Brain on Fire: Widespread Neuroinflammation Found in ME/CFS by Jarred Younger

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Wishful

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The first big question is whether or not this is a brain problem, or the brain is damaged secondary to something else.

I vote for it being a brain problem. I don't have any non-neurological symptoms, and have a definite increase in symptom severity when tryptophan transport into the brain increases. To me that says that it's a brain problem, most likely involving microglia. The physical limitations experienced by most ME victims is more likely a secondary response to neurological changes.
 

bertiedog

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Does anyone else find benefit from paracetamol against brain fog? I take it very often and it makes things notably better, I sometimes even take it as a preventative if I need to do exercise.

I do well with paracetamol too and have to take it quite regularly to help with headpain/migraines. My headache consultant told me I might have medication overuse even though I rarely took more than one daily but sometimes with a triptan. I therefore stopped it and tried other pain meds to see if they would work on the headpain as it developed usually first thing in the morning. Nothing worked like paracetamol for me and as @Murph says it often helps me to feel better all over.

However I am careful not to keep taking it even if I have feint headpain later in the day or if the pain never really went but it just tolerable. I will use low dose Lyrica twice daily to help with prevention of migraines. They do help a bit but I cannot tolerate high enough doses for Lyrica to be completely effective in prevention.

Pam
 

bertiedog

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I vote for it being a brain problem. I don't have any non-neurological symptoms, and have a definite increase in symptom severity when tryptophan transport into the brain increases. To me that says that it's a brain problem, most likely involving microglia.

I wonder if this explains the horrible reaction I had to my first experience of a Hyperbaric Oxygen Chamber, diving to 16 feet and breathing pure oxygen for 60 minutes. I hadn't expected to feel so terrible in my head as the pressure was building. I knew about the ears but I experienced it in my head and it affected my vision and I felt like my head would explode.

This made me very anxious and I was pouring with sweat and felt dizzy for the next 30 minutes every time I looked down. I just couldn't understand how the other 4 people in the chamber appeared to be completely unconcerned about the whole experience and indeed the guy who was sitting next to me was asleep whilst I was experiencing the most horrible sensations in my head.

I did manage to calm things down a bit by telling myself I would soon be out and closing my eyes and listening to a meditation but my brain felt like I was on speed for the next 12 hours. It was horrible and has caused me to crash. My adrenals just couldn't cope with the whole experience.

If we have this inflammation in our brains it would seem to make sense that HBOT wouldn't be a good idea. I won't be trying it again but I will carry on with a more efficient oxygen concentrator because I do get benefit from oxygen itself.

Pam
 

Moof

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Now if it is inflammation then research into antiinflammatories that cross into the brain, as Cort comments on, is one way to go.

Isn't melatonin an easily available anti-inflammatory that readily crosses the BBB? I began using it for sleep alone, but realised after a few years that it influences my body-wide ME symptoms very significantly, irrespective of whether I'm sleeping well, poorly, or not at all. It's one of only three things – the other two being B12 injections and my trial of sodium DCA – that has ever really worked to improve my ME. It's all too easy to jump to conclusions, of course, but perhaps it really does reduce inflammation.
 

pamojja

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I also found this website on anti-inflammatories that are found in our food that cross the bbb

http://haydeninstitute.com/diet-nut...-and-natural-neurological-anti-inflammatories

Natural Brain and Neurological Anti-Inflammatories
  • Apigenin – A bioflavonoid found in parslet, artichoke, basil, and celery. Has been shown to decrease microglia cell activation, decrease microglia cell proliferation, and protect brain and neurological cells from injury after strokes.
  • Luteolin – A bioflavonoid found in celery and green peppers. Has been shown to decrease inflammatory reactions in the brain by suppressing microglia activation and inflammaton-induced injury.
  • Baicalein – A flavonoid with anti-inflammatory and antioxident. It is able to cross the blood brain barrier, and is generally tolerated well in the digestive system. Baicalein has demonstrated favorable outcomes with symptoms related to Parkinson’s disease and traumatic brain injuries.
  • Resveratrol – A popular flavonoid found in grapes and wine. Multiple studies associate resveratrol with decreasing neuroinflammation in the brain, and supporting patients with Alzheimer’s disease.
  • Rutin – A flavonoid found in citrus plants and buckwheat. It is a large portion of the vitamin C complex, helping support immune and inflammatory pathways.
  • Catechin – Found in various tea leaves, this polyphenolic plant metabolite helps protect neurons from DNA damage due to antioxidant properties. Catechins can also help with detoxification and chelation.
  • Curcumin – Another popular antioxidant compound found in the Indian curry spice turmeric. Decreases inflammation and has been linked with helping patients that have Alzheimer’s disease.
Remembering Dr. Datis Kharrasian recommending curcumin and resveratrol against brain-inflammation. Though in his experience saw only high doses, above 1 gram/day of both, effective.
 

ljimbo423

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Talking about immune cells in the brain (microglia), Jarod younger says this-

These immune cells are sensitive to so many factors and can be triggered in so many ways that virtually any stressor,

from an infection to toxins to psychological stress, can potentially trigger a state of microglial sensitization in the right individual.

With their ability to produce dozens of different inflammatory mediators, Younger believes that the difference between ME/CFS and FM could simply come down to small differences in how the microglia are tweaked.

Both diseases could be triggered by high rates of immune activation which, over time, sensitizes the microglia to such an extent that they start pumping out inflammatory factors at the first sign of a stressor.

I wonder if the microglial "sensitization" Jarod Younger is talking about here could be the "switch" that gets turned on, causing PEM and CFS?

In some it gets turned on very fast with a viral infection or some other stressor/trigger. In others, the microglia become slowly sensitized over time. Taking months or years to develop CFS.

I think the key word here is sensitization. He says the microglia could become "sensitized". As I understand that, it means they basically over-react to what would normally be un-noticed or very mild stimulus.

Like low grade immune system activation, toxins or psychological stressors. Sending out much higher levels of cytokines in the brain, causing brain inflammation, PEM, pain, fatigue and other symptoms.

I have read about microglial sensitization before, it seems to be a real dysfunction from what I understand.
 

edawg81

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Upstate, NY
I always feel feverish and my head is burning, so I usually wear a cold pack 24/7 except in the rare occasions I feel better. This really seems in sync with Youngers work and similar to some of the possible treatments being discussed. I have tried Resveratrol and Tumeric in the past, I don't think they helped, but I may try it again. NAC didn't help. Klonopin helps but works less over time due to frequent use. The jury is still out on the valcyte.

Surprising Advil which I take for migraines (and doesn't seem to always help the migraine just keep them from getting worse), seems to make my ME sx better the following day, leading me to think neuro inflammation is a key issue in my illness. I use it sparingly cause I don't want it to loose effectiveness, but ideally a drug to reduce neuro-inflamation could take everyday would be good.

I know Younger is exploring other glia cell inhibiting drugs like DXM in addition to LDN. All I can say to that is I'm excited, I really think hes looking into all the right things. I hope these trials/studies continue as fast as reasonability possible.
 

ljimbo423

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I always feel feverish and my head is burning, so I usually wear a cold pack 24/7 except in the rare occasions I feel better. This really seems in sync with Youngers work and similar to some of the possible treatments being discussed.

I use to get flu-like flares fairly regularly, about every few weeks. About 2- 2 1/2 months ago I started taking BCAA's and quickly went up to 10-15 grams a day.

The BCAA's at 10 grams a day completely stopped the flu-like flares I was getting, even though I have been much, much more physically active!

I just looked to see of BCAA's get through the blood brain barrier and they do. What they are doing to stop the flu-like flares I still don't know but it has greatly improved my quality of life.

I'm going to do a search on BCAA's and microglia and see what I come up with.:)
 

lafarfelue

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Paracetamol is also called acetaminophen.

There should be no codeine (or ibuprofen or caffeine or other drug) in plain paracetamol/acetaminophen.

Some of the most common brand names for plain paracetamol/acetaminophen are:
Dymadon
Panadol
Tylenol
Calpol
 

Marylib

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1,171
Not for me. I've tried that, aspirin, and ibuprofen, and none have a noticeable effect on any of my ME symptoms.

I guess it may be because those drugs don't cross the blood-brain barrier. And I guess that cannabis as an anti-inflammatory does help me, because it does cross the barrier.
 

alex3619

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Melatonin is a natural brain antioxidant. Given the sleep issues in ME I wonder if lower melatonin secretion over time might increase oxidative stress. Taking too much melatonin has side effects though. I think in this country there is quite a low maximum dosage allowed, but I was looking into this more than a decade ago and forget most of it.

I occasionally take resveratrol. It helps with a number of symptoms. The main ME symptom I found it helped with is tolerating low amounts of sleep, even though it decreases the hours I sleep they seem to be more effective.
 

alex3619

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Isn't melatonin an easily available anti-inflammatory that readily crosses the BBB?
We cannot presume all antiinflammatories are equal when it comes to ME even if they do cross into the brain. We need proper research into efficacy. This might mean clinical trials in ME specifically. That is why I talk of candidate therapies. They might or might not work, or might work less well, or might work only in subgroups. This does not mean we cannot try them to see if they help our individual symptoms. I have tried both LDN and resveratrol in the last couple of years, for example.
 

ukxmrv

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thanks, fixed link.

Does anyone else find benefit from paracetamol against brain fog? I take it very often and it makes things notably better, I sometimes even take it as a preventative if I need to do exercise.

This paper seems to show that paracetamol stops inflammation by stopping microglia from making prostaglandins, which are heavily implicated in inflammation because they are big producers of vasodilation.

When theory lines up with your observation it can help you stick to a regime and I am going to keep taking paracetamol now I have seen all this.

I find paracetamol has no effect on any ME symptoms and oddly enough, this may just be in my case as it is weird, has no effect on pain. Makes me feel weak and poisoned.
 

Moof

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Paracetamol doesn't help my symptoms a great deal...but it sends me to sleep very reliably. My Mum and my sister, who don't have ME, report the same effect. Two different pharmacists have told me that it doesn't contain anything to make you drowsy, but I have to be as careful about driving after taking it as I would if I drank alcohol.

It is the only med I've come across that tackles deep aching, though. Morphine-based painkillers have no effect on it, but if I have both pain and aching, combining tramadol and paracetamol is really effective.
 

PatJ

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PEMF (pulsed electromagnetic frequencies) can reduce chronic inflammation. There also seems to be a tie-in with the cell-danger response.

Some people use PEMF devices on their heads to reduce brainfog (and possibly inflammation). I've tried it a couple of times on my head but my blood pressure drops and my brainfog increases. PEMF is known to increase vasodilation and I already have far-too-low BP.
 
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