Loss of CRH neurons and other neural changes in ME/CFS autopsy study - University of Amsterdam

So there is a study wrapping up that is measuring orexin.

Sorry for the health rising link it is somehow more informative on what is being measured than the OMF page:

www.healthrising.org

An ME/CFS Sleep Study Goes Where No Sleep Study Has Gone Before - Health Rising

A chronic fatigue syndrome (ME/CFS) sleep study explores factors that have never been examined before.
www.healthrising.org

Here’s the OMF link:

Sleep Disturbance in ME/CFS and Long COVID - Open Medicine Foundation Canada
https://www.omfcanada.ngo/sleep-disturbance-in-me-cfs/

“Furthermore, in previously collected brain fluid samples, we will develop techniques to measure orexin, which is an important protein that control sleep boundary states.”

It’s kind crazy to me this hasn’t been done before?? Isn’t unrefreshing sleep a huge symptom!
 
ChronicallyOverIt said:
@jnmaciuch just wanted to know if there is any data on no low orexin in ME/CFS you're familiar with?
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Yes, sorry, no specific figure that I’ve been able to find since then. However, I do think that if orexin depletion approaching T1N levels was characteristic of ME/CFS, we would have seen it on an untargeted CSF assay by now. What might be true is that there is some modest depletion on the more severe end of ME/CFS that hasn’t been coming in for lumbar punctures, but that remains to be seen. (And, if true, that could also be a consequence of living in a dark room long term rather than something driving the illness)

[Edit: Thanks @ScoutB for linking that earlier post]
 
As someone has just posted a desperate message on Reddit about this study, saying they’re losing all hope – that severe ME is possibly incurable, etc. – and has linked to this thread, I’d like to make some remarks in the hope of perhaps alleviating some of that despair.

I’d appreciate any feedback or corrections, particularly from people with more medical expertise :)

Firstly, a general comment. As far as I know, there are even people who, for example, survive WITHOUT a pituitary gland and have to take many hormones artificially; even they have a significantly better quality of life than people with severe ME. This gives me hope that, even if the damage is as the study suggests, one could still somehow live with it.

And secondly, if the same ‘damage’ to CRH neurons is found in people with narcolepsy, wouldn't that necessarily mean that this can't be the sole culprit for severe ME and that even IF this damage is unreversible, there is still a chance for a better life anyway, because after all people with narcolepsy have this too without being as severely disabled as people with ME are.
 
Silip said:
As someone has just posted a desperate message on Reddit about this study, saying they’re losing all hope – that severe ME is possibly incurable, etc. – and has linked to this thread, I’d like to make some remarks in the hope of perhaps alleviating some of that despair.

I’d appreciate any feedback or corrections, particularly from people with more medical expertise :)

Firstly, a general comment. As far as I know, there are even people who, for example, survive WITHOUT a pituitary gland and have to take many hormones artificially; even they have a significantly better quality of life than people with severe ME. This gives me hope that, even if the damage is as the study suggests, one could still somehow live with it.

And secondly, if the same ‘damage’ to CRH neurons is found in people with narcolepsy, wouldn't that necessarily mean that this can't be the sole culprit for severe ME and that even IF this damage is unreversible, there is still a chance for a better life anyway, because after all people with narcolepsy have this too without being as severely disabled as people with ME are.
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Yeah if this the same set of neurons that people have missing in narcolepsy I find it hard to see how it could be causal for ME/CFS in terms of being the sole cause of symptoms, or how ME/CFS could be untreatable because of this finding, if people with narcolepsy don't have the symptoms of even mild ME/CFS let alone severe.

There was also the idea proposed upthread that it might not be neuron loss in either of these conditions as opposed to some kind of epigentic silencing of signalling iirc.
 
Wondered about any connections between prolactin and CRH because of the buspirone challenge buisiness, and found this study claiming to show there isn't a direct relationship. I've just scanned the abstract though.

link.springer.com

Prolactin regulation of the HPA axis is not mediated by a direct action upon CRH neurons: evidence from the rat and mouse - Brain Structure and Function

Centrally acting prolactin has been shown to have anti-stress effects by modulating the activity of the hypothalamic–pituitary–adrenal axis. We tested the hypothesis that prolactin directly targets hypothalamic corticotropin-releasing hormone (CRH) neurons. In situ hybridisation confirmed...
link.springer.com link.springer.com
 
V.R.T. said:
Yeah if this the same set of neurons that people have missing in narcolepsy I find it hard to see how it could be causal for ME/CFS in terms of being the sole cause of symptoms, or how ME/CFS could be untreatable because of this finding, if people with narcolepsy don't have the symptoms of even mild ME/CFS let alone severe.
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Yes. It can’t be the same as narcolepsy damage as those people do not present anything like ME/CFS. As far as I know Modafinil, Dex, Methylphenidate and Sodium Oxybate do not work in ME/CFS.
 
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Having no CRH cells seems to me a much more promising situation than having neuroinflammation. I can understand that people may get concerned but I don't think that is a legitimate reason for not having as open and exploratory as discussion as we can here.

You can manage perfectly well without a pituitary. Various hormonal functions need supporting but that has been going on for decades. And we know that somepeople with ME/CFS get better. It cannot be an irreversible incurable illness across the board.
 
fst said:
Didn't know that was possible! Makes me wonder, if ever someone with ME/CFS had their pitiuary removed (and what the effects were).
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Yes, I think people with tumors at the pituaty gland sometimes need to have them removed. But as far as I could see that's even more rare nowadays, because with better treatments and surgery techniques for tumors at this site chances got higher that they can remove or shrink a tumor without cutting out the whole pituary gland.

I would doubt that there are people diagnosed with ME who had this done, even more so as symptoms and every kind of effects of this procedure would definitely be blamed on a) the tumor b) treatment fo either the tumour or the missing hormones and/or c) the simple fact that people lost a part of their brain.
 
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