The Insulted Midbrain in CFS

[jeffrez]

This is so important. Whatever is going on in the immune system, the CSF, the microbiome, etc. the brain malfunction itself is what's really causing symptoms, imho. Not that immune, hormonal and energy metabolic systems are not coming into play. But fundamentally, it's all about the brain.

If this research is on the right track -- and it seems to be -- the name of ME/CFS should probably be changed to something like, "Myalgic Demyelinating Encephalitis," or similar, to indicate the ongoing reduction in white and grey mater. This isn't a static condition!

Reductions in BDNF are also commonly associated with depression, and a theory like this could be explanatory for those who persist in psychologizing ME and CFS. At least it would show that in those cases where antidepressants provide some benefit, it's likely because of the increase in BDNF they tend to create, not because the person is "just depressed."

Of course, we would still need to know the cause of the demyelination, but ultimately that would be secondary to an effective treatment. As for me, I'm going to start researching and taking everything I can to increase BDNF, whether that be SSRIs, ALA, zinc, ginkgo, music, neurofeedback, meditation, or anything else I can find. At least maybe it's possible to slow the progression, if not start actually to reverse it.

So glad Cort revisited this topic - i had forgotten all about the MRI studies (uh oh!! Lol)

www.cortjohnson.org/blog/2014/08/22/insulted-midbrain-chronic-fatigue-syndrome-glial-cells/

Apologies if this has been posted elsewhere and I missed it. Feel free to merge if another thread on this topic exists, thank you.

 

[musicfan50]

In the case of "ALA", meaning alpha-linoleic acid (not alpha-lipoic) I have tried (and currently trying) taking flaxseed oil (alpha-linoleic acid) (a blend not straight flaxseed) in the hope that the ALA and subsequent EFAs help but several times now found it very hard to get to grips with. After a week or more of taking the flaxseed oil blend I can experience a lift or improvement in cfs/me symptoms - and sleeping slightly longer hours. More die-down at night esp. if I eat vegetarian at night. But also have to be very careful, both initially and later. When started taking it, I felt tired enough, (an enzyme called D6D is activated / needed to break it down) but also much later as the metabolised-product builds up in the system and the need for rest and sleep is too much. Especially as I am trying to hold down a full-time job. (I would think the symptoms would be even more challenging with straight flaxseed oil.)

 

[alex3619]

I was experimenting with flaxseed in 1993. D6D is delta six desaturase. It creates a double bond ( CH--CH becomes C==C) I think. It also inhibits (competitive inhibition) omega-6 fat processing. This enzyme is highly dependent on glutathione, so without glutathione it will not work right. Many of us have glutathione issues. I did get initial benefits, but then this failed entirely. Its probably best used in moderation, and high quality fish oil may be a better choice. Please be very careful its not rancid.

One way to tell if you have d6d issues is if you have salicylate intolerance. This is a known cause of salicylate intolerance.

While the microglia are a big focus in research right now, and for good cause and using many lines of evidence (PET and qEEG in particular), there is no substantive evidence of demyelinization. In other words, we are not losing myelin sheaths around our nerves to any great extent. Those who do are usually said to have MS.

The problem seems to be microglial activation, leading to localized biochemical changes. Whether or not these changes are due to metabolic inhibition or microcirculation abnormalities is still not clear - in part because this is a chicken or the egg problem, which came first? In part though its because microcirculation issues in the brain are not seen in all studies.

We do have some evidence of immune infiltration. That is, immune cells in some patients do get into nerve ganglia and other places.

It is possible that what we are seeing is some kind of subtantive brain suppression coming from the microglia or other cells triggered by the microglia. So remove that suppression and recovery can be very fast. However the brain is likely to deteriorate when suppressed for long periods, so its possible that some of the neurological changes may be permanent in long term patients. Yet after recovery and over time the brain may adapt, particularly in younger patients.

I suspect a new name may be more like Microglial Induced Limbic Encephalitis, MILE. Just don't add an S- on the front as its nothing to smile about. (Sorry for the bad pun.)

 

[knackers323]

HGH is said to be one of the best treatments for cfs. It did make a big difference for me.

Does hgh have any effect on bdnf or microglia?