andyguitar
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And it has not been very well investigated in my opinion. Also worth consideration is the role of 5HT-7 in thermoregulation and sleep disturbance.
Abilify- Stanford Clinic Patients
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The the higher the production of IL-6 through inducement via HT-7 the more severe the symptoms.
Linear Relationships between Patient Cytokine Responses and Symptoms of Fatigue and Pain
At baseline, the cytokine that had the strongest association with higher baseline fatigue in CFS patients was higher IL-6 (r = +.43 and +.57 with physical fatigue and mental fatigue ratings, p < .05). Higher baseline IL-6 was also associated with higher reported levels of physical fatigue at 48 h (r = +.48, p < .05). Predictive relationships between changes in cytokines/ligands at 8 h post-exercise (when greatest cytokine changes usually occurred) and SF severity at 48 h were also examined in all CFS patients using linear regression. Greater increases in IL-6 and in CD40L predicted greater increases in physical fatigue, accounting for 43% and 31% of the variance in fatigue increases, respectively (p < .01; see Figure 6), and increases in IL-6 also accounted for 29% of the variance in increased pain (p < .01, not depicted). However, although the relationship with CD40L was robust, the relationships between IL-6 and both physical fatigue and pain increases were strongly influenced by the patient showing the largest IL-6 increase. When reexamined after removal of that individual, these relationships were no longer significant (r = +.36, R2 = 13%). Still, when considered together with the associations between higher baseline IL-6 and greater fatigue, these observations encourage continued research attention to IL-6 as well as CD40L in relation to SF.
Linear Relationships between Patient Cytokine Responses and Symptoms of Fatigue and Pain
At baseline, the cytokine that had the strongest association with higher baseline fatigue in CFS patients was higher IL-6 (r = +.43 and +.57 with physical fatigue and mental fatigue ratings, p < .05). Higher baseline IL-6 was also associated with higher reported levels of physical fatigue at 48 h (r = +.48, p < .05). Predictive relationships between changes in cytokines/ligands at 8 h post-exercise (when greatest cytokine changes usually occurred) and SF severity at 48 h were also examined in all CFS patients using linear regression. Greater increases in IL-6 and in CD40L predicted greater increases in physical fatigue, accounting for 43% and 31% of the variance in fatigue increases, respectively (p < .01; see Figure 6), and increases in IL-6 also accounted for 29% of the variance in increased pain (p < .01, not depicted). However, although the relationship with CD40L was robust, the relationships between IL-6 and both physical fatigue and pain increases were strongly influenced by the patient showing the largest IL-6 increase. When reexamined after removal of that individual, these relationships were no longer significant (r = +.36, R2 = 13%). Still, when considered together with the associations between higher baseline IL-6 and greater fatigue, these observations encourage continued research attention to IL-6 as well as CD40L in relation to SF.
So IL-6 seems to be a reliable marker for the severe ( several papers indicate this). We also know that the 5HT-7 receptor ( which we know can be influenced by Aripiprazole) possibly has a 'major' effect by inducing IL-6 production. The very severe have a high incidence of raised IL-6 evels. This same finding has not been established in the mild to moderate.
Mild to moderate may find no or little benefit from Aripiprazole. But for the severe to very severe this drug may open the door to other medicinal interventions
In studies, IL-6 production seems to have an intriguing correlation with levels of fatigue. It seems to be the higher the IL-6 the more severe the symtoms. Interesting to say the least.
Mild to moderate may find no or little benefit from Aripiprazole. But for the severe to very severe this drug may open the door to other medicinal interventions
In studies, IL-6 production seems to have an intriguing correlation with levels of fatigue. It seems to be the higher the IL-6 the more severe the symtoms. Interesting to say the least.
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JES
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If it was simply a choice between safer and less safe, I would go for supplements 99% of time (or if you want 100% safety, homeopathy). The problem is, no supplement has helped any severe ME/CFS patient I am aware of to improve in any significant degree.
Doctors use antipsychotics in high doses for example in schizophrenia and are now increasingly aware of the long-term metabolic side effects, but do you leave a schizophrenic patient untreated because of that? That's a hard choice to make and somebody with severe ME/CFS is in the same boat if not lower in terms of quality of life. Actually ME/CFS patients are better off if turns out that these drugs work at low doses as that would cause less metabolic changes as well most likely.
hmnr asg
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So you are saying there could be side effects? One could just read the print on the drug bottle to see that it could cause side effects.
And what supplement are you speaking of here that has no side effects and can have the similar benefits (or any benefits). Could you please name just one?
Out of curiosity, how ill are you? I ask because you seem to think no risk is worth taking in order to improve CFS. Obviously if I was still mild I wouldn't risk messing with antipsychotics.
And what makes you think this drug causes tolerance? There is no indication that it does.
A severely ill patient is trying something new that is helping them (and dont doubt it, they have definitely tried every supplement in the book, like I have), and this is your contribution to the conversation:
1- "many side effects"
2- "unintended consequences"
3- "all kinds of short and long-term problems"
4- "very concerning"
...
Do you think any of us would try these medications if we had another option? do you think we dont know about the side effects?
JES
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To be fair, I started the argument about tolerance, although I meant more generally the "drug stops working" issue that most of ME/CFS patients have experienced.
If this works for severe patients due to inhibiting IL-6 as @choochoo speculated, it's possible it won't work for the rest. There was another study that showed ME/CFS patients' cytokine levels were quite different shortly after onset compared to three years later, so the timing might be critical as well. My ME/CFS symptoms are on the mild side and come with a near constant a flu-like feeling, so whenever I take anything anti-inflammatory, I typically start to feel more sick. In any case, I plan to make a trial on low dose aripiprazole if I can manage to get a hold of this.
If this works for severe patients due to inhibiting IL-6 as @choochoo speculated, it's possible it won't work for the rest. There was another study that showed ME/CFS patients' cytokine levels were quite different shortly after onset compared to three years later, so the timing might be critical as well. My ME/CFS symptoms are on the mild side and come with a near constant a flu-like feeling, so whenever I take anything anti-inflammatory, I typically start to feel more sick. In any case, I plan to make a trial on low dose aripiprazole if I can manage to get a hold of this.
You are quite right of course about drugs just "stopping working " or like the situation with Ativan, tolerance builds up remarkably quickly.
Aripiprazole may work differently to the benefit of the severe and very severe. We can only hypothesise on why this may be.
You are also correct to differentiate between early on in the onset, mild and the more severe. A starting point for the 'science' is to see if the levels of biomarker ( surprisingly reliable ) that indicate the severe are also corrected upon administration of Aripiprazole.
This is good news.
I also notice the first drug to be approved in China for Covid-19 treatment is Tocilizumab for the treatment of inflammation by increased IL-6 production. There are reported cases of improvement when short courses of Tociluznab within the CFS community.
Some of the earliest analyses of coronavirus patients in China suggested that it might not be only the virus that ravages the lungs and kills; rather, an overactive immune response might also make people severely ill or cause death. Some people who were critically ill with COVID-19 had high blood levels of proteins called cytokines, some of which can ramp up immune responses. These include a small but potent signalling protein called interleukin-6 (IL-6). IL-6 is a call-to-arms for some components of the immune system, including cells called macrophages. Macrophages fuel inflammation and can damage normal lung cells as well. The release of those cytokines, known as a cytokine storm, can also occur with other viruses, such as HIV.
It has to be more than coincidental IMHO that Suramin has been singled out ( by use of the Nanoneedle )as a drug that may be of benefit. Suramin has a major effect on IL-6 production. It seems to lower IL-6 significantly. As does Abilify and Tocilizumab. There are also reports of the latter also showing to be of significant benefit.
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hmnr asg
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Just letting everyone know, I am still getting better everyday from abilify. Today I had a glimpse of what it was like before cfs. I had very little mental fog. But it lasted for maybe 30 minutes.
I wanted to add something also to those whose instant reaction to every single post where someone claims to get benefits from a pharmaceutical is to repeat the same doom and gloom story. Such posts usually go like this:
1- how dare you tell people what to take!
2- this is a dangerous drug! there are sIdE-eFfEcTZ!
3- my aunt's boyfriend's mechanic took this drug, and he went mad! he now believes he is a pigeon and lives on a tree.
4- you dont even have cfs, otherwise this drug wouldnt work
5- this drug would help anyone, its not doing anything for the cfs (i.e., this medication would boost the energy of anyone)
Comments like these dont add anything to the conversation. Yes, there are side effects. But there are side effects to any drug! Did you think there is a beneficial drug that has no side effects?
Also I am not in any way telling anyone to take abilify. Also if the poster is merely sharing their individual experience they are not telling anyone what to take. The whole point of a forum is that everyone shares their individual story and in the end we can distill some kind of knowledge from the variety of individual stories.
I wanted to add something also to those whose instant reaction to every single post where someone claims to get benefits from a pharmaceutical is to repeat the same doom and gloom story. Such posts usually go like this:
1- how dare you tell people what to take!
2- this is a dangerous drug! there are sIdE-eFfEcTZ!
3- my aunt's boyfriend's mechanic took this drug, and he went mad! he now believes he is a pigeon and lives on a tree.
4- you dont even have cfs, otherwise this drug wouldnt work
5- this drug would help anyone, its not doing anything for the cfs (i.e., this medication would boost the energy of anyone)
Comments like these dont add anything to the conversation. Yes, there are side effects. But there are side effects to any drug! Did you think there is a beneficial drug that has no side effects?
Also I am not in any way telling anyone to take abilify. Also if the poster is merely sharing their individual experience they are not telling anyone what to take. The whole point of a forum is that everyone shares their individual story and in the end we can distill some kind of knowledge from the variety of individual stories.
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hmnr asg
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I apologize for my consistently frustrated tone in this thread. I was given abilify two years ago when I went from a mild to a severe (I jumped one step). Things have gotten SO much worse since my big crash of 2018.
But I was given abilify by Dr Bonilla from the CFS clinic and when I shared that here to see what others think, the usual nay sayers came and told me this drug is going to turn me into a sex addict and I will be running naked in traffic while playing online poker and gambling all my life savings (all 200$ of it).
So I didn't take abilify. And I have been barely alive the last two years. And finally out of desperation I started taking it and WOW is it working. Now I am wondering if I had started it back then maybe my life would have been different.
When you scare someone of a drug because of potential side effect, that may be as irresponsible as someone peddling a dangerous medication. You are affecting their choice and if a medication could actually be helping them you are actually causing them harm. The safest choice isnt always to NOT take something that might otherwise be helpful (despite side effects).
If you think a person shouldnt take any medication that might have any side effects in order to see if their cfs could get better, then I have a few possible explanations for why might think like that:
1- you dont have cfs and so you dont undestand the desperation of losing everything to cfs
2- you are super mild and so there is obviously no reason to take any risky medications
3- your life was basically the same before your cfs started. So there is no sense of urgency to roll the dice and see if something can help. Perhaps you didnt have a thriving career, a fulfilling social life, interesting hobbies etc. so you havnt lost much to CFS
4- you have found the cure and you are just not sharing it with the rest of us! please share! I will venmo you all my 200$
But I was given abilify by Dr Bonilla from the CFS clinic and when I shared that here to see what others think, the usual nay sayers came and told me this drug is going to turn me into a sex addict and I will be running naked in traffic while playing online poker and gambling all my life savings (all 200$ of it).
So I didn't take abilify. And I have been barely alive the last two years. And finally out of desperation I started taking it and WOW is it working. Now I am wondering if I had started it back then maybe my life would have been different.
When you scare someone of a drug because of potential side effect, that may be as irresponsible as someone peddling a dangerous medication. You are affecting their choice and if a medication could actually be helping them you are actually causing them harm. The safest choice isnt always to NOT take something that might otherwise be helpful (despite side effects).
If you think a person shouldnt take any medication that might have any side effects in order to see if their cfs could get better, then I have a few possible explanations for why might think like that:
1- you dont have cfs and so you dont undestand the desperation of losing everything to cfs
2- you are super mild and so there is obviously no reason to take any risky medications
3- your life was basically the same before your cfs started. So there is no sense of urgency to roll the dice and see if something can help. Perhaps you didnt have a thriving career, a fulfilling social life, interesting hobbies etc. so you havnt lost much to CFS
4- you have found the cure and you are just not sharing it with the rest of us! please share! I will venmo you all my 200$
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I’m really happy for you @hmnr asg, it’s always good to see multiple anecdotal reports of lasting improvements from a treatment. May I ask how long have you been doing treatment and what is your dosing regimen? What was your severity level before Abilify and now?
I tried tons of treatments over the years and nothing worked at all for me except ketogenic diet which worked amazingly well for a few months but it was just too difficult day in and day out to follow it stringently enough to achieve the therapeutic ketosis needed to maintain those super improvements for me. But it did give me hope that indeed something can really work and it wasn’t placebo affect. Maybe I will try low dose Abilify too.
I tried tons of treatments over the years and nothing worked at all for me except ketogenic diet which worked amazingly well for a few months but it was just too difficult day in and day out to follow it stringently enough to achieve the therapeutic ketosis needed to maintain those super improvements for me. But it did give me hope that indeed something can really work and it wasn’t placebo affect. Maybe I will try low dose Abilify too.
hmnr asg
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My medication before abilify was:
cymbalta 40mg, lyrica 50 mg before sleep, clonazepam 0.5 mg occasionally, pepcid complete
my CFS severity was probably somewhere between moderate and severe i think. I cant shower without a chair, cant walk more than a block. Easily get overwhelmed by noise so i avoid going anywhere (shopping is done through online stores). I have severe brain fog. My wife does everything basically.
Before my big crash of 2018 I could even do a milk hike.
After taking abilify i am not yet in a different severity level, I am gradually improving. I actually wake up and feel semi-normal these days. I can do more in terms of chores (before it was nill).
I will keep updating this post.