Opinion: Why I support the use of ME/CFS as opposed to any other name

Andy

Andy

Senior Member (Voting rights)
This topic came up recently in some patient representation work of mine, and I thought that sharing my thoughts here might be useful. I understand that some people will have differing views on this subject, this just happens to be my view. This has also taken me at least a couple of weeks to put together, thinking being hard to do at the moment, so I won't be surprised if there are corrections still to be made.


Why I support the use of ME/CFS as opposed to any other name

Both CFS (Chronic Fatigue Syndrome) and ME (Myalgic Encephalomyelitis) as names are problematic. While fatigue and muscle pain (myalgia) are part of the range of symptoms of ME/CFS, neither name even hints at the most disabling aspect, PEM. And with no good evidence to show that there is inflammation of the brain and spinal cord (encephalomyelitis) occurring within the ME/CFS patient population, ME is arguably more of a misleading name than CFS is.

SEID (Systemic Exertion Intolerance Disease), as proposed in the IOM report, at least tried to identify PEM as the most important feature, however the problem is that PEM is not exertion intolerance as is more widely understood as an inability or decreased ability to perform physical exercise at the normally expected level. One day CPET studies show that patients are able to perform at expected levels, and that it is only with repeated testing (i.e. two day CPET studies) that issues show up.

So, given that;
  • the major institutions such as NICE, CDC and others have adopted ME/CFS
  • that the vast majority of patients, at least in the UK, will have been diagnosed with any or all from CFS, CFS/ME, ME or ME/CFS
  • and that there being no good evidence that, for the average patient, what name was used indicates a different disease

I believe that using ME/CFS as a placeholder name is the best, or least worst, way forward, while we wait impatiently for research to determine the core mechanisms of the disease.

There are two central reasons for this, practicality and inclusivity.
  • As ME, CFS and ME/CFS have all been used to describe the same disease, continuing to use ME/CFS is a practical solution to acknowledge all possible names.
  • Choosing to use either CFS or ME sets patients with the other diagnoses as separate for no good reason, and therefore ME/CFS is an inclusive solution for the whole patient population who have suffered a lot of exclusion in other contexts.


Edit: Spelling is hard.
 
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The number of different names we have is already causing confusion in the general poulation as to what our illness is. Changing the name to another without real justification will just lead to further confusion which will be damaging to us. I think we should just stick to what we have now until the science comes up with something more definitive.
 
I agree strongly. :)

One additional reason for the name ME/CFS: With a long and weird acronym like this I think that the tendency is smaller for people to focus on the actual meaning of the constituent terms. So that avoids a little bit of the problem with the two misleading terms ME and CFS.

Generally I think that it is a lost cause to find a name that actually describes the condition. It would have been better to call it something non-descriptive. My favourite is Akureyri disease just because it looks nice. But I think it would be a mistake to try to introduce yet another name.
 
I agree that there's no point in changing it right now. However, I did--just last night--come up with a possibly useful alteration: ME/CN-NFS, meaning Chronic Not-Normal Fatigue Syndrome. I was feeling normal fatigue after shoveling snow for a couple of hours, and I wanted to scream in some researcher's face "It is not chronic normal fatigue!" Making that distinction clear in the OMF guidelines and other official documentation might reduce waste of resources on something that ME/CFS isn't.
 
Good argument well put Andy.
I also found JE's argument in his paper persuasive.

Do however disagree.

CFS has to go. The confusion and creation of confusion around this term and Chronic Fatigue along with chronic fatigue, is more than unhelpful it's extremely destructive. To the relationship with patients and their doctors. Its a barrier to access to medical investigation for the symptom of chronic fatigue.

A patient cannot report fatigue new onset or worsening and have this taken seriously. This term, this experience, is already accounted for in the name of this patient's pre existing condition. No double accounting.

We know fatigue can point to cancer or heart disease and anecdotally (perhaps from small studies?) we know it seems more common for people with ME to die earlier than the general population. Only sometimes from suicide. But even then a major reason cited is lack of access to adequate medical care.

To mark any patient with fatigue as foundational to their condition or rather the very definition is to deny them the protection of fatigue as red flag an early warning for their future health.

Fatigue in a list of symptoms carries some of this risk of course. But nothing like the same level.

The name is like a slurry spill we have to wade through and be splattered with, (or if we're lucky side step but only with the permission of the doctor in question) every time we seek a consultation.

If doctors proclaim that they cannot take 'M.E." seriously because of what it stands for, they are perhaps less willing to admit that their preference for CFS Fatigue & Co (plus ME/CFS if they really must) over ME is not simply the unpalatability of ME, but the pallet ability of CF(s) as a tool for refusal.

You're chronically fatigued, have been for years, because you have Chronic Fatigue. We know it's your Chronic Fatigue because you're not dead yet. More or less, this conversation reoccurs over and over.


Edit: typos missed sentences.
 
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I wasn't taken more seriously when the gynae asked me if I had any medical conditions. I said I had myalgic encephalomyelitis and she threw her arms in the air and asked 'what is the shorter version?"- I said CFS. She scribbled something down. I'd love to know what she wrote b/c I don't think she knew what CFS was or even wrote that down tbh.
 
When people have been living with a specific diagnostic label for some years, be it either ME or CFS, they can feel got at if others say that name is somehow invalid. Given whether someone is diagnosed with ME or CFS is largely a historical or geographical accident, the combined term ME/CFS circumvents this. We also see this in debate around the term FND, in that when it is argued that FND is a problematic term, those with the label understandably may feel the reality of their symptoms is under attack.

A further advantage of the hybrid term ME/CFS is that it circumvents the unhelpful belief held very strongly by some that there are two distinct conditions, one ME that is a biomedical condition and the other CFS that is psychological.
 
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