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SEID vs CFS vs ME

Discussion in 'General ME/CFS Discussion' started by nanonug, Mar 3, 2018.

  1. nanonug

    nanonug Senior Member

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    I'm feeling a little malicious today so I've decided to poke the bear in the face with a potentially controversial opinion.

    Right now, we have SEID, CFS and ME, and combinations thereof, to name this condition we find ourselves in. This is my opinion on the three designations and what my preference currently is.

    1. ME, Myalgic Encephalomyelitis: this one is "wrong by definition." Without evidence, it asserts that our condition is a neurological disease. Problem is, no one knows what the etiology is. Therefore, calling our condition a neurological disease is, at best, wishful thinking, probably based on the desire to shut the psychobabblers off.
    2. CFS, Chronic Fatigue Syndrome: I have a natural aversion to any medical condition called "syndrome." It means no one knows what the heck the problem is but there is acknowledgement that there is something wrong going on. In this sense, truthiness about acknowledging unknown etiology is a positive. My problem with this designation is that our condition is not primarily about persistent fatigue. In any case, I still prefer CFS to ME as it doesn't make the kind of unwarranted assumption about the etiology.
    3. SEID, Systemic Exertion Intolerance Disease: this is currently my preferred designation. Correctly asserts that it is systemic, i.e., that it affects the whole body; correctly asserts that the main characteristic of this condition is post-exertional malaise; and, correctly asserts that the condition is a biological disease, thus shutting the psychobabblers off. Given that SEID was defined by the Institute of Medicine also brings a great deal of credibility to the name and therefore the associated condition.

    Having expressed that SEID is my preference, do I think this is the best possible designation of our condition? Probably not. Do I have a better proposal? Nope! For these reasons, and henceforth, I'll be referring to the condition formerly known as CFS, ME, ME/CFS or CFS/ME as SEID. Until something better comes along, that is.
     
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  2. pattismith

    pattismith Senior Member

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    I like the SEID name, but I also like the "syndrome" because SEID is a hypometabolic /energy crisis state that can be caused by several diseases.
    For example some mitochondrial diseases can produce CFS, Fibromyalgia or Autism, and may form a subgroup in CFS/SEID patients up to 5%
    Another example is the Low T3 Syndrome that was found in a cohort of CFS/SEID patient with a 16/98 ratio.
     
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  3. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    I think it's worth reminding:

    The suggestion of the term "SEID" was one of a number of Recommendations of the independent expert panel convened to undertake the 2015 Report.

    The term "SEID" has not been adopted by any of the sponsor agencies.

    Since the Panel's Report was published, in early 2015, none of the sponsor agencies has submitted a request to the NCHS/CDC ICD-10-CM Coordination and Maintenance Committee for consideration of addition of the term "SEID" for inclusion in ICD-10-CM, either as an additional ICD-10-CM category term, as a replacement for one of more of the current ICD-10-CM terms coded at G93.3 and R53.82, or as an inclusion term under an existing ICD-10-CM term.

    Since the Report was published, in early 2015, no other body or individual has submitted a request for inclusion of the term in ICD-10-CM.

    "SEID" is not a billable term in the U.S. which requires ICD-10-CM coded terms.

    "SEID" has not been incorporated into the WHO, Geneva's ICD-10. There are no proposals for its inclusion in ICD-11, either as a new, discretely coded for term, or as a replacement for one or more of the G93.3 legacy terms, or for insertion as an inclusion term, synonym term or index term to an existing term.

    The term "SEID" remains a Recommendation of the independent Panel, only.


    Extract from Proposal to ICD-11 by Suzy Chapman and Mary Dimmock, March 27, 2017:

    https://icd.who.int/dev11/proposals...lGroupId=4b26ab6a-393f-4a39-9051-4ac1d4b1a55a

    3.5 Consideration of the IOM Report's recommendation for a new case definition and change of nomenclature: The IOM expert panel members were charged with developing clinical diagnostic criteria and making recommendations for a new disease name. The IOM recommended that the term, "chronic fatigue syndrome" should not be used for those patients who meet the IOM's diagnostic criteria and instead, proposed that the term be replaced with "Systemic Exertion Intolerance Disease (SEID)."

    Experts and patients have raised concerns over the suggested new name [1].

    No proposals have been submitted to the U.S. Coordination and Maintenance Committee to add "Systemic Exertion Intolerance Disease (SEID)" to the U.S. specific ICD-10-CM. Instead, the CDC has begun to use the hybrid term "ME/CFS" [2] and intends to use that term as it implements the IOM clinical diagnostic criteria. Other agencies within the U.S. Department of Health and Human Services, including the National Institutes of Health, are already using this term and not "SEID" [3].

    Therefore, the authors consider there is currently insufficient evidence or support for incorporating the proposed "Systemic Exertion Intolerance Disease (SEID)" definition into ICD-11, either as a replacement for one or more of the G93.3 legacy terms or for insertion as an inclusion term, synonym term or index term.

    References:

    1 Jason LA, Sunnquist M, Brown A, McManimen S, & Furst J. (2015). Reflections on the Institute of Medicine’s systemic exertion intolerance disease.Polskie Archiwum Medycyny Wewnetrznej. 125(7-8), 576–581. [PMID: 26176405]

    2 Unger E, Lin J, Brimmer D, Lapp C, Komaroff A, Nath A, Laird S, Iskander J. CDC Grand Rounds: Chronic Fatigue Syndrome — Advancing Research and Clinical Education. MMWR Morb Mortal Wkly Rep 2016. http://dx.doi.org/10.15585/mmwr.mm655051a4

    3 A Report from the Federal Partners Meeting of the National Institutes of Health Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). May 2016. https://prevention.nih.gov/docs/programs/p2p/mecfs-federal-partners-report.pdf
     
    Last edited: Mar 3, 2018
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  4. unto

    unto Senior Member

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    I think that for now it is OK to call it ME / CFS;
    ME in honor of UK doctors who first had the courage
    to describe it, to study it and to give it a name over 50 years ago,
    CFS because, even if wrong, is the name with which now the whole world
    he knows the disease; in fact, CFS was used by the Americans after some
    clear epidemics of ME, however, since recognizing the organic etiology would have
    damaged both the private health insurances that the government itself, and the patients did not risk death was decided to call it with the name of a symptom CFS precisely.
    However, for me ME is the most precise definition,
    I do not know the studies of dr. Ramsey, but I think that
    an inflammation of the brain can explain it
    symptomatology sometimes different from patient to patient.
    SEID does not like me, because not everyone has intolerance
    to the effort (including me)
     
  5. Hip

    Hip Senior Member

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    It's not wrong by the latest evidence: myalgia means muscle pain, which is one of the cardinal ME/CFS symptoms in the Canadian consensus criteria; and encephalomyelitis means inflammation of the brain and spinal cord, and a Japanese study showed that there is chronic neuroinflammation in the brains of ME/CFS patients.
     
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  6. nanonug

    nanonug Senior Member

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    I don't doubt there is inflammation in the muscles and the brain. After all, SEID is a system-wide (systemic) condition and it would be very strange if the brain were not affected. This, however, is not the same as saying that SEID is a neurological condition. An encephalopathy due to liver cirrhosis is also not a neurological condition, for example, but it exists.
     
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  7. nanonug

    nanonug Senior Member

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    My understanding is that the criteria for ME also requires post-exertional malaise. Have you considered the possibility that your problem might not be what you think/were told it is?
     
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  8. Hip

    Hip Senior Member

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    True, but given the cognitive symptoms of ME/CFS, it would be hard to see it as anything other than a condition that involves neurological dysfunction. But I agree that neurology may be only one of several systems affected in ME/CFS.


    I only mentioned the meaning of the name myalgic encephalomyelitis as there used to be an argument that ME was not an appropriate name for our disease, as there was no good evidence for CNS inflammation; but the Japanese study supplied the evidence.
     
    Last edited: Mar 3, 2018
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  9. pibee

    pibee Senior Member

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    SEID , just at a quick view as sufferer, sounds also a bit trivializing like CFS.
    If i never heard of it and hear "someone has Systemic Extertion Intolerance Disease", i'd at first think they cant do sports. They're a bit fragile, that's it.

    I wouldnt think they cant shower, talk, watch TV.


    It should stay ME/CFS, until the mechanism is discovered. Imo.
    I like ME as personally I feel as it's brain disease, if it is or its' not ... we have those symptoms, so if SEID causes encephalopathy in us, or some blood flow impairment, then only SEID doesnt justify the symptoms.

    It is like neurological Sjogren's , neuroborreliosis, or Hashimoto encephalopathy.

    Somewhere in the name should be neuro, cognitive as great majority has that as primary symptom
     
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  10. nanonug

    nanonug Senior Member

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    At the risk of arguing over semantics, I don't see having a neurological dysfunction the same as having a neurological disease. For example, lactic acidosis may result in severe neurological dysfunction but it is not a neurological disease. Methemoglobinemia, which is not a neurological disease, will give symptoms very similar, if not equal, to those of SEID. (Which reminds I need to be tested for methemoglobinemia.)

    Let me conclude by saying, however, that I do not discount the possibility of SEID's etiology being neurological. It would certainly not be impossible. I just don't think there is strong evidence to make such proclamation. I also don't think there is strong evidence that SEID's etiology is immunological, genetic or microbiome-related, for example. As such, I prefer to remain agnostic as to the etiology.
     
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  11. Hip

    Hip Senior Member

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    That's true. I am not quite sure how one would strictly define a neurological disease. I guess if you look at classic neurological diseases like multiple sclerosis, Parkinson's or Alzheimer's, you find structural damage to neurons (although the damage in MS would appear to be caused by the immune system, so the cause is external to the neurological system). So perhaps neurological structural damage might be considered a prerequisite for a neurological disease.

    In ME/CFS, there is not much evidence of actual neurological structural damage (although some ME/CFS patient can have brain lesions), so I guess you could argue that ME/CFS does not fall within the normal remit of neurology.

    And that brings us to this dichotomy between structural disorders and functional disorders, where in the former there is objective physical and structural damage to the body's systems, whereas in the latter no obvious signs of damage can be detected, and the pathophysiology is thought to be due with the functioning of these systems going wrong.
     
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  12. caledonia

    caledonia

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    The name SEID was not adopted, although the definition was. The CFSAC and HHS have decided to use the name ME/CFS with the SEID definition.
     
  13. unto

    unto Senior Member

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    Yes, I have a 2004 CFS diagnosis (for what it's worth),
    I have moderate ME, I can do everything but with great effort ...;
    as I said in the previous post, the symptoms may be different
    from patient to patient and the inflammation of the brain can explain
    this ; in fact depending on the severity of the inflammation or based on which area of the brain is affected the symptoms can vary or be more intense .......
    I agree that ME is a systemic organic disease.

    Yes, I know that the diagnosis of ME requires
    "post-stress sickness" but I do not agree ...
    with this;
    SEID, I think it would bring a lot more confusion
    to what already exists in relation to the name, while I think
    that the additions of: systemic disease and m. biological can
    be made to the name ME / CFS.
     
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  14. maple

    maple

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    I think we should stop arguing about the name and get on with the research. At this point, more name debates are unlikely to help us.
     
  15. Webdog

    Webdog Senior Member

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  16. wastwater

    wastwater Senior Member

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    PVFS is the name I prefer,then I can fill in some of the blanks
    Acute EBV onset ongoing fatigue
    Fatigue and chronic fatigue are descriptors used in a wide range of conditions
    It doesn’t assume muscle symptoms and is coded as ME
    Just think it fits me best and I remain open to what is maybe
    I like the inclusion of biological psychiatry but not psychological and behavioural approaches so much
     
    Last edited: Mar 4, 2018
  17. caledonia

    caledonia

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  18. HowToEscape?

    HowToEscape? Senior Member

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    Not everyone has muscle pain; It is not a core essential picture of the disease, even if some committee of people who never experienced it themselves believed that to be the case.

    We seem to have a shifting constellation of symptoms, with the constants being a long lasting crash after exertion be on some threshold, and brain fog or at least diminished cognitive capacity during the majority or at least a substantial portion of waking hours each week, and perhaps a few others among a long list.
    Half a century of not looking for the unifying thread resulted in medicine founding it.
     
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  19. Hip

    Hip Senior Member

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    Not everyone has muscle pain (I don't have it), but I would guess it was probably a common symptom during the Royal Free Hospital outbreak of encephalomyelitis in the late 1950s, which led to the creation of the disease's name myalgic encephalomyelitis.


    But it's possible that not all patients will have PEM either. Even though PEM is a very interesting and fairly unique feature of ME/CFS, and deserves to be highlighted in any diagnostic criteria, whether PEM is actually present in all cases of ME/CFS is unclear to me. I'd like to see the data that the IOM group used to come to the conclusion that PEM is always present in ME/CFS.

    Likewise the unrefreshing sleep that is a required symptom for diagnosis under the IOM criteria: I wonder whether there might be a few ME/CFS patients who don't have this. In the Canadian consensus criteria, which also has sleep dysfunction and pain as required symptoms, they do point out that "there is a small number of patients who have no pain or sleep dysfunction, but no other diagnosis fits except ME/CFS". So you can still satisfy the CCC even if you don't have pain and sleep dysfunction.


    But bear in mind that the IOM criteria are clinical criteria; they are simple and easy-to-use criteria in the doctor's office, and that is their virtue; but I don't think they are intended for precise research studies. The CCC I would think are still the best for research work.
     
    Last edited: Mar 5, 2018
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  20. alex3619

    alex3619 Senior Member

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    If Stanford can verify the right arcuate fasciculus findings then there will be overt evidence of structural deviation from normal, though other work needs to be done to identify causal relationships.
     
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