You nailed the most important issue. There's two more crucial issues that need to be said. First, the reinforcement of the (wrong) notion that fibromyalgia is primarily emotional. Second, by addressing other life stressors, this might lesson the effects of fibromyalgia, but not actually address the cause. Meaning fibromyalgia might be a canary in the coalmine issue - there may be people with undiagnosed fibromyalgia who have tolerable chronic pain, but those who _also have trauma_ have higher levels of stress hormones, which exacerbates the pain. Treat the trauma and you bring the pain to a tolerable level, but you are not treating the fibromyalgia directly at all. And, again, the doctors then have proven to themselves that it was all in their patients' head to begin with. Which is an extremely dangerous conclusion if (since) there are very real biological reasons for the fibromyalgia.
Thanks. I mentioned a few comments down that the correlation between early trauma and fibromyalgia pain is pretty weak. The majority of FM patients do not meet clinical thresholds for disorders like major depressive disorder or anxiety disorders. If someone calls FM an emotional/psychological problem, then they just aren't caught up on the scientific literature. The language that is used when introducing FM may come down to the department where the work was performed -- e.g., psychiatry versus rheumatology. - Jarred Younger
The specialist who my young Dr. sent me too got very angry with me. “You are too young 📢to have this polymyalgia rheumatica with fibro myalgia⁉️🤔🙉🤮Then gave me steroids that would have killed me. So stopped both Dr. & “roids”. 👎14 yrs later everybody says it’s “ old age creeping in. 😊 So I go with that & take one Aleve -2x/day, & hobble along.🤷♂️👩🏼🦯➡️I don’t trust medical people. 😢😳🙏🏻
@@KelleyHaines-qc4ue Right? One day I was "too young" to have any severe illness. Next thing you know, I'm being told my symptoms are because I'm "getting older." Yeahhhhh, can't have it both ways, docs.
Thanks for this info and explanation. Always need to be careful about 'just trying ' a treatment as is often recommended, even if there's no direct negative consequence, when you've got an energy limiting disease!
Thanks for sharing. After 20 years of illness, I am losing my ability to follow research. Its sad because I used to be intelligent. But thank s so much for your dedication. Just knowing that someone cares and is doing research really does help me.
It’s nice that you consider this little group of followers of your lab’s work as ‘prime time’. Good luck with the all-week meetings. Thanks for your report, I’m starting to appreciate how hard it is to design a rigorous scientific study.
Thanks! Ha, yeah, I mainly meant the researchers probably don't want their findings to leak out to the general public now because they may have patents or clinical trial applications that would be hindered. The presented research has been very interesting so far! - Jarred Younger
Here are some of my thoughts, as a trained EMDR psychotherapist. 1. I appreciate what you said about not having a control group. 2. I haven't read and cannot speak to the research. 3. There is a connection to the immune system (autoimmune issues) and the nervous system. Personally I've been working on calming my over anxious nervous system for 20 years and in the process have profoundly reduced my allergies and other immune responses. There is research about about how healing the nervous system helps restore & regulate a lot in the body systems as well as emotions. It takes time and is slow (at the body's pace) and the popular hacks don't do this. 4. Although EMDR is considered a trauma therapy, you do have to first 'resource' the client so they can handle emotional stressors, and EMDR involves slowing down internally and being present to the body (and more). Those are also things in nervous system healing and regulation, so it makes sense to me that there could be cross over of EMDR possibly helping the nervous system, which would help with pain and with the immune system. I also use bi-lateral stimulation (what EMDR is) to help people calm and regroup. In fact, anyone can do that. Biking, walking, swimming, yoga, drumming are all bi-lateral stimulation and balancing to the brain(s). They are not trauma therapy, but they contribute to healthy brain function, nervous system and emotional regulation.
With the example he gave for something that could be used as a control group for EMDR, of having something visual on one side of the body and tapping on the opposite shoulder, do you think that would work for a control group? Or could it be too likely to also bestow a beneficial effect, because it does involve stimulation alternating on both sides of the body? If you were designing a study, what would you use as controls?
I’m surprised to find that FM is being considered a result of stress and psychological trauma in the same way we KNOW has been very harmful for MECFS patients. That’s concerning to me. Is there reason why FM is so very different that this might actually be a valid way to think of FM when it isn’t for MECFS? Regarding EMDR, the excellent book Pseudoscience in Therapy concludes that EMDR has been convincingly proven to have therapeutic effect only for PTSD. It’s efficacy for depression, anxiety etc has very poor supportive evidence.
There are some camps that focus on trauma and FM, but there is no compelling evidence that FM is the result of trauma. Self-reported early trauma is associated with more FM pain, but the correlations are pretty weak (predicting less than 5% of the variance of FM pain). - Jarred Younger
@@youngerlab Can you share the paper that shows the less than 5% please? And why the papers with stronger correlation to childhood trauma are less valid. That's a very important detail for the FMS stigma and a simple search shows quotes for a much stronger correlation
Actually any treatment, whether “active” or not, involves a placebo effect. In fact there have been several books written about how to enhance the placebo effect in standard medical practice. There’s also a nocebo effect, in which patient expectation leads to experience of adverse effects, even with an inert treatment. These effects are nothing to snicker about.
It isn't likely that I can get around to it because I have a list of over 100 treatments I want to test. 😅 But if a really convincing paper comes out, I can cover it! - Jarred Younger
Yeah I was thinking of something along those lines. Should be easy to create something that looks convincing but has the critical features removed. - Jarred Younger
They should rename EMDR because you can get benefits from tapping your body from side to side and doing the guidance with the practitioner. It is about left, right (side to side) sensation. I had a brain injury so I cannot move my eyes from side to side. They could do the study with just CBT therapy as the control. What you are suggesting as a control might actually help, which would be a worthless study. That said, thank you for bringing this to our attention. Moreover, the sympathetic nervous system (SNS) is connected to pain, and like Somatic Experiencing, EMDR addresses SNS and ANS dysregulation.
Yes I like the idea of just separating the components to see which are necessary for the beneficial effect. If all clinical trials used "active" or sham control groups, most of them wouldn't have a successful outcome. That is why almost everyone uses "treatment as usual" or inactive placebo controls. - Jarred Younger
Yep we know from the oculocardiac reflex that eye manipulation can affect the vagus and cardiovascular system. So it is plausible and testable. - Jarred Younger
@@youngerlab I know this is most likely not related, (but it might be in certain ways) Immunoseb and Immunbio were proffered (with clinical data on NIH) for Long Covid, as was CoQ10 (Uiquinol) plus Lipoic Acid, and Palmitoylethanolamide also for LC. You are doing good work.
@@PCAGA2298 what I can say after 23 years of chronic pain. Lots of therapies help. I tap and hum and breath and roll my eyes, as well as use vibration, heat, compression to manage chronic inflammatory conditions and the associated pain. I have gone from never being under a 5 and mostly off the charts where I simply envied the dead. I am having pain free periods most days. I use only therapies and plants. I can not tolerate opioids. I still have flares and down weeks but I am down 140 pounds of inflammation and my function is dramatically improved. Even with 5 hours of therapy a day I get 8-10 hours of function. In past I could be on feet 90 minutes total in a day with help of a walker. So please don’t underestimate things like breathing, tapping, humming etc. you might just be amazed.
@@youngerlab The one thing that I will say that it 'did' help with....is the one memory they had me keep going back to.....the happy memory....is very much engrained in my brain now...along with all the senses from that memory including scents ('the smell of the sheets from the laundry drying in the gently blowing wind -- the smell of sunshine'....the way the gentle breeze felt against my skin....the way the sun felt....all of it....sight, touch, taste, hearing, and smell.)...so I can revisit that memory when I'd like to but no chnage with pain or fatigue unfortunately. I've done TMS therapy for depression...I was a partial responder to that....I've read it is used for pain sometimes now too at least in research settings....thanks for your work that you do.
What do you think about the sublingual cyclobenzaprine TNX-102 From Tonix Pharmaceuticals? It looks like it is still possibly viable after going through a long rocky clinical trial.
I will have to read the 2023 clinical trial. I remember the sample size is large. I think it showed significant differences from a placebo group. I would love to see sublingual compared with the more traditional oral form just to make sure there is a compelling reason for the new formulation. Bioavailability should be higher with sublingual, but the question will be if the impact on FM pain is greater enough to warrant whatever the higher cost of the new patented medication will be (general oral cyclobenzaprine is pretty cheap). - Jarred Younger
@@youngerlab I was wondering what your thoughts are for Marinol? Looks like a cannabinoid. www.accessdata.fda.gov/drugsatfda_docs/label/2005/018651s021lbl.pdf
Thanks so much for breaking this down. Really good points, it doesn’t seem like a well-constructed study. Anecdotally, I noticed that I’m getting more emdr-like eye movements since my covid infection (existing ME, now ME and LC). Whether or not it helps, I couldn’t say, but it’s a spontaneous thing that’s happening. I also found hypnosis more effective than sleep - I know, sounds woo.
I haven't heard about eye movements after covid infection. I'll do a search and see if it popped up anywhere else. Re: hypnosis - my gradate school research was all on hypnosis. We were figuring out why some people are highly hypnotizable and can use it effectively in many situations. I haven't conducted hypnosis research in a long time, but it is definitely a unique state of consciousness that is different from placebo/expectancy. - Jarred Younger
Is there any chance of testing high vitamin d3 and k2 plus the other co factors that Dr Eric berg says to take in his TH-cam videos, please for M.E.CFS and insomnia
Dr Berg is not a real doctor. He's a chiropractor and a Scientologist. Look up what his son Ian Rafalko has to say about his father and this evil cult.
A deficiency of D3 or K2 would be very harmful to the person. I did a video quite a while ago emphasizing that a comprehensive vitamin/mineral panel should be conducted every year. So many people are low on B vitamins and others that are causing many of the chronic problems. - Jarred Younger
Watched an Autoimmune Doc series- the biggest issue at the root of all autoimmune diseases is dairy and wheat- particularly in North America! GMO and glyphosate are terrible and banned in some countries, yet North America they poison our food!
You nailed the most important issue. There's two more crucial issues that need to be said. First, the reinforcement of the (wrong) notion that fibromyalgia is primarily emotional.
Second, by addressing other life stressors, this might lesson the effects of fibromyalgia, but not actually address the cause.
Meaning fibromyalgia might be a canary in the coalmine issue - there may be people with undiagnosed fibromyalgia who have tolerable chronic pain, but those who _also have trauma_ have higher levels of stress hormones, which exacerbates the pain. Treat the trauma and you bring the pain to a tolerable level, but you are not treating the fibromyalgia directly at all.
And, again, the doctors then have proven to themselves that it was all in their patients' head to begin with.
Which is an extremely dangerous conclusion if (since) there are very real biological reasons for the fibromyalgia.
Thanks. I mentioned a few comments down that the correlation between early trauma and fibromyalgia pain is pretty weak. The majority of FM patients do not meet clinical thresholds for disorders like major depressive disorder or anxiety disorders. If someone calls FM an emotional/psychological problem, then they just aren't caught up on the scientific literature. The language that is used when introducing FM may come down to the department where the work was performed -- e.g., psychiatry versus rheumatology. - Jarred Younger
The specialist who my young Dr. sent me too got very angry with me. “You are too young 📢to have this polymyalgia rheumatica with fibro myalgia⁉️🤔🙉🤮Then gave me steroids that would have killed me. So stopped both Dr. & “roids”. 👎14 yrs later everybody says it’s “ old age creeping in. 😊 So I go with that & take one Aleve -2x/day, & hobble along.🤷♂️👩🏼🦯➡️I don’t trust medical people. 😢😳🙏🏻
@@KelleyHaines-qc4ue Right? One day I was "too young" to have any severe illness. Next thing you know, I'm being told my symptoms are because I'm "getting older." Yeahhhhh, can't have it both ways, docs.
Thanks for this info and explanation. Always need to be careful about 'just trying ' a treatment as is often recommended, even if there's no direct negative consequence, when you've got an energy limiting disease!
Yes good point about potential wasted time, money, and energy. - Jarred Younger
Thanks for sharing. After 20 years of illness, I am losing my ability to follow research. Its sad because I used to be intelligent. But thank s so much for your dedication. Just knowing that someone cares and is doing research really does help me.
Of course! - Jarred Younger
It’s nice that you consider this little group of followers of your lab’s work as ‘prime time’. Good luck with the all-week meetings. Thanks for your report, I’m starting to appreciate how hard it is to design a rigorous scientific study.
Thanks! Ha, yeah, I mainly meant the researchers probably don't want their findings to leak out to the general public now because they may have patents or clinical trial applications that would be hindered. The presented research has been very interesting so far! - Jarred Younger
@@youngerlab great, looking forward to hearing about it.
Here are some of my thoughts, as a trained EMDR psychotherapist. 1. I appreciate what you said about not having a control group. 2. I haven't read and cannot speak to the research. 3. There is a connection to the immune system (autoimmune issues) and the nervous system. Personally I've been working on calming my over anxious nervous system for 20 years and in the process have profoundly reduced my allergies and other immune responses. There is research about about how healing the nervous system helps restore & regulate a lot in the body systems as well as emotions. It takes time and is slow (at the body's pace) and the popular hacks don't do this. 4. Although EMDR is considered a trauma therapy, you do have to first 'resource' the client so they can handle emotional stressors, and EMDR involves slowing down internally and being present to the body (and more). Those are also things in nervous system healing and regulation, so it makes sense to me that there could be cross over of EMDR possibly helping the nervous system, which would help with pain and with the immune system. I also use bi-lateral stimulation (what EMDR is) to help people calm and regroup. In fact, anyone can do that. Biking, walking, swimming, yoga, drumming are all bi-lateral stimulation and balancing to the brain(s). They are not trauma therapy, but they contribute to healthy brain function, nervous system and emotional regulation.
With the example he gave for something that could be used as a control group for EMDR, of having something visual on one side of the body and tapping on the opposite shoulder, do you think that would work for a control group? Or could it be too likely to also bestow a beneficial effect, because it does involve stimulation alternating on both sides of the body? If you were designing a study, what would you use as controls?
Please review the ME Septad (Zebra conditions). EDS/hypermobility, dysautonomia/POTS, MCAS, chronic infections, SIBO/gastroparesis, autoimmunity, neurosurgical conditions CMS/CCI/AAI/Chiari/IIH.
I get good results with somatic stretching and Qi Gong body tapping before sleeping.
I have used the eye movements for other processes. Thanks Jarred.
Thanks! - Jarred Younger
I always learn something... Thank You.
I’m surprised to find that FM is being considered a result of stress and psychological trauma in the same way we KNOW has been very harmful for MECFS patients. That’s concerning to me. Is there reason why FM is so very different that this might actually be a valid way to think of FM when it isn’t for MECFS?
Regarding EMDR, the excellent book Pseudoscience in Therapy concludes that EMDR has been convincingly proven to have therapeutic effect only for PTSD. It’s efficacy for depression, anxiety etc has very poor supportive evidence.
Jep... can't remember or work through anything if there's nothing to remember and work through.
There are some camps that focus on trauma and FM, but there is no compelling evidence that FM is the result of trauma. Self-reported early trauma is associated with more FM pain, but the correlations are pretty weak (predicting less than 5% of the variance of FM pain). - Jarred Younger
@@youngerlab Can you share the paper that shows the less than 5% please? And why the papers with stronger correlation to childhood trauma are less valid. That's a very important detail for the FMS stigma and a simple search shows quotes for a much stronger correlation
_The Placebo Effect:_ an effect so powerful all pharmaceuticals are measured against it! 😂
Actually any treatment, whether “active” or not, involves a placebo effect. In fact there have been several books written about how to enhance the placebo effect in standard medical practice. There’s also a nocebo effect, in which patient expectation leads to experience of adverse effects, even with an inert treatment. These effects are nothing to snicker about.
Thanks for sharing. If you ever do look into EMDR, I would love to hear your thoughts on it
It isn't likely that I can get around to it because I have a list of over 100 treatments I want to test. 😅 But if a really convincing paper comes out, I can cover it! - Jarred Younger
EMDR can also be tapping alternately left and right, on shoulders or lap. Sham could be tapping one side or both at the same time.
Yeah I was thinking of something along those lines. Should be easy to create something that looks convincing but has the critical features removed. - Jarred Younger
They should rename EMDR because you can get benefits from tapping your body from side to side and doing the guidance with the practitioner. It is about left, right (side to side) sensation. I had a brain injury so I cannot move my eyes from side to side. They could do the study with just CBT therapy as the control. What you are suggesting as a control might actually help, which would be a worthless study. That said, thank you for bringing this to our attention. Moreover, the sympathetic nervous system (SNS) is connected to pain, and like Somatic Experiencing, EMDR addresses SNS and ANS dysregulation.
Yes I like the idea of just separating the components to see which are necessary for the beneficial effect. If all clinical trials used "active" or sham control groups, most of them wouldn't have a successful outcome. That is why almost everyone uses "treatment as usual" or inactive placebo controls. - Jarred Younger
The eye movement may effect vagus nerve which may help the pain.
Yes it's in Dr taylbaum CFS book
Yep we know from the oculocardiac reflex that eye manipulation can affect the vagus and cardiovascular system. So it is plausible and testable. - Jarred Younger
@@youngerlab I have a lot of chronic pain and vagus nerves stimulation through out the day has been quite helpful.
Maybe try Palmitoylethanolamide (ultra micronized) with Luteolin, PQQ, Special pro resolving mediators.
PEA is in the top five of my next agents to try. - Jarred Younger
@@youngerlab I know this is most likely not related, (but it might be in certain ways) Immunoseb and Immunbio were proffered (with clinical data on NIH) for Long Covid, as was CoQ10 (Uiquinol) plus Lipoic Acid, and Palmitoylethanolamide also for LC. You are doing good work.
Yes, I seriously doubt that a non medical intervention is going to help a BIOLOGICAL illness ❤
@@PCAGA2298 what I can say after 23 years of chronic pain. Lots of therapies help. I tap and hum and breath and roll my eyes, as well as use vibration, heat, compression to manage chronic inflammatory conditions and the associated pain. I have gone from never being under a 5 and mostly off the charts where I simply envied the dead. I am having pain free periods most days. I use only therapies and plants. I can not tolerate opioids. I still have flares and down weeks but I am down 140 pounds of inflammation and my function is dramatically improved. Even with 5 hours of therapy a day I get 8-10 hours of function. In past I could be on feet 90 minutes total in a day with help of a walker. So please don’t underestimate things like breathing, tapping, humming etc. you might just be amazed.
I've done EMDR...it did not help with pain...
Didn’t help my PTSD either.
Thanks for letting me know. - Jarred Younger
@@youngerlab The one thing that I will say that it 'did' help with....is the one memory they had me keep going back to.....the happy memory....is very much engrained in my brain now...along with all the senses from that memory including scents ('the smell of the sheets from the laundry drying in the gently blowing wind -- the smell of sunshine'....the way the gentle breeze felt against my skin....the way the sun felt....all of it....sight, touch, taste, hearing, and smell.)...so I can revisit that memory when I'd like to but no chnage with pain or fatigue unfortunately. I've done TMS therapy for depression...I was a partial responder to that....I've read it is used for pain sometimes now too at least in research settings....thanks for your work that you do.
Thanks, 🇳🇮
What do you think about the sublingual cyclobenzaprine TNX-102 From Tonix Pharmaceuticals? It looks like it is still possibly viable after going through a long rocky clinical trial.
I will have to read the 2023 clinical trial. I remember the sample size is large. I think it showed significant differences from a placebo group. I would love to see sublingual compared with the more traditional oral form just to make sure there is a compelling reason for the new formulation. Bioavailability should be higher with sublingual, but the question will be if the impact on FM pain is greater enough to warrant whatever the higher cost of the new patented medication will be (general oral cyclobenzaprine is pretty cheap). - Jarred Younger
@@youngerlab I was wondering what your thoughts are for Marinol? Looks like a cannabinoid.
www.accessdata.fda.gov/drugsatfda_docs/label/2005/018651s021lbl.pdf
Thanks so much for breaking this down. Really good points, it doesn’t seem like a well-constructed study.
Anecdotally, I noticed that I’m getting more emdr-like eye movements since my covid infection (existing ME, now ME and LC). Whether or not it helps, I couldn’t say, but it’s a spontaneous thing that’s happening. I also found hypnosis more effective than sleep - I know, sounds woo.
I haven't heard about eye movements after covid infection. I'll do a search and see if it popped up anywhere else. Re: hypnosis - my gradate school research was all on hypnosis. We were figuring out why some people are highly hypnotizable and can use it effectively in many situations. I haven't conducted hypnosis research in a long time, but it is definitely a unique state of consciousness that is different from placebo/expectancy. - Jarred Younger
For a moment I thought you were running it and was so dissapointed. Thank god i was wrong. When can we expect a paper on long covid and MECFS scans?
Is there any chance of testing high vitamin d3 and k2 plus the other co factors that Dr Eric berg says to take in his TH-cam videos, please for M.E.CFS and insomnia
"Doctor"? You mean the chiropractor, or is this an actual doctor with the same name?
Dr Berg is not a real doctor. He's a chiropractor and a Scientologist. Look up what his son Ian Rafalko has to say about his father and this evil cult.
A deficiency of D3 or K2 would be very harmful to the person. I did a video quite a while ago emphasizing that a comprehensive vitamin/mineral panel should be conducted every year. So many people are low on B vitamins and others that are causing many of the chronic problems. - Jarred Younger
❤❤❤
Watched an Autoimmune Doc series- the biggest issue at the root of all autoimmune diseases is dairy and wheat- particularly in North America! GMO and glyphosate are terrible and banned in some countries, yet North America they poison our food!
It paralyzes the amygdala