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Sen et al: Systemic exercise intolerance disease: What’s in a name?

Discussion in 'Latest ME/CFS Research' started by mango, Jul 30, 2016.

  1. mango

    mango Senior Member

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    Systemic exercise intolerance disease: What’s in a name?

    Mahadev Singh Sen, Swapnajeet Sahoo, Shivali Aggarwal, Shubh Mohan Singh

    Associate Professor, Department of Psychiatry, Post graduate Institute of Medical Education and Research, Chandigarh, 160012, India

    Asian Journal of Psychiatry August 2016 Volume 22, Pages 157–158
    Published Online: June 23, 2016. Accepted: June 4, 2016. Received: June 2, 2016
    DOI: http://dx.doi.org/10.1016/j.ajp.2016.06.003

    Highlights
    • New diagnostic criteria and name ‘Systemic exercise intolerance disease’ have been proposed.
    • There needs to be awareness of this change in nomenclature, criteria and psychiatric nosology.
    • This change is reflective of the failure to destigmatize psychiatry.
    Abstract
    The syndrome characterized primarily by chronic, disabling fatigue without adequate explanation has been of interest to patients, clinicians and researchers.

    Chronic fatigue syndrome (CFS) is a widely used term for this condition in scientific and lay literature but is not acceptable to many patients because of perceived stigma due to implied psychological causation.

    CFS has recently been replaced by systemic exercise intolerance disease (SEID) by the Institute of medicine with the objectives of providing and disseminating evidence-based criteria and to provide a more acceptable name for this condition.

    Simultaneously, changes have taken place in DSM-5 with regards to this condition.

    Mental health professionals need to be aware of this change in the interests of patient care.

    The need to replace CFS with SEID and the nosological changes also indicate an inability to do away with the Descartian mind-body dualism despite efforts to the contrary and a need to debate the failure of the bio-psycho-social model to ‘mainstream’ and destigmatize psychiatry.

    Keywords: Chronic fatigue syndrome, Psychiatry, Systemic exercise intolerance disease, Nosology, Mind-body dualism, Bio-psycho-social model

    http://www.asianjournalofpsychiatry.com/article/S1876-2018(16)30248-9/fulltext
     
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  2. mango

    mango Senior Member

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  3. Valentijn

    Valentijn Senior Member

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    A pity she didn't actually read the IOM, and instead tried to blindly shoehorn it to suit her argument.
     
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  4. cfs6691

    cfs6691

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    I have noticed that some participants in a forum regarding their symptoms(if I have noted correctly Mij and OldBones in the forum The Big PEMPoll Question 3) have stated that their symptoms are worse in the morning which is also the case with me.I think that those who have introduced the term post-exertional malaise need to explain why malaise after rest should according to their theories be considered as post exertional malaise since in my opinion those two are polar opposites and some theories donot correspond to the symptoms that some of us experience and naming the condition after a term that doesnot correspond to the symptoms excludes de facto some of us from the definition and the research since the theories that are based on the assumption that fatigue occurs as a reaction to exercise(reaction that conveniently occurs the day after or even more than one day after exercise)do not explain our symptoms.
     
  5. duncan

    duncan Senior Member

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    @cfs6691, you may be confusing some terms. Exercise for exertion for instance. Also, the worsening of symptoms does not necessarily equate to PEM; for example, pwME often talk about a waxing and waning of symptoms, but this is distinct from PEM. And of course, PEM is NOT malaise.

    As for why some of us are worse in the morning, others worse later in the day - eh, who knows? I suspect much can be chalked up to simply luck of the draw. I have over the last 20 years qualified for both camps.
     
    Last edited: Jul 30, 2016
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  6. Mij

    Mij Senior Member

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    @cfs6691 feeling worse in the morning is related to OI and not what I would describe as PEM

    P= post, some of us (not me) are in a constant state of PEM. They've explained it to me but this not my personal experience with PEM. My symptoms are delayed.
     
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  7. hixxy

    hixxy Senior Member

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    Australia
    Author didn't even manage to get the name right.
     
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  8. halcyon

    halcyon Senior Member

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    It's not JUST malaise, I'm sure you meant.
     
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  9. duncan

    duncan Senior Member

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    @halcyon , yes, sorry. You are right.

    Clearly it can also refer to pronounced brain lapses, as evidenced by my careless observation. :)
     
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  10. duncan

    duncan Senior Member

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    PEM, of course, refers to an exacerbation of ME/CFS symptoms triggered by exertion. That exertion can be physical, intellectual, or emotional. It can be the sheer act of concentrating. The point is PEM is triggered, and it reflects a severe amplification of one or more of a pwME's symptoms.

    It can be a single symptom, like malaise or cognitive decline or pain, or the entire cluster, or a symptom permutation that shifts perpetually. But typically it is triggered, and it can be identified as a precipitous and unpleasant departure from the normal crappy disease swings.

    A difficulty in communicating this to some people new to the disease is distinguishing PEM from the waxing and waning of symptom intensity that can occur, um, naturally, over a given day, or over a longer span of time like a few weeks or months. There is a relapsing/remitting quality to the disease that, in part, characterizes it for many of us.
     
    Last edited: Jul 30, 2016
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  11. cfs6691

    cfs6691

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    How do we know that fatigue always correlates with exercise as opposed to fatigue being caused by some other cause(the body's inability to detoxify chemicals or regulate bile flow )I don't see how constant fatigue correlates to exercise and I think that PEM has resulted in most of the research going in one direction instead of having research starting from scratch on the basis of the symptoms and not based on an assumption that suits some researchers so that they can get funding or claim that they have or will find answers.Maybe a lot of the research is not yielding fruit because it is in the wrong direction.Since not all of us have the same symptoms a term that excludes some of us from the definition and the research is unfair and the researchers should explain how fatigue all the time at any time can be linked to exercise and not some other cause(except that they are not looking at other possibilities because it's not their problem if their theories or their research altogether doesn't work for some of us)
     
  12. cfs6691

    cfs6691

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    I don't see anything wrong with research looking at the general state of fatigue or at the waxing and waning of symptoms or at why some people feel worse in the morning and some worse at night.What's wrong with coming up with answers to those questions as opposed to focusing on exercise as a trigger for fatigue regardless of whether the timing of exertion and fatigue correlate.Maybe I and some of you will have to agree to disagree ,I just think that there is a need for more theories and more ideas so that we can get answers.PEM is a(not rigorously defined) symptom that not everyone experiences and which may not explain the entire condition.
     
  13. cfs6691

    cfs6691

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    By the way I am not new to the disease I was diagnosed in 1993 long before PEM was discovered and if my symptoms which predate PEM are not consistent with the concept of PEM I have the right to say so.Maybe some of you think that a bad theory is better than no theory,I think the opposite.
     
  14. halcyon

    halcyon Senior Member

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    I would say that fatigue without PEM or post exertional muscle weakness has received the lion's share of research attention to date. ME historically has been defined by the adverse response to exertion, without it you don't have ME. That would be like letting people without chronic fatigue be diagnosed with chronic fatigue syndrome.
     
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  15. halcyon

    halcyon Senior Member

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    The concept is not new. Acheson described it in 1959. I don't feel like looking farther back than that.
     
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  16. Snowdrop

    Snowdrop Rebel without a biscuit

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    @cfs6691 With reference to malaise, in my opinion it's referring more to the feeling of an exacerbation of symptoms that feel like the flu--not just more fatigue. And as mentioned cognitive issues as well. One can get hung up on the terms and while we generally are talking about the same things it's all ball park--the lived experience of this illness is hard to describe. How PEM is experienced can also depend on the severity of the illness and whether there are Orthostatic Intolerance issues. And again sometimes I've mistaken symptoms such as pain as ME when it's really fibromyalgia which I also have (diagnosed by rheumatologist) I also have Sjogren's another autoimmune. Many people are like me and have other health issues so it can be hard to tease out what is what at times.

    Over the years I've been sick my symptoms have changed some have gone new one's in their place and they can be more or occasionally less severe. Thankfully we have PR here where there is so much info -- slowly you will find things that relate to you.
     
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  17. cfs6691

    cfs6691

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    First of all sorry I didn't reply to a previous post from you.By the time I got around to it(I don't have any help with house chores etc)I couldn't find your post.If some ME/CFS sufferers have a clearly defined PEM and others don't, some have Orthostatic Intolerance issues and others don't ,some have gastroentestinal symptoms(such as myself and severe nausea mainly in the morning sometimes in the afternoon)others don't, some improve after taking B12 while others don't,I would like to see research into as many directions as possible, grouping ME/CFS sufferers according to symptoms,history or maybe according to the polymorphisms some of you have found out that you have so that the theories would be based on the symptoms(and genetic or other findings) of the different(more or less) homogeneous groups while using a term such as PEM limits research and the definition of the illness to one symptom that may not occur to everyone in a clearly defined form(distinguishable from general everyday fatigue)I don't know how to start a forum or a thread.Has there been any discussion of what research other ME/CFS sufferers would like to see done or those of you who have followed the forums and the threads longer than I have how many dinstinct ME/CFS groups do you think there are according to symptoms and positive reactions to treatments/ supplements(since history-exposure to viruses or medications, chemicals etc is information not always available on posts and/or might require testing done)?
     
  18. Sidereal

    Sidereal Senior Member

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    PEM doesn't imply that the person isn't feeling sick or fatigued all the time. It refers to EXACERBATION of symptoms following exertion.
     
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  19. cfs6691

    cfs6691

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    Then CFS seems more appropriate than PEM which is one symptom.How long after the exertion is the exacerbation supposed to occur so that it would be clear that it is cause and effect and it is not necessary to look for other mechanisms or environmental factors or even reaction to chemicals in the body?(I suspect that the higher levels of hormones in the middle and the end of my cycle adversely affect my liver and my symptoms,also exposure to chemicals such as freshly painted spaces cause symptoms.I have read though that some ME sufferers felt better while pregnant so hormones are not an issue for everyone).Are there consistent patterns of exacerbation including timing when you exert yourself?
     
  20. Cheshire

    Cheshire Senior Member

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    These are some of the research that shows a pattern of exacerbation.
    Discriminative Validity of Metabolic and Workload Measurements for Identifying People With Chronic Fatigue Syndrome
    Christopher R. Snell, Staci R. Stevens, Todd E. Davenport, J. Mark Van Ness
    http://ptjournal.apta.org/content/93/11/1484

    11.7. MOLECULAR RECEPTORS INVOLVED IN CHRONIC FATIGUE SYNDROME
    https://www.ncbi.nlm.nih.gov/books/NBK57253/

    Inducing Post-Exertional Malaise in ME/CFS: A Look at the Research Evidence


    Postexertional malaise in women with chronic fatigue syndrome.
    VanNess JM1, Stevens SR, Bateman L, Stiles TL, Snell CR.
    This graphic in particular sums up the effect of exercice in ME/CFS:
    [​IMG]
    https://www.ncbi.nlm.nih.gov/pubmed/20095909
     
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