Dr. Jarred Younger Presents: How We Can See ME/CFS Inflammation In the Brain
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- Опубликовано: 7 июл 2024
- Dr. Jarred Younger’s 2016 Ramsay Research Grant was used to show that brain temperature is elevated in ME/CFS. This increased temperature is a sign of brain inflammation. The findings are now being replicated in a large group of individuals with ME/CFS.
Dr. Younger’s lab is now developing new magnetic resonance imaging (MRI) and positron emission tomography (PET) scans that can determine whether someone is suffering from brain inflammation. The goal of this research is to conclusively show that brain inflammation should be made a primary target for ME/CFS treatment.
In this webinar, Dr. Younger will gave updates on the brain inflammation research, describe the studies coming up, and discuss directions for improved ME/CFS treatment. 
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I was 35 when I was diagnosed with CFS by a leading CFS specialist. I’m now 60 & have little hope I’ll see any breakthrough in time to greatly improve my health. I’ve cried about it in the past. At most, I can tear up about desperately wanting a breakthrough, but I don’t cry anymore. I’m housebound & mostly bed bound. I don’t want the next 35 yr old patient to have to watch the world from their bed for 25+ years. Thank you so much for spending your career in researching this much maligned illness.
I am so sorry to hear about your long term condition. There is a RUclipsr named PhysicsGirl who got this from COVID and this is how I learned about this dreadful disease. I had no idea someone would be bed bound all of these years. I don't want this to happen to PhysicsGirl :(
Diagnosed in my20's . I'm56 now.. I understand
Amgligen is approved for trials finally.
Have you tried a stellate ganglion block?
I understand, it’s been 20 years now. 46 -66. Sucks.
I’ve been diagnosed with ME/CFS after having mono/EBV. That was 2 1/2 yrs ago. I would LOVE to be in a study for this HORRIBLE ILLNESS that most people don’t believe in & that includes Doctors!!! How sad is that! PLEASE PLEASE HELP US THAT SUFFER FROM IT!
Living with this illness IS NOT TRULY LIVING, JUST EXISTING!
I hope you get this reply but when I went read your comment all I could say is yes indeed that is me I am so sorry that you suffer greatly it sucks I must say I too am exactly like you are I also have complex PTSD the two of those together is a living hell it's awful how are you doing today?
Please help us! We have been abandoned by science and medical for too long.
Yep overlooked we are too many years went by ridiculous
I have ME/CFS, Fibromyalgia, I have suffered with chronic Epstein Barr and have had Mononucleosis every year since 2009!! Was diagnosed with ME in 2018. I am having a good day if I can wash a couple dishes. But then I am sick. I could go on and on…I have such a long story!! Definitely believe in the inflammation of the brain.
I get it completely, you're not alone
Fybromyalgia is part if me am sure
@heatherz Who ever thought a woman would be excited about feeling well enough to do dishes? right? Believe me. That is the sign of a good day. I know exactly how you feel. Hugs
@@TracyIndy do you happen to have hypomobility iblve had CFS 26 years fybromyalgia 7 even though I believe it's same thing found out I have asperger's ADHD at 43 after sins diagnosis it's linked to these awaiting to try ADHD meds for the pain alas shortage
@tomsale5142 Hello Tom. Sorry if I sounded like I was only including women with these issues. I think you have quite a bit going on yourself. I have CFS and Fybromyalgi. Luckily, I found a neurologist who has been very knowledgeable since 2018 and makes an effort to treat me, unlike other doctors who won't recognize an issue. I don't have ADHD, but I am having more of those cognitive symptoms as my ability to focus peters out throughout the day. Communication has to be when my head is clear, or I'll wait for a later time to respond. I've heard of hypermobility involving joint dislocations, and I don't have those. I do have chronic, intermittent joint pain and aches, where I feel as if I have terrible rheumatoid arthritis for days to weeks, then it goes away. There are ADHD meds that I hear are prescribed, and I have never taken them, but I am now aware of shortages because of you. TY. I'm sorry you can't get them right now, but they should be back soon. I'll guess it is very frustrating. My Dr. And I are focusing on keeping me awake, so Modafanil is helping me quite a bit. Sending hugs to you, too. Find your Zen place, and we can all get through this together. ❤️ As for pain I am hearing talk of using gabapentin, but again I have not tried that yet.
Another wonderfully clear presentation from Jarred Younger. He's a great communicator as well as an amazing scientist. Can't wait to hear the leukocyte results from the first ME patient! Good to hear him call for a dedicated ME clinical trial centre too. We seriously need some multi-millionaires to take an interest in this disease, because govts won't. Cheers from Australia 🇦🇺
I am 43 and have had this since my 20s and sometimes I believe that I had signs of it as a child and I never felt like I was rested . I am shocked that there has really been no treatment for brain inflammation especially since it impacts so many bodily systems. I hope one day there will be something .
Me to but advice get tested for ADHD autism heds diagnosis 43 but had fatigue all my life now I no why muscle pain worse
I think this video might have just started the process of saving my life. I will never stop researching now I have hope. I cannot thank you enough
Is pain your worst symptom
I have ME CFS I use asprin and ice packs that helps me for a short period. I have always said my brain feels inflamed and on fire.
I cant believe i didnt know any of this groundbreaking reaserch! I have been caring for my daughters health the past 4 years and stopped reaserching for myself because i thought things with cfs would never change...i cant tell you how happy i am to have physical evidence of why i struggle so much each and every day. Thankyou so much.
Check out Younger Labs as Jarrod also has other videos on RUclips. Plus a quite a few studies online. Also check out Professor Ron Davis via the Open Medicine Foundation. Lots of RUclips videos of him. And also this channel Solve ME
Also, check out the work that Dr. Ron Davis and team are doing at Stanford University. Also Dr. Alain Moreau, and Dr. David Systrom research on decline after exercise-- they all have great RUclips videos. Scientists are finally starting to study us!! And they are finding very distinct difference between ME/CFS people and healthy people, it's very hopeful :)
Be sure to research LDN (Low Dose Naltroxone). I've been wanting to try this for years after seeing an article about in my local news paper medical column back in 2014 & still have the clipping. Spoke to a local compounding pharmacy I found on a site called -lowdosenaltrexone & who gave me the name of a dr. I've yet not called until I can get tons of bloodwork done for review. Also found a site with dr. referrals for LDN - ldnresearchtrust. I hope for the best to all with this debilitating disease.
This is also a useful video ruclips.net/video/yUa3kLel3XI/видео.html
Watch Raelan Agle on RUclips. She has her own channel. She had ME/CFS. She’s fully recovered. Her channel is mostly about that and long Covid people dealing with the same symptoms.Good luck!
The Bateman Horne center would be a good candidate for performing clinical trials for ME/CFS. Unfortunately there aren’t many clinical care centers for ME/CFS in the USA with the knowledge or resources to do this properly. So far most academic teaching hospitals have ignored ME/CFS patients or made token underresourced efforts at patient care for this population.
I was originally diagnosed in New Jersey teaching hospital also where they did the gulf war issues. That was years ago I moved research on this. I've been going on for over 25 years supposedly still doctors do not even know what it is unreal
THANK YOU SO MUCH-- as an ME/CFS patient, all of this resonates with me so strongly, and explains a lot of our "unexplainable" symptoms!
We’re so lucky to have Jarred on our team
I want him as my doctor. 23 years already with this symptoms worse since vaccine
@@marymastandrea2640 Haven’t you realised is the pharmaceutical medications that caused you me/cfs? Why did you let them inject you with more poisons. !!
This was certainly eye-opening. And just to know that people are out there that want to find a cure or at least something to mitigate the symptoms I would have never known was actually a reality I have severe CFS/ME and everyday I feel like I'm dying. it has gotten worse the longer I've had it and I've had it for a very very long time I don't know whether my brains inflamed or not all I know is I would do anything to feel good for one week in my life. And for anybody that reads this and has CFS bless you it's a very difficult journey.
@@susannastromberg6221 hi Susanna. Thank you so much for the very thoughtful and thought out reply to my comment. you know what I appreciate the most is how much effort you put in to explaining the different doctors the different parts of keto that are important that make it work and all that information you gave. I have been on the keto diet before and yes I did feel better a little bit but psychologically it was not working for me. I don't do well when my diet is so restricted. actually it makes it impossible for me to accomplish eating like that. I only eat six basic foods because I had all my teeth pulled out due to an infection that got in my head. I would like to say I could eat a ketogenic diet but I know that I cannot it's just too rigorous and way too much deprivation. Thank you anyways for the info I will keep it but I did the ketogenic diet before and as soon as I went and had just a few carbs I gained all the way back and didn't feel better it was just too radical. Thank you again for being so thoughtful I appreciate you.
@@kavitadeva Did you have ME/CFS before you had your teeth pulled out?
@@sneakypress good question. I was severely sick way before all the roots had to be pulled and deterioration of jaw bones. It was Oral Neuropathy. Thank you for contacting me. Do you suffer from ME/CFS
How are you doing?
I’m 81 and started when I was 32 with infectious mono and I’m homebound and bed bound everyday with severe
ME/CFS and all the miserable symptoms 50 years later. I’ve had to accept the fact that I’m not going to get better and deal with a debilitating illness for however much time I have left. It has stolen my life and all the precious moments I “didn’t” have with my precious family and friends. Of course, I’ve suffered with difficult psychological
Issues because of this illness. The phone rings occasionally, I have company that feels obligated to visit me for an
hour and the rest of the time it’s me and my cat. Yes, it’s difficult to say the least but Praise God I have my Faith.
I wouldn’t wish this on anyone 😱😭😢😅😱
@@kathleenriley4472 hi Kathleen my fellow warrior. I say warrior because this illness is only for those who have something special that keeps them alive. Kathleen, have you ever felt, I don't want to die, HOWEVER how am I going to deal with this any longer? I have had alot of Suicidal ideation. I can't take my life, I am too chicken. Do you deal with this very mentally painful part of ME. Your Comment was very potent, and sad which angers me that this is your life. I got it from swimming in a very polluted Bayou. It did not look polluted but within one week of swimming in that water I was deathly ill and I lost 20 pounds In one month. ever since then nothing Has been the same and I have had this for over 40 years. you know the way I see it is CFS or ME is like the trunk of a tree and all the branches coming out of that trunk are all different diagnosis that come from having this disease. for instance I have severe neuropathy I have DEgenerative DISC disorder, sleeping disorders, movement disorders, all kinds of things that have left me bed-bound. the one miracle was I got a mobility scooter and I have my service dog and I can take him running by the scooter and that has allowed me to get out of the bed. I have problems breathing because things have happened in my throat and it goes on and on. do you find this is the case for you? You know I'm like you I just come to a place I will go to no more specialist no more treatments nothing. it's over. I did it all. Every holistic thing in the world I've done all of that and to be honest nothing really made it go away in any way so like you said it's just something we have to live with, unfortunately. but I am so grateful that you replied to my comment and I really took in everything you had to say and you're 81 And it's incredible the amount of Fortitude you have to keep going. Bless you sister bless you. I myself am 65 and like I said I've had it for over 40 years so I just want to say, you know what do you say right? but hang in there❤️🩹💜 Comment again or reply again if you want to I'm here to support you so you don't have to feel alone in the hell of this illness. God bless you, take good care🌞🦋🌻
I have been suffering for over 35 years and it has gotten progressively worse after the age of 60.I would love to have this brain scan as a long term patient to somehow help in understanding this condition.I am currently at the shutdown phase as my coping ability is almost zero.
I also have 25 years would love to talk to you
I have had this for about 20+ years and I am starting to get worse my heart goes out to you for having it even longer
30 years and much worse now. We are not alone!
So grateful for the persistence of Dr Younger!
Dr Younger, I have volunteered to your office in the past. I am the child of a nuclear worker. I have severe chemical sensitivities which trigger encephaloinflammation. I have been severely ill with ME most recently since injured 11-17-2022. 10 yearsago today.
You can do a clinical trial and actually watch the process happen in the brain as it is happening. This is the third time I have been severly ill. I recovered and opened a specialty business catering to chemical free needs, for any reason. Ill people are my specialty, I care. I became ill the first time in 1982. I worked with chemicals, I unknowingly lived near a chemical waste dumping area and 4 miles from the Pepcon factory that exploded in 88. In 2017 I was driving down a beautiful country road, all windows and sunroof open, when I turned a corner and caught the overspray of fertilizer/weed killer being shot out of a huge tube off of a moving tractor type machine. I have ben bed ridden in excructiating pain since 4 days after that.
I have ALL of my medical records and labs. I have 50 lbs of research and will share all of it.
I love that Jarred is always keen on getting started on clinical trials without waiting for ever. We need to be testing broadly if we want to get anywhere in the next 10 years
10 years almost 80 this ate up most of my life
@@marymastandrea2640 And i saw they are close to a diagnostic test for LC, but we are still waiting 40 years . Hopefully it can be modified for MECFS. Take care
@@mokiloke
what is LC? lyme?
@@sekischro5093probably Long Covid
This is so awesome. Someone wrap Jarred in bubble wrap so he can continue his work!
As someone who maybe has CFS, or Long COVID , or both, this gives me a lot of hope.
I never expected that scientific research would make me tear up. From hope that is. Also just wanted to note that I have positive experience with cold showers (short time unfortunately) and CBD (full spectrum) seems to help with my brain inflammation.
Good idea with the cold showers! Maybe I'll just shower my head with cold water instead of my whole body :)
Only a few days in on the cold showers, but they notably “cool” my body’s intense heat (this is unmistakable; inflammation?) and I have less severe depressive thoughts for a few hours afterward. Looking into an ice chest to take it up a notch.
I noticed in the summer months I can't tolerate the heat constantly putting my head under cold water except in the winter I'm freezing like I have no blood I was told the hypothalamus that controls the body temperature the order atomic nervous system is messed up in these people
What’s so odd is hot showers help my brain inflammation feelings. On my head and neck especially. Because when I don’t wash my hair I don’t experience as much relief.
@@rndm4642ow did you get in with that? I began ice baths a few months ago and believe it caused a relapse however I was doing it daily which I think was too much.
I m 63 with me,I started noticing problems at 28 .I feel just like you,same thoughts.
Thank you so very much.
26 years here, I've tried everything, Savella worked best, fir 3.5 years. Been off it 6 years, trying it again.
When my brain feels extremely inflamed I ice my head for about an hour and it definitely helps.
Do you have hypomobility I have heds Asperger's ADHD genes for it
@@Truerealism747 no
Im severe/housebound , I wish I could be apart of the study
So grateful for those like Jarred Younger and Stanford’s Ron Davis. Im in GA not too far from Birmingham, just filled out the basic form on UABs site for Jarred’s trials. Might be a challenge for me to make it to UAB but i desperately need answers and increasing in severity at a scary fast pace and feel im running out of time.
Oh God bless I'm in Georgia as well. I am so tired but I would love to be a part of helping.
Big thanks to the Solve ME team, Dr. Younger, and Dr. Younger’s team for this fantastic and illuminating seminar and everyone’s hard work on the journey for a cure for ME/CFS
I can't believe there's no treatment really like he says this illness started in 1991 I believe in Nevada there was outbreaks of it
@@marymastandrea2640 No CFS started to get attention in the late 70's and through the 80's. Seems like it started around the same timeline as HIV/AIDS started showing up.
@@marymastandrea2640 I believe I had it in the late 1980's.
The question is whether any given observed pathology is a primary cause of illness or second (or nth) order consequence of some other more fundamental underlying problem. Given the profound complexity of the human body it will take time to sort these issues out. Even if only nth order effects can be easily measured, that will go a long way to validate the experience of ME/CFS patients. We should preserve ME/CFS as a broad symptom construct that may have multiple underlying pathologies instead of only attaching a particular pathology to the diagnosis. Instead each distinctive pathology should be thought of as a subset of this illness. Only in this way will we help everyone who is sick and disabled.
Slovakia. The main underlying problem is chronic inflammation on a cellular level that crosses the blood-brain barrier also. Vaccines made me worse as they ramp up your inflammatory response. Post viral condition onset
I used injury ice packs around my neck and across my head, to alleviate my inflammation symptoms and it really helped. Also Low Dose Naltrexone. I live in the UK and it was very difficult to get a prescription for it, but once I had found a Doctor to prescribe it I got it sent regularly from a pharmacy in Scotland. It too helped. As did getting off Zopiclone for insomnia, and replacing it with a member of the Diazepam family. I found that Doctors are reluctant to prescribe Diazepam, but it was the only drug that I could tolerate, (totally bed ridden, and intolerant to any light, sound, smell, most foods and supplements) and it was an absolute life saver.
This was an amazing presentation. Has there been any updates from Dr. Younger?
Thank you, Jarred, for devoting your time to try and work towards some kind of solution for ME/CFS sufferers.
He's talking about the lack of brain blood flow that can also be from the automic nervous system. Paral sympathetic nervous system you can Google that all these different things are controlled by the autotomticnervous system
This is the best talk I have ever heard in my life. 😭 I lose hope, but then this!
❤ awesome. I actually currently take a great natural anti inflammatory with quite a few you listed!! I was bedridden on had to use a cane and couldn’t even wash my own hair. It helped me sooo much. In 4 weeks no more cane
My blend of anti inflammatory has these in it no particular order 1. Ginger root
2. Boswellia serrata -
3. Papain/Papaya Enzyme -
4. Wood Betony
5. Devil’s Claw -
6. Bromelain -
7. Curcumin -
Do you have this compounded?
I sometimes get too hot and feel weak and have found putting wet bandana on back of neck, and am human again. B vitamins helped me some. SCD diet to heal digestion helped me. Maybe read on Hormones matter about thiamine deficiency. (careful as some get reactions and must go slowly). Used antivirals like elderberry , make sage, thyme.... tea before breakfast,research side . Found ginger, onions help reduce histamine effects. effects. I Most want to know how to hydrate better!!
Why has all research and updates ground to a halt? Patients are increasingly like crazy.
Or if you're my doctor, treat nothing and laugh at you when you go begging for help.
I'm so tired of the NHS and the lack of care with this illness. 😞
I had a Doctor that had experienced outbreaks of CFS I adults and children. I sent to see him to be accurately diagnosed. He sat on the board of the NIH and told me the research dollars for CFS are stolen yearly by cancer researchers because bee don't die from CFS. It's absolutely disgusting, they don't even mention it med school. This was 26 yrs. ago. They could've made more progress if they'd kept the research money.
thank you Dr. Younger
I am taking Naltrexone 4.5mg at night and I find it has helped me by reducing but not eliminating the swelling l suffer from. I have lymphedema all over as well as ME/CFS. I have Chronic Central Sensitivity. I hope this information helps in finding a cure or help for more suffers
you are able to tolerate naltrexone with your sensitivities? I tried but my body didnt like it i wish i could take smething
@@Vpopov81. Haven’t you realised is the pharmaceutical medications that caused your me/cfs? You cannot fix this with more drugs. They only make your condition worse.
Thank you for every minute of your work.
Has the follow up study with leucocyte + tracer with MECFS patient been performed?
Such a great presentation. Is there any update on this?
incredible, wonderful, exciting. I felt sure when I first didn’t shake off the flu that my brain was inflamed then i got diagnosis of CFS-4.5 years ago.
meditation seems to help me, I wonder if calming the brain helps it cool and then begins to heal
I think he states at the start of this the microglea cab be inflammatory and also anti inflammatory.
I’m thankful the “science” is being distributed and the topic is finally being discussed! Honestly has a lot to do with a world demand of answers for long Covid, but I’ll take it!
Here’s the thing, I get excited about these videos, but finding the doctor, wait the team of Doctors, is not realistic! It is life altering.
I’m glad it’s being discussed and thank you for this video.
Thank you Dr. Younger
Brilliant! Can't wait for the news!!!
Thanks guys!
In 2005 Bethesda Dignosed CFS but now I show SNF, MCTD, and Erosive Bones. This is very interesting. I
I have ME and fibromyalgia it has ruined my life, I have had more cognitive issues recently with walking and talking and now passing out too
Yep ruined my life too I've been studying it for years to no avail I stay on pain medicines very discouraging. Brain fog is the worst was on r Ritalin I said have high blood pressure so shouldn't really take it.
Thank you for the work you do.
I've been suffering from this illness for 33 years now. I was wondering how the brain could be running hot because since I contracted this ailment my body temperature now runs at 97.4 instead of 98.6. But then I remembered that I go through spells where the CFS flares up and I have low-grade fevers and sore throats on and off each week.
I read that 97.4-6 is normal body temp for many adults.
Truly a wonderful presentation. Thank you!
Small increases in temperature in the brain, can also amplify the effect of toxins in the CNS.
Cold caps are sometimes used to treat demyelinating CNS disease.
Activated microglia produce cytokines that are similar to toxins in the brain.
Cool temperatures are known to reduce some kinds of inflammation, however immune T cells are thought to be more efficient in warmer temperatures, (fever).
So the brain inflammation cannot be the cause of the autonomic dysfunction as well? Many people with cfs have orthostatic issues. Not few.
I have no energy physically or mentally,I am just to tired to fight anymore.my fathers sister supposedly has encephalitis around age 35,and she was never the same ,it was said her mental coping and decisions were suddenly very bad so she was sedated,she was born in 1903 she was a teacher.I remember seeing her as a child and she did not interact with us but was dressed and neat and looked healthy.I wonder at the d.n.a. Connection.
Well encephalitis is a post viral disorder and this has been labeled myalgic encephalyitis. Anything with the. itis. on the end. Refers to inflammatory example arthritis myocarditis. All inflammation
Interesting
Very promising!! Thank you for suggesting pushing for more research and to begin trying out possibilities that could work!!
Omg.. this was exciting to listen to
Thanks very much for sharing such a great presentation.
Fantastic video, really interesting area of study! Looking forward to hearing the results of the leukocytes research, whatever the outcome of that will be extrememly valuable information. Wonderfully clearly presented information here. Good luck with the research, great to hear you've got an NIH grant...that rare of beasts!
Thank you so much Professor Jared younger , I have me/CFS and feel it is brain inflammation , the cognitive symptoms, the tinnitus , the feeling like i have flu everyday etc, so your science makes a lot of sense to me.
I was wondering if dexamethasone was ever trialled in me/cfs ? It’s anti inflammatory and crosses the blood brain barrier.
I also would love to know what medications would help this I just take pain medicine
"Dexamethasone inhibits T-cell proliferation in healthy controls and in CFS patients. However, the maximal effect of dexamethasone on T-cell proliferation is significantly reduced in CFS patients as compared with controls. ...We conclude that CFS is accompanied by a relative resistance of the immune system to regulation by the neuroendocrine system. " pubmed.ncbi.nlm.nih.gov/10690878/
Haven’t you realised is the pharmaceutical medications that caused your me/cfs? No drugs can fix this, they can only make your condition worse !
Why does it cause autonomic dysfunction like pots and also like severe anxiety and the other 40 symptoms if it’s just like the same mechanism is what happens when you’re sick. How come people don’t get pots then when they have a normal virus or severe anxiety? Those are not normal symptoms for having a normal sickness plus the level of fatigue does not even compare.
Taking Prednisone right now to prevent the inflammation from the process of moving.
How are you doing now? Prednisone is a strong drug, I didn’t think steroids could be used orally long term
@@bruh-hr1mt I only use it for a week a couple times a year.
I got chronic fatigue after Coxsackie b infection...7 years and my Igm is still positive...so the active infection is ongoing!
This was a year ago, are there any updates? Is there any collaboration with Dr. Vaughn and all of the real life experience he is getting treating for microclots?
Hurry up!
Thank you so much for your continued perseverance studying me/cfs. Great lecture and I can't wait for your results regardless of the outcome.
Dang, I felt burning sensation in my head when I pushed myself real hard, so I wet my towel and wrap it around my head and it atleast _felt_ better. I can engage in physical activity without any problems, that is unless I push myself mentally along WITH it.
This is pivotal
👍👍👍 As I live on the Big Island of Hawaii, working remotely sounds like a hopeful possibility.
Am looking forward to hearing more.
Thank you. Yet this fact is still missed among doctors. They say the name ME is not appropriate because there is no inflammation in the brain. Also Frau Scheibenbogen (Charite Berlin) said inflammation in the brain could not be found. I don't understand it. Obviously that inflammation is not the same like Encephalitis. But it is called Ence-phalo-myelitis !?
A couple of natural product suggestions for ME/CFS, fibromyalgia & Long Covid:
- dihydromyricetin - fucoidan*
* though whole food approach (i.e. wakame) might work better since polyphenols & alginates may have benefits
Someone should address the issue of awareness among doctors, especially older male doctors telling younger female patients they are being manipulative to gain sympathy! And maybe they just need to exercise and stop being lazy!
It is just like racism. No on can stop anyone from their stupidity and bias. I have received this BS all my life. One must leave the losers behind and find someone open to new ideas and evidence. I have been diagnosed since 1987 and have never found a primary MD who will put the name of this disease into my chart. I have no family help and am currently living in my subcompact vehicle. I can no longer eat. We have to learn to care for ourselves, if no one else will. I have not worn clean clothes or had a cold shower for 6 days. I
take my joy in the precious small things in life.And never compare myself to others. We are all unique. ❤
Wait until you are older and see how doctors treat you. Doctors patronize, minimize and barely listen.
@@katella I know, I’m 46 now and I’m beginning to see it. Everything according to them is due to pre-menopause. I’ve also seen what they did to my mom prescribing calcium when she was actually dying of calcification of her arteries. She passed away after heart surgery that was too late.
@@hdd1977m7 I'm sorry for your loss. One hates to think that something could have been done differently.
Swimming pool helps cool body and brain.
so then how to end the inflamation in the brain ??
So even a year in the future, we are still left untreated. Heck even many of my Doctors do not believe in CFS. A LOT of days, I just hate my LIFE.
when talking about LDN what happens if you are Opioid intolereant? i cannot have any form of opioid or i am terribly ill. I have ME/CFS.
Long Covid 350 clinical trials I wonder how many CFS or. Chronic M.E. had
So, in essence, we’re screwed. Thanks Jarred, but got tired of being a Guinea pig. Alt supplements do help..❤ thanks so much for your compassion, focus, and care about this, though..right Jarred, seeing is believing..but I think he is too smart for the system
high dosage Thiamine may help some with CFS.
Is it possible to do biopsy post-mortem to see if leukocytes are in the brain?
It is absolutely possible. You can open the skull and take samples of the brain. I think the problem is the low interest to do that.
Fibromyalgia 29 yyears CFS M.E 17 years uk England.
Which kind of improved mecfs treatments are mentioned?
Sorry Im a severe patient and cannot watch all of the video ..
thank you!
46:33 he shows a list of potentially promising treatments :) Drugs and botanicals
One idea is to cool the carotid arteries in the upper neck leading into the brain with a cold pack or some other medical device. He said that he doesn't know if that would have to be continual or if it would even work for everyone. Just an idea based on the heating in the deeper parts of the brain.
Brain temp but not body temp? Like FEEL feverish without body fever?
How does the brain inflammation theory relate to the mitochondrial dysfunction theory?
I wonder if perispinal etanercept might work for this ME/CFS thing.
Wonder if they looked at the microglia cells connection with cannabis possibly positive effects on IGF-1 (M2)?
I wonder if this is why many ppl can't deal with temps above 75 deg F. At least the folks who have chemical sensitivities have this issue. As well as hyper sweating symptoms.
If I would like to make myself available for research, how could I go about doing that? not just talking about clinical trials, but also any type of imaging or bloodwork that might be needed
Me too
Dr. Younger does give us the name of the website to do this in this video. If I remember correctly.
He’s wrong about when he said all MRI scans are laying down. You can do standing upright MRI’s, and plenty of CFS patients have
Very few facilities have an MRI machine that can do vertical scans.
@@maryr7593 So? They are still a well established thing that exists. And crucial in the diagnosis of certain types of conditions, like CCI
I agree with him, the brain is definitely inflamed from my experience, can you not stop it being inflamed by turning off the stress response though?
I honestly don't know but surely that's possible?
I wonder this too
@@elizabethread6878 I've been able to do it but not permanently but Ive heard other people have
@@elizabethread6878 for example 'mind chatter' can be slowed down, there's dozens of videos on RUclips about this
@@liam.4454 yes me too and from i underhand this is key to healing .. but can be very hard if it’s severe enough. Med does help
@@liam.4454 yes I’m super familiar with this concept and monitoring thoughts etc… thank you for responding :)
Why would pharma want to find this cure when I have been given about 15 of their depression and other brain fuction drugs.it’s a cash cow and even when told of side effects or no change I was always just told to take more.I also had a farm chemical exposure here in Louisiana and was hospitalized for five days in late thirty’s.it’s such a mystery of pain that wrecks life.
I worked with chemicals in a beauty salon then the onset of the illness. Definitely somehow abnormally affected the immune system and pushed it into an inflammatory response flu like illness
Indeed. CFS/ME WRECKS life.
Pain is brain inflammation
💯
What are you talking about most ME patients do not have OI? This is part of the ICC/ICP. This is a cardinal feature of ME.
Is there any way on how a private person with ME/CFS can do these brain scans to diagnose neuroinflammation? I would love to finally have a way to at least diagnose this horrible disease...
Do you follow any utube MECFS recovery story examples to aid in your research? Why are some people recovering with certain coaches?
SolveME: How do we get an update on this research?
Why are they not connecting the pathology of cancer to these bother similar diseases
My husband has severe over sensory to noise and light and cannot tolerate a MRI machine unfortunately
He could wear ear plugs and he can also wear donkey ears is what I call them it’s headphone like that is used for loud sounds…I have super hearing sensitivity since I got the vaccine and I had to get an mri as well so I doubled up with ear protection. And I was fine during my mri
@@margaretmccomb3672 you don’t think we haven’t thought of that and tried it multiple times? You were fine because your over sensory isn’t as bad- even with ear plugs and plastic gun noise canceling headphones it’s still way to loud for him - he couldn’t even make it past the first 5 minutes when they are just getting the mri position right - his is so severe I cannot even wash dishes 2 rooms away without doors closed his head gear on and asleep- even just the sound of the heating and air coming through the vents is too much after a few minutes- not even flushing the toilet is allowed in our home without getting him prepared for the noise-
@@glennyonce6497 sorry to hear about that …I was only trying to be of help I didn’t mean to come off as like you didn’t try it. I really hope we all get
Better from this. May I ask how did this all happen to your husband like was it after trauma or infection medication? I keep searching for answers and I come up with nothing. I tried everything possible and i don’t get anywhere. All my
Tests have been normal too. Well the basic bloodwork they haven’t really checked specific labs. Anyway best of luck.
@@margaretmccomb3672 we don’t know- he had several things going on that could have triggered it over a year or two- his came on very slowly and got worse each year until bedridden- the year we think he got it he had multiple sinus infections , 2 lumbar punctures that one of them went wrong with spinal fluid leeks and was hospitalized for 3 days with horrible brain pain, also lots of stress and anxiety that year from going through a adoption and having panic attacks so bad he was in and out of the hospital about 30 times that year- so we don’t know if it was stress, infection, brain inflammation from the spinal tap or what- his first symptoms were becoming allergic to alcohol- he was a alcoholic back then so that was a tuff one to be forced to stop drinking because of a MCAS symptom- then slowly couldn’t take many medications- on about year 2-3 with it he was still able to work but started feeling so tired he couldn’t do anything after work or the weekend that was when he was 28 and healthy- at 29 he got a colonoscopy and the medicine they put him to sleep with really messed him up over night he couldn’t get out of bed for a month then when he went back to work he could only work a few hours before he would crash for several days so he had to shut his business down and stop working over the next 10 years it got a little worse each year until he had to get a wheelchair 7 years ago if he was able to get up he wasn’t able to walk over a few hundred feet a day around the house- 4 years ago we were watching tv one night and he started saying his brain feels like something is stinging it and went to bed not knowing what was going on the next day after watching tv about 20 minutes it happened again but stinging so bad he was crying in pain said it felt like a thousand wasp stinging his brain- we went to the ER they couldn’t help, his doctor referred him to a neurologist about 2 months later but he was so bad by then he couldn’t tolerate a MRI- he’s had them in the past but couldn’t do it anymore- it was so bad that first year we must have made 60 trips to the ER the only thing he could tolerate to help bring the over sensory brain pain down was Ativan- the ER seen this helped so they gave him a two week supply- after 6 months of agonizing pain something was finally helping as long as he didn’t watch tv or listen to music and wear dark sunglasses at home the Ativan helped but his doctor did not want to prescribe it to him so we went to another doctor and they accused him of drug seeking.. smh.. my husband said you’re damn right skippy.. I’m seeking a drug that keeps me from screaming in pain day and night- they couldn’t understand what his disease was for one thing and definitely couldn’t understand why Ativan would help brain pain- the reason we say brain pain because it’s nothing like a migraine or a headache it’s far worse and feels much deeper- my guess is since Ativan can help with seizures as well it must be helping him in a similar way- with that kind of pain he was desperate to get more Ativan sooooo we knew a pharmacist that would get it for him for a price.. we had no choice- it’s like being on fire and saying you cannot have water to put it out- over the next few years he’s tried every migraine medication every anti inflammatory medications and pretty much all psychological medications to see if they would help- 99% he couldn’t tolerate them- even drugs that are very similar to Ativan like Xanax or Valium wouldn’t work and he couldn’t tolerate Xanax at all- Any pain medications like Vicodin would give him over dose symptoms at the smallest of dosage- He can only tolerate up to 1mg Ativan a day divided up in 4s but it’s enough to keep his overwhelming pain down and allows him to use a small iPhone mini to watch several programs or a movie a day with the brightness all the way down and a warm filters one- he can only talk on the phone a few minutes before his brain will flare up- it can be a nightmare not knowing if he’s had to much noise or light in the house- but without the Ativan he would have chosen suicide by now - he’s not depressed in any way just the pain is unbearable- the pharmacist is about to retire so don’t know what we will do in a few years if he’s still alive- My husband also started LDN about the same time and believes it is helping a little as well but he can only tolerate 0.5mg of LDN since starting it about 2 years ago he can get in the shower 2 times a week but has to keep them under 4 minutes with his noise canceling headphones on- winter is coming and it’s always worse in cold humid weather for some reason and we get a lot of cold humid rain here - I’m worried because this year has already been so bad for him- he has a phone doctor appointment this week coming up with a ME doctor out in California that supposed to be one of the best in the country- I don’t think he will be able to do the entire phone call so I might have to finish it for him- Hopefully he will have some insight on what more can be done for his brain pain over sensory crap- he doesn’t mind being bedridden 23 hours a day if he can get some of the pain under better control nothing has really helped the fatigue that keeps him bedridden-
@@glennyonce6497 I totally understand. I feel for you both so much. I could not tolerate the noise. Had to lie on a stretcher (from UK!) in the hospital...endured a couple of minutes and had to stop. Any more would have caused a severe crash lasting weeks/months from an already totally bed bound state. LDN helped, also CBD, cranial sacral therapy (the therapist came to my home) ice packs on my neck and head (with caution) and complete security of care. Also lying on the grass in nature! Good luck
Please!, when picking subjetcs for your trials, pick someone with real ME/PEM, not some random ME diagnosed person, who might be better off doing a LP course in the weekend. Im not blaming, but we all know diagnosing is still mostly an empty sheet.
Are u connecting this inflammation to cancer
What about the people who have recovered from ME/CFS? I have viewed podcasts and youtube channels with stories of recovery. I'm very confused. I'd love some feed back, understanding or experiences shared.
So what if chronic fatigue is an early cancer stage if they share so many same symptoms
wouldn't a ketogenic diet reduce the inflammation? the research of Dominique D'Agostino on how ketones are a neuroprotective energy source for the brain, and ketogenic diets have been used for epilepsy for a hundred years now. it has also been shown that the brain of Alzheimer patients cannot use glucose for energy, but does well on ketones.
fukuda ... why is anyone still using fukuda???
How far are we with this?
Well be dead by the time any of this means anything
Look into the NIH heal project headed by Lynn Gerber,
sidartha Sikdad, Jay Shah, Sandip Bismal
If you're really into imaging look at the work of Sandip Bismal and Sidartha Sikdar