Neuroinflammation in Patients with CFS/ME: PET study

[searcher]

The PET study (and all the brain research) was the topic that interested me the most at the conference. Obviously I don't know for sure, but I lean toward @Marco's explanation-- I think that neuroinflammation is the end-point. Our microglia are on fire irrespective of the root causes.

At the Stanford conference Jarred Younger put up a good slide with a list of microglia inhibitors (including minocycline and naltrexone.) I put the list up at http://forums.phoenixrising.me/inde...-me-21-march-day-two.29098/page-3#post-443598 for those who are interested.

 

[Marco]

Not that it necessarily reflects on this study but some of these authors have some interesting prior publications relating to 'CFS' (or more correctly childhood CFS -CCFS which is the area they seem to specialise in).

Kei Mizuno was one of the authors of a very large study that found profound cognitive deficits in childhood CFS patients. I was so impressed by this study that I wrote it up as a blog which I've mentioned/linked to a number of times. Loathe as I was to do so again its not a matter of 'blowing my own trumpet' - I think its highly relevant context to the current study :

http://www.cortjohnson.org/blog/201...deficits-present-in-chronic-fatigue-syndrome/

Of course wondering what they were doing lately I was rather concerned when they (Kei Mizuno and Yasuyoshi Watanabe) published this review :

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3630366/#B22

That suggests that 'CFS' may be a developmental disorder affecting attentional processes:executive function and can be treated by a combination of CBT and antidepressants. Despite my misgivings I was still intending to write it up as I felt their results could be explained by other mechanisms.

I gave up on this idea when I traced the original CBT and antidepressant paper (can't find it at the moment) and came to the conclusion that the study was seriously flawed (if I recall correctly many of the small number of trial participants were simultaneously taking medications for POTS or autonomic dysfunction). Hope I remember this correctly.

Just thought you might like to know.

Edited to add - the latter paper might help explain @searcher being puzzled by some of the conference comments about 'skipping breakfast', 'little time spent with family', 'little praise from family members' etc.

 

[anciendaze]

We need to exercise some caution about results involving subtle neuroinflammation. The ability of the medical profession to keep making mistakes that have become conventional is incredible. Here's an example of another paper which could be used to put us in a diagnostic category we definitely do not want:
Neuroinflammation in schizophrenia-related psychosis: a PET study.

 

[Marco]

We need to exercise some caution about results involving subtle neuroinflammation. The ability of the medical profession to keep making mistakes that have become conventional is incredible. Here's an example of another paper which could be used to put us in a diagnostic category we definitely do not want:
Neuroinflammation in schizophrenia-related psychosis: a PET study.

With the greatest respect AD - they're only labels

 

[anciendaze]

Getting that label, and corresponding treatment, would be like the following hypothetical public relations effort at spin control: Malaysia airlines reports it has found your luggage.

 

[NK17]

With the greatest respect AD - they're only labels

With very much respect @Marco, bogus or artificial labels, are and have been what has condemned us to neglect and this slow death.

 

[heapsreal]

I argue with my Neuro that I have inflamation and he said that is imposible (I feel it in brain and spine too). And I could prove it because after I just saw him (was not able to sleep at all even on sleep meds for 2 weeks) the citokine profile inflamatory citokines were throguh the roof. I also get bumps in my head like I fell or got hit by a bat. Arggggg This is so important I hope we could help fund more of this work.

it depends which inflammatory markers they are testing most wouldnt test whats going on in us. I think inflammation is coming from cytokines such as tnf and also nmda, which most docs wouldnt test for. A drug called memantine can help block these inflammatory issues?? Theres stuff going on about nsaids and celebrex, i just dont know as many of us have used these for aches and pains which they can help but i havent seen improvement in general cfs symptoms. Good antioxidants and dhea can help with inflammatory issues we have??

 

[Little Bluestem]

I also get bumps in my head like I fell or got hit by a bat.

@lnester7 , Do these bumps stay or do they go away after a while? I have a bump on my forehead that has been there a couple of years.

 

[N.A.Wright]

Do these bumps stay or do they go away after a while?

From the description epidermoid or pilar cysts sound more likely than anything connected to neuro-inflamation (i.e strictly outside the skull !) If troublesome consult primary care doctor, antibiotics are sometimes prescribed and rarely a surgical procedure is needed.

 

[Seven7]

@lnester7 , Do these bumps stay or do they go away after a while? I have a bump on my forehead that has been there a couple of years.

Mine go away, Once I had one in the really top of forehead (left side) and was very visible to everybody for 3 days then went away. Is like I have a ballon inside the head (inside the bones) and everynow and then is like blown asimetrically. Is the best I can explain it.

 

[acrosstheveil]

wow, i've had some of these insanely large bumps appear on my head and neck too for no apparent reason. It gets pretty painful to touch! It seems to happen when I eat something I'm intolerant too. I'm thinking it has to do with leaky gut.

 

[katcoff]

The results here certainly accord with my symptoms. I have a lot of fluid pressure and terrible irritation that is probably caused by inflammation in the brain tissue.
I too wonder why this sort of investigation wasn't carried out sooner.
I haven't seen this study discussed on Cort Johnson's blog, but it may have been and I missed it.

 

[Legendrew]

Interesting findings, i'm still catching up with all the information revealed during last weeks conference with intent to write one or two articles on those findings which piqued my interest most, this seems to raise quite a few questions. Of course these results will have to be confirmed first but they do have the potential to explain many of the "mental" symptoms and could even provide an initiation point for dysregulation in the nervous system as a whole - specifically the autonomic nervous system which we know is compromised in some way or another. I suppose the biggest question has to be what is leading to this inflammation, that's a whole other debate though.

It's always a difficult thing to talk about; when we talk about inflammation then the mind goes to gross tissue inflammation, the sort you get when you may get an infection and while this can happen in the nervous system, when discussing neuro-inflammation in this context the term refers more to the cytokine findings than it does the observable tissue changes. I really wish that inflammation was replaced with a different word in this case to cut down on the confusion.

 

[Hip]

The study referred to in this thread was actually available in 2011. It was presented at a conference in Japan: see here.

I am not sure why it took three years to get it published in a journal.

 

[Hip]

We need to exercise some caution about results involving subtle neuroinflammation. The ability of the medical profession to keep making mistakes that have become conventional is incredible. Here's an example of another paper which could be used to put us in a diagnostic category we definitely do not want:
Neuroinflammation in schizophrenia-related psychosis: a PET study.

In fact, neuroinflammation has been implicated is a whole series of mental conditions, including: depression, anxiety disorder and schizophrenia, as you can see from the following articles and studies:

The Brain on Fire: Inflammation and Depression | Psychology Today
Is Your Mood Suffering Because Your Brain Is Inflamed?
Inflammation in anxiety
Neuroinflammation in schizophrenia especially focused on the role of microglia


So brain inflammation is not unique to ME/CFS; it is found in a number of mental health condtions. This might explain why it is so common for ME/CFS patients to have psychiatric comorbidities, such as anxiety disorders.

I myself have several additional mental conditions, including: ADHD, severe anhedonic depression, emotional flatness (aka: blunted affect), severe anxiety with some psychosis (the last two both now in remission thanks to these anti-inflammatory supplements which target or mitigate brain inflammation).

In fact, when I caught the enterovirus that lead to my ME/CFS, the anxiety, psychosis, anhedonic depression and emotional flatness symptoms appeared first, within months of catching the virus; the ME/CFS only slowly appeared a little later.

Enteroviruses such as coxsackievirus B are known to infect the brain, and such a viral brain infection is one reason why you would expect their to be neuroinflammation in ME/CFS — inflammation after all is generally just the immune system fighting an infectious pathogen.

 

[NK17]

In fact, neuroinflammation has been implicated is a whole series of mental conditions, including: depression, anxiety disorder and schizophrenia, as you can see from the following articles and studies:

The Brain on Fire: Inflammation and Depression | Psychology Today
Is Your Mood Suffering Because Your Brain Is Inflamed?
Inflammation in anxiety
Neuroinflammation in schizophrenia especially focused on the role of microglia


So brain inflammation is not unique to ME/CFS; it is found in a number of mental health condtions. This might explain why it is so common for ME/CFS patients to have psychiatric comorbidities, such as anxiety disorders.

I myself have several additional mental conditions, including: ADHD, severe anhedonic depression, emotional flatness (aka: blunted affect), severe anxiety with some psychosis (the last two both now in remission thanks to these anti-inflammatory supplements which target or mitigate brain inflammation).

In fact, when I caught the enterovirus that lead to my ME/CFS, the anxiety, psychosis, anhedonic depression and emotional flatness symptoms appeared first, within months of catching the virus; the ME/CFS only slowly appeared a little later.

Enteroviruses such as coxsackievirus B are known to infect the brain, and such a viral brain infection is one reason why you would expect their to be neuroinflammation in ME/CFS — inflammation after all is generally just the immune system fighting an infectious pathogen.

Maybe what "we" call mental conditions are actually brain states of inflammation triggered by different types of pathogens, plus genetics and the environment.

In other words: we are talking about the brain and its still quite mysterious working networks.

Everything that has to do with the mental/psyche part IMHO is not real and it certainly would not lead us to any understanding of pathophysiology and possible treatment.

 

[Hip]

@NK17
I have been over this ground before in discussions on these forums, and I don't want to get into a detailed debate on this. However, I will say that when you have cognitive or mental dysfunction, I think the key issue is finding where the fault lies — ie, determining where exactly the system is broken, such that it causes the dysfunction that leads to mental or cognitive symptoms. That is the question we want answered in ME/CFS, as well as in conditions like anxiety, depression, schizophrenia, etc.

In the case of many mental and cognitive conditions, it is becoming increasingly clear that the fault arises from factors such a brain infection and brain inflammation, and/or toxic exposure that affects the brain. In other words, from physical factors that actually get into the physical brain and damage it or perturb its functioning. Then once the physical brain is made dysfunctional in this way, aberrant mental or cognitive symptoms arise.

However, in some cases, the fault comes not from physical factors, but from extreme psychological experiences. PTSD and shell shock are two conditions where the brain becomes perturbed and damaged from purely psychological events.

In the case of ME/CFS, a great weight of evidence indicates this disease is caused by physical factors that impact the brain (like viral infections), rather than by psychological factors. I think the same is true for conditions like schizophrenia, autism, bipolar, major depression, and the various anxiety disorders. Though in the case of some anxiety disorders and depression, especially the milder forms of these disorders, some psychological factors may also play role.

 

[NK17]

@Hip I didn't want to open an old can of worms or any controversy .

Thanks for your reply!

 

[Hip]

@NK17
I am glad you touched on this issue, because in the process of replying to you, it clarified my thoughts.

I think that this brain-versus-mind debate is not actually relevant at all to ME/CFS or to mental conditions such as anxiety, depression and schizophrenia.

The only thing that is important, when you are looking for the causes of these conditions, is whether the dysfunction of the brain comes from physical factors like viruses that alter brain function, or from psychological factors like extremely stressful events that alter brain function. Once the brain function is altered, the mind is altered too.

Up until recently, most psychologists have put far too much focus on potential psychological factors as the causes of mental and cognitive dysfunctions, and this has not paid dividends, because new evidence is indicating that these dysfunctions appear to arise from physical factors that get into and damage or perturb the physical brain.

 

[anciendaze]

Hip, you might check on some historical material like these papers by Karl Menninger: Menninger1928, Menninger1926, Menninger1920, MenningerI1919, MenningerII1919. He even noted that immune response to infectious disease could ameliorate psychoses. You have to wonder about professionals who can ignore this kind of work by a revered predecessor with an excellent reputation. It wasn't so much refuted as ignored.