USA - NCHS/CDC Proposal for ICD-10-CM - adding SEID

@Inara - The ICD-10-CM and disease name situation in the US is an mess. Historically, US medical education providers and doctors have used the term CFS even when the patient meets the CCC or the ME-ICC. But CFS is equated to the symptom of chronic fatigue so that impacts medical perception, insurance reimbursement and the ability to use medical records for research. The US is the only country to have equated CFS to CF. Every other country has it in the neurological chapter and it needed to be moved out of the symptom chapter.

Regarding SEID - HHS does not "approve" disease names - the medical community does. So while HHS and some medical education providers have adopted the term "ME/CFS," a few medical education providers have incorporated the term SEID. So when doctors write the term "SEID" in a medical record, SEID would need to have a code in the ICD-10-CM.

If SEID is to be added to the ICD-10-CM, the two options are 1) to add SEID as an inclusion under either CFS or ME or 2) to give SEID a separate code. The IOM was clear that SEID is narrower than CFS and various papers have discussed it being broader then ME as defined by the CCC or the ME-ICC. So including it under either CFS or ME would not be appropriate.

Besides for the SEID term issue, we also have a challenge when doctors use the term "ME/CFS." As I understand it, the coder will have to apply both the CFS and the ME codes to the medical record. Its unclear what impact that will have on reimbursement but if will impact research using medical records.

Ughh

 

There was evidence before that :
http://www.investinme.org/Article 010-Encephalopathy Hooper.shtml

and now there is more evidence.

 

Eileen Holderman has asked some very pertinent questions of Solve, IACFS/ME and MEAction. It’ll be interesting to see their answers. IF they answer...

https://twitter.com/user/status/1047595220509122560


https://twitter.com/user/status/1047596693557075968


https://twitter.com/user/status/1047597857296068610


Also:
https://twitter.com/user/status/1047582556395323392


https://twitter.com/user/status/1047612680259948549

 

https://twitter.com/user/status/1047761085498048512

 

So I see from Jen's Tweets and from her replies to others.

But #MEActNet and @JaimeS were first asked, by several of us, nearly a week ago whether #MEActNet intends to publish a position statement. To the best of my knowledge, no spokesperson for #MEActNet has acknowledged these enquiries.

 

Nearly a week ago you contacted me? I've been at a conference for the past week!

[Edit: I've checked my email and tweets and see nothing from you. So do you mean when Slysaint used @ here? Or did you alert me somewhere and I've missed it?]

 

Ah, the clonidine ppl who thought ME was anxiety until they gave adolescents anti-anxiety meds.

I'm a little unclear what they're comparing the IOM criteria to.

At first it says that adolescents had to be chronically fatigued and meet no other criteria, which sounds to me like they're comparing IOM to Oxford.

Then, it says:

To rule out other diseases? So still Oxford?

But wait...

So this is 'unexplained fatigue that is serious'.

Then they say that actually recruitment was more complex and they direct the reader here to learn more about how that went down: https://jamanetwork.com/journals/jamapediatrics/fullarticle/1827799

And finally we see that they cite the NICE guidelines as followed by clinicians. That's how they made their diagnosis.

So, it's NICE vs SEID?

For heaven's sake that was challenging to find.

OK since presumably loose and ill-defined stuff like NICE tends to select for less debility, I'll believe that anyone diagnosed by SEID will likely be worse off on most measures, and anyone diagnosed via ICC will be yet worse off.

 

Yeah I wish I understood it better. I'm guessing this is why they wanted to move it, but we'd have to talk to someone who made the suggestion. It's an important conversation to have.

 

I think it does, though? At least, it suggests SEID be included and that it be a separate thing.

 

#MEAction doesn't automatically assume a position typically -- unless it's something we know the community agrees on, like CBT or GET. Instead, we do as we did with deciding what name we'd use in our communications (ME) and poll the community to form our position.

Sometimes that doesn't work, and we have to act or lose an opportunity. Then we move swiftly, as with the HHS protest (two days?!) or a few reactions we've had to the CDC's work.

I think Revision Watch has been keeping an eye on these issues for a very long time, and has all the background at hir fingertips. It's important information. I also think we should look at the pros and cons of the move, which I'm not sure I've heard anyone lay out, yet, though we have pieces.

IOM says SEID and CFS are not the same, so attempts to separate them? Moving stuff away from neurasthenia?

But there are those who worry about SEID 'gaining a foothold' in tangible ways. That's probably the reason they don't want ANYTHING about SEID located anywhere official.

Is that it in a nutshell, or have I mischaracterized?

 

But your website says you campaign on the basis of ICC (I’m paraphrasing). So wouldn’t an attempt to legitimise SEID warrant a response?

 

These are case studies, studies run by patient charities, and other studies that ppl would consider of low quality. I think that we had no choice but to do low-funded, poor-quality research with no funding; but that doesn't make the research more acceptable. I also think that there IS neuroinflammation in ME, personally, but we'd have to get some high-powered studies before we could say we've proved it's the case.

 

You are paraphrasing. #MEAction hasn't taken a stance on which criteria the community prefers because -- as stated above -- we have not yet polled the community.

 

Interesting. In reply to my open letter to MEAction and Jen Brea, Adriane Tillman said:

“For diagnostic criteria, #MEAction promotes the use of the CCC/ICC diagnostic criteria as you can see by its listing on our patients page, on our researchers and clinicians page, on our Reports & Facts Sheets page (right above the IOM report), and in our brochure.”



That sounds rather like a stance to me.

Accepting that is a stance, I’ll repeat my question:

In light of MEAction’s stance on promoting the use of the CCC/ICC for diagnostic criteria, doesn’t the attempt to legitimise SEID warrant a response? Especially from an organisation that uses ME in its name?

 

@MEActNet were contacted via Twitter on September 29th

https://twitter.com/user/status/1046005335427883008


and @MEActNet @jenbrea via Twitter on October 4th

https://twitter.com/user/status/1047761085498048512

 

May be reposted with source: Dx Revision Watch https://dxrevisionwatch.com

https://dxrevisionwatch.files.wordpress.com/2018/10/snapshotscompilation3.png

 

So does #MEActNet intend to run a consultation process and submit a formal response to the meeting proposals?

The deadline for comments is November 13.

 

I think I'm missing something. Wasn't the suggestion to give three different codes (SEID, CFS and ME) nested under post-viral fatigue syndrome? So doesn't the inclusion of SEID mean it's actually separated from ME, rather than replacing it?

 

On this note, it's occurred to me: wouldn't removing the SEID coding suggestion actually do more to conflate ME and SEID?

At present, doctors are using a dozen or so diagnostic criteria, but if they only have one code to use, then everyone will be conflated, regardless of criteria used. Whether it's ICC, CCC, IOM, Oxford, or whatever, they'd all get the same coding.

Wouldn't it be more useful to stratify patients in the coding system, so that we can separate the SEID from the CFS from the ME?