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Second study might confirm neuroinflammation in ME subcortical brain

godlovesatrier

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@Pyrrhus
Do those mri scans - are they pointed at the back of the head? So the red bits are either side of the head at the back? This is exactly where I get all my inflammation :/ I might be looking at the images wrong. But if not my god that's exactly what I get!
 

Pyrrhus

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Are PET-TSPO and PET-FDG somehow linked with each other, i.e. if I have knowledge from PET-TSPO, can I deduce knowledge from PET-FDG and vice versa?

Those are two different tests. PET is just a visualization technique where you insert a "tracer" into the body and then visualize where the tracer ends up.

PET-TSPO uses a tracer that binds to the TSPO receptor and visualizes areas of the brain where there is neuroinflammation.
PET-FDG uses the FDG tracer and visualizes areas of the brain where there is high metabolism.

Could I use knowledge from both to get a better idea of what is going on?

Yes! If you have neuroinflammation, you should also see higher metabolism in the same areas.
But high metabolism by itself does not necessarily mean neuroinflammation.

Do those mri scans - are they pointed at the back of the head? So the red bits are either side of the head at the back?

I'm sorry, I don't follow- which MRI scans are you referring to?
 

godlovesatrier

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Hi @Pyrrhus

I didn't write that very well. What I meant was the cpet is taking an image of the back of the head? Is that right? This is where I have all of my own inflamation on these two sides at the back. I wondered the other day what this might be caused be and what drugs or drug channels like calcium blockers might be good for treating it. Would microglial inflamation be a potential cause do you think?

Dextro naltrexone seems to get a mention in the Younger trials as a drug for microglial activation.
 

Pyrrhus

Senior Member
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Hi @Pyrrhus

I didn't write that very well. What I meant was the cpet is taking an image of the back of the head? Is that right? This is where I have all of my own inflamation on these two sides at the back. I wondered the other day what this might be caused be and what drugs or drug channels like calcium blockers might be good for treating it. Would microglial inflamation be a potential cause do you think?

Dextro naltrexone seems to get a mention in the Younger trials as a drug for microglial activation.

The brain images used in these neuroinflammation studies are produced by a scanning machine that can perform both MRI and PET.

The machine first uses MRI to scan the entire brain in three dimensions, in order to provide a 3-D map of the patient's brain.

Then, without letting the patient move, the machine switches to PET to look for the tracer that indicates neuroinflammation. Unlike MRI, this PET scan is often limited to small parts of the brain, but this scan is also three-dimensional.

Like you, I also get some pain and stiffness at the back of the neck. It appears to be somewhat common in ME.

The pain/stiffness may possibly be due to neuroinflammation. A number of studies have implicated the brainstem in ME, and the brainstem is roughly located at the back of the neck.

Patients with meningitis (an inflammation of the outside layer of the brain) report that they get pain and stiffness in the neck, and patients with severe meningitis even have trouble moving their head from side to side.

...or it could simply be stiff neck muscles due to poor posture, or something else entirely!

(And if you notice any painful bumps at the back of the head/neck, those may be swollen lymph nodes.)

Hope this helps.
 
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Rufous McKinney

Senior Member
Messages
13,249
Like you, I also get some pain and stiffness at the back of the neck. It appears to be somewhat common in ME.

So many troubles I describe as back of the neck.

I get a headache in the back of my neck/lower brain stem/back of the head... if I lie back, I am a side sleeper and nap on my stomach to avoid this: head ache. I think its some version of mild CCI.

very different from the also messed up muscles, lymph and tons of anatomy in this area.
 

hapl808

Senior Member
Messages
2,052
I get constant headaches and back of neck / lower brain steam pain and stiffness. And my brain frequently feels 'swollen' like heat stroke. Certain things like Advil can help temporarily, but I don't usually take them because there seems to be a rebound effect. One interesting thing - I've had this symptom for years, well before I became severe. In the past, the most helpful thing was usually a course of antibiotics or anti-pathogen Chinese herbs. But the positive effects usually plateaued and then dissipated when the antibiotics were distcontinued.
 

godlovesatrier

Senior Member
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Location
United Kingdom
This is another reason why I am doing Josh's protocol to try and clear down this inflammation in my neck and head. Because whilst the high dose thiamine (400mg a day) made a massive difference in this area and got rid of my neck stiffness completely, the swelling was still there.

Anyway back on topic ha! I often forget this is a key ME symptom, it's definitely got worse for me over the years. I always get terrible inflammation behind the ears when socialising (although I do that rarely now as it's not worthit). Interesting to hear you all talk about the exact same symptoms! Funny I found paracetamol actually helped a little - microaglia calming agent maybe?

This is why I used to love andrographis paniculata, it really calmed down my neuro inflammation massively. But it also dries out my body which is no longer ok.

Wish we knew what caused this symptom precisely.
 

Pyrrhus

Senior Member
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Not sure if I posted this video before - but also a very good explanation

ME/CFS Involves Brain Inflammation: Results from a Ramsay Pilot Study

...One thing to watch out for, though:

Unfortunately, Younger sometimes mixes up the terms "brain inflammation" and "neuroinflammation", terms which technically have two different meanings.

Basically, classical inflammation involves immune cells that normally live in the blood (blood-borne immune cells), whereas neuroinflammation involves immune cells that normally live inside the brain (tissue-resident immune cells).

When the tissue-resident immune cells in the brain are activated, it is called "neuroinflammation".

When the blood-borne immune cells invade the brain, it is called "brain inflammation".

To better understand the difference between classical "brain inflammation" and the more recent term "neuroinflammation", see:
https://forums.phoenixrising.me/thr...n-in-me-subcortical-brain.80923/#post-2289868

Hope this helps.
 
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Violeta

Senior Member
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2,895
The base of the brain headache, much worse upon awakening, especially after deep sleep, has been my most lingering symptom. I have recently been working on increasing B vitamins and have had considerable improvement, but the symptoms do come back intermittently.

"Acute hypocapnia causes hypocapnic alkalosis, which causes cerebral vasoconstriction leading to cerebral hypoxia, and this can cause transient dizziness, fainting, and anxiety."

Is the main cause of hypocapnia a broken or flailing electron transport chain?
"ATP (or, in some cases, GTP), NADH, and FADH_2 are made, and carbon dioxide is released. These reactions take place in the mitochondrial matrix. Oxidative phosphorylation. The NADH and FADH_2 produced in other steps deposit their electrons in the electron transport chain in the inner mitochondrial membrane."

"Cellular respiration is a metabolic pathway that breaks down glucose and produces ATP. The stages of cellular respiration include glycolysis, pyruvate oxidation, the citric acid or Krebs cycle, and oxidative phosphorylation."

I am looking at hypoxia as a possible cause and also wondering what part hypocapnia involves. I have several links I'm reading, but if anyone has some extra info about this, I would appreciate it. Thank you
 
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Pyrrhus

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Could it be both? Immune cells from the blood/body causing activated microglia? Or would that be "brain inflammation"?

In severe cases, such as severe encephalitis, both neuroinflammation and brain inflammation are involved:
  1. The neuroinflammation occurs first, when the tissue-resident immune cells in the brain are activated.
  2. When the tissue-resident immune cells in the brain are "overwhelmed", they secrete cytokine molecules to "call for backup".
  3. The cytokines then loosen the blood-brain-barrier and attract blood-borne immune cells to cross the blood-brain-barrier and invade the brain.

But I don't think that's what you were really referring to.
I think you were asking:

Q: If there were classical inflammation in another part of the body, such as blood-borne immune cells invading the intestines, could that somehow lead to neuroinflammation in the brain?

A: Possibly. The classical inflammation in the intestines might trigger nerves in the gut that relay information to the brain, ultimately releasing cytokines in the brain. These cytokines might activate the tissue-resident immune cells in the brain, which would be neuroinflammation.

The base of the brain headache, much worse upon awakening, especially after deep sleep, has been my most lingering symptom. I have recently been working on increasing B vitamins and have had considerable improvement, but the symptoms do come back intermittently.

"Acute hypocapnia causes hypocapnic alkalosis, which causes cerebral vasoconstriction leading to cerebral hypoxia, and this can cause transient dizziness, fainting, and anxiety."

If this symptom is most prominent upon awakening, it might possibly be related to sleep apnea, which is quite different from hypocapnia.

Hope this helps.
 

Violeta

Senior Member
Messages
2,895
If this symptom is most prominent upon awakening, it might possibly be related to sleep apnea, which is quite different from hypocapnia.
Thank you for taking the time to reply. The strange thing is that it is the worst after long stretched of very deep sleep.
 

godlovesatrier

Senior Member
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2,545
Location
United Kingdom
Well I've had Perrin technique. I guess Perrin is more closely in line with Goldstein's theories. But they haven't exactly been proven as root causes of ME.

For me it felt like a lot of very expensive sessions and major hassle to effectively get very little reward out of it at all. Plus you could just take redroot americanus, liver and kidney herbs and some other type of lymphatic cleansers to create the same effect. In my opinion which is not backed up by anything!

But that approach is a lot cheaper and quicker etc.
 

Oliver3

Senior Member
Messages
846
Well I've had Perrin technique. I guess Perrin is more closely in line with Goldstein's theories. But they haven't exactly been proven as root causes of ME.

For me it felt like a lot of very expensive sessions and major hassle to effectively get very little reward out of it at all. Plus you could just take redroot americanus, liver and kidney herbs and some other type of lymphatic cleansers to create the same effect. In my opinion which is not backed up by anything!

But that approach is a lot cheaper and quicker etc.
No thanks for sharing. I'll look into that.did you see Perrin himself?