Michael Sharpe skewered by @JohntheJack on Twitter

I don't see how it could be considered a patient is choice, no more than lactose intolerance doesn't imply someone choose to be intolerant to lactose.

But I guess there is a lot of sensitivity around names. Going by what I see on twitter sometimes, I think some people think the IOM report and SEID is a conspiracy to bury ME.

Anyway we are probably straying off topic.

 

Just some PEM- brainstorming before going to bed again...

'I have no idea, it looks like a complete mess' Syndrome (NIILLCOMES) ?

Postexertional Neuroimmune Symtptoms Exacerbation Syndrome (PENSES)?

Postexertional Impairment Exacerbation Syndrome (PIES)?

Neurological And Muscular Impairment Exacerbation by Exertion Syndrome (NAMIEES)?

Postexertional Neuroimmune Exhaustion Syndrome (ooops)

It's really time to go to bed.

 

I liked the W.T.F. diagnosis @Mark used.

 

I’ve been working on the Chronic Illness Inclusion Project (though I have to stop working unfortunately). Something we’ve been trying on for size is the term Energy Limiting Chronic Illness. The concept comes from trying to find a non niche alternative to the term Spoonie. I thought that what Spoon Theory describes is actually limited energy, rather than fatigue. And fatigue isn’t necessarily a synonym of lack of energy.

ME would be the epitome of Energy Limiting Chronic Illness in that within our energy envelope we don’t necessarily feel fatigue (it is possible to be fatigue free as a sensation). When we step outside of the envelope we feel terrible. Although this is the result of activity the experience isn’t necessarily the feeling of fatigue (pain, sensory overload, flu like symptoms, migraines etc and can include exhaustion).

It is a shift in explanation from fatigue to energy limitation. We’re seeing if this fits a wider range of conditions, a sort of category of disability impairment. But our research is more policy related, we’re not trying to pin down what’s happening medically (except for the epistemic injustice aspect).

 

No probably not yet. It’s just how I feel right now. Meh

 

Where?

 

Thinking on my Systemic Metabolic Insufficiency name idea again, and @Sasha’s question on whether we know that yet.

I think at the most basic level, yes we can say that there is a Metabolic Insufficiency of some sort. Think about what happens if we try to push on through. Even in the moment, my metabolic rate cannot increase enough to let me do as much as I could when well. And it’s not just a lack of fitness issue. Something is broken in the system.

Then of course there is the cascade of other things that happen afterwards, but that is more difficult to neatly explain in a name. A Metabolic Insufficiency however could not be confused with laziness, which would be good.

 

Yes, I like ME/SEID more than ME/CFS. Chronic Fatigue Syndrome is a terrible name: it is too easy to think fatigue is the main problem. Lots in the medical establishment aren’t going to accept “myalgic encephalomyelitis” on its own any time soon.

People can try to come up with all sorts of fancy names but it will likely be hard to get any high profile official committee to approve them any time soon.

 

I think we've had ME/CFS for so long that we've forgotten how weird it is to have a two-component name. I don't think another one would do us any favours.

 

I think it would be very unpopular with some people to try to drop ME at this time.

 

I agree - it looks like we're stuck until the science moves forward.

 

Well, I think ME/SEID would be preferable to ME/CFS and doesn't require the science to move forward. It would be great to drop "chronic fatigue syndrome".

 

I thought of this one just the other day. It's accurate.

 

ME/CFS or SEID is fine for me until we work out what’s actually going on. Arguing over it plays right into sharpes hands in my opinion. He’s already using it as an excuse.

 

I think we need more research findings before we decide on any new names

I would be perfectly happy to be put under the mitochondrial disease umbrella type blah blah if that’s the defining symptom/treatment or any other umbrella for that matter. Despite my loathing of both current names, there really is little point coming up with a new name until we know what we are describing/defining.

Our primary objective is equality in quality research ..the rest of this is just speculation

 

It might be safer to go for a non-descriptive name, like Ramsay’s Disease or perhaps some other proper name like Matthees – it would be a great to be able to honour Alem’s heroic acheivements in some way. Perhaps one day there will be award named after him. I hope so.

If Jonathan doesn’t like “disease” would “syndrome” be better? If it’s appropriate for HIV/AIDS I cant see why it wouldn’t be for ME/CFS. I don’t tend to follow the name arguments too closely so apologies if there are valid reasons for opposing it that I’m not aware of.

I suspect ME/CFS will stay until more is understood, and then it (or they) will be renamed to better reflect the pathophysiology – or perhaps after the person or people who makes the breakthrough(s).

How about Non-Wesselian Exertion Intolerance Syndrome?

 

To me, Mr. Sharpe said it quite clearly: For him CFS and ME are not equal. Actually he said this several times on Twitter. This could include the admission that CFS was their invention, in the end. He seems to refer to Oxford-CFS and whatever-ME; because in PACE they used the Oxford criteria.

In the end, his statement needs to be interpreted, which can be problematic as is known.

Still, highly interesting.

 

It's hardly surprising they are confused though, when the likes of MS, NICE, etc, speak of CFS-also-known-as-ME, CFS/ME, and yet MS seems himself to be very confused/forgetful when he then says in the next breath CFS and ME are not the same thing. Talk about identity crisis.