Terminology- SEID or PRAG, please vote!

[Gingergrrl]

@Mij I had mitochondrial damage from the severe systemic reaction and injuries from Levaquin which occurred two years before I had mono from EBV and later developed ME/CFS so I am sort of doubly screwed. I am not able to do any aerobic exercise b/c I get very weak and short of breath just from walking a few feet. If I push it to the limit for myself (which is still no where close to exercise) then I get angina type chest pain. So for me the damage has nothing to do with the ability to exercise which I suspect is gone for me forever. I hope that makes more sense? I don't always explain things well!

 

[Kati]

@Mij I had mitochondrial damage from the severe systemic reaction and injuries from Levaquin which occurred two years before I had mono from EBV and later developed ME/CFS so I am sort of doubly screwed. I am not able to do any aerobic exercise b/c I get very weak and short of breath just from walking a few feet. If I push it to the limit for myself (which is still no where close to exercise) then I get angina type chest pain. So for me the damage has nothing to do with the ability to exercise which I suspect is gone for me forever. I hope that makes more sense? I don't always explain things well!

Hi @Gingergrrl I have had shortness of breath just talking or walking from couch to bed. I don't have these symptoms anymore (but I am still sick)- know that these symptoms might go away after a while. It may well be a phase in the illness.

 

[Gingergrrl]

Hi @Gingergrrl I have had shortness of breath just talking or walking from couch to bed. I don't have these symptoms anymore (but I am still sick)- know that these symptoms might go away after a while. It may well be a phase in the illness.

@Kati Thank you for reminding me of this and it would be wonderful if this happens for me. I am hoping it is a phase in the illness that eventually improves. Sorry @Dr.Patient to get off topic in your thread!

 

[WillowJ]

Come to think of it..what is the English word for "no strength"...is there one? Perhaps that's how "fatigue" ended up in the first place...

The English word for "no strength" is weakness.

Fatigue is very vague and can mean just about anything: tired from working a bit, tired from working a lot, tired from losing a little sleep, tired from losing a lot of sleep, not feeling well from a minor illness, not feeling well from a major illness, not feeling well because your dog died (I know, technically that is sadness, but sad people report fatigue)....

I don't understand the objection to using asthenia or myasthenia. Has no one heard of myasthenia gravis? There is probably no word on earth that, all by itself, means "Dude, this illness is physiological", except maybe "physiological". Context and definition can do a lot.

I don't like the acronym PRAG because it seems too much like prat (a useless, ill-informed, inept, annoying person). Or, one's bum (that particular meaning I didn't know until just now). Too much context for the definition to overcome.

Am I being contradictory now?

 

[Kati]

The English word for "no strength" is weakness.

Fatigue is very vague and can mean just about anything: tired from working a bit, tired from working a lot, tired from losing a little sleep, tired from losing a lot of sleep, not feeling well from a minor illness, not feeling well from a major illness, not feeling well because your dog died (I know, technically that is sadness, but sad people report fatigue)....

I don't understand the objection to using asthenia or myasthenia. Has no one heard of myasthenia gravis? There is probably no word on earth that, all by itself, means "Dude, this illness is physiological", except maybe "physiological". Context and definition can do a lot.

I don't like the acronym PRAG because it seems too much like prat (a useless, ill-informed, inept, annoying person). Or, one's bum (that particular meaning I didn't know until just now). Too much context for the definition to overcome.

Am I being contradictory now?

Myasthenia gravis is a well understood condition. The name however could be considered stigmatizing due to the word 'myasthenia' which means muscle fatigue. Asthenia is used with all flavors at the dr's office and often has a psychological connotation.

As for gravis, it means grave. It means nothing.

The name will find itself when we have a clearer pathology, hopefully in just a few years. In the meantime, I think that switching to SEID would be beneficial if only to stop people from saying chronic fatigue.

 

[WillowJ]

The name will find itself when we have a clearer pathology, hopefully in just a few years. In the meantime, I think that switching to SEID would be beneficial if only to stop people from saying chronic fatigue.

I agree with that As a temporary replacement for CFS (my official diagnosis currently) or PVFS (the other option my doctor would see if nothing is done), I can live with SEID.

 

[redviper]

When I think of the term SEID, I think of a quote the Ukranian president made recently when discussing the "cease fire" agreement with Russia, he said "We had just two options: bad, and worse. So we decided at this particular period of time to get the bad option".

I think SEID is the "bad option" in this scenario, but allowing the term Chronic Fatigue Syndrome to remain relevant is the much, much worse option. We need to ensure the "CFS" term quickly meets its demise and take the bad option for now, knowing SEID is only a temporary stop-gap solution. After all, Rome wasn't built in a day.