "Chronic Lyme" to the list.]

 

The 'doctor' guy is a chiropractor who also does holistic therapies: https://atlashealthmethod.com/about-us/

 

https://keyt.com/news/santa-barbara-s-county/2023/06/12/931046/

"....[Director Chesley Heymsfield] believes long haul or long COVID and illnesses with similar symptoms such as brain fog, headaches, and fatigue could be put under one umbrella for study and care."

​

Reporter: "Long Covid symptoms include brain fog, fatigue and anxiety..."

It's all so simplistic.

 

Finally had time, last night, to listen to most of the YouTube One Name Campaign launch video. I don't think this "horse with no name" has a leg to stand on.


If it has not already been mentioned, if you click on the "More" tab on the ONC website, there's a dropdown menu with a "Partners" tab:

https://www.onenamecampaign.com/partners

This lists the following orgs with some blurb about each "Partner":

Open Medicine Foundation (OMF)

SOLVE M.E. (which includes text about the You + ME Registry and Biobank)

#MEAction​

Then there are three company logos which link to:

Dr Joseph Smith's Atlas Health chiropractic, kinesiology, functional medicine and Chinese medicine practice - this is Mr P-60 who spoke (mostly about himself) at the launch presentation.

Fest Forums

La Lieff (a Santa Barbara wine producing company)

I had noticed bottles scattered around the audience tables, so I imagine they provided the wine. I would have needed something a good deal stronger than a Sauvignon Blanc after sitting through that presentation.


What stood out to me as both incongruous and disturbing was the journalist and author's excited references to taking this project on the road to visit commercial companies to learn from them how to set about "rebranding a disease" - when as far as I am aware, the project's instigator and the three patient orgs lending their names and support for the film (and one assumes are also supportive of the One Name Campaign) hadn't bothered to first run this concept past patients, carers and advocates to assess whether it was:

a) acceptable to and welcomed by patients;
b) whether it should be launched, at all.

 

Oh, and none of the presenters (of a project that presumes to represent those with Long Covid and other vulnerable patients) were wearing masks at this event.

 

It's unconfirmed, but I suspect that the three supporting orgs were approached, initially, for their support and promotion of the film about ME that Chesley Heymsfield is working on. Then the concept of the "One Name Campaign" evolved out of that. By which time, the three orgs had already lent their names to the film.

If I obtain clarification around whether the three orgs signed up to support both the film production and the ONC project, I'll update. At the moment, there have been no responses from SOLVE or #MEAction on Twitter about their support of the ONC project.

But evidently SOLVE's CEO, Oved Amitay, supports the One Name Campaign as he was prepared to participate in the launch presentation - though I thought from his body language he seemed uncomfortable.

 

Chesley Heymsfield (Campaign & Documentary Director) has a Twitter account for the One Name Campaign, created in April 2023, but no announcement of the campaign and as yet, no other Tweets, called: @TheOneNameOrg

There is also a Twitter account for the movie, itself: @Movie_About_ME - which has not been updated since April 2022.

[Edited to remove error.]

 

Thread Reader of Elisa’s tweets:

https://threadreaderapp.com/thread/1687811520850182144.html