Michael Sharpe skewered by @JohntheJack on Twitter

Post Activity Collapse Syndrome?

LOL we could go on and on thinking up names. I don’t think it is even possible to create a name that all patient groups would tolerate.

I still just say I have ME and use ME/CFS only occasionally.

 

The same group that opposes IOM criteria and SEID as name also doesn't like the term PEM because malaise is too vague. They prefer postexertional neuroimmune exhaustion. Which to me sounds more like neuroimmune babble than a more specific name.

 

Musing on this topic, I wanted to get the concepts of Delayed Onset and Post Exertion in, but that meant either DOPES or PEDOS, neither of which are useful.

Then I started wondering (more seriously), would it not be worth thinking about it from the reduced stamina/lower energy limit angle? All of our issues essentially come from this. Though I've got to admit I haven't thought of a decent acronym for that yet.

 

That's my current, personal strategy, where I have the time to have a conversation. I should specifically point out that this isn't the policy of #MEAction, which aims to use ME in all official communications.

 

Agreed! And I would tend to recommend CCC for that. It nets the smallest group out of the whole, which at least means we're looking at a narrower field. Still no guarantee we're looking at the right thing. But a better chance.

One thing I've learned is that a lot of ME researchers have ME. One of my least favorite things is to be invited to a conference and asked, "are you a patient, or a professional?" ....Excuse me? Let's not do that the other way around. Professionals can be patients.

Unfortunately, that's "pene". Anyone else here speak Spanish?

 

Whatever name is finally selected we need to have a plan to migrate people diagnosed with CFS to the new name.

In Australia it is extremely hard to get a diagnosis of ME. I was diagnosed with CFS using the Canadian Criteria eight years ago. On every report it says CFS.

I am getting to the point where I don't care what they call it, as long as they respect it.

 

I know the WHO prefer descriptive names (as opposed to names of people) but before long there will be a multitude of similar names and identical acronyms which is going to become even more confusing.
There is already the problem with BDS and BDD.
I thought maybe 'Energy Deficiency Syndrome' but then that's EDS ...........

eta: is there someones law that says eventually every ME/CFS discussion ends up talking about the name?

 

It's in the rulebook. How can you have missed it?

 

They need to recognise that this is a special case and the name is just a temporary placeholder. Names based on vaguely defined symptoms are not well liked, I wonder if they ever actually asked patients systematically before deciding on such policy?

http://www.sciencemag.org/news/2015/05/discovered-disease-who-has-new-rules-avoiding-offensive-names

 

Postexertional relapse syndrome. PRS.

 

Stamina Impairment & Postexertional Relapse Syndrome (SIPRS)?

 

Has same acronym as persistent refusal syndrome which might be a problem.

 

There is now - Sly Saint's Law

 

I know that this is a common worry in the community. However, speaking for myself, I would have no desire to move on and leave people to rot. I couldn't forget my experiences and what I have learned.

If there was a cure, then that would just leave me with more capacity to cause trouble on behalf of the forgotten others. I doubt I would be the only one.

If the situations were reversed, would you walk away and leave other's to rot? I doubt it

 

At the moment I am bathing in bleach each night in the hope that the Lightening Process will cure me. If it does, I promise to remain a pain in the neck for all the PACE fans.

Perhaps we should create a new, more inclusive category to replace MUS, within which variants like ME can continue to hold on to their existing name. I suggest EMITS – eternal medical indifference to suffering.

 

The wording in the abstract might be a bit unclear but the figure is actually 99%:

Though if it was based on a random population sample, I imagine the figure would be less.

 

Ah, I was thinking of the "90% with both cognitive/emotional and physical exertion" bit. You're right; all of them, or nearly, had something recognizable as PEM.

This may be a reflection of the number of ppl w/Fukuda who also qualify for IOM or CCC; but it may be a reflection of the fact that they were all diagnosed by clinicians with expertise in ME. In other words, people who know what ME/CFS "looks like", so we're already selecting for patients with a disease where PEM is a feature.

[Edit -- I'll fix that in the original post, it's important.]

[Edit the second -- yeah, it's likely how they were recruited. Another study says it's 0.19 % meet Fukuda, and 0.11% meet CCC; so more than half of Fukuda folk meet CCC. That's from Nacul, 2011.]

 

Ditto.