ME/SEID - a more accurate illness name than ME/CFS? (words only, nothing to do with diagnostic criteria)

Yep, but it gives people something to whinge about. Another distraction from the elephant in the room, which is the disease itself.

That's the problem with the name, and part of the genius in muddying the waters with "CFS", it's a divide and conquer strategy. While we're arguing among ourselves, we're not addressing the other issues.

I would be prepared to compromise on a name I didn't particularly like (but not a trivializing one) if the vast majority supported it. So we could just get past it and on to other business.

 

On a practical level you have to consider whether something is even possible to achieve. Patients are heavily entrenched when it comes to names and words describing our condition.

I simply don’t believe it’s possible to change how we label ourselves in great enough numbers to make any difference. However noble the intent or logical the idea. They won’t agree on one thing. This is before even getting to changing the name officially, which is even less likely for the reasons DX revision watch points out.

When the underlying mechanism of ME/CFS is understood the name will change. Until then we are stuck with what we have. I think our energy is far better spent in other areas.

 

A lot of people are heavily entrenched with with ME all right.
But this is not proposing to change ME but drop CFS, which is far less popular.

Though I think it is true that a lot of the reason SEID never took off was because of the attitude of proponents of ME.

We had another chance to change the name in the early 2000's to neuro endocrine immune dysfunction syndrome (NEIDS). This was then changed to chronic neuro endocrine immune dysfunction (CNDS) with ME as a subgroup.

These were semi-official recommendations which might have taken off if they had been given a chance.

However, between the ME-only people and people proposing their own pet names, neither took off and we have been left with chronic fatigue syndrome long-term.

We get a chance to change the name be 10 to 15 years, maybe. But it doesn't happen. The perfect can be the enemy of the good/better.

 

Both of those names are better (though still unevidenced) than CFS

 

I think a number of patients are scared that if CFS were to be dropped, where would that leave them?

Say it was decided to call it XYZ syndrome with a given criteria, those whose condition is described by that criteria may be happy enough. Patients who are diagnosed with much looser criteria and or don't know enough about the tighter criteria are scared they'll be left out in the dark.

Not only would they be stuck with CFS, but their numbers would be much smaller and advocacy much more difficult. What would charities do for example?

It's fear. Thanks to the politics and history of ME, where there's hope things will move forward, there's also the fear that comes from knowing things can also get worse.

 

Do we really though? I seriously doubt there’s been any chance and that’s why it hasn’t actually ever happened. It’s just a hamster wheel of arguments that distract from more important issues.

Of course with this subject that’s also something people will never agree on so this is my last reply on this thread.

 

It never had a chance to happen because of the negative response of the community to recommendations by a name committee associated with the (official) CFS Co-ordinating Committee (a precursor to the CFSAC with possibly a little more power?) and then the Institute of Medicine committee. We can’t be sure, it is true, how far things would have gone but it was the ME/CFS/whatever community who basically killed the possibility soon after birth.

 

Could you elaborate on this please, what have they changed the meaning of PEM from and to?

 

Firstly, I don't want to derail the thread about who has what and what is ME, what some might consider a comorbidity, or just other diagnoses that pwME might have. There are other threads with those conversations.

So. PEM - my own personal opinion. Many of us a few years into the illness finally started to realize that there can be quite a long delay between activity and payback. There was no description for it other than worsening after exertion, which hardly pins it down or does it justice.

In recent years we've started to call it PEM, though some refer to PENE (Post Exertion Neuroimmune Exhaustion), and there have been efforts to describe and refine it. Also to understand if it is unique to ME. We know that patients with other conditions suffer Post Exertion Fatigue - but PEM is much more than fatigue.

Lenny Jason among others has done some work trying to discover what it is & how to define it. I think it's still a work in progress.

So, I'm not sure we have entirely captured PEM by definition yet. Do certain subgroups experience PEM differently? Does PEM change as the duration of the condition change? Does an individual always experience the same symptoms of PEM? If not, can they predict depending on activity, what the symptoms of payback are likely to be?

So it's not so much a redefinition of PEM as exploring the outer limits of what we understand PEM to be.

I'm not slinging mud at anyone in particular here - when we start lumping conditions, which may or may not be connected, groups will start to use common language. Even though they are not necessarily describing the same thing. So the concept and definition of PEM becomes muddied and it's value as a diagnostic & management tool potentially undermined.

I'll use a silly example. I have ME. i often suffer anaemia. There may be a slight link in my case, but it's also quite possible they have nothing to do with each other. One complex mechanism having two independent faults isn't impossible and the human body is very complex.

People with anaemia, but without ME, will feel horrible after they exert themselves. They may experience - light headedness, nausea, palpitations, weakness, feeling faint, headaches etc. As anaemia takes a while to resolve those symptoms can be ongoing. At first glance a description might be similar to PEM as an ME patient experiences it. As someone who has experienced both, they are different things.

However, if I start to group anaemia sufferers and ME sufferers together, both groups will start to use common language. Some of those with anaemia alone will start to describe what they experience as PEM.

So, the useful and potentially unique term to describe one of the fundamental issues of life with ME becomes muddied and overused.

This is extremely detrimental as PEM is not a trivial thing and the definition and acknowledgment of PEM would be a key part of establishing harm when encouraging ME patients to do more than is appropriate to them.

Apologies for the length of the reply. Hard to be brief and/or clear.

 

haven't read this thread.
similar one https://www.s4me.info/threads/whats-in-a-name-change-to-ramsays.2181/

I think I've said this before but, it seems we have an ME community version of Godwins law......ie it always comes back to the name.

(on a sidenote; was interesting to hear Dr Jarvis on the radio point out that in Osteo Arthritis there is no inflammation[the 'itis' bit]).

 

And it's not, as the FINE manual says, DOMS. It's not even DOMS + symptoms of deconditioning.

There's something else going on, and it's not like we're the most inactive patient group in the world. Other diseases would have experienced PEM too, if that were the case.