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

The Joseph Smith segment was wild. A tidal wave of buzzwords and jargon, all creating a cumulative effect of absolutely nothing.

DNRS, the massive grift, with a ringing endorsement!!

 

infection-associated chronic illness would refer only to the infectious trigger cases.

I can see why researchers need a name for "unexplained chronic illnesses that can be traced back to an infection and overlap significantly with each other independently of the infectious agent".

 

As I've mentioned, upthread, you can call an illness what you like but without an ICD code, your provider can't bill for it and insurers won't consider it a billable disease.

 

But what about the others? Where would they fit into SOLVE ME/CFS's vision?

 

I don't know. I'm not defending their vision, in case it was not clear. I'm saying that infection-associated chronic illness is a useful term in some contexts that does not require changing any names. Trying to invent a unifying name and diagnostic label to REPLACE what is currently ME/CFs, long covid, chronic lyme, etc is a bad idea. I'm still not sure if that is what's being proposed or not.

 

Comment from Dr Elisa Perego on Twitter:

Dx Revision Watch @dxrevisionwatch
I wonder what the #LongCovid advocacy groups think of this initiative? Have they been consulted? Were ME/CFS patient groups consulted?
Dr Elisa Perego @elisaperego78
I just saw this on Twitter. I'm concerned, disappointed. #LongCovid is a patient made term, was built from common suffering, shared by people who were often left at home to live or die on their own from a disease estimated to have killed millions. The name belongs to the patients
#LongCovid has been extremely successful as a term, it helped to achieve recognition from the WHO and other health bodies in a few months. It's in research, policy, the press, the dictionary, it's in the name of advocacy groups often led by sick, unpaid volunteers
Many with #LongCovid have been worked *for free* to help others for years while in severe and even life threatening conditions. I am disappointed
I obviously don't know what patients and patient communities other than #LongCovid think of that initiative and if it was discussed with them. I can only express my disappointment as a LC researcher, patient and advocate
am actually having a look at the website of the campaign and I am finding new reasons for concern

 

I really, really don't like the idea.

 

This looks rough and not very solid but there is a need for an overarching name that is universally accepted. Inevitably this will need to become a specialty of its own, at least comparable in size to neurology and with its own research institute, from the perspective of the NIH model.

Whatever name is chosen will define how it gets accepted, whether it's taken seriously and has support. But it looks like it needs a lot of polishing.

There is no such term right now. Nothing that any MD can point to as the people who handle this. It has to happen. The current siloes of medicine aren't fit for this purpose.

 

Good grief the comments are so sad. Sorry but people are missing the point here. This isn't about replacing the terms, although many of them are awful, but giving them proper categorization. It's a freaking wild west out there for now.

Talk about a community that is so talented at kicking itself in the proverbial nuts.

 

Campaign website:

https://www.onenamecampaign.com

https://www.onenamecampaign.com/illness

horse with no name

Like going through the desert on a horse with no name, living with a post-viral or post-trauma illness that is excluded from a unifying medical name - like cancer, dementia, mental health, etc. - makes it hard to get medical care, treatment and other life saving resources.

The world is experiencing the largest mass conversion of 'healthy' people to disabled after these individuals, infected with COVID-19, not only failed to fully recover, but go on to develop a distressing set of post-viral symptoms.

Brain fog. Muscle weakness. Intense fatigue. Shortness of breath. Chronic pain. Unrefreshing sleep.

What does this mean in a person's daily life? Difficulty walking up stairs, standing up in the shower or putting away dishes. Forgetting the name of a family member or close friend. Inability to work or perform simple tasks like going to the mailbox or putting a stamp on an envelope.

The level of disability, disruption and distress that it can cause to not only an individual, but their support and work network are profound. The severity of the illness can vary, patterns of symptoms can undulate and almost everything about it can be unpredictable. At times, it can be a higher burden than stage four cancer.

Unsurprisingly, these individuals developing this complex array of multi-systemic symptoms are not the first in history, nor are they the last. These symptoms can also present after exposure to other viruses (SARS, EBV, HSV, HHV-6, MERS, etc.) and toxins (mold, chemicals, etc.) and trauma (rape, war, famine, etc.).

Unfortunately, because there is not a medical term that catches these illnesses many patients end up receiving a 'wastebasket diagnosis'. Otherwise known as a dead-end.

Dead-ends can include: refusal of medical care, disability support, employment and compassion and, at times, even result in death by disease and suicide.

These symptoms are non-discriminate can affect young, old, black, white, rich, poor and can often appear 'invisible' because the correctly revealing laboratory tests are not run. People are often sent from specialist to specialist. On average it takes up to five years for a 'wastebasket diagnosis'. The people suffering are often told "it's in their head' and are sent to psychiatrists. Some can end up in mental institutions or homeless. Sadly, even though there may be up to 1/3 of the United States now suffering, most paradoxically, they are made to feel alone by those closest to them and those responsible for their medical wellbeing.

These group of illnesses are now likely one of the most prevalent, disabling and underdiagnosed in the world. Stigma still maddingly prevails. Disbelief kills.

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

Names over time have included:
⦁ Akureyri Disease
⦁ Benign Myalgic Encephalomyelitis
⦁ Chronic Fatigue Syndrome
⦁ Chronic Fatigue Immune Dysfunction Syndrome
⦁ Chronic Infectious Mononucleosis
⦁ Epidemic Myalgic Encephalomyelitis
⦁ Epidemic Neuromyasthenia
⦁ Iceland Disease
⦁ Myalgic Encephalitis
⦁ Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
⦁ Myalgic Encephalopathy
⦁ Post-viral Fatigue Syndrome
⦁ Raphe Nucleus Encephalopathy
⦁ Royal Free Disease
⦁ Tapanui Flu
⦁ Yuppie Flu (pejorative)
⦁ Long COVID
⦁ COVID Long Hauler
⦁ P.A.S.C.

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

This page invites readers to upload their details and make a suggestion:

https://www.onenamecampaign.com/copy-of-psa

"the one

"The One Name Campaign endeavors to identify the best one medical name for a group of long ignored, related post-immune activation illnesses (M.E., Chronic EBV, Long COVID, etc.). You are invited to play an important role in the first worldwide effort of its kind to rebrand a heavily stigmatized disease that affects millions of people."

First Name
Last Name
Email
Phone

What NAME do you think is best and why? Give us your suggestion!"

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

Another page:

https://www.onenamecampaign.com/copy-of-psa-1

"what the doc

This satirical documentary expose follows Chesley, the film's director, on One Name Campaign, a cross-country mission to rebrand what is likely the most prevalent yet underdiagnosed disease in the world.

We brand companies.
We brand products.
Watch this documentary brand a disease.

 

https://www.onenamecampaign.com/copy-of-impact

"tri-cycle strategy

"The strategy is built on the foundation of three - like a tricycle!

We are determined to address the harmful stigma and stagnancy of funding for research and resources head on. This means that we need to be very innovative in our approach to a decades-old worldwide systemic issue.

1st: Public Service Announcement (PSA): An indelible PSA can make a massive targeted impact on clinician education and general public awareness. This shift in consciousness around those suffering with this illness can not only drive better clinical care and public compassion - but can ultimately be the platform for an increase in research and resource funding.

2nd: The One Name Campaign (impact campaign): Stigma has proven an insurmountable obstacle for decades. Now, the public has a chance to address it and deconstruct it directly. A first of its kind public rebranding campaign on a mission to identify the best one name for this group of related illnesses. By addressing the root of stigma, the campaign strives to change the current 'bad' brand - hysterical, malingerers and weak - to the future 'new' brand - lovable, strong and worthy.

3rd: Documentary: A powerful piece of cinema combined with lovable characters has the power to spark a movement. This evocative documentary expose takes the audience on the inside of lives lived in the shadows. Seen through a critical investigative lens, it pulls the thread on their shared stories by following the pursuits of the One Name Campaign as it adventures across the United States.

All of these wheels work together to move this cause forward into pop culture, into conversation and into change."

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

"By addressing the root of stigma, the campaign strives to change the current 'bad' brand - hysterical, malingerers and weak - to the future 'new' brand - lovable, strong and worthy."

Yuk!

 

It doesn’t make any sense. Lumping together ME and LC with environmental medicine and post-trauma syndromes? With the aim of avoiding “wastepaper diagnoses”? But that’s precisely what they are going to achieve: a term with very loose criteria which will be catnip for FND clinicians and researchers.

It should be bleeding obvious that pwME are best served by tight diagnostic criteria which mandate PEM and exclude TATT. This whole idea is loopy.

And “lovable, strong and worthy”. Ugh indeed.

 

I cannot find any page on their website which clearly sets out what their intentions are but I assume it is something along these lines:

There are a number of forms of dementia, here are just a few examples:

Dementia due to Alzheimer disease
Dementia due to cerebrovascular disease
Dementia due to Lewy body disease
Frontotemporal dementia


In ICD-11, these various types are assigned unique codes under the parent class: Dementia (which does not have a code, per se). Neither, for example, do many other terms, for example: Neurocognitive disorders; Autoinflammatory disorders; Primary immunodeficiencies, and so on. They are "parent" classes which list specific, coded-for terms beneath them.

There are also sub codes for various sub classes, for example:

6D80 Dementia due to Alzheimer disease

• 6D80.0 Dementia Due to Alzheimer Disease with Early Onset
• 6D80.1 Dementia Due to Alzheimer Disease with Late Onset

6D85 Dementia Due to Diseases Classified Elsewhere [because some diseases which may result in forms of dementia are classified in different chapters] for example:

• 6D85.0 Dementia Due to Parkinson Disease
• 6D85.1 Dementia Due to Huntington Disease

I think this campaign is calling for a clinical umbrella term under which Long Covid, ME/CFS, chronic EBV (and whatever else they think should be gathered under this term) can be "rebranded" or categorised. Then that category name would become the disease term that would be promoted for use by patients, clinicians etc, rather than the existing, specific disease names.


What providers and payers require is specificity and billable codes.

But the parent class, even if it already exists within ICD-10-CM and in other WHO terminology and classifications (and if it didn't, a new clinical term would need approval to be added) won't necessarily be a billable code, per se.

So providers and payers would end up using the more specific, coded-for terms which they are already using in order to get reimbursed.

They haven't thought it through.

Edited to add: you also have the problem that currently, LC, ME/CFS, Lyme disease etc are classified within different chapters of ICD-10-CM and other mandated WHO classifications.

 

Some parts read like the intent is to find a name for a category of chronic illnesses that are triggered by infections. Other parts read like the idea is to replace the current names and diagnostic entities with a single new one. At the very least the whole thing can be criticized for lack of clarity.

Then they add trauma to the mix for some insane reason and invite a quack. It's not in our interest.

 

Exactly, it's a dog's breakfast. Or perhaps that should be a lame horse. Until they can set out their stall with clarity, I don't intend to give it any more of my time.

Edited to add: I've been sent some brief comments on the content of the launch video - it sounds shockingly dire and unscientific. Shame there isn't a transcript available. "Narcissistic parents", anyone?

Let's hope this "horse with no name" is given a swift burial.

 

Wut.