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First Direct Evidence of Neuroinflammation - 'Encephalitis' - in ME/CFS
A small study with just nine patients has captured the attention of patients and researchers alike after reporting direct evidence of inflammation in the brain of ME/CFS patients. The finding was one of the highlights picked out by Professor Anthony Komaroff in his IACFS/ME...
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Chronic fatigue syndrome from vagus nerve infection: psychoneuroimmunological hypothesis

Discussion in 'Latest ME/CFS Research' started by Ecoclimber, Jun 23, 2013.

  1. Hip

    Hip Senior Member

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    I tend to agree with Firestormm: the hypothesis proposed only involves the brain and nervous symptom, and physical dysfunctions thereof.

    The dictionary definition of "psyche" actually gives two slightly different meanings for this word:
    You can see that psychiatry uses the word "psyche" in a specific technical sense — a sense which includes mediating the body's responses to the physical environment.
  2. Hip

    Hip Senior Member

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    RobinDurham
    Thanks very much for your post, Robin. Nice to get some background info.
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  3. Firestormm

    Firestormm Senior Member

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    Indeed. I don't suppose you might be able to arrange for us to read the full paper? Afraid I couldn't gain access. At least I don't think I could, it was a while ago :confused: :)
  4. Ema

    Ema Senior Member

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    This thread has been split as requested but may still need some work.

    It can be found here:

    http://forums.phoenixrising.me/index.php?threads/mind-body.24076/

    If someone would like to propose a better title for the new thread, please do so.

    Also, I provisionally moved it to the Spirituality forum for lack of any better ideas. If there is another more appropriate forum, please let me know and I will move it.

    In the future, please let us know as soon as a thread gets off topic. It's much better to move a couple of posts rather than 30 some that are somewhat interrelated to the original topic. It runs the risk of neither thread making much sense in the end.

    Ema
  5. Gijs

    Gijs Senior Member

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    I wonder what the next wil be with this hypothese, he must do labwork or mri study to confirm his hypothese. I think that he will do nothing anymore like so many times happens with ME/CFS hypothesis. I get little tired of al these hypothesis. It is all bla bla bla.... nothing happens anymore like always... sorry....
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  6. Snow Leopard

    Snow Leopard Senior Member

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    Yeah, but it is not without intention, the problem is a lack of research capacity in most places in the world. Because no one wants to tackle the difficulties in building capacity systematically...

    (sorry for another rant...)
  7. RobinDurham

    RobinDurham

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    Hello,

    The author wanted to respond to some of the things said on the thread but for some reason was unable to make an account, so he's asked me to post for him.

    The following are his words:

    Hello, and thanks for your interest in my paper, "Chronic fatigue syndrome from vagus nerve infection: A psychoneuroimmunological hypothesis." I've made it available for free here: http://twitter.com/MBVanElzakker/status/348600025825296384
    I opened up a twitter account so I could get the paper out there. Please feel free to share the link or the PDF because frankly I'm not sure if the publisher will let me keep them up.
    A few words on that prefix, because I think it's important: The term "psychoneuroimmunology" has nothing to do with not taking CFS seriously. It's a medical term, is well established in the biomedical research world from which I come and it is appropriate to this hypothesis. The Greek word "Psyche" means "goddess of the soul" but the English prefix "psycho-" does not. Especially in the context of a scientific term like psychoneuroimmunology it means "mind" or "mental." Importantly, in medicine, the concepts of "mind" and "mental" do not mean "by choice" or "malingering" or "you just need to try harder" or "you did this to yourself." Within biomedical research, the term "psychological" refers to mental processes such as behavior, cognition, perception and affect. From Komaroff et al. 1996: common symptoms of CFS include difficulty concentrating, forgetfulness, difficulty thinking, blurred vision, photophobia, irritability, depression, sleep disturbance and awakening unrested. Those symptoms are part of CFS, and they all have to do with mental processes such as behavior, cognition, perception, or affect. In other words, they are psychological symptoms. It doesn't make sense for researchers to just ignore those symptoms, and any hypothesis of CFS needs to be able to explain them, and why they happen alongside the "physical" symptoms.
    I'm not using the term psychoneuroimmunology for monetary reasons or because somehow someone is making me. Actually, I am not paid at all to do CFS research. I'm paid to do PTSD research (which I consider to be basically unrelated to this hypothesis). I have zero funding to work on CFS. I've thought about, researched, written, and published this all on my own time. I did it because a friend from high school has pretty severe CFS, and has for years. I know for a fact that this friend of mine would be out there conquering the world if she could just get out of bed. And that's what made me start to think skeptically about all of the CFS skeptics. I came up with this idea quite a while back, but was in a bad accident and had to put my life on pause for a couple of years. I'm sure many of you can relate.
    What I've written is a novel hypothesis, and it's either correct or it isn't. I did my best to explain why I think my newly proposed mechanisms make sense, how to test the hypothesis, and how to help people get better if it is correct. It would be great if this new hypothesis is accurate but if it isn't we should move on and we should understand that whoever convincingly falsified it was doing us all a service.
    One thing that I want to make perfectly clear, because I understand that it's a sensitive subject - In the article, I discuss all kinds of potential treatment options that could be empirically tested, including glial inhibitors, specific antivirals, vagus nerve stimulation, vagotomy, cognitive therapy and graded exercise. Let me reiterate what I'm advocating in terms of exercise therapy because I understand how controversial it is. I said all of this in the article, but I want to expand it
    Read the article first for background and context, but this is the expanded disclaimer:
    Graded exercise therapy would make some people worse if done on its own, as it was in PACE. But that's not what I recommended. I recommended it as part of a regimen that includes glial inhibitors or other mechanisms to drive down the proinflammatory cytokine response. In other words, I recommend graded exercise for after the fatigue is gone, as part of recovery. If the VNIH is correct (and that is a very big if), glial inhibitors would prevent graded exercise therapy from making symptoms worse because post-exertional malaise is caused by, in my own words, an "enhanced feed-forward loop of vagus nerve cytokine signaling" caused by activated glia. The implication is that once someone is on glial inhibitors, they should be tolerant of graded exercise therapy. To repeat - according to this hypothesis, the reason some people get worse with graded exercise therapy is because they have pathogen-activated glia. Everyone gets a proinflammatory cytokine burst when they exercise; in CFS that system is already primed for exaggerated signaling. Treat that, and you treat the reason they get worse and are left with only the benefits of graded exercise during recovery because the fatigue is gone. Of course, as I state explicitly, this is a hypotheses that needs to be tested. And no one with CFS should ever be forced into any kind of therapy.
    In the words of my friend with CFS, "Of course if the mechanism preventing us from exercising like a normal person is treated with medication, patients would naturally start conditioning again. I know I would be in the gym EVERY DAMN DAY. I think I would live at the gym. And the pool."
    Thanks and stay strong,
    Mike.
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  8. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Thanks, Robin.

    I am logging off now so only time for a quick response to the quoted section above:

    I disagree with the psychological interpretation of the symptoms listed, and with the claim that depression is a common symptom of ME. I believe that research has found that mental illness, including depression, is no more common in ME/CFS sufferers than in the general population.

    The symptoms listed can be due to nutritional deficiency, stress hormone abnormalities (e.g. low cortisol and low melatonin and high adrenaline/noradrenaline - which can have physical causes) and physical visual abnormalities such as abnormal pupil contraction and nystagmus. Photophobia, notwithstanding the misleading name, is not a phobia in the colloquial sense but an intolerance of light, which can have a range of physical causes.
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  9. Valentijn

    Valentijn Activity Level: 3

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    For starters, Komaroff was likely wrong about depression being common. There is a lot of research saying that CFS patients are depressed, but the questionnaires used are extremely inappropriate: they equate physical and cognitive disability with depression.

    I'm not sure how "behavior" would be considered a psychological symptom.

    The cognitive symptoms are very much tied to problems with orthostatic intolerance and/or post-exertional malaise, hence it seems odd to call these psychological. Blurred vision tends to come (for me anyhow) after excessive reading, much as muscles often become unreliable and spasm after too much use.

    Sleeping disturbances are often related to problems like pain, raised heart rate, twitching muscles, sleep apnea, etc. I'm also not sure why "awakening unrested" would be classified as psychological.

    I think your friend has good intentions, but it seems he is not reading the research thoroughly which he is relying upon. The psychology-focused ME/CFS studies usually have severe problems with methodology, unsupported assumptions, inappropriate or lacking control groups, lack of blinding, lack of objective outcomes, and inappropriate cohorts. Reviews based on those studies are consequently often erroneous.
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  10. lansbergen

    lansbergen Senior Member

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    Glial inhibitors, not for me. I want the glia cells to perform their positive actions at full speed n my CNS and PNC.
  11. Hip

    Hip Senior Member

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    I think you guys missed this (quoting MIke): "Within biomedical research, the term psychological refers to mental processes such as behavior, cognition, perception and affect."
    So you guys seem to be disagreeing with the definition of the word psychological. Disagreeing with the dictionary, in effect.

    ME/CFS is an illness with psychological symptoms, by the definition of that word.

    Equally, ME/CFS could also be called an illness with mental symptoms, since in this context, the words psychological and mental have the same meaning.

    I always tell people that ME/CFS is an illness that has mental symptoms, because this is indeed the case, just by the definition of the word mental.

    But remember in illnesses with psychological/mental symptoms, those symptoms can have psychological (psychogenic) causes, or physical causes.

    So for example, if you have a theory that says the brain inflammation arising from a central nervous system infection is the cause of your psychological/mental symptoms of anxiety, depression, brain fog, memory problems, etc, then you are suggesting a physical cause behind these psychological symptoms.



    The crux of Mike's hypothesis is that people with ME/CFS have glial cells that, due to microbial infection, vastly increase the amount of proinflammatory cytokines they pump out after exercise, and that, according to this hypothesis, is the reason people get worse after exercise. Prevent the exaggerated output of proinflammatory cytokines from the glial cells, and you may eliminate the post-exertional malaise effects.
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  12. ukxmrv

    ukxmrv Senior Member

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    When people with CFS and ME feel better they naturally do the activities that they have not been able to do.

    GET isn't needed.

    It's not a question of taking away the bad exercise effects and then making patients do GET.

    We don't need it. We never needed it. The day the symptoms end for me I walk, run away. I'm not doing GET again. There never was an understanding of what was happening to my body when I did GET. The same people will be there once again trying to cling to their jobs and I'm not seeing them again when this is all over.

    If we can control the symptoms then we lock the door on GET and the sellers of GET. The gravy train will be over for them.
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  13. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    100 likes for this!
  14. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    The psychs can redefine psychology until they are blue in the face as far as I am concerned. All definitions I can find on reputable sites say things like "the science of mind and behavior"; the mental or behavioral characteristics of an individual or group; the study of mind and behavior in relation to a particular field of knowledge or activity" (Merriam-Webster).

    Can you give us a link to a reputable site that gives a different definition of psychological?

    If we are talking about glial cells, this is neurology - a biological/medical science.

    I have experienced depression and some other psychological problems. I can tell the difference between these and what I have now. Shame some psychs can't.

    There was a question in my mind/ brain (!) for a while as to whether my adrenaline surges were causes of, or caused by, anxiety. I worked out that it was the former, from careful observation and analysis of the times at which they happen(ed).
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  15. Firestormm

    Firestormm Senior Member

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    Pacing and watching the activity I do do help me to 'control the symptoms'. When I am feeling better - on a good day - I used to do far too much. It is only by learning about and accepting my condition and through 'grading' my activities can I achieve over a period a more sustained level. You say potato and I say spud :)

    I have the full paper now and am slowly reading through it. Just have a lot on at the moment and grading my activities accordingly ;) i.e. takes me longer to accomplish anything! :D
  16. Bob

    Bob

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    But that's 'pacing', Firestormm, not GET. Traditionally, GET would ignore your symptoms, and teach you to ignore your symptoms. It would simply train the patient to incrementally increase their activity levels, regardless of their level of illness, and fluctuations, etc. In other words, it would be insensitive to the nature of your condition, and whether you had done too much activity, and whether activities were sustainable. This brazen disregard for the health of the patient is because the traditional psycho-social model of illness considers ME to be purely a behavioural disorder, resulting in deconditioning.

    However, they have slowly been changing the nature of GET, such that it is really now 'pacing with goals'.
    Which I think is a good thing, as so many patients are prescribed it, despite its near uselessness.

    And it's nothing to do with semantics or language. The differences between traditional GET and 'pacing' and 'pacing with goals' is essential for patients. The difference can be a matter of having a life or being severely disabled.

    The model of illness traditionally associated with GET is such that patients are said to focus on their symptoms too much, and have become de-conditioned as a result of avoiding exercise. So it's a cognitive-behaviour treatment aimed to 'treat' ME (i.e. to 'reverse' the illness.) (This is how the PACE literature describes it.)

    In the newer versions of GET, therapists are supposed to be sensitive to baselines, fluctuations, and relapses, and are supposed to 'collaborate' with the patient. As such, in practise, the therapist is actually validating the patient's subjective interpretation of their illness. So the therapist is not encouraged to sensitively focus on the patient's symptoms, and take account of them. So where exactly does this leave the theoretical model of illness upon which GET is based, if the therapist is symptom-focusing? It's all redundant. Their therapy doesn't work, and their theoretical model of illness is corrupt, and has been proved inadequate.

    And anyway, why are we discussing GET? Even when implemented sensitively, in a high-profile expensive clinical trial, we know it only helps 13% of patients, at best, in a heterogeneous cohort, and leaves the average patient severely disabled, with no meaningful improvement in disability when objectively measured.
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  17. Hip

    Hip Senior Member

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    If you look at the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) — the manual that lists all currently recognized mental health disorders — you will see that cognitive disorders are included.

    The DSM-IV definition of cognitive disorders includes learning, memory, perception, and problem solving disorders, and includes amnesia, dementia, and delirium.

    So the DSM-IV definition of a mental disorder is broad.

    But to reiterate: mental symptoms may well be caused by an underlying physical dysfunction, such as a dysfunction in the central or peripheral nervous system. I think that the vast majority of mental disorders will in future be shown to be caused by underlying physical causes.
    Firestormm likes this.
  18. Bob

    Bob

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    I'd be interested to know if HIV, MS, and Parkinsons etc. patients are often described as having mental, psychological, or cognitive-behavioural, symptoms?

    Just a brief word about psychiatry. It is widely acknowledged that some psychiatric illnesses have an 'organic' origin, rather than a psycho-social origin. For example, schizophrenia and bi-polar. To my knowledge, the scientific consensus is that schizophrenia is a biomedical illness and the primary treatment is with drugs. Schizophrenia is rarely considered a cognitive-behavioural disorder and CBT is not the primary treatment. Patients can respond well to medication. Likewise, patients with severe bi-polar can respond well to mood stabilisers, and CBT can be useless in severe cases, and is not the primary treatment. There are still going to be some old-school theorists who insist that bi-polar and schizophrenia patients should only be prescribed psychological interventions. But perhaps they haven't studied the research or met a patient with a severe episode of psychosis.

    But other biomedical illnesses, which also affect the brain, are not considered primary 'psychiatric' illnesses. For example, Parkinson's and MS are treated as neurological illnesses.

    Why the difference? I think it's mainly an accident of history whether a particular disease comes under a psychiatric label or not.

    ME has neurological symptoms, and perhaps these symptoms can have a psychological impact on the lives of some patients. But ME is not a primary cognitive-behavioural disorder. Any researchers should be sensitive to the use of language, and how labels affect the way that patients are treated.



    An extra note: Mady Hornig is firmly in the biomedical camp, but studies "neuropsychiatric disorders".

    "A physician-scientist, she is widely recognized for her animal model and clinical research on the role of microbial, immune, and toxicologic factors in neuropsychiatric disorders, including autism, schizophrenia, attention-deficit/hyperactivity disorder, obsessive-compulsive disorder, and mood disorders."
    http://www.mailman.columbia.edu/our-faculty/profile?uni=mh2092
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  19. Firestormm

    Firestormm Senior Member

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    Bob I was replying to ukxmrv but really GET had been taken out of the context I believe of what Mike (the author) was talking about in post #47 above; viz:

    I was being 'glib'. People's personal experiences of 'graded' exercise or activity as per what they might have been taught are I think clouding what Mike is saying here. He is talking about using this approach as part of a recovery protocol. Sounds sensible to me once you have removed the issue.

    Grading activity - if you ask me - is akin to pacing in the real world. Even Grading and being aware of exercise limits is sensible too. What isn't sensible is forcing someone to push through their limitations ad naseum.

    When it comes to published papers about GET and the wording it contains I think each can be judged on it's merits. PACE was clearly off of this planet in that respect. Similarly, the writings of 'experts' should be judged accordingly.

    Before this thread was split conversation had inevitably drifted into the 'psychological' debate we so frequently have. I'd kind of like to stick to the paper and what the author has to say about his hypothesis; but he does raise GET and CBT in the paper and in this post above so it is perhaps relevant - but in the context of recovery following treatment not as treatment per se.

    N.B. Thanks Mike for engaging. I swear I shall read your paper. It is now on the top of my pile of things to do :)
  20. Bob

    Bob

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    Exactly right. As soon as our illness improves, we're away. Try stopping us! How could we regularly over-do activities and experience crashes otherwise? And look at Maria Grjerpe, who was prescribed Rituximab. She went from bed-ridden to orchestrating a highly motivated and successful international fund-raising campaign, as soon as the Rituximab kicked in.
    GET has been proven to be of nearly zero value, but has been hyped to be a cure.
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