• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Sign the petition for rejection of change of name from ME to SEID

Nielk

Senior Member
Messages
6,970
OK see if I understand
ME - Does not exist , will not exist in USA ICD code
CFS will be replaced with SEID.

So any studies on SEID cannot be used for ME or at some point they international comunity will say
For USA
SEID in USA = ME (internationally)
FOr International
SEID does not exist only ME. but they are different.

Now I am confused.

ME will exist in the US ICD-10 code as of october 2015.
CFS will remain as it has been coded
SEID will get it's own coding but probably not until 2016

SEID or the IOM criteria was created for diagnostic criteria, not research criteria

As far as what disease is SEID replacing, it is anyone's guess. It was not clarified in the IOM report.
The report was a study on ME/CFS so I am assuming that SEID is replacing ME/CFS - whatever that means.
 

leela

Senior Member
Messages
3,290
This petition was started by someone in the U.K.

It is true that currently there is no official diagnostic criteria of M.E. in the U.S. But, a great many patients in the U.S. are calling for the adoption of Myalgic Encephalomyelitis and do not want the name SEID. It makes sense then for people in the U.S. to sign this petition as well - if they would like the name M.E. and do not want the name SEID.
In addition, starting October 2015, M.E. will have a diagnostic code in the ICD-10.

Trying to tell us that we are "ridiculous" and that we are "undermining progress' will not be effective. This is like saying the majority of U.S. patients can't think for themselves and are imbeciles.

We are fighting for the historical name M.E. Don't talk down to us like we don't know what we are doing.

My neuro, who refuses to use CFS or CFIDS uses the code 323.9 which is "chronic encephalitis, myeltitis and encephalomyelitis" to which she adds the code/Dx for dysautonomia of the nervous system.
I don't need the "myalgic" because quite frankly I think it goes without saying that that chronic triad is painful enough :confused::ill:

I only just learned this last month, which makes me kind of mad, because if this Dx/code exists in the US, why have we been saddled and
manhandled by all this bullshit for so long?
 

leela

Senior Member
Messages
3,290
@halcyon Are you saying the code I listed didn't exist until recently? I am an ignoramus on this topic.

ETA: that Dx appears not to be for "ME" but for the inflammatory conditions of the brain from which I suffer and for which I have MRI evidence.
 

Nielk

Senior Member
Messages
6,970
My neuro, who refuses to use CFS or CFIDS uses the code 323.9 which is "chronic encephalitis, myeltitis and encephalomyelitis" to which she adds the code/Dx for dysautonomia of the nervous system.
I don't need the "myalgic" because quite frankly I think it goes without saying that that chronic triad is painful enough :confused::ill:

I only just learned this last month, which makes me kind of mad, because if this Dx/code exists in the US, why have we been saddled and
manhandled by all this bullshit for so long?

I don't know. I also heard that Mary Schweitzer has been diagnosed with M.E. in the U.S.
My understanding is that starting November 2015, Myalgic Encephalomyelitis will have a US ICD-10 code in Disorder of neurological system G93.3.
 

halcyon

Senior Member
Messages
2,482
@halcyon Are you saying the code I listed didn't exist until recently? I am an ignoramus on this topic.
No, sorry. The ME G93.3 code didn't exist in ICD-9-CM, the current coding in use in the USA. It only had CFS at 780.71. The ICD-10-CM, that comes out later this year, contains both ME at G93.3 and CFS at R53.82. I'm not sure what the equivalent code would be in the ICD-10-CM for your 323.9 code. Looks like it would be G04.9 Encephalitis, myelitis and encephalomyelitis, unspecified.

As far as I know the code you listed hasn't been widely used for ME or CFS at all in the US.
 

Seven7

Seven
Messages
3,444
Location
USA
I actually meet Both criteria. How do I know if I am SEID or ME??? both?? By the way ALso have POTs diagnosed now, And NK cell dysfunction codes.
 

August59

Daughters High School Graduation
Messages
1,617
Location
Upstate SC, USA
The notes from my CFS doctor has always listed my diagnosis in my notes as:
1) Myalgic Encephalopathy
2) Chronic Fatigue Syndrome

I'm not sure if it had something to do with severe myalgic pain even with very strong pain meds and hydrocortisone (cortisol labs were normal at this time).

However, on my paperwork for insurance the diagnosis code was always 780.71 plus a couple of others.
 

Dolphin

Senior Member
Messages
17,567
From a yahoogroup post (not mine) in reply to a circular about the petition:

I think SEID is much better than CFS and you cant get a diagnosis of ME on the NHS.

The Wessely School are opposed to SEID as 'exertion intolerance' blows a whole in the theory that our symptoms are mainly caused by deconditioning.

I would be doing the Wessely School a favour if I signed this petition.