Traumatic brain injury - similarities with and differences to ME/CFS, including PEM

Discussion in 'Neurological diseases' started by livinglighter, Mar 8, 2022.

  1. Mithriel

    Mithriel Senior Member (Voting Rights)

    I did too much 2 days ago and now I have a look of a hamster as my glands in the neck swell up and I have swollen glands under my arms too. All this plus dizziness and feeling fluey, including a sore throat.

    Now PEM does not give that every time but there have to be cases like that among patients with brain injury, stroke, MS, post chemotherapy and all the rest before they can claim they have PEM that is similar to ME. I see no sign that any of the researchers are looking for it.

    Enteroviruses cause brain injury so there could be similarities between TBI and ME. I had very little fatigue for the first 8 years or so but lots of neurological problems which have continued.
    Last edited: Mar 12, 2022
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  2. Wonko

    Wonko Senior Member (Voting Rights)

    On the 'plus' side some people think hamsters look cute.

    Not andrex puppy, owned and looked after by someone else, cute, but still...

    My ME started off 'mostly' cognitive/neurological, there was a significant 'physical' impact but not enough to knock me below the societal norm - but cognitively/neurologically, it issue.
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  3. livinglighter

    livinglighter Senior Member (Voting Rights)

    Thanks for creating this thread @Hutan

    I have quite a lot to say about the similarities, and it's great to have a dedicated place for everyone to share their views.
  4. livinglighter

    livinglighter Senior Member (Voting Rights)

    It will be interesting to find out. Brain injury patients are a mixed cohort as there are several causes. Plus, location, severity and type of injury will most likely influence further conditions and symptoms caused by injury.

    Would you consider your swollen glands more of a flare-up if it doesn't always happen with PEM?

    I tend to get different symptoms during flare-ups, PEM and relapses.
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  5. ukxmrv

    ukxmrv Senior Member (Voting Rights)

    Having had concussion after a road traffic accident (and other injuries) it may be that for some other people with similar onset, it's the ongoing problem with the muscles, joints etc that is causing the sensation they think is like PEM.

    Apart from whiplash which has a fair bit written around the controversary, I was able to find very little online about how the accident I had caused the pain, extreme stiffness, joints clicking and sticking. lack of range of movement etc after. I had huge bruises and lot of scrapes, abrasions plus more.

    There was, I think, a type of Fibromyalgia described after an accident and it may be that people with a concussion could also have something like this?
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  6. Mij

    Mij Senior Member (Voting Rights)

    Concussions can also lead to POTS.
  7. Mithriel

    Mithriel Senior Member (Voting Rights)

    PEM was the term the CDC used when they invented CFS. It was a sop to the ME experts or something because they never looked to see what the patients actually experienced. Before that ME was seen as a disease where there was an abnormal response to exercise and symptoms varied by the hour, day week and so on.

    So we try to fit our experiences into a definition that doesn't quite fit.

    I get exhausted immediately if I do too much and it leaves me with painful muscles and ME symptoms. I know I have done too much for too long if I get the sore throat and swollen glands, though that can also happen as the first sign I get that I did too much three days before.

    I find it difficult to fit everything into PEM, flares and so on. It could be because I got used to my disease in looser terms and now I am too old to change! I blame cognitive problems :)
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  8. perchance dreamer

    perchance dreamer Senior Member (Voting Rights)

    My fibromyalgia started after an accident. Before that, I had lead a virtually pain-free life.
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  9. livinglighter

    livinglighter Senior Member (Voting Rights)

    I think there may be a few conditions which are like fibromyalgia.
    Coincidently, I came across a medical article yesterday morning about a patient diagnosed with fibromyalgia getting rediagnosed with centralised pain secondary to TBI by an Internist Pain Specialist Doctor.

    I actually know someone diagnosed with fibromyalgia who previously attempted suicide that required hospitalisation. They became ill before I did but when I think of it the beginning pattern of symptoms was the same. They first has bad tiredness, which required caffeine tablets to keep up with life demands. That's how it started out for me as well.

    When things became worse, I think that was when they were diagnosed with fibro. I was not sick yet but we used to wonder what could have caused it. The only thing that ever stood out was the suicide attempt, but I never imagined it could cause anything as they survived. I have now learnt suicide attempts can also cause Acquired Brain Injury (ABI) due to toxicity, lack of oxygen to the brain and concussion (mTBI).

    There is actually a head injury guideline for all of this.
    Last edited: Mar 13, 2022
  10. Forbin

    Forbin Senior Member (Voting Rights)

    It might be interesting to see if those with post-exertional fatigue following brain injury show the same post-exertional increases in sensory, adrenergic and immune gene expression that ME/CFS patients do after exercise.

    In Alan Light's 2009 paper, "Moderate exercise increases expression for sensory, adrenergic and immune genes in chronic fatigue syndrome patients, but not in normal subjects"(, ME/CFS patients showed marked increases in the expression of certain genes following exercise compared to controls. The timing of these changes in gene expression certainly seem to suggest that they may have something to do with PEM.

    The top row shows the response of normal controls. The bottom row shows the response of ME/CFS patients. According to Dr. Light, it's actually even worse for ME/CFS patients than it looks, because their normalized baselines were already much higher than those of the controls to begin with.

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  11. livinglighter

    livinglighter Senior Member (Voting Rights)

    Royal Free Hospital fatigue clinic now includes the term Myalgic Encephalopathy (ME) which is said to be a better name.

    Encephalopathy means brain disease, disorder, or damage. It is an Acquired Brain Injury.

    Encephalitis is a well-known cause of ABI and is a specific form of Encephalopathy.

    I just think the problem is Myalgic Encephalomyelitis is not overtly said to cause ABI, just symptoms are attached.

    Below are just some symptoms related to ABI which also appear in ME/CFS.

    What are the symptoms of ABI?
    ABI can affect people in many different ways. Some people have physical effects, including:

    • weakness, shaking, stiffness or poor balance
    • tiredness
    • changes in sleep patterns
    • seizures or fits
    • headaches
    • changes in vision, smell or touch
    Some people experience changes in their thinking or learning abilities, including:

    • problems with memory
    • problems with concentration or attention
    • difficulty with planning or organisation
    • confusion
    • difficulty with communication, such as having a conversation
    Some people have problems with managing their behaviour or emotions, including:

    Traumatic brain injury can have wide-ranging physical and psychological effects. Some signs or symptoms may appear immediately after the traumatic event, while others may appear days or weeks later.

    Mild traumatic brain injury
    The signs and symptoms of mild traumatic brain injury may include:

    Physical symptoms
    • Headache
    • Nausea or vomiting
    • Fatigue or drowsiness
    • Problems with speech
    • Dizziness or loss of balance
    Sensory symptoms
    • Sensory problems, such as blurred vision, ringing in the ears, a bad taste in the mouth or changes in the ability to smell
    • Sensitivity to light or sound
    Cognitive, behavioral or mental symptoms
    • Loss of consciousness for a few seconds to a few minutes
    • No loss of consciousness, but a state of being dazed, confused or disoriented
    • Memory or concentration problems
    • Mood changes or mood swings
    • Feeling depressed or anxious
    • Difficulty sleeping
    • Sleeping more than usual
    Moderate to severe traumatic brain injuries
    Moderate to severe traumatic brain injuries can include any of the signs and symptoms of mild injury, as well as these symptoms that may appear within the first hours to days after a head injury:

    Physical symptoms
    • Loss of consciousness from several minutes to hours
    • Persistent headache or headache that worsens
    • Repeated vomiting or nausea
    • Convulsions or seizures
    • Dilation of one or both pupils of the eyes
    • Clear fluids draining from the nose or ears
    • Inability to awaken from sleep
    • Weakness or numbness in fingers and toes
    • Loss of coordination
    Cognitive or mental symptoms
    • Profound confusion
    • Agitation, combativeness or other unusual behavior
    • Slurred speech
    • Coma and other disorders of consciousness

    Have a look at the ABI after effects, recovery and rehab for Encephalitis. Again I can see many similarities.
    Last edited: Mar 15, 2022
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  12. livinglighter

    livinglighter Senior Member (Voting Rights)

    There are also reported cases of COVID 19 causing ABI. This could be another reason why ME and LC appear similar.

    I found that journal in the NICE evidence search.

    Type in 'MYALGIC' and a lot of resources will come up mainly from the US.

    I am compiling my findings for my doctor.
    Last edited: Mar 15, 2022
  13. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    London, UK
    I think there is a confusion here. injury means structural damage - more or less.
    In ME we see no structural damage so as far as we know it is not an injury of any sort.

    Similarity of symptoms is irrelevant because very similar symptoms will occur either from injury to something or from something impeding its function.

    As an example take two situations - a broken fuel pipe and a fuel pipe affected by dirty petrol. The first is a fuel pipe injury. The second isn't. But the symptoms are much the same.

    Calling ME a brain injury is just going to cause confusion or make medical personnel irritated and unhelpful.
  14. JemPD

    JemPD Senior Member (Voting Rights)

    Our experiences sound very similar Mithriel

    I dont call those 'immune symptoms' a flare, because they are not present at baseline when i well rested, they come post exertion. I have other symptoms that i get that sometimes flare up even when i well rested those i call a flare, although tbh i dont very often use the word 'flare' because it leads people to not link my bad state with exertion, and in my circs i am rarely able to avoid PEM so the difference is almost irrelevant
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  15. livinglighter

    livinglighter Senior Member (Voting Rights)

    So far, I understand that there are two types of injury: visible structural damage and non-visible cellular structural damage. The non-visible damage causes dysfunction and neurological symptoms as well. If the non-visible kind cannot be easily seen and has not been ruled out, can we be sure it is not currently present?

    Headway said neuropsychological assessments usually captures subtle injury where it impairs cognition. Some people with ME have had it done.

    Even though there are many different pathological causes of ME symptoms, aside from ABI, I have yet to come across as many of the same ones. Plus, there are reported cases of patients diagnosed with ME later diagnosed with ABI. I've come across one account on the Headway patient forum. Although how that person reached the diagnosis is unknown. There is even an account of a brain injury doctor informing a member they had ME symptoms but did not want to give them an ME diagnosis.

    Headway also confirmed a high volume of calls from pwWE reporting their similarities. The brain injury nurse who took my call said there is no reason why someone with ME cannot be evaluated for ABI if they have ABI symptoms.

    I agree. I cannot say ME is a brain injury without proof. However, there is a case for highlighting the strong similarities when pwME have also been diagnosed with ABI.

    PwME are already being directed towards brain charities for seeking care plans by NHS fatigue clinics, so I think we are already at a confusing place. Before I came across the similarities myself, I was thinking, "why on earth would fatigue clinic do that?"

    Some time ago, I also saw an Encephalitis specialist who recommenced neuropsychological testing based on my symptoms, medical history and tests. It's just one of the several recommendations my surgery has yet to follow up on. I think once confronted with doctors who specialise in the brain. They also recognise similarities. We just aren't routinely referred to them.

    Just to make it clear, I only want to highlight similarities/differences and discuss further possibilities. I'm not attempting to disregard ME as a stand-alone condition.

    [Edited for clarity]
    Last edited: Mar 15, 2022
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  16. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    London, UK
    The structural level of injury can vary, yes. In Alzheimer's the injury is microscopic (until the brain actually shrinks). In boxers the changes are at a fine level.

    But there is nothing about ME that suggests injury to me. I am trained in clinical neurology. I have looked after many people with brain injury. I now know hundreds of people with ME either in the flesh or online. There is absolutely nothing about people with ME that suggests to me that there is structural injury.

    Overlap of symptoms tends to be an irrelevant distraction. When it comes to arthritis lots of symptoms are shared across diseases with nothing in common in terms of cause or pathology. Individual symptoms are rarely useful in diagnosis. It is the pattern of the symptoms and the presence of some in the absence of others that leads to a diagnosis. People with ME have cognitive difficulties but not in the least like those you would see with stroke or Alzheimer's or traumatic Parkinsonism in boxers.

    None of that alters the fact that it is perfectly possible that mild brain injury may trigger ME. I suspect that in 'post-concussion syndrome' very often the cognitive problems are not directly due to any injury there might have been initially. They are due to some other ME-like process that has developed subsequently.
    Last edited: Mar 15, 2022
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  17. bobbler

    bobbler Senior Member (Voting Rights)


    Mine was (a long time ago and in a position where I neither had much control nor was the much info) a screaming need for sleep (not that I was allowed to get it in big chunks of time the way my body asked for it), sometimes falling asleep or feeling like I could, needing caffeine never ever having drunk it before, physical in not being able to get myself fitter as I should have been following being ill and an athlete. And after drinking/nights out getting rheumatic and glandular and generally feeling awful, like terribly awful - which you don't pick up on thanks to everyone minimising it claiming they are also hungover etc.

    Basically getting really ill after doing anything 'big'. Otherwise determinedly running through treacle desperate to sleep or failing that have somewhere comfortable. Noise sensitivity ie it hurt, particularly when tired and it was certain 'noise' types of noise ie harsh sound quality.
  18. livinglighter

    livinglighter Senior Member (Voting Rights)

    Update on some recent similarities I’ve come across.

    This post is about patients diagnosed with CFS who were treated with Post Concussion Syndrome treatment because their symptoms were caused by Brain Injury.

    I thought the terminology “chronic fatigue”, “fatigue” and “boom and bust” was only used concerning CFS, but it turns out all are discussed as being part of the symptoms and fatigue management of brain injury and neurological illness too.

    A closer look at ‘brain injury boom and bust’ also refers to the delayed exacerbation/worsening of symptoms following overactivity.

    Discussions on the Headway Brian Injury forum also describe severe cognitive, sensory and physical symptom exacerbation during ‘boom and bust’. Sounds a lot like PEM to me.

    Google brain injury boom and bust, lots of resources will come up.

    I found medical resources do not go into great detail about how severe the symptoms during ‘bust’ can be, but as we can see from patient accounts, it sounds strikingly similar and severe.

    [Edited: My bolding]
    Last edited: Dec 18, 2022
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  19. Mister Person

    Mister Person Established Member (Voting Rights)

    Merged thread


    Jeff Wood wrote something on health rising about maybe CFS being a mini tbi with exertion. Is this possible at a cellular level? Could neurons firing act like a mini tbi? Activating glia? I thought his idea was novel but he didn't provide any explanation as to what it might look like as far as I can remember.

    Cells repair themselves when damaged right? Is it possible that they don't fix themselves properly? When neurons fire their membranes do something right? They physically move? When they move could they release Damps? And then when you fall asleep the glymphatic shstem activates,?? Thus recovering from pem?

    I have almost no biological knowledge.

    Tldr is PEM a TBI at the cellular level
    Last edited by a moderator: Mar 24, 2023
  20. mariovitali

    mariovitali Senior Member (Voting Rights)

    Being named the "Liver guy" , it's time to look at the main metabolic organ...Again.

    Hepatic damage after Traumatic Brain Injury :

    Liver function abnormalities after TBI

    -and we have lipid dysregulation after TBI, one of them with Phosphatidylcholine

    One of the first things I did was to stop eating fruit and having fresh made juices (=fructose) which apparently has detrimental effects to the liver

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