011 - Why fractalkine is important in chronic pain and fatigue

I'm presenting results from a new study we published showing fractalkine is abnormal in fibromyalgia. You can obtain the full article at the link below. This study was funded by the American Fibromyalgia Syndrome Association (AFSA). - Jarred Younger
www.ncbi.nlm.nih.gov/pmc/arti...

[@danielscheerer3032]

Always so grateful you are working so hard to help patients with the various diseases under your study AND your visibility with your testing and results. It gives us all hope for eventual solution, so sorely needed. Cheers to all you do!

[@youngerlab]

I appreciate it. I will definitely keep going until I figure these things out, or someone beats me to it! - Jarred Younger

[@jaichang6847]

As someone who has 0 experience with the medical landscape, I’ve really appreciated the easy to understand and informative videos, thank you!

[@youngerlab]

Thanks for letting me know! I'm glad the message is getting through clearly. - Jarred Younger

[@j-dm5837]

As someone who has been fighting RA, fibro & CFS since I was diagnosed at 27 (41 now), I found this really fascinating. Being based in the UK I know our medical rules are different but this could help so many people around the world in the long term. Thank you for continuing to do research into this. I'm so lucky that my rheumatologist is amazing, a workaholic & always follows worldwide studies & research. We sufferers only have hope because of people like you that don't give up & think outside the box when doing studies like this. Thank you so much from the UK. I'll definitely mention this to my rheum consultant (although he'll probably already be aware, Haha).

[@darthmeowry]

Thank you for continuing to work on this. My husband has been suffering with worsening chronic pain and fatigue for more than 25 years now, with no answers at all. It's playing whack-a-mole with symptoms, mostly. And finding a doctor willing to push beyond the "normal" bloodwork is maddening.

[@bitegoatie]

Hang in there. It can be very hard. I'm ten years beyond your husband's milestone. The main thing is finding people willing to work with you, and to continue to learn to handle stress, to maintain general health as best you can, to get better at self-advocacy - and to figure out how to manage when insurance companies cut you off from the only helpful treatments/mitigations you have found for no good reasons at all. The tasks are not always manageable. What is sure is that no one sick for so long can survive without help. If he doesn't thank you enough for sticking by him, I'll thank you for him. Thank you for caring for your loved one. You are the most important person to his survival. As the caregiver at home, you make the most difference. Don't stay with unhelpful practitioners. If a doctor is not helpful, move on to someone else. It can be very hard, especially with pain treatment. The state of pain management in the United States is abysmal. It is shockingly, desperately bad, with propaganda being pushed on medical students that originates with the rehab industry. The state of state law and DEA-created drug shortages have taken opioids off the table for most doctors, and antiscience, one-size-fits-all approaches to pain treatment have become the norm. In fact, most American doctors today want to wash their hands of pain-related tasks as quickly as possible, while the mention of "fatigue" puts many in the mind of exercise, while the rest want to reach for a psych referral. So, I feel your pain on these issues. Good luck to you.

[@rebeccabriggs2982]

Maybe he has oxalate overload from leaky gut. The carnivore diet has healed mine, I have my life back. I had horrible daily pain for years. It's gone.

[@youngerlab]

I am sorry to hear this. While I am not recommending any treatments for individuals, keep an eye out for the treatment videos coming up - and particularly the low-dose naltrexone (LDN) research, if he has never tried that pharmaceutical. - Jarred Younger

[@bitegoatie]

@darthmeowry - Hang in there. It can be very hard. I'm ten years beyond your husband's milestone. One main need for your husband is to find people willing to work with you, and to continue to learn to handle stress, to maintain general health as best you can, and to get better at self-advocacy. Another thing is to figure out how to manage when insurance companies cut you off from the only helpful treatments/mitigations you have found for no good reasons at all (I am in the depths with this one right now). These and related tasks are not always manageable. What is sure is that no one sick and living in pain for so long can survive without help. If your guy doesn't thank you enough for sticking by him, I'll thank you for him. Thank you for caring for your loved one. You are the most important person to his survival. As the caregiver at home, you make the most difference. Don't be afraid to part ways with unhelpful physicians. If you feel a doctor is not helpful, not willing to push to find the best possible treatment plan available, move on to someone else. Such moves can be very hard, especially with pain management practitioners. The state of pain management in the United States is abysmal. It is shockingly, desperately bad, with propaganda being pushed on medical students that originates with the rehab industry. The state of state law and DEA-created drug shortages have taken opioids off the table for most doctors, and antiscience, one-size-fits-all approaches to pain treatment have become the norm. In fact, it appears most American doctors today want to wash their hands of pain-related tasks as quickly as possible ("not worth incurring the regulatory and insurance burden" unless the pain is straightforward and musculoskeletal in origin), while the mention of "fatigue" puts many in the mind of exercise (an impulse that harms ME patients), while the rest want to reach for a psych referral. All that said, you are still better off taking a chance on a new doctor (with a recommendation, if possible, from someone you know) rather than suffering with someone who seems to care less than you would hope. I feel your pain on these issues. Good luck to you. (Sorry if this is a duplicate post. It appears to have vanished once, from my end. I have edited the post to make it clearer, in any case.)

[@nelliedoyle6922]

I was so hopeful and tried LDN it made me so much worse and i don't understand why ..😢

[@brendabrenner2891]

I am severe autoimmune wceliac, mold exposure, celiac dermatitis, food/environmental sensitivities, gut dysbuosis, sibo ibd, ..see 11drs who treat 11 bidy parts w rx bandaids..now long covid, lyme reactivated, studied 2 years w drs all over the world..psesentation is spot on.. system activation that never sguts off🤢..yore dedication , knowledge is a bright light in a dark tunnel , huge gratirude to u😻❤️, + other pioneers who can think out side the box!

[@georgiecoghlan7128]

I often wonder how many Fibro patients have an actual infection that is keeping the immune system active but that doctors haven’t diagnosed. We all know that most doctors aren’t doing a comprehensive investigation prior to diagnosing fibromyalgia. I had a h.pylori infection go undiagnosed for 20 years as all the doctors said my gut symptoms were ‘just Fibro’. Over those years my immunity decreased and I became sensitive to environmental stimuli and had recurring viral outbreaks. Once I treated the h.pylori lots of improvement ensued. But there was a lot of damage to repair and I do feel that my glial cells were highly sensitized. LDN has helped with that 🙏

[@maryturko6490]

Thank you. It gives me hope to know that there is research on going to find the reason for fibromyalgia syndrome. I have carried this with me for almost fifty years. What I would give to have a day free from this scourge. I have fought it for many years but as I age it becomes difficult. Please continue your work and solve the puzzle.

[@youngerlab]

I hope we can figure this out soon! Keep an eye on the videos as several of them will address potential treatments that can be acquired now. There may be some that are relevant to you that you have not tried. - Jarred Younger

[@melc2324]

Please please o please, Sign Me Up!!! If you need test subjects for any trials at all,, I will Happily put my hand up!!! My Neurologist once told me I'm one of those unlucky " Only in 5%" type of people!!! So I know I'd'make a great test subject,, cause my body is that screwed up, I've got or had it all. Thank you so much for actually being Willing to look at things from different angles to find the answers we so desperately need. ❤

[@joeybolden8410]

Same! Sign me up! And thank you for researching this!

[@Eyes0penNoFear]

I had no idea you have to pay extra to allow public access to your research. Thank you for this! I'm a first time viewer and you definitely got my sub. I can't wait to dig in to your other videos.

[@antares4141]

Sounds interesting. I often think when I am laying in bed unable to get out it is an over active immune system. Just being able to differentiate patients from controls based on this test is remarkable if it can be reproduced. I hope you can get the funds to do what you need to push this forward and sooner rather than later. Thank you for your commitment to us!

[@youngerlab]

You're welcome! I wish we had devices that could monitor the immune system in real-time, much like the continuous glucose monitors for diabetes management. I found some companies a few weeks ago that are working on devices like that, and I still need to reach out to them. - Jarred Younger

[@susanarojo3906]

Sooner rather than later, I’m 76 and suffering since 29 years old, since I think maybe a combination of anesthetics for a C section and dengue fever got me down.

[@saundrayork767]

Hi, This is fascinating work! I suffered TBI back in 1989 and many of my symptoms remain severe and chronic -- pain and fatigue being two of the most consistently difficult to have while trying to function. I look forward to your further studies. Thank you for your work!

[@Hvitlys]

That sounds very interesting 🙂 I hope you'll get to test that soon, in tiny doses, I guess, since it's so common to overreact to drugs with these conditions? Thanks for your videos and the great work you carry out!!

[@youngerlab]

Yep, the first dosings will be very small, and the increments similarly tiny. - Jarred Younger

[@fibromyalgianational]

This is very fascinating! I need to move closer to be a test subject. Many of us are talking about fundraising for the research. Thank you for this information!

[@youngerlab]

Good to hear from you. You may have seen that I am trying to make my work remote whenever possible, so you may not have to move! :-) It is true, though, that a new drug being tested in humans for the first time will have to be local to my lab. Regarding fundraising, there is another drug, dextronaltrexone, that I think we really need to develop and test in patients. I will be doing a video on that one really soon. - Jarred Younger

[@hillsofwi]

Thank you for your efforts to help us long-neglected sufferers. Any amount of relief will be much welcomed. You have a true gift at explaining to us lay people the important takeaways in a concise and clear manner. God speed.

[@olivertruswell]

Thank you for all your hard work! Appreciate you dedicating your professional life to helping people with this illness.

[@youngerlab]

I am glad to do it! - Jarred Younger

[@kathb1683]

Amen to you, Jarred Younger!🎉

[@shoshanna.willner]

Following! I'm a somatic psychotherapist and treat chronic pain and syndromes.

[@TomSFlint]

I SO appreciate the clarity of your presentation, Jarred.

[@youngerlab]

Thank you! - Jarred Younger

[@feedwinnie]

I don't know how you came up in my feed, but thank God. I am subscribed.

[@azalea1404]

Dr. Younger, you are indeed a blessing to a lot of very sick people. Thank you so, so much for all that you do. Do you know if that hypothesis somehow can be linked to ME-patient's dysfunctional mitochondrias and ditto autonomic nervesystem?

[@malcolm06768962]

I have been dealing with chronic fatique for 8 years and this sounds very promising. The best way i can describe it to people is that you feel like you're coming down with the flu. Actually 2 years ago on a Saturday i got covid which turned out to be the best tbing that happened to me and I'll quickly explain as it could be of interest to your research. April 16th 2022 : got covid and feeing terrible. legs especially incredibly weak April 17th :no change April 18th :changed time to start taking calcium. calcium meds to be taken no sooner than 4 hours after taking my thyroid meds. April 19th :Starting to feel a little better and my head is clearer, fatique not as severe. April 20th :continuing to feel a little better and decided to clean drive with power washer April 21th : tired and some muscle pain after yesterday but the tiredness is more related to yesterday than the regular fatique. April 22th : still a little sore but able to do some work in the front garden April 23th to 29th : continuing to feel ok and spend the week cleaing the decking, emptying the shed, hanging some shelves and finally getting the cement done on the deckign paving stones. April 30th : Got up late after sleeping well and decided to get my hair cut. feeling good and plannig the next few days. Around 8p.m I can feel the extreme fatique starting to come back. over the following few days right back to feeling lifeless and the brain fog is back, depressed Maybe the response you are getting is related to the severity of how ill someone gets. I will keep an eye out on your channel Regards Malcolm

[@georginastone5375]

Wow, I could feel your excitement in your research…..thank you so very much for continuing….amazing stuff….i feel a little excited too…soooo interesting to hear all of your talks . Thank you

[@fangugel3812]

Thank you! Very interesting. Glad to see that there are still good researchers at UAB.

[@Variations123]

I have strongly felt for a very very long time that if one could support and feed/heal the mitochondria, most of my health issues could be resolved. I with ALL THE MANY MANY HEALTH ISSUES I AM DEALING WITH I FEEL THERE HAS TO BE A ROOT CAUSE, MEANING A POSSIBLE ROOT CURE/HELP. MULTIPLE AUTOIMMUNE DISORDERS, NEUROLOGICAL DYSAUTONOMIA, SEVERE ASTHMA, ALLERGIES, TYPE 1 & 2 DIABETIC, CF, ME, EHLERS DANLOS, CHRONIC PAIN, TBI’S, LONG COVID, Just to name a few things. I would love if you could address some of these or your hypothesis, on root causes. My body is great at attacking itself. THANK YOU FOR YOUR WORK AND HELP!

[@Truerealism747]

I have heds now diagnosed autism heds causation for fybromyalgia CFS I've had pots asthma now gone take ldn

[@GnosticGuru]

Look into MCAS -- Mast Cell Activation Syndrome. E O Nutrition channel has great info on how Thiamine can help the conditions you mentioned.

[@Truerealism747]

@@GnosticGuru yes I've had that it comes with autism heds to unsure if it's that causing my pain though as sinus issues etc lot better but mcas dies change.over time

[@rebeccabriggs2982]

Oxalate overload from leaky gut is what made me so sick and chronic pain and inflammation. Plus amped up immune system. Loads of health problems. All gone and healed on carnivore diet. 70% meat. The rest eggs, selected fruit and vege. Minimal variety.

[@youngerlab]

I had a single kidney stone about 15 years ago, so I am not a fan of oxalate. Had to give up grapefruit (or the huge glasses of juice I was drinking at the time, at least). :-( I'm glad you found a diet that gave you so much improvement! Considering that our bodies are exposed to our food every day, multiple times a day, it is no wonder that diet is a starting point to figuring out so many illnesses. - Jarred Younger

[@fredericklegrande4564]

Or try oregano oil

[@rebeccabriggs2982]

@youngerlab yes it healed... Brain fog, cognition issues, low mood, psoriasis on feet, dry brittle hair and nails, grey hairs are recolouring, fixed chronic pain, muscle wastage, swelling in limbs especially feet and hands, lumpy sore tissue all over body, severe bloating, frequent number 2s, anxiety, immune/autoimmune problems, never satiated... there's probably a bunch more to but after awhile one forgets. It's a great elimination diet.

[@rebeccabriggs2982]

@fredericklegrande4564 thanks, I'm going to look into that

[@yvonnekirk3625]

Thank you so much for trying to help. This fibro can really get you down in every way. Good luck and God bless.

[@ChubbyUnicorn]

Thank you for researching this problem. Lupus sufferers might also benefit.

[@youngerlab]

Lupus is an interesting one to bring up. Fractalkine is often found to be elevated in some rheumatologic disorders. We have to be very careful in how we administer fractalkine because it may not help in certain diseases. While fractalkine generally calms down inflammation in the brain, it may act differently in the body, or there may be cases where elevated fractalkine is not needed. For example, if someone has an acute infection, it may not be a good idea to give fractalkine and alter the immune response. All that is to say that we will closely look at the effects in autoimmune and autoinflammatory disorders to see if there is a benefit. Lupus is particularly interesting because of how the autoimmune processes in that disease can sometimes infiltrate the brain and cause additional problems. - Jarred Younger

[@slomo4672]

Thank you!

[@youngerlab]

😀

[@octrosie20]

PS. May I ask a question .. no idea whether this is the forum for it but.. here goes? : I've had a very brief look at literature linking fractalkine and SFPN (I have extremely severe neuropathic pain all over my skin which is rather running out of control now, but I won't bore you with the details). I'm no scientist so apologies if I've got the wrong end of the stick, but one paper, I believe, implies that fractalkine might actually be part of the process which leads to the development of neuropathic pain. This confuses me, not least because your theory feels like it 'fits' apropos the genesis of my SFPN pain in the first instance. I do realise this might not be the place for a discussion but it's worth mentioning (I think) just in case...... 🤔

[@katiedid1851]

Does that guy answer questions? This is important.

[@KAVITASHARMA-bj7hj]

Thank you for continuing research on Fibromyalgia. It hives up hope 😊

[@Mattsnsjhdksjbs]

Thank you doc - really interesting and useful - thanks for your hard work and dedication 🎉

[@PandaXEmily]

Great video!

[@djVania08]

Thank you for your work.

[@TheAnnetduffy]

thank you so much

[@inspectorraycharles]

I have just discovered your KZbin channel. I am watching your videos as time permits. I am 72 and I believe I've had fibromyalgia for most of my life. It probably started after a severe childhood case of measles or mumps. It wasn't until my 50s that my doctor advised I probably had fibromyalgia after I went through all the diagnostics for an answer to my disableing GI symptoms without any answers. I have slowly descended into nearly complete disability. I was wondering if you have any possible recommendations for current treatment providers in the US such as clinics, hospital groups, doctors that are currently up on treatment regimes that might be worth seeking out?

[@Truerealism747]

I've had it 26 years diagnosed CFS then pots fybromyalgia all same condition do you have hypomobility found out this causation for it in alot for different nervous s6syem causing mcas

[@Helen-pv4wy]

Jarred you're an angel, when I win the lottery you're getting a load of money for your trials. Helen UK, 26 yrs lyme, but diagnosis is m.e.

[@pastelprintshop]

Thank you for the amazing work you do, and for sharing your work and information with us 🙌 I’ve always thought there might be a similar “root cause” for ME/CFS and fibromyalgia (and long COVID) but until I found you I’ve actually never heard it before from anybody else. So excited to keep following you and your labs work 👍

[@fangugel3812]

Can’t wait to read your paper.

[@juliejeatran2633]

Wow. Fascinating. This is the first I am hearing of this, but it makes so much sense when so many of us who suffer say why is today so bad and why was this other day not so bad. I have been diagnosed with fibromyalgia, but I also have a chronic sinus infection of seven years. I’m going to have to re-listen to this, but this seems paradoxical to me as far as help for both of these conditions?

[@madjack8893]

Try a Neti Pot.

[@octrosie20]

This is fascinating. I do hope you are able to expedite your research in this area, it makes complete (theoretical) sense to me. Thank you. 👍

[@jimmill3384]

Thank you for sharing this. This is very cool. Very interesting. I've been taking low dose naltrexone for my fibro and it has helped tremendously but I would like something that sounds really cool

[@PicoAndSepulveda]

This sounds very Hopeful!

[@youngerlab]

Thanks! - Jarred Younger

[@ClaireCaoimheRaeMoonshadow]

Laughed when you said the original patients were rodents. I’m terrified of rats, but if they help find solutions I guess they’re okay. (River rats invading your apartment during postpartum hormones was not a great combo.)

[@youngerlab]

:-) Yikes I have not had an experience like that, but I'll leave the animal research to others nonetheless. - Jarred Younger

[@chinookvalley]

IF there are human studies, I'd be interested in signing up. 34 years of fibro. Add in 3 brain injuries. My energy is zilch. My pain levels are high, but fluctuate. Blood tests are normal. I used 5mg Donepezil for 10 years with amazing results, but had to cease all together due to horrific muscle spasms as a side effect. My mind is sharp, unless it's not, meaning when brain fog sets in I'm drained. I'm 68, and healthy as a horse, otherwise. Sick and tired of being sick and tired.

[@antares4141]

I'm 65 in august had this scurge since I was 37. A hallmark symptom I have had the entire 28 years is what I call brain sciatica. The pain is very similar to sciatica in the way it feels as well as moving around from butt cheeks to legs, to feet, etc. Except with brain sciatica it is just contained to the head and throat. It doesn't happen often but I have other symptoms like one I call "meningitis headache" which is more flue like but again contained to the head and neck. The brain sciatica moves from eyes to ears, to throat, to scalp. I've also associated soars mostly on the roof of my mouth but sometimes gums. I had another symptoms bumps on the inside my mouth on the inside of my lips. I thought that might be related to food reactivity since celiacs get something similar. I have had in the past pins and needles on my face but haven't had that since I moved out of my moldy house 23 years ago. Slurred speech sometimes but so subtle only I would notice it. Also dizzy spells I am going through that as I write this. Which feels somewhat like you feel after you drank too much and lay down and the room is spinning. Brain fog of course. Flue like symptoms. A condition I call brain burn. All these symptoms are transient and I never really have more than one of them at any time. Except for brain fog and brain burn. Have those pretty much all the time to one degree or another. some of the other symptoms like brain sciatica and meningitis headache, soars on the roof of my mouth I "think" I have treated somewhat successfully with aspirin. I rarely take it but when I feel the symptom coming on I take usually 2 bear aspirin. I have tylenol and ibuprofen which I think work similar but usually just use the aspirin. Again seemingly with much success. The dizzy spells I have had from the beginning also. At first I was able to blow them off and just go about my day. Then I got flue like illness with normal temperature, than I found I couldn't make it through my days because of the overwhelming fatigue. Then permantly unable to work. When I was in the moldy house I was bedridden. Now I am able to take care of my self and mildly active but do have days where I can't get out of bed. Usually after a day of higher activity. It is a roller coaster for sure. I left a lot out like low bp high heart rate my back get's soar easily sitting in bed with my computer in my lap, difficulty with problem solving tasks intensified by stress,, a shingles like outbreak with pock marks on my chin and cheeks dr's said wasn't shingles. Pretty bad permanent tinnitus after the "false shingles" episode. blah blah blah

[@triawillow1972]

Might want to look into Vexas Syndrome, I hope this helps prayers going up🙏🏻

[@antares4141]

@@triawillow1972 It does sound like a long shot. Not terribly consistent with my symptoms. I can mention it to my dr but it would probably be dismissed. It's hard enough to get tested for lymes, celiac which they reluctantly did. I tested for heavy metals out of pocket but never really had faith in the lymes or metals results. I've only got about another 20 years to go if I am lucky. I have pretty much resigned to the prospect I am going to die with this disease. I appreciate your suggestion and will mention it to my dr.

[@joybird5495]

Interesting. I notice that generalized pain tends to start in my face. If I catch it soon enough I can stop it from spreading.

[@antares4141]

@@joybird5495 How do you stop it?

[@joybird5495]

@@antares4141 I take Venfaxeline every day which usually keeps my pain in check, but if I start to have break-through pain I will usually take extra-strength Tylenol. If it continues to get worse, I will take Aleve. This combination has worked for me for 4 or 5 years.

[@dagmarjauch1469]

Could you please explain how Post Exertinal Malaise fits in this hypothesis? PEM is the most unpredictable and most debiliating symptom in ME/CFS and as far as I know also in Fibromyalgia. I am wondering which mechanism is going on in our bodies in relationship to fraktalines?

[@juniperpansy]

Overexertion is the "bug" that flares up our immune systems. Frak-I-cant-spell-a-thing is what could shut down this immune response and end PEM.

[@Variations123]

AND SO, DOES YOUR RESEARCH FINDINGS SAY ANYTHING ABOUT THE ISSUES OF LEAKY GUT AND IT CONTRIBUTION TO A PERSONS BODY NOT BEING ABLE TO SEND THE SIGNAL TO SHUT DOWN THE INFLAMMATORY RESPONSE?

[@fezzypepper8525]

I have recently diagnosed adhesive arachnoiditis which may have been exacerbated (in terms of chronic pain) by the mRNA vaccine. Thanks for the info.

[@ninner196]

Makes sense totally. It also makes a bit of sense on why perhaps that why CF pts with absolutely no family hx of diabetes as all doctors should know that some can not chemically metabolize sugar appropriately and weight is Not always a sign of over eating. I am not referring to maxing out calories and extreme obesity in those w/o diabetes but those who have had this the majority of their lives and give up. Our bodies respond to stimulate areas of our brains that seek out what we do not need. Also getting everyone’s viruses etc, those brakes in your analogy are too slow. I am still catching up on your older videos. Been out of commission for a couple of months. 😊

[@fangugel3812]

Are genes associated with fractalkine and its regulation known? It would be interesting to see if there are any genetic differences between the controls and fibromyalgia patients, especially ones with autoimmune disease in the family.

[@joestratton5803]

Thanks for all your research. I’ve long suffered from fibromyalgia and your ldn work has given me some pain relief. I’d be curious if benfotiamine works on any of these mechanisms in high doses bc I’ve started taking it and seen about a 50% pain reduction?

[@Variations123]

WOULDLOVE TO BE A PATIENT IN YOUR STUDY THAT RECIECES FRACTALKINES!!!!❗️❗️⚕️👨‍🔬⚕️❗️❗️

[@DLifeB]

Or certain people can’t clear these things daily and the h build up better explanation IMO. I don’t want my immune response tamped down if it’s struggling to clear the things others easily do. Rather have help for that! Which is how I cured extremely severe FMS for example. Aiding body to remove burdens worked. Shocking my doctors to this day as their worst patient.

[@MichaelMerritt]

Sorry how did you cure FMS specifically?

[@TangoKittyOmicron]

I would be the first one to get in line to be a guinea pig for that! But after watching this video, I wonder now if fractalkine could be deficient in some people, much like how Von Willebrand's disease is a deficiency in Factor 8, could there be something that's causing the body not to release fractalkine?

[@MichaelMerritt]

Interesting, would that mean avoiding meds like statins, since those can down regulate fractalkine? And probably also why statins are linked to muscle pain in some people when not taking CoQ10. I wonder what other meds might make fibro worse for some people.

[@JenniferPearsonJP7]

Do we know the impact of drugs currently on the market, such as hydroxychloroquine or cefuroxime, on fractalkine? Thanks for your research and continued attempts to solve issues of chronic illness--from someone struggling for 20+ years with Lyme disease.

[@youngerlab]

I don't know of anyone who has tested the effects of drugs on fractalkine levels, so that area of research is wide open. I wish we had better options for post-Lyme disease. I hope the treatments we are developing will help in that condition as well, but we will have to test and see. - Jarred Younger

[@MDNQ-ud1ty]

On the wiki page it says that fractalkine is unregulated "during a brief temporal window following spatial learning". Maybe as an intermediate step before injecting it directly would be to find a way to increase the levels through behavioral processes. I'm not sure if it would show up in the blood in a detectable way but if you can show that certain processes specifically increase fractalkine levels and specific ways then that could be used as a substitute method before moving on to injection. I don't know if it would increase the levels enough or in the right places but if the blood levels show an increase and the patient "feels better" when doing those specific tests and there is some other meaningful correlation such as reduced Corticosteroid levels then it might offer some proof that there is a strong connection.

[@youngerlab]

Interesting idea. Yes, there are fractalkine assay kits that work well for blood. So, it is reasonable to measure fractalkine at multiple timepoints and try some behavioral interventions to find out if they impact fractalkine levels. I have daily fractalkine levels in about 100 people. I may look at their daily activity reports to see if I can find an event that caused fractalkine to go up or down. Thanks! - Jarred Younger

[@MDNQ-ud1ty]

@@youngerlab If you can find something to lock on to then you might be able to probe what might be the causal connection the build on that to try to amplify production. I don't know enough about it to know any specifics. If you have enough info then maybe you could run all the data through some statistical software to find any correlations to diet, exercise, etc to see if anything pops out and then just maybe you can see if you can change behavior to increase levels. If so then with investigation on what is is actually doing it can lead to be a better understanding of the issue at hand. If the fractalkine levels are not going up and down randomly(and they are surely not) but there are significant changes in some profiles throughout the day then that suggests trying to correlate exactly what is making them go up and down with the activities. If there are significantly different levels between different people then it suggests studying their activities and what they consume to see if there are any significant differences that might because causal.

[@kimberleebrackley2793]

Thumbs-up

[@NickBoileau]

Did you see the giant LC-ME conference being organized?

[@youngerlab]

I've been to a few Long-COVID or ME meetings, but I missed the Long-COVID and ME one recently held in Portugal. I'm betting there will be a few more big ones coming up, given how many questions there are out there about these two diseases. - Jarred Younger

[@djVania08]

How could this relate to PEM specifically after exercise? Is the same process, since exercise starts inflammatory processes too?

[@MichaelMerritt]

If LDN stopped working for me should I hold out any hope on dextro naltrexone?

[@gailhaugen6212]

Are there any natural sources of fractalkine?

[@celiareed1402]

Have you researched whether fractalkine has any connection to focal dystonia?

[@teresagray1269]

I would be very interested in being a study subject, as I have been genetically tested for fibromyalgia and proven to have on the higher end of the disease process, including raynades.

[@MichaelMerritt]

What’s the genetic test for fibromyalgia? Didn’t realize one existed.

[@teresagray1269]

@@MichaelMerritt I stumbled upon a study about 10 yrs ago if they could detect fibromyalgia in a person's genetics. I signed up and qualified for the study. They found me to be 89.9 % positive for the Gene or genes they were looking for. I had the results scanned into my medical records. I could get a copy of it if you'd like more info on the study.

[@MichaelMerritt]

@@teresagray1269yes, I’d love to find out who to contact and/or what markers they tested for. Thank you in advance.

[@youngerlab]

The only commercial test I know of that made claims about detecting fibromyalgia was the "FM/a" test. It is intriguing, but I have never been able to see the inner workings of the test to assess its validity. It is true that there is a relationship between FM and Raynaud's syndrome. - Jarred Younger

[@pwyman5540]

Thank you for doing what you do. I got sick with Epstein Barr Virus as a young teen and have never been healthy again. Not like i was. Thank you for looking for a cure. I hope you find it.

[@davemoench8789]

Thank you for your research. It helps give me a handle on, and at times hope for, my wife’s condition of ME/CFS. A question for you. Is there a part of the nervous system that, while often subconscious to us, individuals can take control of, or can learn to regulate, that can either “calm” or agitate the microglia? If it can be calmed, not further agitated, could this have a positive effect on the sufferer’s overall wellbeing?

[@Truerealism747]

Dr schubiner says so but hasn't work d for me yet but with having autismmtakes lota work

[@lisbethbird8268]

@davemoench8789 I'm seeing a LOT of pain relief with daily meditations. I do different kinds, but I recommend Dr. Joe Dispenzas' approach, his books and meditations, for being accessible and enjoyable. His collaborators are medical researchers, and there are thousands globally practicing his meditations expressly for healing disease and pain. Because it works, often, and seemingly in miraculous ways. I hope your wife finds relief and healing.

[@Truerealism747]

@@lisbethbird8268 what condition do you have

[@davemoench8789]

@@lisbethbird8268 Thanks. In what ways has it worked for you?

[@lisbethbird8268]

@@Truerealism747 tricky question! I do not have good medical care or insurance, and even when I did, I wasn't getting much help from doctors. Short answer - chronic pain. There is diagnosed right hip arthritis, and history of blunt trauma there and to spine and S.I. joint on the same side. But when I actually had to stop working, I had also been stricken with trigeminal neuralgia. Since then, twice contracted tick borne anaplasmosis, plus last summer, babesiosis. Then after antibiotics began to kill off that protozoa, an immune reaction to all the dead cell material (hypothesizing, but there are multiple similar clinical case studies) that lead to disseminated clotting and signs of congestive heart and respiratory failure. I have a history of multiple head injuries, mostly accidental, but a couple violently inflicted. I'm certain I have complex ptsd and major depression, though they've not been formally diagnosed. Of course, chronic pain *is* trauma, makes all the mental health stuff worse, *and* vice versa. I had a bad case of mono as a teen, and have been dealing with fatigue for a long time, decades. Recently, I had a "trauma brain" reaction to something and became severely emotionally dysregulated. Very severely. Then there was this kind of delayed whole body pain and restriction of what limited mobility I had already. Pain was very bad and I thought "Oh, this must be what fibro feels like". I keep meditating...it took about a week to get back to baseline, which isn't 100%, or even 75%, but is still much better than being utterly, completely helpless; and continues to improve as long as I can take actions to help myself and not be suffering in misery. Something had flipped in my brain/nervous system that affected my entire body. I stumbled on this channel this morning and just intuitively, think that these glial cells are an important piece. Very grateful to Doc Younger for his work and generosity.

[@katiedid1851]

Do you answer questions? Will subscribing provide impetus?

[@gerardburns2500]

can it be made into a pill?. by the way my M.E. is very noticeable on my Garmin 965 watch and app. let me know if you want me to email you screen shots

[@youngerlab]

The chemokine may get chewed up by the gut too much for an oral administration, but it is worth considering. I'm not allowed to ask for health related info, but some people send things like that to our lab account [e-mail] and I take a look when I can. That is fine to do, but the identifying info (like name, date of birth, etc.) should be removed. - Jarred Younger

[@gerardburns2500]

I've sent it to your email. Hope you get it

[@djVania08]

What data are you observing on your watch as noticeable?

[@jaymahay822]

Hi Jared, statins are known to reduce fractalkine along with TNF-alpha. If someone has a very high level of tnf alpha, would you recommend statins even if it might further lower their fractalkine levels?

[@marjake3147]

I have a very severe form of RA along with a nasty form of fibromyalgia. The Dr.s have just about exhausted all the available drugs for the RA; not only do they not provide any relief of pain symptoms but they are poisoning me (I went into anaphylactic shock with two of them). The only relief from pain that I can find is prednisone however I can't take that anymore due to my bones becoming severely brittle. I DID get some pain relief when I was put on doxycyclein when it was suspected that I had Lymes disease. I think you mentioned something about bacteria? Maybe there is a connection?

[@bejul2]

I have a friend with similar issue. And she also reacted well to doxycycline and monocycline. Prednisone provides relief, but not quite. She takes s100a4 inhibitor. That helps a lot with pain.

[@hannahjarvis2765]

🤞🙏🤞

[@ardentearth3184]

This is interesting to know. Is it that it doesn’t want to send the message, or that it is unable to? Is whatever is messing up my other brain signals also interfering with this communication?

[@nancyharkness5999]

Thank you! This brought to mind how some of us MECFS patients felt better after a few hours, for a few hours, after the PfitZer Covid vaccines. I wonder if the vaccine has fractalkene in them?

[@ClaireCaoimheRaeMoonshadow]

I had Moderna first. Felt great!

[@Gil-zt8ur]

Pfizer vaccine had the opposite effect on me - made me worse.

[@youngerlab]

Yep. Those responses to vaccines (either good or bad) are important, though they still need more research. The vaccines do not contain fractalkine, but they will definitely change fractalkine levels and activity indirectly. It reminds me of how some autoimmune disorders improve during pregnancy, and others get worse (depending on the stage of pregnancy). These observations can provide critical clues on how to improve chronic disease. - Jarred Younger

[@EmilyEverglot]

I wonder if this is true if toxins are added to those who have genetic tissue disorders like Ehlers Danlos Syndrome?

[@Truerealism747]

Yes I have this causation is autism we can't stand any insults to the body with stress accident

[@baileystruss7319]

IS there anyone to find out why its lacking in certain population and ways to boost it naturally..or with meds?

[@youngerlab]

Those studies definitely still need to be done. - Jarred Younger

[@TheNicotineTest]

Yet again... Nicotine Patches to the rescue. It is much easier to test this that pure fractakine. This is a communication issue... then the cholinergic system needs to work. Nicotinic signaling is reset with nicotine patches and the sickness response is calmed. I will link to an paper of interest in a second comment.

[@TheNicotineTest]

www.ncbi.nlm.nih.gov/pmc/articles/PMC6965638/

[@TheNicotineTest]

"Fractalkine signaling mediates nicotine-induced increases in cocaine reinforcement and microglial activation Fractalkine signaling, or CX3CR1-CX3CL1, is a signaling pathway that mediates microglial-neuronal communication (Fig. 6a). Both the microglial exclusive receptor, CX3CR1, and the neuronal ligand, CX3CL1, are increased in the NAc following adolescent-nicotine pretreatment (Fig. 6b, c). Increases in CX3CL1 are blocked with a DRD2 targeted morpholino, suggesting this increase is downstream of D2 receptors (Supplementary Fig. 9)."

[@baileystruss7319]

Are you proposing that nic could boost fracktalkine or calm the micriglia otherwise? I do know that nic helps block macrophage infiltration.

[@TheNicotineTest]

@@baileystruss7319 Nicotine does a lot of things, but one thing it does is "reset receptors" that are important for intracellular communication. So if the signal gets through...then fractalkines might start working again. But not everyone reacts the same. It is not a miracle drug, but for some it is life changing from day 1.

[@marlineemmal6458]

This is so interesting as nicotine has proven helpful with Parkinson's disease symptoms. FMS is also a neurodegenerative disorder.

[@MDNQ-ud1ty]

While what you describe may or may not be true, if it is true it is only an effect of another cause. What is the cause that prevent the fractalkine from activating? and what is then the cause of that malfunction? It is also, again if true, likely only one effect of a larger complex of issues. There are ultimately only two possible root causes, genetic or environmental.

[@cameronparham5067]

Of course, and research is ongoing. No information is without value at this time if it is validated by good reproducible research.

[@youngerlab]

Yes, I agree that the first step in the causal chain is probably genetic. But that may not be the best place for the intervention, given the technical hurdles with gene editing therapies like CRISPR. Ultimately, we may fix most health problems with gene editing, though that looks to be a long way off. In the meantime, we should try to find a "weak-point" in the causal chain we can target to mitigate the downstream negative effects. It would be nice to know how many steps precede fractalkine. I am working with an excellent group using whole genome approaches in chronic pain and fatigue. It may be that we can link the findings and describe the whole story (but we don't have that yet!). - Jarred Younger

[@MDNQ-ud1ty]

@@youngerlab My point is not gene editing but that your attack point may not be the proper way to solve the problem. E.g., Exercise, proper diet, etc is better than insulin. Giving insulin is a patch but it doesn't solve the issue of why there is insulin resistance. It just bypasses that issue. Yes, it is better than nothing but typically looking for real solutions rather than patches is neglected once a patch exists. I actually don't believe genetic engineering will fix most problems. Most problems are environmental and behavioral in nature in that our environment and behaviors create the problems because of our ignorance in what we are truly doing. E.g., I hate a lot of sugar when I was young not having a clue how bad it is for teeth. So I now suffer with teeth issues. If I would have known and understood better both how it caused such problems the pain/suffering I would have to go through because of it then I would have made better choices. Similar for everything and everyone. Our ignorance is ultimately the problem. E.g., being fat is not a genetic problem. It is a lifestyle problem. Sure, maybe 1 in a million fat people are fat due to genetic issues but even then there is still a basic mathematical connection between intake and weight that genetics has zero to do with. For other things obviously genetics is obviously the root cause of the problem and this is where genetic engineering will shine... but it won't do anything for problems we create for ourselves which are most problems IMO. As I mentioned in another post, if, say, certain exercises could produce significant fractalkine production then it would be better for those exercises rather than bypassing them. Of course our society loves the quick fixes which only exacerbates the problem because the root cases lose focus because "we have a solution".

[@jeanreynolds1425]

Clear as mud! UGH!