Is your Hypothalamus up the creek?

[andyguitar]

Me mentioned on Twitter??!! Whatever next?

 

[Pyrrhus]

John Richardson was the researcher who first championed the idea of a dysfunction in the hypothalamus:
https://me-pedia.org/wiki/John_Richardson

And for anyone interested in John Richardson's other writings, here are some of his writings from the Journal of Chronic Fatigue Syndrome.

Please note that these articles are only viewable to Phoenix Rising members with at least 100 posts.

Disturbance of Hypothalamic Function and Evidence for Persistent Enteroviral Infection in Patients with CFS (Richardson, 1995)
https://forums.phoenixrising.me/thr...-of-hypothalamic-function-and-evidence.10086/

Viral Isolation from Brain in Myalgic Encephalomyelitis (Richardson, 2001)
Description of enterovirus detected in the brain during autopsy.
https://forums.phoenixrising.me/thr...rom-brain-in-myalgic-encephalomyelitis.10780/

Myalgic Encephalomyelitis: Guidelines for Doctors (Richardson, 2002)
A readable 17-page review.
https://forums.phoenixrising.me/threads/richardson-2002-myalgic-enchephalomyelitis.10923/

 

[Pyrrhus]

And for anyone interested in a review of research into the Hypothalamic-Pituitary-Adrenal Axis in ME/cfs, there is the 2013 review by Cara Tomas, Julia Newton, and Stuart Watson:

A Review of Hypothalamic-Pituitary-Adrenal Axis Function in Chronic Fatigue Syndrome (Tomas, Newton, & Watson, 2013)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4045534/

There are also some insights in this older review into the Hypothalamic-Pituitary-Adrenal (HPA) Axis in ME/cfs:

Chronic Fatigue Syndrome: A Dysfunction of the Hypothalamic-Pituitary-Adrenal Axis (Addington, 2000)
https://forums.phoenixrising.me/thr...he-hypothalamic-pituitary-adrenal-axis.10689/
(this link is only viewable to Phoenix Rising members with at least 100 posts.)

 

[Arius]

I'm too brain-foggy to read all of this, let alone make sense of any of it. But I do believe that the hypothalamus is crucially involved in CFS/ME, along with the mitochondria. The causal relationship is by no means certain though.

Dr. Teitelbaum says that the hypothalamus becomes dysfunctional when the body has an energy crisis. Which would imply that the energy crisis is the issue. In which case the question is: what's causing the energy crisis? If it's low-functioning mitochondria, then why are they low-functioning? Is it Naviaux's "cell danger response"? In which case the trigger could be anything that sets off the cell danger response; mostly likely a combination of factors such as heavy metal toxicity, stress, viral infections, low sIgA, toxic mold, etc etc etc.

On the other hand (I'm going from memory, so forgive me if some of the details are a bit off), as I recall the hypothalamus can also become damaged by long-term stress as the hypothalamus stimulates the adrenals to release cortisol, which damages the hypothalamus in a way that makes it increasingly likely to release more and more cortisol, which damages the hypothalamus even further in a downward spiral that ends when the stress does. In which case, the stress is the trigger.

If the second scenario, in which stress damages the hypothalamus, were THE cause of CFS/ME, then every single case of CFS/ME would be caused by stress. Personally, I think the Cell Danger Response model more accurately represents the varied experiences of the PWME community. It seems that fixing stress isn't the cure. There's a whole host of things that have caused people to improve or get better. Some people have recovered after eliminating mold, or parasites, or viral infections, or stress, or or or. Usually after dealing with a whole plethora of issues. Not just eliminating stress and healing the hypothalamus.

So for that reason I'm incredibly skeptical of the "what if it's just the hypothalamus?" idea.

I think we all wish that we were like automobiles with one bad part and you could just swap it out and carry on. One disease, one magic pill that fixes it. Unfortunately that's not how this works. Everything is inter-related in vastly complex relationships. IMO if we want to get better, we have to a) get down to root causes and b) take a holistic approach that acknowledges how incomprehensibly complex our bodies are. A damaged hypothalamus is worth trying to fix, but it is NOT a root cause, and if you don't figure out what damaged it in the first place, you're almost certainly just going to damage it again.

 

[Rufous McKinney]

what's causing the energy crisis?

we will debate chicken or egg until we reach the end of the line, I suspect.

I really appreciated your thoughtful remarks here, despite brain fog disclaimers.

Yesterday-- I felt physically good, with more energy and less all the yucky symptoms. In other words, after days and days of just lousy or the list or this or that are off: finally today is SORT OF OK.

What shocked me is how i was moving around in an almost vital and brisk fashion. Whereas the day before I was ready to pass out from washing 5 dishes.

It was just really weird how: i seemed to have energy firing and my muscles working and not feeling just so WEAK that you might pass out in the next 5 minutes.

It just really struck me again, this issue of - I'm clearly very deconditioned from all this. But on this day where some energy/spoons seemed to suddenly exist- those muscles were working ok.

 

[VisualEffect]

I think that hypothalamus is crucially involved in ME. And researchers should look more to the limbic system-hypothalamus-brainstem-spinal cord axis (not HPA axis), in my opinion. Of course it’s easy to say, but I truly believe that core dysfunction is sitting here. Some people say that ANS problems are secondary to ME, but fixing central dysautonomia would eliminate vast majority of symptoms in PWME.

 

[halcyon]

Quite true. Unfortunately some researchers use the term "neuroinflammation" as if it were a synonym for "neurological inflammation", which is not at all what the 2004 definition intended.

While I'm not well-versed in it, in the migraine pathophysiology literature, there is the concept of "neurogenic inflammation". And for some reason in that setting, nobody seems to baulk at all about the use of the word inflammation, as they do in ME. It seems pretty well accepted that migraine causes a nasty soup of inflammatory molecules to be released into spaces of the brain and can cause often severe symptoms, to the point where it can even mimic aseptic meningitis.

I don't see why it's not possible that ME causes neurogenic inflammation as well. Another interesting parallel is that, in migraine, many years back they used fMRI to discover that regions of the brainstem are highly activated during the attack. They thought they had discovered the migraine generator of the brain. But then some clever people said wait a minute, migraineurs can experience symptoms hours or even days before the attack phase where the brainstem lights up. When you look at that list of pre-attack symptoms and map out what controls them it points to, you guessed it, the hypothalamus.

I see a lot of potential overlap between migraine and ME. Both clearly involve dysfunction in the hypothalamus and brainstem. I think both also involve a lot of excessive activation of glutamate receptors. Brain mast cells are considered an important aspect of migraine pathophysiology. If you were to look at a person with severe ME and a person with a severe migraine, they would look (and feel) a great deal alike I think. I think if you look at the types of cells, the parts of the brain, and the chemicals involved in neurogenic inflammation in migraine, you'll have a bit of déjà vu.

 

[Pyrrhus]

in the migraine pathophysiology literature, there is the concept of "neurogenic inflammation".

It seems pretty well accepted that migraine causes a nasty soup of inflammatory molecules to be released into spaces of the brain

Thanks so much for sharing. Yes, it's easy to get people to accept the fact that neurological symptoms such as migraine can cause inflammation. (And the term "neurogenic inflammation" is certainly preferable to the term "psychogenic inflammation".)

But bizarrely, it's much harder to get people to accept the fact that neuroinflammation can cause neurological symptoms such as migraine...

 

[SWAlexander]

it's much harder to get people to accept the fact that neuroinflammation can cause neurological symptoms such as migraine...

I wish some DR´s would read as many papers as we are. fat chance.
Since my first "low Cortisol" diagnosis back in 1979, I think I have not missed one hormone-related publication. However, the doctors have not and my suggestions, what to test for, were always dismissed. I´m pretty sure I have L-Tyrosine deficiency (Tetrahydrobiopterin (BH4, THB).
The Hypothalamic-Pituitary-Adrenal Axis is not getting enough attention in regards to ME/CFS.

 

[Violeta]

Quite true.



Most anti-inflammatories are designed for classical inflammation, not for neuroinflammation. And some patients do indeed report some help from anti-inflammatories:
https://forums.phoenixrising.me/thr...hort-term-but-may-not-in-the-long-term.80492/

Note that neuroinflammation can last for years without permanent brain damage. This is because evolution has provided protections against such brain damage, such as:

• The nerve cells in the brain can not easily be phagocytosed by macrophages, as easily happens in other tissues.
• Nerve cells are intrinsically resistant to apoptosis.
• The tissue-resident macrophages in the brain work primarily by secreting cytokines that stimulate the interferon pathway inside nerve cells, which is a message to the nerve cell saying "You've got a problem, nerve cell, time to activate your internal intracellular defenses."

If you think about it, there's a very good reason why evolution discourages inflammatory tissue damage in the brain, but allows it in other tissues. You simply can not regenerate nerve cells like you can regenerate other types of cells. If evolution allowed nerve cells to be destroyed and regenerated so easily, you would continuously be losing the memories stored in those nerve cell connections.

Hope this helps.

Are there anti-neuroinflammatories? Is that what migraine meds are?

 

[Violeta]

Since vasopressin is synthesized by the hypothalamus, may I ask if anyone else has had frequent urination as a symptom.

I had that symptom starting around age 5 or 6. As far as I can figure out, it was a result of a polio vaccine. (This was a long time ago.) As an adult I was checked by doctors for urinary pathogens, as the only thing they could think of to check for was an infection. I later figured out that it was diabetes insipidus.

PS: I really appreciate this thread. I am looking forward to reading all the links.

 

[SWAlexander]

Are there anti-neuroinflammatories? Is that what migraine meds are?

My neurologist prescribed Motrin 800 for my Migraine with peripheral vision impairment and brain inflammation. However, I could not take them longer than 10 days because of bad gastric/stomach symptoms.

 

[Woof!]

I believe a few people have listed concerns with frequent urination on PR, but I might be thinking of you, @Violeta. Myself, when I was at my worst menopause-wise, everytime I got a hot flash, I subsequently (1) craved food; (2) craved water, and (3) had to pee like nothing else. My endocrinologist said she had never heard of such of thing (really???!!!) but some other women I asked could relate to this very same thing.

It's soooo frustrating having symptoms ignored by the MDs simply because they lack the training to appreciate them. Aargh! I can remember getting an MRI done of my neck after one particular fall off a horse only to be told I had a markedly enlarged pituitary ("oh, but don't worry about it...it's normal for a woman who has just given birth"). The thing was: I was in my late teens or early 20's, and I was definitely NOT a woman who had just given birth! Sigh

 

[SWAlexander]

"oh, but don't worry about it...it's normal for a woman who has just given birth"

What? Unbelievable.
I hope you went for a second opinion.

 

[Woof!]

What? Unbelievable.
I hope you went for a second opinion.

No one wanted to listen to the patient...

 

[SWAlexander]

No one wanted to listen to the patient...

Oh yes. We all know about "not listening to patients".

 

[Pyrrhus]

Since vasopressin is synthesized by the hypothalamus, may I ask if anyone else has had frequent urination as a symptom.

Yes, see this discussion:

Is thirst a thing for us?
https://forums.phoenixrising.me/threads/is-thirst-a-thing-for-us.83297/

 

[Violeta]

Yes, see this discussion:

Is thirst a thing for us?
https://forums.phoenixrising.me/threads/is-thirst-a-thing-for-us.83297/

Thank you

 

[bertiedog]

It seems pretty well accepted that migraine causes a nasty soup of inflammatory molecules to be released into spaces of the brain and can cause often severe symptoms, to the point where it can even mimic aseptic meningitis.

It seems to be accepted now that the molecule that causes all of the symptoms of migraine is called Calcitonin gene-related peptide (CGRP) and is a 37-amino acid neuropeptide. Discovered 30 years ago, it is produced as a consequence of alternative RNA processing of the calcitonin gene. CGRP has two major forms (α and β). It belongs to a group of peptides that all act on an unusual receptor family (from Wiki).

Furthermore from Wiki regarding the new class of drugs specifically developed to treat migraine -

"Calcitonin gene-related peptide receptor antagonists are a class of drugs that act as antagonists of the calcitonin gene-related peptide receptor. Several monoclonal antibodies which binds to the CGRP receptor or peptide have been approved for prevention of migraine".

As a chronic migraine sufferer with almost daily migraines at times I have taken a particularl issue in this new combination of drugs but as I live in the UK we are not allowed to have these drugs (at least in my area of the south-east). It is so frustrating as they still throw old fashioned preventative medications for us to take which have huge side effects and I can never tolerate them. The only one that I can stick with is Propananol which also helps with the high blood pressure I have developed. But it always feels like my brain is on a knife edge as to whether it will switch over into migraine which usually lasts a few days if I cannot knock it out with Sumatriptan and paracetemol plus caffeine.

Hope my post hasn't taken things off topic.

Pam

 

[SWAlexander]

It is so frustrating as they still throw old fashioned preventative medications for us to take which have huge side effects and I can never tolerate them.

I agree. It is either the limitation of knowledge or disinterest in finding the cause.
This video makes it very clear why.

https://twitter.com/i/web/status/1496379219651317799