SEID - countries other than U.S adopting this classification?

[Kenny Banya]

Systemic Exertion Intolerance Disease is a wonderful re-classification/naming of CFS/ME in the United States & was wondering if any countries will be adopting this classification/naming

 

[Snowdrop]

Hi @Kenny Banya

Here is a blog post on the IoM report reclassification to SEID. http://slightlyalive.blogspot.ca/2015/02/the-iom-report-on-mecfs-seid.html

There are many threads (and polls) here on PR about this from when the report came out discussing the utility of the name and it's use as classifying criteria.

I don't consider it likely that other countries will use this--just my opinion.

There is also the consideration when using classification criteria as to whether it is for diagnosis or for research purposes.

As far as classification goes many people here consider the ICC (international consensus criteria) or the CCC (Canadian consensus criteria) to be a better fit especially as they pertain to people with severe ME who often get overlooked.

ICC: http://solvecfs.org/international-consensus-criteria-published-for-myalgic-encephalomyelitis/
CCC: http://phoenixrising.me/wp-content/uploads/Canadian-definition.pdf

As for what to call this-- many here prefer to use the term ME and definitely do not want the term cfs.

Hopefully through research happening in the US and Australia what exactly this is will get pinned down in the near future and then a really appropriate term for this disease can be discussed and agreed upon.

 

[Kenny Banya]

The key for me is 'Disease'
It's unapologetically, bluntly 'in your face'

 

[me/cfs 27931]

Systemic Exertion Intolerance Disease is a wonderful re-classification/naming of CFS/ME in the United States & was wondering if any countries will be adopting this classification/naming

I have felt strongly disappointed by the lack of adoption of Systemic Exertion Intolerance Disease in the US. I'd consider it highly unlikely that other countries would adopt SEID, unless the US leads the way.

As there is no ICD code for ME (or SEID), doctors continue to write and say "chronic fatigue syndrome" or just "chronic fatigue". Continue to insist chronic fatigue (syndrome) is actually a primary sleep disorder, depression, dietary issue, somatic disorder, or fraud.

At least, this continues to be my experience.

Approximately 1 million sufferers in the US remain undiagnosed. We could have helped change that.

Why the community rejected an opportunity to adopt a name describing the disease baffles me. Perhaps some see SEID as imperfect. I see it as a step forward.

But there are other threads on this...

 

[Wildcat]

.
SEID is a weak name and a weak Criteria - a lost opportunity
.

 

[Wildcat]

.
About the IOM SEID Criteria:


The prestigious '50 Experts Letter' to the HHS (September 013), urging the HHS to not waste $1 Million on creating a new Criteria for ME, but urging the HHS/IOM instead to adopt the Canadian Concensus Criteria (CCC) for ME diagnosis and research,
''as a matter of urgency''. September 2013.



ME Case Definition Open Letter by 50 International ME Experts:


'An Open Letter to the Honorable Kathleen Sebelius, U.S. Secretary of Health and Human Service'

https://dl.dropboxusercontent.com/u/89158245/Case Definition Letter Sept 23 2013.pdf

'...We strongly urge the Department of Health and Human Services (HHS) to follow our lead by using the CCC as the sole case definition for ME/CFS in all of the Department’s activities related to this disease.

In addition, we strongly urge you to abandon efforts to reach out to groups such as the Institute of Medicine (IOM) that lack the needed expertise to develop “clinical diagnostic criteria” for ME/CFS.

Since the expert ME/CFS scientific and medical community has developed and adopted a case definition for research and clinical purposes, this effort is unnecessary and would waste scarce taxpayer funds that would be much better directed toward funding research on this disease.

Worse, this effort threatens to move ME/CFS science backward by engaging non-experts in the development of a case definition for a complex disease about which they are not knowledgeable...'

.

.

 

[halcyon]

As there is no ICD code for ME (or SEID), doctors continue to write and say "chronic fatigue syndrome" or just "chronic fatigue". Continue to insist chronic fatigue (syndrome) is actually a primary sleep disorder, depression, dietary issue, somatic disorder, or fraud.

There are and have been ICD codes specifically for ME in the US ICD-9-CM and ICD-10-CM.

 

[halcyon]

The situation with our ICD in the US has never been better, in spite of the damaging attempts of some advocates in recent years. ME is at its own distinct code matching the international classification, it's mutually exclusive with CFS, and the other historic ME terms (Iceland disease, Akureyri disease, and epidemic neuromyasthenia) are in the index and properly linked to ME. All that needs to be done is to adopt and use the proper nomenclature. This will require zero changes to the ICD, and assuming researchers start using the terms and criteria properly there should be no confusion between the medical literature and the ICD. Why would we want to further confuse things by creating yet another name and ICD code, that would not be linked in any way to ME or CFS in the ICD? Would SEID have an exclude clause for ME and CFS? If not, what would be the point of having a new code? If so, is the IOM really justified in creating a new disease out of thin air? One disease is not supposed to straddle multiple codes in the ICD. What chapter would you put SEID in the ICD? Does the SEID name and criteria really reflect the disease ME? Did the IOM really satisfactorily prove that ME and CFS are the same thing, when in fact they themselves state in the report that they are distinct? If we really must change the ICD, would it not make more sense to instead leave CFS at its code in the signs and symptom chapter and just rename it to SEID, leaving ME and its historic terms alone?

Regarding the original question, no, I don't think other countries will adopt SEID as they take their cue from the WHO ICD, not the US clinical modifications. As things stand right now, ME and CFS don't even exist in the upcoming ICD-11, so I think we have bigger problems on our hands.

 

[me/cfs 27931]

There are and have been ICD codes specifically for ME in the US ICD-9-CM and ICD-10-CM.

I stand corrected.

I should have said my doctor has no ICD code he can use for ME.

My doctor said he would like to diagnose me with ME, but says he has no available ICD code to use. I believe he refers to a list of ICD codes that the HMO provides on their computer system.

I can ask for clarification. However, my doctor was very clear that I cannot get an ME diagnosis simply because no ICD code is available to him. CFS is the only diagnosis he can make.

 

[halcyon]

My doctor said he would like to diagnose me with ME, but says he has no available ICD code to use. I believe he refers to a list of ICD codes that the HMO provides on their computer system.

That may be. Did he say this before or after October 2015? The ICD-9-CM code is 323.9 and the ICD-10-CM code is G93.3. It would be a little strange if they selectively loaded in certain codes from the ICD, but it wouldn't surprise me either.

 

[me/cfs 27931]

That may be. Did he say this before or after October 2015? The ICD-9-CM code is 323.9 and the ICD-10-CM code is G93.3. It would be a little strange if they selectively loaded in certain codes from the ICD, but it wouldn't surprise me either.

It was March or April 2015.

Very much appreciate the info. I will discuss with my doctor.

 

[me/cfs 27931]

That may be. Did he say this before or after October 2015? The ICD-9-CM code is 323.9 and the ICD-10-CM code is G93.3. It would be a little strange if they selectively loaded in certain codes from the ICD, but it wouldn't surprise me either.

@halcyon My doctor says, when he types Myalgic Encephalomyelitis into the problem list selction, it comes up.

But when my doctor clicks on Myalgic Encephalomyelitis, it becomes Chronic Fatigue Syndrome! So, the computer system views ME and CFS as the same diagnosis code.

So, I can't get a diagnosis of ME, even though my doctor agrees that I should have it.

You appear to be correct, that my HMO selectively loads only certain codes from the ICD.

PS: I should add, when my doctor first diagnosed me in March or April of 2015, Myalgic Encephalomyelitis wasn't even an option. Now he can select ME, but it becomes CFS automatically.