The argument that Covid doesn’t cause ME because they have separate ICD/WHO codes

I saw this argument being made on Facebook. I don’t think I’ll challenge it under my own name so thought I would do so here.

I don’t find the argument convincing. It proves little. By the same logic, Covid doesn’t cause a huge lot of outcomes as they have separate ICD/WHO codes.

Also I don’t think we should have to accept something like this as fact because of a particular classification by one body. Medical bodies aren’t foolproof. Not everything they say at a particular point in time is necessarily fact. One would think people in our community should be less likely to fall into this line of thinking given how CBT and GET were, until recently, declared as safe and effective therapies by eminent bodies. Though perhaps some in our community in the CFS-is-not-ME & ICC-is-the-only-true-criteria "group" conveniently ignored this state of affairs as somehow not relating to ME.

 

That argument reveals such a failure of reasoning that I'm not even sure how to address it. I'm sure high blood pressure and stroke, or influenza and pneumonia have different codes, but nobody would use that to argue that one doesn't cause the other.

 

Thanks for this @Dolphin

Interesting.

I am not at all an expert about the process WHO goes through regarding coding.

However, IMHO, it's too early to say COVID does not cause ME. We've only just begun, as the song says to study COVID.

I'm completely guessing here, but perhaps the coding was assigned as it is, as this is just the usual procedure. And, such a significant illness would need that recognition and categorization.

There are ICD/WHO experts on the forum who can probably speak to this.

About your last sentence in your intro: regarding my own opinion of ME vs. CFS, I've always viewed them as the same disease. I was diagnosed with CFS, but later on learned about ME, fit all the criteria for ME, and was finally seen by a ME specialist who confirmed the ME diagnosis.

My go-to case definition is the Canadian Consensus Criteria, and especially its Overview. Although I do agree with the ICC, but just find the CCC more workable for me.

I don't understand your last comment about ignoring "this state of affairs". Probably my brain fog....

I say I hate the term "CFS" because it causes such misunderstanding and stigma, but I do believe CFS and ME are the same disease. Others of course may not.

 

Most of us would have learned that esteemed medical entities can be wrong from how CBT and GET were called (evidence-based) safe and effective therapies for the condition when the evidence wasn't there.

However if one thought that CFS is completely different from ME (or ME/CFS), one might perhaps think that there was validity to the claim from esteemed medical entities that CBT and GET were called safe and effective and hence not learn the lesson that esteemed medical entities' rulings may be wrong. However proponents of the view that Covid can't cause ME are sceptical of so many other claims that they are not consistent in the view that esteemed medical entities' should be simply accepted as fact.

 

This has been proven by examining the flaws in the psychosocial research: no validity to the claim GET and coercive CBT are safe for ME, CFS, or ME/CFS. I completely agree and always have.

I've had CBT counselling, and exercised. NOT a treatment or cure for ME, CFS, or ME/CFS.

Absolutely agree esteemed institutions and individuals can be wrong.

As @RedFox said, just because two diseases are in separate categories doesn't mean they can't affect each other. Right now ERs in Canada are swamped by especially children who started out with a viral infection, and now have a bacterial infection.

Thanks for your explanation.

 

I am fixated on "cause". As in Long-Covid "causing" ME- In scientific term I am not sure we can advance this, this early.

There are a few "wonky" issues to iron on:

1) The LC case definition is as wide as can be. It requires to have caught Covid, and to have residual symptoms 3 months later. Long-Covid represents a large spectrums of diseases which includes organ damage, heart and brain inflammation, respiratory troubles, strokes, DVT and coagulation issues, neurological deficits, just to name a few. Then we have to acknowledge the anxiety, depression and PTSD from ICU care and trauma from isolation and personal situations.
Some will believe that this represents Long-Covid too, whether it is self- diagnosed or acknowledged by a health care professional.

2) Unfortunately there will be people out there refusing a ME/CFS label because of the stigma such diagnosis carries, whether it is coming from the patient themselves or from a health care professional refusing to give their patients a ME/cfs label.

3) There seems to be a likelihood that at least some patients with LC meet the CCC case definition- which includes PEM; but how many? Has there been rigorous epidemiological studies done in that regard, that would be more than self-report and requiring a physical exam, in-person contact with a knowledgeable doctor?

4) Unfortunately ME still remains a symptom-based case definition and we know that we are heterogenous, and we may well have several subgroups or even different pathologies (if we can nail an ever-elusive biomarker and mechanism of disease).

5) The opportunity to study LC and its mechanisms of disease still exists and is alive and well (and generously funded) providing that the researchers have an understanding that post-viral illness is not new and with the opportunity to compare pwME as a cohort of long-term illness from a different virus or disease onset.

6) I am not sure I would debate all of this on FB. I do not feel the need to convince other patients whose mind is already made up or who's mind has been had by their health care professional.

 

I have only skimmed this thread not up to reading everything, but as Redfox & Sean say

The argument is just daft. It makes no sense.

Codes are like names, they denote different things. Saying A cannot cause B, because A is different from B, is absurd. Its like saying smoking doesnt cause lung cancer because smoking is not lung cancer. Or that driving while drunk cannot cause a car crash because driving drunk is not a car crash. Or that ice cannot cause a person to slip and fall, because ice is neither a slip nor a fall.

 

They are used interchangeably by M.E doctors, including Dr. Anil Jain, one of the authors of the 2003 Canadian Consensus Criteria for Myalgic Encephalomyelitis who diagnosed me in 1992.

My dx is CFS too but I haven't had to deal with this label personally for decades.

 

Going back to the title of this thread. I feel LC should have their own code until we have diagnostic biomarkers for PEM.

 

The title doesn't suggest "LC should have the same ICD/WHO code as ME" though. The title is explaining that someone people have expressed the opinion that because Covid has its own ICD/WHO code, it then can't cause ME, because ME has a different ICD/WHO code.

 

My diagnosis was CFS in 1991. It is rare I have to deal with the stigma of the harmful term CFS, because I never provide it as my diagnosis, while in conversation with health care workers or others. However, that very unhelpful label is on old reports.

(A few months ago I told a young physician I have myalgic encephalomyelitis. They had of course never heard of it, despite being fairly newly trained, and practising as a family doctor.)

 

My GP of 35 years retired last year. I have not met my new GP yet, my appointment was cancelled last month. It'll be interesting to know her opinion on CFS which is still listed as my dx. I most likely won't have to discuss it with her unless there is s drastic change in my health.

 

The fallacy of codes being definitive of illness has long featured in ME/CFS advocacy where the location of ME in the ICD schema was within the neurology section - from the late 1990s when advocacy found a place on the Internet there was an enduring but false proposition that ICD classification was equivalent to an affirmation of diagnosis, something which it certainly was not.

An area of confusion however results from the interrelated history of the ICD with the dreaded DSM. I'm unclear what the state of play is between ICD11 and DSM5 but I believe this is an accurate history up to 2013: Two visions for understanding illness: DSM and the International Classification of Diseases - so while it is true to say about the non psychiatric ICD codes that they have no diagnostic power (and by extension no basis for assessment of pathology !), by contrast those codes for psychiatric conditions which have direct DSM5 equivalence then these are by association diagnostic and arguably might have some relevance to pathology.

A further complication is the country specific derogations of the ICD, notably the US where the codes are used for charging ($) purposes and so are directly linked to individual diagnoses, although even there this provides no sound basis for assessment of pathology where the pathology is unknown or only partially understood.

So yes, the Facebookers' line of argument is fundamentally flawed but the fallacy is in part at least, long standing.

However I'd also take issue with the whole proposition of infection being 'causative' of ME/CFS - arguments here: https://www.s4me.info/threads/a-random-thought-on-contributing-causes-to-me-cfs.31005/#post-453269 . Without evidence of pathology, claims whether negative or positive for sources of causation are misplaced, notwithstanding that reasoned hypotheses are always going to be needed for research.

 

ME is skirted around during most of my encounters with health care workers. I imagine they do see it on the form I've filled out. They don't ask about it.

Once in a while I used to provide abbreviated/valid info (e.g. CDC etc.) about it, but got tired of the eye rolling.

IMO it's an incredibly slow road medicine travels in gaining knowledge.

 

I believe that those who experience Long Term Symptom Exacerbation deserve a separate diagnosis such as SEID, but I do think it is possible that Covid can cause either CFS (CDC 1994), ME (ICC 2011), or SEID.

 

At least in the US ICD-10-CM, the instructions for coders specify that ME/CFS and LC should both be coded if applicable

The entry for ME/CFS (and ME and CFS - G93.32) includes the explicit instruction to "use additional code, if applicable, for post COVID-19 condition, unspecified (U09.9)."

And the U09.9 code for Long COVID includes the instruction to add the code for the "specific condition related to COVID-19 if known." Because LC is an umbrella term, this could be any of a number of conditions.

Edited to add
The ICD-11 code is RA02 Post COVID-19 condition and includes the coding note
"This optional code serves to allow the establishment of a link with COVID-19."
So far, I haven't seen any other coding instructions. While not as explicit as the ICD-10-CM, this note suggests that it could be used as an additional code in the way that ICD-10-CM uses is.

 

ME/CFS can be triggered by a range of viruses or no known virus, with glandular fever/mononucleosis due to an active EBV infection being one of the more common.

Glandular Fever does not (I assume) have the same code as ME/CFS but that has no relevance to the relationship between the two. Similarly at the start of the pandemic many predicted that Covid-19 would be associated with triggering ME/CFS for a significant number of individuals, as other SARS viruses were already known to be associated with higher rates of subsequent ME/CFS than infections due to most other viruses.

What we are seeing is that a significant, but not yet adequately quantified, percentage of people with Long Covid meeting the criteria for an ME/CFS diagnosis, though bizarrely many are missing this link because they believe Long Covid is a unique condition rather than a range of post viral effects including for some what could be diagnosed as ME/CFS.

ME/CFS is diagnosed on the basis of current symptoms and it’s coding is not contingent on whichever virus appears to have triggered it.