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

So @Andy, are you saying the s4me board do not think SEID getting its own code is something to be concerned about?

 

No, I'm not saying that at all. The individual board members will have their own opinions, which they are fully entitled to, which is up to them to reveal, or not.

I can say that the board will not be officially taking a position because it is obvious that there is no consensus opinion among our active members on this subject.

 

Ok, thank you

Thank you for confirming the board will not be taking an official position on the proposed new code for SEID in the ICD 10 CM. As I have said previous on this thread, I think if it goes ahead this will sideline ME further so obviously I am disappointed s4me will not be taking an official position against it.

 

In the US, the IOM criteria are being implemented and when medical educators and medical societies have used the term "SEID," it is explicitly because they have adopted the new criteria. Those guidelines specify that at least substantial impairment, PEM and unrefreshing sleep plus cognitive or orthostatic intolerance need to be present

But you are correct that education is needed, particularly because medical providers do not "get" e.g. PEM and its diagnostic and treatment implications. If they cant recognize PEM or appreciate its importance, they will not accurately diagnose patients and will continue to lump in other conditions. I've seen cases presented in med ed material where the IOM criteria were purportedly used but the "SEID" patient presented in the case did not experience PEM, substantial impairment in function, etc. Another example - the paper referenced in the second post in this thread - the one evaluated the SEID criteria in adolescents - actually used "increased fatigue after activity" as a proxy for PEM. It also found that the "SEID" positive group averaged 4342 steps a day, comparable to the "SEID" negative group and a very high level of activity for even a moderately ill patient. Unlikely the researchers were really looking at cohort that met the IOM criteria whatever you call it.

This failure to understand the hallmark symptoms would be a huge problem no matter even if the CCC or the ME-ICC were used. The medical education efforts that I've seen and been involved in have been especially focused on helping doctors understand specifics like the nature and management of PEM.

At the same time, patient advocates have also pushed CDC to include the IOM's specific statement that not all patients previously diagnosed with CFS will meet the IOM criteria. So far, that has not happened.

AFAIK, doctors are often not the ones that pick the actual code. They write a diagnostic term and then medical records coders assign the code. NCHS's point is that if the doctor uses the "SEID" term, then the coders need to be able to assign that code.

The further complication for us that if a doctor writes the term "ME/CFS," then the coder will have to code both CFS and ME in the medical records. ME/CFS can not be added because the two individual terms are there. The ideal is if the doctor writes the term "ME" but that's going to take education. And some do not want the ME term used if the IOM criteria were used to guide diagnosis

Regarding the "CFS NOS" code - the proposal still has it but only under the "CFS" code. Currently, the only term available is the "CFS NOS." this was problematic because of potential negative reimbursement implications. The proposal is to add the term "CFS" and then add "CFS NOS" as a synonym of it. The "CFS NOS" is being carried for legacy reasons.

Makes my head hurt.

 

I hear you but shouldn’t the ME community challenge medical education providers and some doctors doing this? Doctors should be encouraged to use the ME code in the ICD 10 CM. By SEID being given an ICD code this will just cement it further, risk it being used for research and once again ME is sidelined. I think the IOM report made some useful statements but I can’t support the SEID criteria which I know HHS are referring to as now ME/CFS.

 

Are you asking whether the community should challenge medical providers not to use the IOM criteria, the SEID name or both?

Regarding the IOM criteria - I know some US patients do not want to see the IOM criteria used but others do support its rollout. I pushed for the CCC multiple times over the years but saw no movement in the medical community. IMO, this is the first time in decades that we've been able to get medical providers to take a fresh look at the disease, to remove recommendations for CBT and GET, to provide definitive statements that the disease is not psychiatric but rather involves neurological, immunological, energy metabolism, and autonomic dysfunction.

Regarding the concern with the criteria used in research - I am also concerned with that issue but its more than just whether the IOM criteria are used there. The position taken when the NIH conducted the CDE effort was that any criteria could be used, including Fukuda. And the specific methods to evaluate those criteria were undefined. In the UK, NICE has been used and while it says it requires PEM, it also states the exacerbation of symptoms post exertion is optional so what kind of PEM is that? I dont favor the IOM for use in research but even if its not used, we still have substantial issues in how research cohorts are selected that must be addressed. Until that happens, we will be comparing apples and oranges.

Edited to add: Regarding use of the IOM criteria - I know some advocates in the US are advocating that CCC also be used along with the IOM and that descriptions of the disease are as encompassing as the CCC. The CFSAC recommendations on the implementation of the IOM criteria were specific on these details as were other efforts which provided feedback and recommendations to the CDC.

 

This and your previous post are very helpful and, I think, get to the heart of the issue. I wasn't aware that it wasn't doctors who do the coding, but that makes sense.

 

I agree. That was a deeply upsetting statement as it clearly gives those outside of the community the wrong understanding. There is NOTHING vigorous about research into CFS.

However, there is a great deal of understanding about ME as per the ICC. Anyone who spends time using the ICC and the IC Primer gets a pretty clear understanding of how sick we are. May not be about the cause, but it certainly gives a good picture of the systems malfunctioning we deal with and an insight into how debilitated we are. Something I do not feel the IOM accomplishes.

 

This proposal operationalizes SEID name and criteria in a way that will affect patients the same way Fukuda did. I realize many think this is better than Fukuda. Better by inches is not good enough to actually get the proper care we need.

As a patient who has been dealing with doctors for 29 years I remember doctors before Fukuda understood immunological and neurological issues seen in the outbreaks. After Fukuda, the misinformation about this being a "fatigue" issue that we could exercise our way out of took hold...thanks to the CDC (and those who helped them). Once Fukuda mixed us up with a lot of other patients doctors stopped looking at our immune systems and neurological issues and focused on fatigue.

A couple points on the proposal.

1. The is relabeling G93.3 as a "fatigue syndrome" That alone is alarming. Basically reinforcing that ME is a "fatigue syndrome".

2. The CDC refuses to acknowledge ME as described by the ICC. The CDC (who is behind this ICD coding) has insisted ME is a fatigue based disease.

3. SEID diagnostic criteria does NOT acknowledge the immune, cardiac, or neurological issues. I'm not interested in what SEID might be in the future... if it is what doctors are going to use it will be far too late for those who are sick today to get proper treatment (antivirals, etc.)

4. Having talked with doctors about the SEID diagnosis and their take I am appalled that their response is basically the same as we've had for decades. Treatment protocol is gradually increasing activity (because we are intolerant like someone with a food allergy) and we need behavior management to overcome the disease. No acknowledgement of the severity or reality of what ME truly is.

5. Yes... IOM did state that ME and CFS are two different diseases. Therefore it makes sense they would get two different codes. If CFS is based on Fukuda and ME is based on ICC those diseases are different enough they don't belong under the same heading.

6. The bottom line for patients is what information is going to be disseminated to doctors?

My crystal ball (based on 29 years of this mess) is that the CDC is ONLY going to educate about SEID. Thus making it so that anyone with a CFS or ME diagnosis will be rediagnosed with SEID leaving all patients treated based on the CDC medical education... which we have yet to see. Again.. my crystal ball sees the CDC creating a very similar treatment protocol we had for CFS.

Because... behavior management is a lot less expensive than testing for viruses as well as treating viruses ongoing is extremely expensive, testing for neurological damage is expensive, IVIG to improve quality of life is extremely expensive, cardiac abnormalities seen in ME patients is expensive to look for and more expensive to treat. (My heart medicine is VERY expensive).

In all of these maneuverings of ignoring the patients, doctors, and advocates who fought against the IOM in the first place then rolling it out and using SEID label despite patients insisting the name was not acceptable, then - again- refusing to recognize ME as a distinct disease - then cancelling CFSAC (the one place we had to present our dissatisfaction with SEID and medical education issues)... the thumbprint of the insurance companies seems pretty clear to me. It's all about the money... we who have ME as per the ICC are VERY expensive to properly care for and hundreds of thousands of ME patients finally getting proper care would definitely affect the bottom line.

 

Excellent comment @Colleen Steckel, thank you. Agree with all you have said.

@Medfeb, I am saying IOM SEID criteria should not be used. I am one of those who does not support the IOM criteria. I know CDC have dropped the name SEID in their materials and now refer to the SEID criteria as ME/CFS.

I believe the IOM report made some useful statements such as making it clear ME is a physical illness affecting many body systems, as you outlined above, but I think the criteria fall short and the lack of exclusions risk bringing in people who would not meet the CCC or ICC criteria. I also think not having immunological and neuro symptoms in the core criteria is a failure too. I think conflation with other conditions will happen again as happened with CFS Fukuda. I think some people think if exclusions are allowed then someone with another illness as well as ME would not be able to get a ME diagnosis. However, these could be co morbid diagnoses. If they get treatment for an exclusionary condition and ME symptoms remain then they can still get a ME diagnosis for their ME. I am also concerned the term post exertional malaise in the SEID criteria is not thorough enough only requiring symptoms to be worse after exertion. There are other conditions where people with them would tick a box if they were asked do you feel worse after exercise/exertion. CFS criteria such as Fukuda and the dreadful NICE guidelines criteria are also bad but I don’t think the SEID criteria are much of an improvement and the no exclusions requirement is as said a big problem in my view.

You say that the IOM report paved the way for medical advisors to remove recommendations for GET and CBT. However, CDC’s updated webpages on ‘ME/CFS’ to healthcare providers still after acknowledging PEM and people should be cautious with standard exercise programs say at the end of that section “tolerance of aerobic exercise and normal levels of activity is also a long-term goal that can be related to improved function”, so they are still bringing in the idea of increasing aerobic activity (with no medical treatment as there is no recognised FDA treatment currently as we know) ultimately which as we know is massively inappropriate for pwme.

Thank you for sharing that NIH’s position at the time they initiated the Common Data Elements exercise was still that any criteria could be used, including Fukuda, and there is no agreement on operationalising a standardised research criteria. This is obviously another big problem which also needs to be addressed.

Finally, you say you are aware that there are US advocates calling for the Canadian criteria and I read that the CFSAC also recommended them. However, I am aware there are knowledgable US advocates who convincingly argue that the ICC criteria select ME the best and though the CFSAC recommended Canadian criteria for research before and after the IOM developed the SEID criteria this was only because at the time of the IOM assignment ICC had not been out for long so they thought there was more chance of getting the CCC criteria universally accepted which were heading in the right direction and detangling ME from the top broad Fukuda CFS criteria. ICC authors, some of whom of course were part of the CCC, say in their paper that CCC were a starting point and clearly ICC were the follow on finally dropping the term CFS, getting rid of the six months requirement for diagnosis and dropping the focus on fatigue. They are for diagnostic and research and I don’t buy the idea that doctors would find them hard to use.

As said above, I thought Colleen Steckel’s detailed comment above was superb and made it clear why the IOM SEID criteria will v likely continue to bury ME. I support advocacy that calls for the term ME/CFS to be dropped and keep CFS and ME separate. Doctors can code for ME or CFS. As CFS was a political construct developed by the CDC in the late 80’s and made even weaker with the Fukuda, I hope one day they will be dropped altogether. At this stage when ME research is gathering pace pointing to more evidence there are things such as brain inflammation does exist ( even if it still isn’t definitively proven yet) and which SEID does not recognise, cementing SEID into a code will only serve to perpetuate ME being sidelined. I see a repeat of the Fukuda fiasco.

I believe these proposed US ICD code changes – blurring distinctions between ME, CFS, and newly invented SEID – will have adverse effects worldwide because of the international influence of the CDC. ME needs to be preserved as a distinct disease and not blended together with poorly defined fatigue syndromes.

 

Why is the absence of exclusion criteria a problem?

Why is the presence of exclusion criteria a problem?

 

This makes sense to me, but I am a bit more optimistic. CCC is probably not ideal for clinical classification but I think the IOM proposal at least indicates a fresh look with PEM as a focus. My impression from talking to scientists in the UK (as apposed to babblers of various sorts) is that CCC is seen as good for research and IOM as good for the clinic. We should expect the two to require different criteria. (No scientist is going to use NICE fortunately.)

I agree that CFS has the disadvantage that it conflates with CF. But ME for me also has the disadvantage that it is conflated with the 'outbreak illnesses' that are the source of the spurious 'encephalomyelitis' word. A lot of competent research is now being done on the immunology and pretty much all the original immunological claims for ME, as a chronic disabling illness, have failed to stand up. The best experiment done recently was the Norwegian phase 3 trial which came out negative. We have some evidence of microglial activation but that is nowhere near 'encephalomyelitis' and even if it is confirmed I doubt it merits being called 'inflammation' or even 'immunological'. So the ICC idea of 'neuroimmune exhaustion' looks to me very much like a fantasy. I also doubt that the criteria are of any practical use because almost all the categories have a soft option that you can tick if you want to.

So I see SEID as a potentially useful way of getting away from CFS=CF and ME=a neuroimmune disease that never existed. I still like ME as a name because it is widely accepted and it will do fine if the focus is on PEM. But I don't see a code for SEID along side it doing any great harm.

 

In my view the absence of exclusion criteria is a problem because the 4 self reported symptoms in the core criteria of SEID could happen in other conditions and are not unique to any identifiable disease, so mixed cohorts will happen again as happened with CFS Fukuda criteria. ME doctor, Dr Enlander, comments in the screenshos above on SEID criteria and believe it was wrong to not include exclusions and SEID is a truncated version of the CCC in a manner that allows over diagnosis of the disease.

An Australian physician with ME tweeted last week ‘the problem with SEID is that far from making a better wine, it diluted whatever so much, that it’s almost water. For doctors, far from making it ‘easier’ to understand, it’s actually made it so non specific, that anyone trying to obtain mental traction on what it’s about, will fail.”

The primary rationale of the IOM report was to make their new "disease" easy to diagnose. A complex disease, such as ME, is not easy to diagnose, so ME had to go. Rather than recommend the ICC for ME, the CDC just renamed the SEID diagnosis "ME/CFS" with ME included in name only.

The presence of exclusion criteria need not be a problem, as, as I said above in my previous comment, if a person has another condition as well as ME and they are getting treatment for the other condition but the ME symptoms remain then the second condition can be classed as a co-morbid condition.

 

The second screenshot of Dr Enlander’s comments on the problem of no exclusion criteria for SEID.

 

I disagree with Jonathan Edwards that SEID getting its own code will not do harm. How can SEID be in the ICD CM in other disorders of the nervous system when the IOM said SEID showed no brain inflammation? Also the SEID criteria are only supposed to be only for clinical use, yet the history of CFS criteria is that the criteria end up being used for that which they were not intended. I don’t trust this will not happen again with SEID. As Medfeb said, the CDC still have no official position on what research criteria should be used.

I think there is a strong argument that SEID will repeat the CFS fiasco and the pem in SEID is not detailed enough. Someone with major depressive disorder will in a tick box questionnaire given by their doctor tick they have malaise after exertion. Although some on this forum seem to dismiss the studies by Jason on this (although I don’t agree with his conclusion on ICC), Jason shows how SEID can overdiagnose, so does a recent Norwegian study.

To add, CCC were supposed to be clinical criteria too.

 

https://www.meadvocacy.org/seid_classification_usurping_me_must_be_stopped

Some information about submitting comments in this blog.

 

How do you exclusion criteria proponents think that the combination of ME and depression should be handled? Should patients with ME be denied a diagnosis of ME because they're also depressed as result of having lost their job, identity, and other important things?

What's best for the patient: to be denied a diagnosis of ME because they're also depressed, or having to choose between one of the two diagnoses with potential loss of access to useful treatment, or to get a diagnosis for every condition they actually have?

 

The concern that IOM criteria would lead to diluted research cohorts and thus lack of progress is potentially valid, but rests on the assumption that we already have a pretty good idea of what the illness looks like. Yet if the underlying assumption is incorrect, it could also lead to lack of progress.

It appears there is one side taking the position that we already have a pretty good idea of what ME is and another side taking the position that we still need to discover what the illness is. We don't know what the problem at the root of the illness actually is, and we have no real biomarker. It is the second side that is on solid ground.

 

This is suggesting that the diagnosis of ME should be based on first excluding all other conditions. That's what Fukuda did and that lead to this disease being viewed as a wastebin diagnosis once all the "real" diseases were excluded. IMO, one of the things the IOM did well for clinical diagnosis is to change from a diagnosis by exclusion to a positive diagnosis based on a recognition of hallmark symptoms such as PEM. This does not mean that doctors should not perform a solid differential diagnosis to look for alternative diagnoses that could explain the symptoms. They have to do that and they also need to identify co-morbid conditions. But it would not seem to be a good idea to only diagnose ME once other potential conditions are successfully treated. What if there is no treatment for that other disease?

Not sure what you are referring to so maybe I am missing something. But the IOM report based its definition of PEM on at the CCC and stated that PEM was associated with not only an exacerbation of some or all of a patients symptoms but also a further reduction in function. Here's a few statements on what the IOM says about PEM

PEM is an exacerbation of some or all of an individual’s ME/CFS symptoms that occurs after physical or cognitive exertion and leads to a reduction in functional ability (Carruthers et al., 2003). As described by patients and supported by research, PEM is more than fatigue following a stressor. Patients may describe it as a post-exertional “crash,” “exhaustion,” “flare-up,” “collapse,” “debility,” or “setback.” PEM exacerbates a patient’s baseline symptoms and, in addition to fatigue and functional impairment, may result in flu-like symptoms (e.g., sore throat, tender lymph nodes, feverishness); pain (e.g., headaches, generalized muscle/joint aches); cognitive dysfunction (e.g., difficulty with comprehension, impaired short-term memory, prolonged processing time); nausea/ gastrointestinal discomfort; weakness/instability; lightheadedness/vertigo; sensory changes (e.g., tingling skin, increased sensitivity to noise); depression/anxiety; sleep disturbances (e.g., trouble falling or staying asleep, hypersomnia, unrefreshing sleep); and difficulty recovering capacity after physical exertion .​

The IOM also discussed the nature of the various triggers of PEM, PEM's typically delayed onset, and its delayed return to baseline. It noted that PEM was associated with a lowered anaerobic threshold on the second day of a two day test. And it said that this change was not seen in deconditioning.

I agree with you that these statements on CDC's website are problematic especially given that doctors still dont get PEM or the associated impairment in energy metabolism. The recommendations for generic sleep hygiene practices are also not appropriate. And there are other issues as well. Advocates continue to push CDC to address this and other issues. Some of these issues have been addressed and others still need to be.

I appreciate that the ICC had not been out for long at the time of the CFSAC recommendation or the letter to HHS from 50 experts calling for the CCC to be used. But I've been at a number of research meetings in the last year or two and many of the researchers stated they are still using CCC, including some who signed that letter. That suggests to me that it was not just a timing issue.

 

@anniekim @Colleen Steckel
Do you have any ideas how you will prevent that doctors diagnoze CFS instead of ME? I think, if there are two separate codes for CFS and ME that ME will be forgotten, too, unless there is education and advocacy. I think proposing two separate codes for CFS and ME should go hand in hand with proposing how this problem can be overcome.

(There is enough evidence for proposing two codes for ME and CFS, but there is also evidence for a proposal of adding SEID. I'm thinking - for those who don't want SEID added (me for example), there is evidence needed why adding it isn't backed up by science.)

Also, should be CFS kept under neurological disorders? Is there evidence for that? If not, where will it go? Under signs and symptoms? Or CF? I think this situation will be much worse for everyone, will they be diagnozed with CFS, ME or SEID. I am convinced that most doctors will diagnoze CFS instead of ME because most doctors won't use ICC/CCC, and a pwME most often fulfills CFS criteria, too, since these are broader.

Of course, this can change as soon as there's something like a biomarker. But sometimes I am not so sure that will keep the BPS people away. There already is enough evidence that ME is not "all in the head", deconditioning or false illness beliefs, but still they stick to their belief (because, I think, it's not about science but about power and politics).

Edit to correct/specify: I forgot that when writing about CFS under CF, that's already the case in ICD10-CM. Sorry.