issue of 'chronic fatigue' without the syndrome being used by media and others and probably pwme

I was looking for a thread on 'the name' (and failed) and eventually convinced myself to go with a fresh post and it might be combined with one later.

This is NOT intended to be a thread about discussing which name we should use in the ME vs CFS vs others 'broader arena' (see end of this post).

But about focusing down on the impact and issues specifically of the terms involved in CFS - and the 'syndrome' part. And what it might be driving.

I'm noticing that on eg MEA facebook from the current inquiry into Maeve's death that quite a few people are commenting that the term 'chronic fatigue' is being used 'without the syndrome' even when the context is at that level of seriousness


So even in those situations when everything should be as grown up as can be it is perhaps so divisive it becomes in itself a distraction compelling behaviour and attitude in others. Or people aren't realising a word count decision has pretty big impacts on care itself.

I think that there are reasons for this (with the name) that go beyond habit etc that do need to be spelled out. Like 'syndrome' seeming rude and having inference given the context around ME/CFS.

But also explaining to others what the problem is of using it 'without syndrome' misleading people to think research based not on our condition, but 'well people with fatigue' is somehow relevant - which most 'others' don't know about, but need to

 

Sidenote, so yes I think we all agree that every term is potentially loaded for someone in both ME and CFS, but that changing to something new risks that just being branded as 'the new conversion disorder'. And ME/CFS got settled on in the new guidelines for a reason.

I think what I'm hinting at is rather than trying to come up with a magic bullet alternative, would there be benefit in acknowledging we know that 'ME' makes some physicians squeamish, as does the term syndrome in the context of all the past inferences from eg CHalder and the like of 'false beliefs'. Listing the impacts levied at us, that each bit of these names can have.

If we are stuck at the point of nothing ideal for all. Can we at least (because noone is going to want to allow the conversation to happen 'lest it be awkward' in an appointment) have a page pointing out for example why ME/CFS is important to be used (new guideline vs old nonsense) instead of CFS or CFS/ME from a medical implications perspective.

And that all of us are going to have to get past this imputed awkwardness, and that will require acknowledgement of the issues of both sides so that we stop having almost every moment of truth polluted by one side wanting to use chronic fatigue or 'CFS' or some variation and the other ME or ME/CFS.

And which gets used being perceived as a power battle (trying to force someone to say they believe in 'ME' - and all the ambiguity inherent in that, whether the issue is the name with encephalomyeli.... they don't believe in, memories of the 'yuppie flu' days when ME was used, or them thinking the whole illness of ME/CFS not being hysteria) instead of about 'what illness are we talking about'.

And the question of whether that actually being because one side really is talking about another condition. Which has been contrived so we will almost never be able to get a satisfactory and reassuring answer to that.

That the illest of people end up with consultations that are polluted by that crap instead of getting care even on another very treatable medical issue. They used ME/CFS to point to the correct medical guideline, not get stuck in some pseudophilosophical debate due to someone else's feelings.

It's a call for grown-up ness. But a need to acknowledge the elephant in the room. And remind / tell people that it isn't just their feeling awkward that is ending up being the actual consequences of this.

Instead of the nonsense hiding behind a 'it's only a name' (and we have a word count to think about) problem. People manage to correct their language for many other things when its importance is underlined.

By spelling out that these different terms [chronic fatigue vs ME/CFS] are in fact different illnesses, and also come with different concepts and baggage. That this issue is not consequence-free, and listing what it is doing leaving it un-sorted. ie the lack of discipline on name usage is being used as a perpetuator of problems [like people looking up info on 'chronic fatigue' or CFS or CFS/ME ending up with papers that tend not to be correct, particularly whilst certain clinics aren't changing because they say 'we treat CFS/ME not ME/CFS' etc]. And listing what those are so at least people can't claim they are unaware of the consequences.

 

I think colloquially people say “chronic fatigue” because it’s shorter. They should be saying ME/CFS which is shorter still.

I see the Daily a mail in one report today did a side panel “explainer” of Chronic Fatigue which said the available treatment on offer is CBT and Graded Exercise Therapy and sourced the NHS and ME Assoc. AI might as well write articles, at least it wouldn’t seem so personal that a person fails to report things in an accurate fashion.

 

Not in syllables though. ME/CFS has five versus four in chronic fatigue, so takes longer to pronounce. Part of the reason I like ME (not that I say it out loud to anyone, just feels less bulky).

 

I agree. I think word count matters too with any articles. Do we think they go with chronic fatigue to 'expand the audience' because people think they know what it is or think they know someone with fatigue?

And yes it is a plain failure we have that happenning still with these explainers pointing to claims of GET and CBT treatment. Any article just works as advertisement for the BPS stuff that causes the harm itself with that in place.


I also used to use chronic fatigue and leave the syndrome off because to laypersons it made it sound like, at best, it meant 'like/idiopathic/thinks they have chronic fatigue' ie the syndrome part minimised even the fatigue. So I don't know whether some of those who said it leave it off to be kind/avoid offence.

Plus of course it also insinuated madness / hysteria - and I use that term rather than mental health because that's being used to conceal the nastier misogynistic weaponising of accusing someone of 'not thinking right' as if it were about concern for their health (and it isn't).

I suspect also that people think 'care has moved on' not realising they are the bigots (not the enlightened from 'yuppie flu days') because the straw man of the false beliefs 'CFS' has been replaced by 'chronic fatigue' clinics that 'also accept those who had cancer and now have fatigue' (who knows if the clinics help those with cancer fatigue either if we are honest about their methods).

.. A step forward because 'at least these acknowledge the fatigue is real' rather than hysteria. Validation they know it was serious and caused by a virus 'because cancer is bad too'. They just forget that the cancer got treated by medics first.

They just get so distracted by thinking those running them 'are good guys' they don't realise their 'help and management' is counter-productive because ME/CFS isn't 'fatigue' or 'chronic fatigue' made better by pacing up either. And that those 'good blokes/women' decided they weren't going to hear it when patients didn't improve, because at best that 'wasn't their job' at worst they deluded themselves it was 'patients being negative'. ie they aren't medics/scientists/clinical in the way they work.

We can all intellectualise what the term actually means, but there are plenty of words out there which technically might mean something accurate but are commonly understood a different way.

 

That’s why I like the term “energy limiting condition” because it does explain (in a simplistic way) that we have energy, but it’s limited. That’s an easy concept for the “regular person” to understand. Oh you have some energy but not enough. That’s why you were at lunch last week but in bed this week. Got it.

 

The problem is that "energy" has multiple definitions, and taking it to mean ATP limitations can lead to misunderstanding, wasted research resources, wasted attempts on treatments, etc. We have limits on how much we feel like exerting, but that doesn't necessarily mean ATP limitations.

 

But a “regular person” wouldn’t be expected to understand ATP or biochemistry or research specs.
I think if the Daily Mail and Co were saying “Maeve had ME/CFS which is an energy-limiting condition” rather than “Maeve had Chronic Fatigue” it would do a lot of good for public perception.

 

I still think "exertion-limiting disease" would be better. For one thing, "condition" is often used by psychologists for psychosomatic disorders. "Disease" is more likely to be accepted as not the patient's fault. Wording does make a difference.

 

I really have noticed this problem a lot (even by a lot of people with ME), and pretty much half of people who don’t know about ME think CFS = CF.

In my opinion the only way to combat this is to make clear CFS on its own should not be used, and promote ME or ME/CFS.

I have had this argument with multiple journalists and patients, and most people can’t be bothered with the difference, for some reason, shortening “chronic fatigue syndrome” to “chronic fatigue” is irresistible to them.

I think a page explaining would also be useful.

Here for example is the kind of argument patients will use when I point out you shouldn’t call it chronic fatigue. (from a person I argued with on reddit a while ago).

Multiple problems with this, but when I pointed them out they just brush off concerns as “pedantic” or “paranoid”.

The ME/CFS wikipedia page has a nice note at the top:

Not to be confused with chronic fatigue, a symptom experienced in many chronic illnesses, including idiopathic chronic fatigue.

 

I think colloquially, exertion is taken to mean “over and above” normal effort, so people would be thinking, oh so you can’t run a 5km run, rather than you can’t wash yourself.

 

Energy impairment (EI). Living with energy impairment means having a very limited reserve of energy that gets depleted by the slightest activity that varies from person to person.

 

Just adding my recent anecdote about this. Background info: there is basically no original local coverage of ME/CFS or LC here. Almost all the articles you can read about these diseases here in the media are translated from foreign articles (from English or German-language media). Usually it is an article about some research the foreign press wrote about (a couple of articles about LC here and there, extremely rare for ME/CFS).

So the translations are never great and often go like this:

Original article --> Hungarian translation
chronic fatigue syndrome --> chronic fatigue
ME/CFS --> CFS
ME/CFS --> chronic fatigue (my personal "favourite")

A couple of days ago I saw another such translated article about a LC study, which forced me to expand the list:

post-exertional malaise (with a full sentence explaining what it is in brackets) --> chronic fatigue

 

Anything that fits ME/CFS definition should be called ME/CFS, not chronic fatigue. The media, and everyone else, should be educated as such.

Chronic fatigue could well be part of ME/CFS spectrum. But it's not disabling like ME/CFS with prominent PEM. Mine does look and feel like chronic fatigue when I'm not under the weather, with the fatigue after exertion being a bit heavier, and the recovery taking a little longer than normal. But I still can carry on with ADL. When I'm under the weather however, it reverts to bona fide ME/CFS with disabling PEM that knocks me out.