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

There's another site page that is listed on Google, with a Contact box and field for name suggestions, which doesn't appear to display for me when I'm on the site:

https://www.onenamecampaign.com/onename

We invite you to play an important part in the first worldwide effort of its kind to 'rebrand' a disease.​

This is a golden opportunity. Together, we can define how millions of people who suffer greatly with these invisible illnesses are finally seen and treated.​

We are their voice.​

The One Name Campaign endeavors, through public conversation, to identify the best one medical term for a group of 'related' post-viral/post-trauma illnesses.

​

"post-viral/post-trauma"?

The site domain was originally:

https://www.movieaboutme.com › copy-of-contact-me

so this is probably an old page from when the site was using the earlier domain name.

 

This 'One Name' malarky is a pointless and damaging attention and resource diverting exercise. How on earth did it get legs? Please we need to stop it in it's tracks.

 

How, though?

While OMF, SOLVE M.E. and #MEAction are backing it, for some, that will add a veneer of legitimacy.

 

Rebrand is just crass, - "Condition X " anybody ? And 'worldwide' where the world is that of the Baseball World Series - somehow never bigger than North America ?

 

I despair of #MEAction. They style themselves as a "grass roots" organisation but we witness them blithely supporting proposals for multiple changes to ICD-10-CM when there's been no prior public consultation. Now they're lending their name to a project, the Director for which invites a presenter and supporter who asks his audience: "...What if your Long Covid isn't from infectious disease; what if your Long Covid is from living with a narcissistic parent and not having what you needed from your parent..."

How do you begin to unpick this? Is this the "post-viral/post-trauma" angle?

Is this proposed umbrella term expected to serve as an umbrella for LC, ME, CFS, chronic EVB, chronic Lyme, Fibromyalgia and "many more" but also for "Long Covid" due to damaging parenting, because hell, we need to be inclusive of everyone now?

 

Disease most likely to be misdiagnosed with MS:
Fibromyalgia
Neuromyelitis Optica Spectrum Disorder(NMOSD)
Small Vessel Ischemic Disease
Sarcoidosis
Vitamin B12 or Copper Deficiency

Diseases Somewhat Likely to be Misdiagnosed with MS:
Migraine
Spondylopathies
Conversion and Psychogenic Disorders
Vasculitis
Acute Disseminated Encephalomyelitis(ADEM)

Diseases Less Likely to be Misdiagnosed with MS:
Lyme Disease
Neuropathy
Lupus
Stroke
Sjogren's Syndrome
Myasthenia Gravis

You can read the details.
https://www.everydayhealth.com/mult...ditions-commonly-mistaken-multiple-sclerosis/

 

We have not identified a biomarker for PEM so that leaves us open to interpretation at this point.

 

Thank you, Trish. I hope you receive a response. This would have been an ideal space for the Director of this project to have gained feedback in advance of deciding whether to take this project forward.

 

see https://www.s4me.info/threads/news-from-the-usa-united-states-of-america.20771/page-2#post-483333

 

I concur with this proposal being very problematic. I have reached out via their webform about my concerns about the "one name" proposal.

I received a reply thanking me for my input and Chesley seemed open to further discussion. The response has some personal information in it, so I am hesitant to share the full response. She did say:

"What we want to do is create an umbrella term (many are already being unofficially used) for a group of illnesses that share morbidities in common - and the fact they can all be triggered by infection."

I am hoping to meet with Chesley so I can write an article that is based on more facts than are currently available. There are far too many unanswered questions.

I agree that any new label would need to have a corresponding ICD code for it to be clinically useful. Each of these conditions (that already have ICD codes) needs to have clearer definitions. I see no way to create a "clear definition" for a label that encompasses the wide variety of diseases they have listed let alone "and others".

If there is a huge campaign for "rebranding" lumping all these conditions together under one label and patients go to their doctor saying I have "xyz", the doctor will look for a code... there isn't one. So that leaves doctors with no protocol to follow.

EVERY disease label should have a treatment protocol and an ICD code. We need more clarity - not more muddying of the waters. ME already shares an ICD code with CFS and other patient groups - in the US these are all the patient groups lumped under G93.32 by EPIC (one of our biggest health record systems used by doctors).

ME

● ME (myalgic encephalomyelitis)

● Myalgic encephalomyelitis syndrome

● Benign myalgic encephalomyelitis

● Encephalomyelitis, epidemic myalgic

● Myalgic encephalomyelitis

● Epidemic myalgic encephalomyelitis

CFIDS

● Chronic fatigue and immune dysfunction syndrome (D89.9)

● CFIDS (Chronic fatigue and immune dysfunction syndrome) (D89.9)

CFS

● CFS (chronic fatigue syndrome)

● Chronic fatigue disorder

● Chronic fatigue syndrome with Fibromyalgia (M79.7)

ME/CFS

● Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

● Myalgic encephalomyelitis/chronic fatigue syndrome

Post-COVID / Long hauler

● Post-COVID-19 syndrome manifesting as chronic fatigue (U09.9)

● COVID-19 long hauler manifesting chronic fatigue (U09.9)

● Post-COVID chronic fatigue (U09.9)


We need more clarity for how to diagnose and treat ME like what is offered in the ME IC Primer (Carruthers et al 2012). Lumping it in with other patient groups has been impeding getting adequate treatment protocols and has been impeding quality research for decades.

If the purpose is to bring awareness to all the marginalized chronic illness patient groups who have been harmed by vague criteria, I guess we could just call that LONG list of patient groups "marginalized chronic illnesses"... A nonbillable generic term.

But I am at a loss to see how that is helpful to the patients getting better care from their doctors. The doctors already know there is no where to send all these patients... they know we are marginalized - because the doctors who do treat us are also marginalized.

 

Janet Davoe has said on Twitter that she and Ron believe it is too early to do this [the One Name Campaign].

 

Thanks for the link, Sly Saint.

 

Hadn't heard of this and only had a quick scan through so far. After thinking of other things from reading comments here in reverse-chronological I then 'wondered': is this just about the situation that neither the name of CFS (or anything fatigue bla) nor ME (because medics use/see the 'there is no evidence of brain inflammation' as a point of annoyance for them) is right?

But I don't think they've gone about this right, I agree, if so. Given this seems to be a cyclical discussion point then I expected that next time it properly occured it would be people who had made a point of learning lessons from history and where uptake hasn't happened.

I don't know what it is... but the creating by committee would be an issue - because the 'academic' names have catches, e.g. I can see how the prhase 'intolerance' would be twisted against us by the nasties for SEID even though in the truest form of its combined words I feel it describes ME/CFS better than alternatives

And I think we need to think how you get onboarding and uptake (and maybe just finding the 'best' or 'significantly better' name is the part in that because when the shoe fits, who can deny it... traction occurs) without a process that in itself could thwart the usefulness of the name itself (design by committee, often normally a committee who aren't pros in such matters so not thinking about e.g. how it is read and perceived by the wider public etc). My gut says that in developing the 'brief' for what any new name might need to carry for exmaple as a brand and descriptor e.g. of issues/catches/backfires to avoid then these key stakeholders should have been involved to make the most of that historical experience and indeed to limit the remit appropriately of what ti will and won't cover. A hands-up vote at the late stages doesn't use that experience at the right point etc.

Anyway I don't have a problem with the theory of a better name. I do think that might aid in some of the politics in overlap with e.g. LC, but don't think that we can lose the finer-grained information that is important to science...

and so is this really trying to 'One name' and if it isn't then why isn't it, already at this stage, using clearer terminology that it isn't given the risks and problems that would cause (agree with the MUS arguments, there is a reason the BPS like to lowest common denominator)?

 

Thanks I wish you luck and would be interested in any updates that you have

 

Agreed. Given the horrific paternalism that we've had historically then I think that any allies should be keen to make sure they are 'leading the way' on attitude of who might be given power over us, their behaviour and in making sure there are limitations and safeguards - mainly in order that we can then call out the other side when they don't do this, but also because history shows that we do need it.

All sorts of pressures and powers can be involved here that influence things, including getting short of time and having to compromise and deal with different groups with different interests I think that they will be open to people being in a very difficult position without the protections for those individuals themselves to be free of accusation by having really good rationales behind choices, limits on and appropriately divided power and protections and much better drawn protocols and decisions on how they will be transparent so they can manage expectations there - although it might be early stages for some of these and of course they will need to be pragmatic as much as well-thought through to counter common issues that might be unique to this area.

I can't help but think of some local issues (nothing to do with ME) I've heard of recently with people in local areas inadvertently abusing processes to claim 'consultation' by having surveys for events that are filled out only by their friends and not those who will find the events are outside their home or causing them issues, and not having accessible meetings etc. It seems rife that in a rush to get things moving, and because 'does anyone else want to help or do the work' can be used as the excuse things people might think they are doing 'for' end up being done 'to' all too easily.

 

@bobbler wrote:

It remains unclear to me whether Chesley is seeking to achieve a) or b), or something else:

a) to crowdsource a single medical term which would serve as an umbrella term under which a number of existing disease terms would be categorised. To promote the use of the umbrella term, internationally, to patient communities, clinicians etc instead of the terms Myalgic encephalomyelitis and Chronic fatigue syndrome in the context of research, care etc.

It's unclear whether Chesley would be seeking consensus and acceptance of the crowdsourced umbrella term amongst international researchers, international medical associations and adoption and implementation of the term by NCHS/CDC, WHO, SNOMED International etc. It's also unclear whether Chesley would be proposing an ICD code for this term, or whether she would be seeking to have it incorporated into ICD classification systems as an uncoded-for "parent class".

So, a) might be intended to be structured something like this:


New crowdsourced umbrella term (NCUT)

Post-acute Sequelae of COVID-19 (PASC)/Long Covid//Long Haulers
"Post-viral/post-trauma illnesses" (unclear what "post-trauma illness" means to Chesley)
Myalgic encephalomyelitis
Chronic fatigue syndrome
Chronic EBV
Fibromyalgia
"many more" (as yet unspecified by Chesley but may include chronic Lyme disease)​

b) to crowdsource a single medical term which would serve as an umbrella term under which a number of existing terms would be categorised but which is also intended to absorb the existing terms: Myalgic encephalomyelitis and Chronic fatigue syndrome and serve as a replacement for these terms. Although the other terms she cites as "related" would keep their existing terminology.

This would require the obtaining of an ICD code for the umbrella term for reimbursement. It might also mean new codes for the "related" terms and chapter relocations. Or using a coding structure like:

XXX.1 New crowdsourced umbrella term due to Post-acute Sequelae of COVID-19 (PASC)
XXX.2 New crowdsourced umbrella term due to Chronic EBV.

while leaving the existing terms in their current chapter locations.

It would also create issues for ICD data collection and data disaggregation going forward, as new ME and CFS diagnoses would now be buried within the NCUT umbrella term. (Compare how ICD-10-CM's CFS was historically buried within "R53.82 Chronic fatigue NOS".)

Additionally, the coding industry and insurers demand specificity and may not consider a coded-for umbrella term that also replaces ME and CFS sufficiently specific for reimbursement.


So b) might look something like this:

New crowdsourced umbrella term (NCUT) (to be coded for instead of ME and CFS; she does not mention SEID which also has an ICD code now.)

Post-acute Sequelae of COVID-19 (PASC)/Long Covid//Long Haulers
"Post-viral/post-trauma illnesses"
Chronic EBV
Fibromyalgia
"many more" (as yet unspecified by Chesley but may include chronic Lyme disease)​

Or perhaps she is looking to replace all of the "related" terms with a single umbrella term. The WHO would not entertain that.

If I've misunderstood the intentions, then the fault lies with the failure to set out clearly on the One Name Campaign website amidst all the "rebranding" hype what the objectives of this project are.

I would add that ICD-11 is being released in five-yearly 'stable' versions. Although a new release is published annually, you cannot readily move an existing code under a new parent code (or to a new chapter) as this would constitute a major change, which is only permitted according to the Major Change schedule.

WHO, 2020: "Proposed changes to the classification that would result in a code change are not permitted. Changing the primary parent of [an] entity would result in [the] entity needing to have the code changed, as entities are assigned based on their primary location."

Also, the WHO's International version of ICD-10 cannot be updated now as it reached the end of its update and revision life in 2019. Much of the world still uses ICD-10 and has not transitioned yet to ICD-11.