Study proposes new name, definition and biomarkers

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New case definition and biomarkers suggested from Australia’s Deakin University: Neuro-Inflammatory and Oxidative Fatigue 
An Australian university is suggesting a new name to replace ME/CFS. The new name is Neuro-Inflammatory and Oxidative Fatigue or NIOF, after they studied 196 subjects with CFS (CDC criteria) and 83 with chronic fatigue and found two distinct groups.
Analysis showed two well-separated clusters with highly significant differences in symptoms and biomarkers. The biomarkers suggested for NIOF are IgM/IgA responses against LPS of gut commensal bacteria (leaky gut), IgM responses to O&NS modified neoepitopes, autoimmunity to serotonin, plasma interleukin-1 (IL-1) and serum neopterin.
“There is now evidence that ME/CFS is a neuro-psychiatric and physiosomatic disease accompanied by activated immune-inflammatory, oxidative and nitrosative stress (IO&NS) pathways, lowered levels of key antioxidants, signs of immunosuppression, increased bacterial translocation or leaky gut, autoimmune responses directed against key neuronal molecules, including neurotransmitters and anchorage molecules, and CNS disorders such as a lowered brain blood flow and metabolism.”
The paper’s author states that data, not consensus amongst experts, should be used to make classification rules.

The author argues that NIOF is present when chronic fatigue is present for more than six months; and four or more of the following six symptoms are present and score higher than 4 on the Fibromyalgia and Chronic Fatigue Syndrome Rating scale, muscle tension, memory disturbances, sleep disorders, irritable bowel, headache and a flu-like malaise. Apart from the clinical diagnosis NIOF they also propose to specify the ‘stage’ of NIOF, e.g. chronic deteriorating, in remission, relapsing- remitting, and precipitated/exacerbated by infections or psychological stressors, and by biomarkers.
“This study validates a new case definition for “NIOF”, a neuroprogressive disorder, which should be further defined using 5 specifiers, i.e. with or without 1) post-exertional malaise, 2) abdominal discomfort syndrome, 3) depression, 4) hyperalgesia / fibromyalgic complaints and 5) comorbidies with medical/psychiatric diseases. Therefore, NIOF is a statistically-derived, clinically-based diagnostic label afforded to patients who suffer from a symptom cluster with a range of different clinical specifiers and neuroprogressive pathways.”

The paper briefly covers the history of ME and CFS and describes the International Consensus Criteria (ICC) as criticised and flawed. The paper says criteria published by the USA’s Institute of Medicine (IOM) are even more flawed and inadequate, as patients with psychiatric disorders may be categorised as suffering from SEID.
“The findings also show that CFS is a very simplistic, over-inclusive diagnostic label afforded to patients who in reality suffer from a cluster of symptoms with a range of different pathways. Secondly, the ICC and IOM criteria are not correct because our statistical approach showed that fatigue is a key symptom of the cluster- derived classes while these case definitions deleted chronic fatigue as a key symptom. Moreover, the ICC and IOM criteria did not take into account that post-exertional malaise (PEM) significantly divides ME/CFS into those with and without PEM showing that PEM is a specifier and that ME/CFS without PEM is also a valid diagnostic class.”

The paper includes recommendations for future research. “Further research should further refine the case definitions for NIOF criteria presented here by using 1) a broader list of illness symptoms, 2) objective measurements of symptoms such as EEG sleep patterns, neurocognitive testing, repeated cardiopulmonary tests, NMR spectroscopy to measure in vivo ATP production, etc.; and 3) staging characteristics (course, duration of illness) (Morris & Maes 2013b). Furthermore, future research should examine the 5 specifiers, (PEM, abdominal discomfort syndrome, depression, hyperalgesia/fibromyalgic symptoms and comorbidities) in order to construct precise NIOF criteria. Finally, this research should also use different omics-based biomarkers to externally validate the case definitions and specifiers.”

Prof Dr Michael Maes from Deakin University, in Victoria, Australia had the paper published in Neuroendocrinology Letters. Here is the full paper.

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18 thoughts on “Study proposes new name, definition and biomarkers”

  1. I don’t think a study which includes only 169 people provides enough information for the organization to make such broad recommendations regarding another name change or to recommend new criteria and diagnostic tools. And the word “psychiatric” should not show up ANYWHERE in ANY research papers. I think the MECFS community has had their fill of research organizations trying to attach that term to our illness.

    1. Even though it was Fukuda they used to diagnose, it was Australia that did the study and they will NOT let go of the psychiatric slant.

  2. I knew there would be categories just like MS has 4. I think the name is fitting and better than CFS or SEID. Perfect? Not sure but neither is “Parkinson’s” or “Hysterectomy”.
    Good research and analysis of it. I can share this and especially the paragraph on the categories. I am not sure of the criteria and I actually do like the criteria SEID spells out as I could have been diagnosed 36 years ago using it. This criteria I am not so sure how quickly I would have met the criteria and may have gone undiagnosed for a decade or two. SEID diagnoses from the get go, in my opinion, and any doctor can do it but there seems to be a need for many specialists to be involved with this criteria or the patient needing to know they have ‘NIOF” and get to the right specialist.
    I believe for years I was relapsing remitting but have gone down the “rabbit hole” and I seem to be “chronically deteriorating”.

    1. Thanks Janet, I thought the categories was especially interesting too. I’m sorry to hear you are in ‘chronically deteriorating’.

  3. Knee-jerk reaction with just a skim (sorry didn’t read the full article – it lost me at the 5 required criteria): Look at the chosen cohort for this study. This is yet another rearrangement of the (CDC) 1994 Fukuda Definition for cfs (this one requires depression and psychological comorbidities). The Fukuda definition was concocted from politics, not unadulterated science, and was a deliberate. (See http://www.name-us.org/AdvocacyPages/StrausToFukudaLetter.pdf ). And as an aside, how many decades is it going to take for them to “get it” that the community is not going to accept any name that contains the “F” word?! This article should not include ME. Should be sub-headed, “Fukuda: Back to the Past”

    1. US bio-researchers (Hornig/Lipking/Montoya, etc.) are all using Fukuda. All they have to do is ignore the psychiatric criteria as it is not necessary to diagnose.
      So Fukuda can be used, it just depends on the integrity of the Researcher and in my opinion although I like the categories because I do believe this disease has categories it is ridiculous to depend on any research from England and Australia because they are not letting go of the psychiatric slant or they do use Oxford which we all know is a disaster and one of the worst definitions that exists.

    2. No, this does not require depression and psychological comorbidities. They are subcategories, which means that it allows for them, but does not require them. That is actually good, because people with this illness DO sometimes have depression and/or other comorbidities, but some other definitions automatically try to say that they cannot then also have this illness. The actual defining criteria that this proposes are:
      “that NIOF is present when chronic fatigue is present for more than six months; and four or more of the following six symptoms are present and score higher than 4 on the Fibromyalgia and Chronic Fatigue Syndrome Rating scale, muscle tension, memory disturbances, sleep disorders, irritable bowel, headache and a flu-like malaise”
      After that, it goes on to say that there are other classifications and subcategories, and that is what you saw when you skimmed.

  4. I don’t like the word fatigue being used in this definition, as to me this word minimizes this specific symptom. In addition, the term “neuro-psychiatric” implies that symptoms can be treated by a psychiatrist, which is not the case, although I will bring this to the attention of my psychiatrist at our next appointment and ask her to fix my autoimmunity to serotonin. To me, the new name they are proposing is somewhat helpful without the word fatigue, but to call it a neuro-psychiatric condition when it clearly is an autoimmune disorder is ridiculous.

  5. Carol Carlson-Sunshinebright

    It was very disturbing to see the word, “psychiatric” again. IMO, this whole “research” is discredited. Also, especially that it used only 169 subjects. This is not scientific. I hope the community does not take this seriously.

    1. Very little research happens here in Australia, you can see just how little here is federally funded here: http://stgmeaction.wpengine.com/2015/11/16/aust-senator-questions-government-on-lack-of-action-on-me/
      Griffith University also does interesting research but also has very small sample sizes: http://stgmeaction.wpengine.com/2015/09/17/study-shows-immune-differences-in-moderate-and-severe-cfsme/
      I’m pushing for more biomedical research in Australia, let’s hope I have more to write about in future.

      1. Tell them any Researcher worth their weight knows not to use the psychiatric criteria of Fukuda. US researchers use Fukuda but have the integrity and knowledge to know you don’t use the psychiatric criteria and don’t write about it.
        They are under the “Crown” and are too afraid to buck the UK Oxford definition entirely.
        And yet, I KNOW with the categories they are on the right track.

  6. Here is a hint – don’t EVER USE the term “NEURO-PSYCHIATRIC” in a paper on CFS as a matter or showing some respect to those who have suffered from it for so long. We have had enough of that. The research may be good, but most who have suffered long and hard actually feel like throwing up when they see that term.

  7. I am also not sure about having “neuro-psychiatric” in there, especially when depression is put in as one of the symptoms. Having depression as one of the systems confuses me a little. I am sure that in a wide range of long term chronic conditions you will find some people have depression, however that may not be a direct result of the illness itself but a reaction to being ill. Also with energy reserves severely strained due to the illness it is always possible that this cold mistaking make people believe that they have depression.
    Is it possible to completely remove any reference to psychiatry in symptoms of the illness? Not completely but NOT because this is a psychological illness but because chronic physiological illness do bring with them some mental health problems, especially as I have mentioned, depression. But there needs to be a clear statement about whether these are seen as a part of the illness itself or a reaction to that illness. These are two very different things.
    I am also not sure about having the fatigue in the title itself, because i can see what would happen the genre la public will jump on hat and this illness will still be seen derogatorily as “oh that fatigue thing”. However it is certainly better than chronic-fatigue and 1000’s times better than “yuppie-flu”, i still remember that one that the media latched on to.

  8. I actually find this to be promising research. I agree that it used a small cohort, and that the term neuro-psychiatric should be avoided. The lengthy history of certain psychiatrists badly harming patients with their inaccurate claims and dangerous treatments, means that simply giving any suggestion that this is at all psychiatric engenders an understandable negative response . However, the way that it is used in this research is not as it was in previous research. That research was meant to discredit and to say that it is all in our heads, and we just need to exercise and have CBT to get better….oh, and maybe take some antidepressants while we are at it.
    An auto-immune response to serotonin is a lot different than that, and it fits with much of what I have read, experienced, and encountered in other patients. And, it certainly could not be fixed by pushing SSRIs and SNRIs on us, nor by GET and CBT. In fact, it is showing that the previous push for us to take antidepressants was, in fact, quite harmful. Also, an autoimmune response is a physiological issue, so there is no reason to even mention the word psychiatric.
    Plus, it was far from the only criteria mentioned here, and the remaining diagnostic criteria are physical. And, the subcategories are good. The separate specifiers do allow for psychiatric issues, which is good. People CAN and do have both, and some of the previous DX criteria did not allow for that.
    Having this illness in itself, can cause one to become depressed. After all, being so sick, and losing most of the aspects of life that matter to us is depressing. With definitions that did not allow for that, if one was depressed, too, he or she had a strong likelihood of not getting the DX of this illness, and thus not getting treatment for it. That was not good. A misdiagnosis, whether of depression when it is this illness, or of this illness when it is actually just depression, does not help the person. Acknowledging that they can co-exist is good.
    All that said, personally, I don’t care that much what type of category they want to stick it under as long as it brings good research and good treatments that actually help and do not harm. A category that doesn’t add stigma would be nice, but my main concern is finding something that helps us get better. I am primarily against a psych label because when they stick that on, they stop looking at the physical issues and stop looking for treatments that will actually help, and push those that cause us to get sicker.

  9. I read the article (have a scientific background). I then looked up Michael Maes to see where he stood in the MECFS debate. I think some of the posters here have misjudged him. This is an excellent talk he gave to Emerge (an Australian MECFS society) and well worth watching – even though it is a bit long. He pretty much dismisses the European mindset that MECFS is all in the mind and goes on to explain what he believes:
    http://emerge.org.au/dr-michael-maes-immune-pathophysiology-mecfsfm/#.VmYRrbiGSko

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