Petition: Demand Renaming Chronic Fatigue Syndrome and Infection-Associated Chronic Conditions - Please Sign!

I created a petition to demand the renaming of Chronic Fatigue Syndrome, since it's associated with so much neglect and gaslighting. I will be bringing this petition to the attention of our advocacy leaders. If you agree, please sign the petition to help support this change. There is more information on the page in the link. Thank you!

https://chng.it/R4GRPQHycb

 

I quite like these suggestions @Cybergreen91 . I’ll be signing your petition even if I don’t completely agree with the words you chose because I think they are better even if they aren’t perfect.

For Acquired Exertional Failure Syndrome (AEFS), I think that’s a pretty good name, and works well with my experience, in any case, far better than ME or CFS. Though I would question the use of failure which seems to imply a sort of immediate exertional intolerance, which some pwME have, but doesn’t correspond exactly to the delayed nature of PEM. Perhaps deterioation would be better suited?
Aquired Exertional Deterioration Syndrome?

Maybe even adding a “post” in there before the “exertion”? At that point maybe something simpler like Aquired PEM Syndrome would be better and an easier change, assuming PEM refers to more than longstanding fatigue following exertion.

For what is to do with “Complex Chronic Conditions”, I agree with @Hutan . And I wonder what the purpose of the grouping is, if not to denote syndromes associated with infection. If it is to group marginalised illness of unknown aetiology, perhaps a name involving that would be more suited. CCC is vague and may be interpreted through a BPS lense. Something like MIUA (marginalised illnesses of unknown aetiology), is a more specific and therefore in my opinion a more useful term.

 

The trouble is that the history of these names is very complicated and there are several names, each with a slightly different range of usages. My own view is that trying to find a better descriptive name is futile because you cannot get across the concept in just a few words. So we should stick with an arbitrary indicator name that has a consensus meaning but does not try to describe. In a way I think terms that try to describe are actually less good because people assume they can work out what they mean just from the words and get misled.

I think ME/CFS is the best indicator name we have at present. My reasoning is given in the Qeios article 'The Concept of ME/CFS -https://www.qeios.com/read/NXCXM1

I would strongly advise against using the term complex because it is a medical code word for psychosomatic.

 

My feeling is, despite the unsatisfactory nature of either ME or CFS, that, given our current lack of knowledge on aetiology, ME/CFS is best left as a placeholder for the time being.

We have over the years expended a lot of energy and emotion on the naming debate and I am not sure we would achieve a great deal at present without a massive targeted PR campaign. There is much to be said for the petition arguments but is now the time?

 

Sort of agree apart from the issue which seems to be getting worse rather than better of it now being interpreted and used as ‘ME or CFS’ meaning that these are different illnesses and what they mean by each is in the eye of the beholder allowing them to be used as insinuations/inferences to individual’s own concepts they rarely divulge (like when they say ‘others have CFS’ they mean they don’t agree with you and ‘you have ME then and it’s functional’ ).

in that situation even I struggle because I know the technical scans or whatnot you would need to say ‘it’s ME’ aren’t something most get given and who knows which concept is being used there and if it fits (or doesn’t and someone is thinking of some other concept of ‘ME’)

and CFS hasn’t moved on guideline wise because we’ve still got an old literature using cfs/me that hadn’t had notes out on it and websites . Plus it is now being used by clinics (eg change from cfs/me to just cfs) to ‘decide which one they claim they treat based on what they want to offer’ so saying cfs/me like people will still fund them to deliver the 2007 guidelines

it doesn’t matter what we try and stick to me/cfs we are being undermined to look like that’s pedantic by doing so and would make it worse having to explain people being bad or wrong when we say the difference is significant

plus cfs is what we all get in snomed

Bps are now using this to make us look eccentric and keep those who have PEM or more severe me/cfs out of their own clinics by saying ‘we just treat cfs or cfs/me’ and offering stuff that harms and some mind-body nonsense they fancy for fatigued people

I can't emphasise how important it is that they aren't allowing to use this to not just split the spectrum again (which I'm pretty sure they are doing) but then to infer those who are more severe (because they can then make some fake claim to just do clinics for the milder 'because that's cfs') with a really horrible functional 'cfs doesn't get this bad, this is behavioural' new attack.

they are playing on sewing confusion then US getting labelled with being the cause of that (instead of them) and it reflecting on us thanks to their nasty rumour-mongering as if we all have some strange personality rather than them [playing games].

I get the risk of a new name = new opportunity for bps to FND us too. And a chance for them to just use funding to redo their same old research with a new name

There could be an upside if it sticks the spectrum back together and IF we can sort a definition that works.

I agree with Jonathan’s point that something like Bills condition is better because you don’t have people going ‘don’t tell me I already know what it is’ when the eg PEM is the important bit , and so it’s not immediately met with ‘new name for cfs’ .

We absolutely do need to pick a concrete concept there to go with it however. Which is another thing there seems to be fun with

 

Wouldn't the BPS crowd jump on any new name, possibly to even worse effect on victims? Surely they'd say that the syndrome (their term) was "acquired" psychologically.

 

And the me/cfs 2021 guidelines being actually implemented rather than them skirting it by using cfs/me or cfs is a major issue

will those guidelines map to a new name ? And what about other literature etc

just thinking on timing whether it’s good/bad if there are strategic windows and what would be involved/lost even if theoretically a name was good