So... We have a new name now then?

[Skippa]

Hypometabolic syndrome.

Frequent topics on the forum:

"Should we use CFS or ME?"

"What name gives a better description of our symptoms?"

"Why don't people give sympathy if you tell them you've got CFS?"

"What do you tell people is wrong with you?"

Well, since the latest breakthrough study smash hit, we have our answer;

"I'm not well"

- "oh? What's wrong with you?"

"I've got Hypometabolic Syndrome"

- "nasty! What's that then?"

"Parts of my body switched off and won't turn on again"

- "poor you, sympathy empathy and more sympathy"

Or perhaps CHS - Chronic Hypometabolic Syndrome

Or PHS (lol) - Persistant Hypometabolic Syndrome

 

[Justin30]

ME until true classification of subsets and further research is conducted.

 

[Marky90]

SEID

 

[alex3619]

Its premature, we need more research, but it looks like a name change will arrive in the medium term. My effort was Persistent Hypometabolic Disease, or PHD.

 

[Marky90]

Its premature, we need more research, but it looks like a name change will arrive in the medium term. My effort was Persistent Hypometabolic Disease, or PHD.

Future PHD in PHD.. nice

 

[Chrisb]

There was a time when, when asked the inevitable question "Do you think its depression?" I used to seize the bull by the clichéd horns and say "Yes .......but only in the sense that it is systemic metabolic depression." I feel almost vindicated..... but cannot advocate the use of the name!

 

[JohnCB]

Just HD.

Hypometabolic Disease

No more syndromes, please.

Or ME.

Biological, organic ME, as it has always been.

Perhaps ME also known as Hyper Metal Bol*** Disease

Yeah, how do you spell that, one more time?

 

[JohnCB]

Persistent Dauer Disease,
Just no more syndromes, please.
No more CBT,
No more GET,
Yes, it's Hypometabolic Disease.

Hmm, it's difficult to get that H-word to scan.

 

[JamBob]

Nematodal Hypotmetabolic Disease (NHD).

 

[osisposis]

I'm still not convienced that CFS and ME/CFS are the same thing/severities

 

[Denise]

On another thread I believe I saw hypothyroidism mentioned as a disease with hypometabolic characteristics. So could we claim hypometabolic as part of a disease name for us?

 

[TigerLilea]

Hypometabolic syndrome.



- "oh? What's wrong with you?"

"I've got Hypometabolic Syndrome"

- "nasty! What's that then?"

"Parts of my body switched off and won't turn on again"

- "poor you, sympathy empathy and more sympathy"

Or perhaps CHS - Chronic Hypometabolic Syndrome

Or PHS (lol) - Persistant Hypometabolic Syndrome

Let's wait until several other researchers can replicate these findings. Remember XMRV? This could turn out to be another dead end. Only time will tell.

 

[Skippa]

Let's wait until several other researchers can replicate these findings. Remember XMRV? This could turn out to be another dead end. Only time will tell.

No, I don't remember XMRV :thumbdown:

 

[Biarritz13]

Its premature, we need more research, but it looks like a name change will arrive in the medium term. My effort was Persistent Hypometabolic Disease, or PHD.

IMO "persistent" doesn't look as serious as "chronic"

 

[snowathlete]

Anything along those lines is better than ME. There isn't enough evidence of ME to justify the name which makes us a laughing stock to most in medicine. The only reason ME has been so popular is because CFS is even worse.

But we can't change name until we have done enough replication and that may lead to more refinement of what the name should be anyway. Till then people should call it what they want but not waste too much effort fighting for one thing or the other as it looks likely that current names will be redundant before too much longer.

 

[alex3619]

Let's wait until several other researchers can replicate these findings. Remember XMRV? This could turn out to be another dead end. Only time will tell.

Yes, its too early for a change. Its not too early to start talking about it.

 

[alex3619]

I'm still not convienced that CFS and ME/CFS are the same thing/severities

This cohort was most likely an ME cohort, its not clear how well it will translate to loosely defined CFS groups, expecially Oxford which is the worst definition of all.

PS I am still going to use ME for strictly defined diagnoses, and CFS for the rest, and ME/CFS where its in doubt.

 

[dannybex]

No, I don't remember XMRV :thumbdown:

Consider yourself very fortunate.

 

[skipskip30]

I will stick with ME/CFS until theres more research.

 

[Nielk]

This cohort was most likely an ME cohort, its not clear how well it will translate to loosely defined CFS groups, expecially Oxford which is the worst definition of all.

PS I am still going to use ME for strictly defined diagnoses, and CFS for the rest, and ME/CFS where its in doubt.

Me patients suffer from chronic neuro inflammation. It seems to me that the cohorts in this study did not suffer from ongoing inflammation. The way I understand it - it's more like a hit and run scenarios where there was a n initial "hit" which might have been infectious or environmental or other stressor and then the stressor disappeared but the patients are left in this stuck hibernating state.

This is not a description of myalgic Encephalomyelitis and that's why I have a hard time understanding it.