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Endocannabinoid system role in ME/CFS

erin

Senior Member
Messages
885
That's great @carer51 I hope the suppository you made keeps helping him. I myself feeling much better since started them. Today is day 8 and I feel almost normal, just a slight heaviness in the head. I keep taking them for a month non stop.
 

carer51

carer/partner of moderate/severe sufferer
Messages
65
Location
UK
Great! I hope you continue to feel better.
Love is...making homemade suppositories for your OH?! Or, trusting your OH to do that?! o_O
 

Cheesus

Senior Member
Messages
1,292
Location
UK
Mine should arrive tomorrow. I have had some success with immunosuppression in the past, which is my main aim with these bad boys. I do have some problems that may ultimately prevent me using them though, which would be a massive bummer.

I will keep you all notified.
 

erin

Senior Member
Messages
885
Great! I hope you continue to feel better.
Love is...making homemade suppositories for your OH?! Or, trusting your OH to do that?! o_O

Oh yes, my OH research about them and nagged me since summer that I should use them, he bought them online for me and I had to try. And was he right about insisting!:thumbsup:

You are a wonderful carer. We all need to be loved and cared. :)
 

carer51

carer/partner of moderate/severe sufferer
Messages
65
Location
UK
He had a bad day today feeling quite tired and dizzy. Could have overdone it on the days he had relief from the pain possibly! Found him lying sideways acroas the bed like a torpedo!


Gah! Bastard disease! Hopefully tomorrow will be better, and lord knows what other reasons there could be (I've been reducing the amount of coconut oil/size of the suppositories, so it could be being absorbed more quickly, and he's been going to bed late, weather is perhaps on the turn, ran out of protein powder and waiting for more, etc). Got him a wrist heart monitor though the app is crap. Hoping he can find some sort of empowerment in it though.

Does anyone know what the effect of CBD is on the immune system and at what sort of dosages it's supposed to act on it? I know dosing is pretty experimental here but I do know that people who use it for cancer etc use very high doses, at great financial cost I should think.
 

Owl42

Psychedelic bird
Messages
53
Location
Mexico
Guys I didn't create this thread for what you're discussing. Maybe it'd be better if you created a CBD usage thread, don't you think? This is a thread for the role of the endocannabinoid system in the general CFSME patophysiology, mostly in a biochemical way.
 

erin

Senior Member
Messages
885
I'm sorry I didn't realize this is a scientific thread. I deleted my last post but I can't delete the others, maybe a moderator can do this, apologies again.
 

IThinkImTurningJapanese

Senior Member
Messages
3,492
Location
Japan
Guys I didn't create this thread for what you're discussing. Maybe it'd be better if you created a CBD usage thread, don't you think? This is a thread for the role of the endocannabinoid system in the general CFSME patophysiology, mostly in a biochemical way.

When you encounter the possibility of problems in the endocannabinoid system, shouldn't a discussion of solutions be pursued?
 
Messages
69
I was watching this video here:

He mentioned the Australian neuro-immune research says TRPM3 is high involved in ME CFS, in addition to the calcium channels and G-coupled protein receptors.

So, I looked up TRPM3 on wikipedia and it says that it is activated by Pregnenolone. So, I clicked on Pregnenolone and it is involved in creating various hormones and is a neurosteroid involved in a natural negative feedback loop against CB1 receptor activation. It prevents CB1 receptor agonists like tetrahydrocannabinol, the main active constituent in cannabis, from fully activating the .CB1

This is all very interesting because I talked to somebody on social media somewhere that said he took CBD and said all his symptoms went away, though he has to keep taking it. It doesn't cure him, but it is an effective drug for the condition.

That may make sense because CBD is an antagonist against the CB1 receptor. Unfortunately in most jurisdictions CBD is considered illegal because it has no medical application. It is used to stop horrible seizures though. However, pure THC can be prescribed as dronabinol and is legal according to federal law, however that is the substance that makes you high in cannabis and causes hallucinations and paranoia. CBD can't make you high and is the substance that stops you from getting high from THC and is illegal.

I'm more interested in finding a cure than taking CBD for the rest of my life and I'm not planning on taking it any time soon, but I may research the laws some more.

This is all very intresting. I did a search and found this thread so I'm somewhat surprised others have found this as well.
Here is a link to G-Coupled proteins: https://en.wikipedia.org/wiki/G_protein–coupled_receptor
 

E.man

Senior Member
Messages
196
Location
Bega Valley , Australia
Lots of Aussie research but now cbd oil imports are banned.

Domestic sale for consumption banned too.

What a farce. If they don't have a 'pharma' product apparently we're not allowed anything else that helps.
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
For anyone interested in self illness exploration, you can test for the following at Redlabs in Europe and the USA.

Cannabinoid receptors (CBR1 & CBR2) mRNA expression (PCR test)

165 euro, or $245 plus shipping.

I haven't done so my self and have no idea if the results in some cases of 'CFS' will be abnormal and tally with Autism or not. (A lot of Autism immune tests are in synergy with 'CFS'), so this presumably is why it's offered as some of us have neuropsych phenomena similar to some people with Autism which interests me if you observe the issue of neuroglial inflammation.

My idea is, it might be interesting to test before you try CBD Oil and Afterwards. Maybe then you could rule out any placebo effect if you felt far better on the CBD Oil, I don't know how the test works though so please don't buy it on my say so, I'm just putting it out there in case it helps someone be a home Scientist. :)
 
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Messages
69
I did some searching and the FDA has recently approved cannabis derived CBD under brand name Epidiolex. It is approved for epilepsy, but I believe drugs can be prescribed for other uses.

The only remaining issue is the DEA. Since Epidiolex is derived from cannabis and not synthesized I'm reading that cannabis has to be rescheduled to either level 2 or 3. The DEA has about 3 months to do that as of June, 25.

Once that happens it should be fairly easy to obtain. I'm still not sure if I want to take it though just because I really want to get to the bottom of this and don't want to mess up my system. It may help alleviate some of the fatigue and other symptoms though.

It also looks like there is a bill that will be amending the controlled substance act to follow the tenth amendment of the federal constitution when it comes to marihuana specifically. It says that the federal ban on marihuana shall not apply to persons who are compliance with state law. So the federal government will not be legalizing marijuana or prohibiting it, but finally merely leaving it up to the state law in law, rather than simply by lack of enforcement of federal law. This is what always should have been done anyway, because it creates a horrible mess to have a law on the books that is not enforced sometimes as a matter of policy but to not repeal that law.
 
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E.man

Senior Member
Messages
196
Location
Bega Valley , Australia
I did some searching and the FDA has recently approved cannabis derived CBD under brand name Epidiolex. It is approved for epilepsy, but I believe drugs can be prescribed for other uses.

The only remaining issue is the DEA. Since Epidiolex is derived from cannabis and not synthesized I'm reading that cannabis has to be rescheduled to either level 2 or 3. The DEA has about 3 months to do that as of June, 25.

Once that happens it should be fairly easy to obtain. I'm still not sure if I want to take it though just because I really want to get to the bottom of this and don't want to mess up my system. It may help alleviate some of the fatigue and other symptoms though.

It also looks like there is a bill that will be amending the controlled substance act to follow the tenth amendment of the federal constitution when it comes to marihuana specifically. It says that the federal ban on marihuana shall not apply to persons who are compliance with state law. So the federal government will not be legalizing marijuana or prohibiting it, but finally merely leaving it up to the state law in law, rather than simply by lack of enforcement of federal law. This is what always should have been done anyway, because it creates a horrible mess to have a law on the books that is not enforced sometimes as a matter of policy but to not repeal that law.
Fun if you're in the US ?
 

Wally

Senior Member
Messages
1,167
-
“Targeting Cannabinoid Signaling in the Immune System: “High”-ly Exciting Questions, Possibilities, and Challenges” -
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5686045/


This paper was published in November of 2017. It would appear that some of what is covered in this article could be relevant to a discussion regarding the endocannabinoid system, cannabinoids and ME/CFS.
[T]he objective of the current article is (i) to summarize the most recent findings of the field; (ii) to highlight the putative therapeutic potential of targeting cannabinoid signaling; (iii) to identify open questions and key challenges; and (iv) to suggest promising future directions for cannabinoid-based drug development.
 

Wally

Senior Member
Messages
1,167
For those who are interested in reviewing some recent talks (May 2018) regarding the endocannabinoid system and cannabinoids, I would suggest starting with this talk given by Dr. Judy Mikovits (info. relevant to the endocannabinoid system begins at around the 4 minute and 50 second mark). While the talk is geared towards Autism, there are references to ME/CFS. I think it is difficult to really understand what is going on with research in this area without venturing out to see what is being discussed in relation to other neuro immune related illnesses.

“Crosstalk and modulation of purinergic, endocannabinoid, stem cell, and immune cell signaling.”
 

Sherpa

Ex-workaholic adrenaline junkie
Messages
699
Location
USA
I have recently tried the Endocannabinoid System Booster supplement by Life Extension and I have had a moderately positive response to it. It is pretty groundbreaking in that it in a non-hemp, non-CBD, non-THC herbal supplement that works as a FAAH inhibitor. For those unfamiliar with FAAH, long term exposure to chronic stress (such as Complex PTSD) can cause the chronic overactivity of the FAAH enzyme which breaks down the endocannabinoid anandamide and depletes your levels of it. This leaves you in a bad mood: cranky, sensitive to stress, not smiling snd not fun.

This supplement contains oleoylethanolamide (OEA), a fatty acid that is extremely similar in shape to the endocannabinoid anandamide. It also has herbal extracts of red clover (FAAH inhibitor). Additionally, there are extracts of black pepper, clove and rosemary that stimulate cannabinoid receptors.

IMG_0935.jpeg


I find that it gives me better sleep, better mood (like a natural antidepressant), more sociable and less irritable and less uncomfortable. Maybe less sensitive to allergenic foods and sun. It's doesn't have any kind of a high or euphoria but it makes me feel more balanced overall.

I would recommend anyone who is reliant on hemp or CBD to check it out. It is a good alternative and in some ways it works better, although in a subtle way. While CBD lasts for a few hours, this seems to last all day.

It would also be an excellent choice for "potheads" who are subject to drug testing and must abstain from cannabis products. It would likely make the situation more bearable.
 
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