Long term cfs

That new name looks highly pejorative to me. I would think most people would read that as clever speak for lazy. It makes me deeply angry that the Powers that be should be so disdainful of so much suffering.

Hi Karin,

Just to clarify and from what I have read and understood.

Systemic Exertion Intolerance disease is placed in the WHO classification of disease, it will be a big step for us as the NHS uses WHO codes when we are diagnosed. Currently ME CFS and post-viral fatigue syndrome are all linked under G93.3 in Neurology.

The current version of the WHO classification system is due for republication with an updated version sometime this year (2015) We don’t know where this new SEID diagnosis will be placed, in the classification system or even if it will make the new WHO revision, so sadly nothing might change for the time being… but if it does it will be of great help in treatment of ME/CFS.

 

I have mixed feelings about the name George and thought that posting the infomation might encourage people to think about the ramifications. I read about Systemic Exertion Intolerance Syndrome in Lancet & US Institute of Medicine (IOM). The IOM Journal has the refined criteria. I agree that can be mistaken of laziness, but even under the old/current name I assume that LAZY is ME / CFS middle name - according to many doctors.

I would appreciate it if you or anyone else would read the journals online and discuss your thoughts. I just checked access and if you type in the new name you should be able to access both journals.

Since medicine is founded on emperical principles they are going to insist on having criteria that can be replicated across that globe. It appears that the new set of critera may be more realistic, but then there will always be skeptics (doctors). When I meet such a doctor I have to keep myself from wishing that s/he will get ME/CFS- they really have no idea.

What do you think about having a new discussion on the new name / criteria?  

 

I forgot to add, the good news is they clearly define ME/CFS as currently understood as a disease. This is important as many previous reports refer to ‘condition’ or ‘Syndrome’ avoiding the disease word, so this is a move in the right direction. I understand the 300 page document does quote a lot of good solid sources and takes overwhelming biomedical approach which is also good to hear.

 

Thank you Dragontest. This is a very important topic and well worthy of a discussion in its own right. We need to understand what goes behind the new name, the effect of a new name on people who haven't studied the details and whether any attempt should be made to have the name changed by substituting the word disease for the word syndrome. 

Dragontest, Systemic Exertion Intolerence Syndrome is the name that the American Institute of Medicine put forth along with new critera. I don't know what the process is for the international medical community to change the name. I don't know what WHO is doing on the matter. The name change just came out on Feb 10th. I found out the information accidently, I'll check with or National CFS association (Canada).

Do you think it would be useful to write a short review of the journal articles (IOM & Lancet) for this site, I'm fairly new here. I've had ME/CFS for 17 yrs and it's been a struggle to say the least.

 

Thank you Dragontest for correcting syndrome to disease - my mistake.

Hi Karin,

I think it would be worthwhile to write a short review on the articles. 

However, I do wonder if the change in name and classification will affect the perception of people with ME in the general public eyes? Action for SEIS doesn't have the same feel as Action for ME?

I guess it’s the knock on effects that need due consideration?

The change in name could also confuse people a tad and it could just become an umbrella term for anything Fatigue related, which the term ME, doesn’t don’t you think?

It could all depend on how good of a PR job the WHO (World Health Organization) does at raising awareness of the disease and linking the past know names ME and CFS to the new one.