Groundbreaking Chronic Fatigue Syndrome Research (ME/CFS)

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Physician, geneticist, and researcher Dr. John Greally shares the groundbreaking chronic fatigue syndrome (ME/CFS) research that he and his team are conducting aiming to establish diagnostic testing and treatment protocols for the millions of people facing this debilitating condition worldwide. ME/CFS advocate Liz Carlson also joins us to share her role in supporting the funding for this and to let others know how they can get involved.
AS MENTIONED IN THE VIDEO:
How to donate to Dr. Greally's research (or learn more about it) - kernls.com/projects/foundatio...
Center for Solutions for ME/CFS at Columbia -www.publichealth.columbia.edu...
Albert Einstein Montefiore Medical Center / Dr. John Greally -www.montefiore.org/body.cfm?i...
Liz Carlson - healwithliz.com
PLEASE NOTE:
All donors will receive a tax receipt from Albert Einstein. Although donations through the link provided are preferred, 100% of donations made via the RU-vid '$Thanks' button on this video will go directly towards this ME/CFS research project (no tax receipts will be issued for these).
LEARN MORE:
📖 Check out my book! Finding Freedom: Escaping From the Prison of Chronic Fatigue Syndrome. View on Amazon - amzn.to/2LtzBcl
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TIMESTAMPS
00:00 Introducing Dr. John Greally & Liz Carlson - connected through Kernls, a direct-to-research fundraising platform
02:30 Dr. John Greally’s work as a physician in the Bronx and as a geneticist
03:40 Why Dr. Greally is passionate about ME/CFS research, and the researcher at Columbia that got him on board
05:06 How Covid has left us with THIS major realization
05:35 Dr. Greally talks about his collaboration with the Center for Solutions for ME/CFS at Columbia
8:25 Why previous ME/CFS studies have had ambiguous results regarding gene expression & how a new test methodology has produced compelling results.
09:10 Why having concrete markers for people facing ME/CFS is essential (+ Raelan & Liz’s experience with ME/CFS diagnosis)
11:35 How finding the mechanism of disease could lead to a ME/CFS diagnostic test & help develop treatment protocols
13:30 What are epigenetics and how does it relate to disease?
10:05 What is a gene? Dr. Greally uses a highway analogy. (We're so glad we asked this question!)
17:48 How genes can activate in response to stress - and how the difference in ME/CFS patients & controls after exercise can now be measured
19:36 What the ME/CFS genomics study will look at & how they're using precise diagnostic tools from expert practitioners. Dr. Greally explains new sensitive blood pressure tests.
22:12 Some current challenges faced by physicians diagnosing ME/CFS
24:47 The role of Dr. Sri Raj, the human population geneticist involved in this study
28:10 Dr. Greally speaks to the Decode ME project in the UK
30:58 Are there different types of ME/CFS?
36:45 Research involving the gut microbiome & ME/CFS
39:59 Are long COVID & ME/CFS the same thing?
41:41 Understanding genetic differences in people with ME/CFS vs those without
44:33 The cost of this research per participant
46:10 The potential treatment options to come from this research
48:30 How to support Dr. Greally’s ME/CFS research and learn more
…
NOTE: This description may contain affiliate links to products I enjoy using myself. As an Amazon Associate, I earn from qualifying purchases. Should you choose to use these links, this channel may earn affiliate commissions at no additional cost to you. I appreciate your support!
DISCLAIMER: Dr. John Greally's interview on my channel is independent and is NOT an endorsement of any content on my or Liz Carlson's channels. In addition, this is for information purposes only and nothing we share should be considered medical advice. Please make your own assessment, do your own further research, and consult your trusted healthcare professionals before deciding if anything we talk about here might be right for you.
#chronicfatiguesyndrome #cfs #chronicfatigue

Опубликовано:

30 июн 2024

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Комментарии : 175

@RaelanAgle 2 года назад

How to donate to Dr. Greally's research or learn more about it - bit.ly/3owIc2z. Although the use of the above donation link is preferred, 100% of donations made to this video using the '$ Thanks' button will be donated to this research project as well. TIMESTAMPS 00:00 Introducing Dr. John Greally & Liz Carlson - connected through Kernls, a direct-to-research fundraising platform 02:30 Dr. John Greally’s work as a physician in the Bronx and as a geneticist 03:40 Why Dr. Greally is passionate about ME/CFS research, and the researcher at Columbia that got him on board 05:06 How Covid has left us with THIS major realization 05:35 Dr. Greally talks about his collaboration with the Center for Solutions for ME/CFS at Columbia 8:25 Why previous ME/CFS studies have had ambiguous results regarding gene expression & how a new test methodology has produced compelling results. 09:10 Why having concrete markers for people facing ME/CFS is essential (+ Raelan & Liz’s experience with ME/CFS diagnosis) 11:35 How finding the mechanism of disease could lead to a ME/CFS diagnostic test & help develop treatment protocols 13:30 What is epigenetics and how does it relates to disease? 10:05 What is a gene? Dr. Greally uses a highway analogy. (We're so glad we asked this question!) 17:48 How genes can activate in response to stress - and how the difference in ME/CFS patients & controls after exercise can now be measured 19:36 What the ME/CFS genomics study will look at & how they're using precise diagnostic tools from expert practitioners. Dr. Greally explains new sensitive blood pressure tests. 22:12 Some current challenges faced by physicians diagnosing ME/CFS 24:47 The role of Dr. Sri Raj, the human population geneticist involved in this study 28:10 Dr. Greally speaks to the Decode ME project in the UK 30:58 Are there different types of ME/CFS? 36:45 Research involving the gut microbiome & ME/CFS 39:59 Are long COVID & ME/CFS the same thing? 41:41 Understanding genetic differences in people with ME/CFS vs those without 44:33 The cost of this research per participant 46:10 The potential treatment options to come from this research 48:30 How to support Dr. Greally’s ME/CFS research and learn more

@freedomofchoicelover3734 2 года назад

I liken CFS as to being in a coma, your body is trying to repair itself, but your awake...

@mariavarga863 Год назад

I have been sick for 18 years now. Got sick when I was 25. This year I finally got to visit a ME/cfs specialist in Stockholm. They have confirmed that I have severe ME/cfs. Thank you for a interesting video! Greetings from Sweden

@benmyers1964 Год назад

Who did you see?

@mariavarga863 Год назад

@@benmyers1964 Gunnar Olsson, Bragée ME-center

@abstuli1490 Год назад

@jamiicooper8798 Год назад

So you haven't impove at all

@mariavarga863 Год назад

@@jamiicooper8798 no. I have gotten worse because of wrongful treatment and diagnosis.

@andrewclarke7798 Год назад

This is a fact,it probably happens to thousands of fibro’s .Twentyfour years ago ,I have fibro for a year, and it goes, ,fourteen years later,it’s back and I get progressively worse ! Five years ago ,we (my two daughters have fibro !) go for a week of beach holiday,I say,I’m giving fibromyalgia research,notes, study, anything fibro.,a break! , somehow,somehow, all the symptoms and pain goes !!,I come home, and BANG ,back to usual ! It’s stress ! You guys said it!(people getting it from a cold, a toxic relationship, a car crash, etc, etc,,you name it,it’s All , stress that knocks us over the edge, and then never let’s up! Thank God for you guys!!

@chrissheldon543 2 года назад

A glimmer of hope when I didn't think it was possible. Thank you all.

@RaelanAgle 2 года назад

💓💓💓

@sloth6247 2 года назад

I have long covid, I hope that research is robust and expedited for everyone with post viral syndromes. Doctor’s are really confident in their ignorance and it’s making it really, really hard for everyone already battling the small things in life. I pray that these scientist get all the support and resources they need to make groundbreaking advances.

@lelediamondASMR 2 года назад

I've had it 5 years an its took so much of my life from me I wish they would find a cure. Would be lovely to have some cure.

@kristinae.7084 2 года назад

Thank you three compassionate, smart people who are working to understand ME/CFS and pass info on to us patients. We are SOOOO grateful!

@RaelanAgle 2 года назад

💓💓💓

@dorishangel3661 2 года назад

It's my birthday next week and I asked my boyfriend to donate instead of getting me a present

@HealwithLiz 2 года назад

Thank you so much Doris. So thoughtful of you. We really appreciate it and thank you and your boyfriend. Sending you good wishes for your birthday and love from California!❤

@dorishangel3661 2 года назад

@@HealwithLiz Thank you so much for your wishes

@RaelanAgle 2 года назад

Doris!! You are amazing, thank you ❤️❤️❤️

@dorishangel3661 2 года назад

@@RaelanAgle YOU are 😀

@Beebop008 Год назад

Thanks! As an otherwise medically complicated ME/CFS patient, I appreciate the research and researchers.

@RaelanAgle Год назад

Thank you so much!

@RaelanAgle 2 года назад

Thank you everyone for your donations so far! We are aware that the donation link initially only worked in the US and Canada, but this issues has since been resolved and now donations can be made with this link globally. Thank you everyone for your patience as we worked through this glitch (and thank you for your generosity!)

@Patriciatjej 2 года назад

Thank you for a good video 🙏💙🙏 Please don't use the stigmatised term chronic fatigue syndrome in your heading. We really need to come away from this term which psychiatrics have invented in '80:ies. This term gives us all ME-ill ppl big problems and ppl and doctors just think we are chronically tired. This is not true. ME/cfs has more than 60 severe symtoms and fatigue is only one symtom of so many and there for the term is M.E. ,maybe ME/cfs, is correct and nothing else.

@philmm64 2 года назад

When he bounces back the question, do *you* think there are more than one ME/cfs? - I say there are at least 10! Maybe more. This i believe is why there has been little success in trials, and finding biomarkers for the condition. I personally met many pwME when I was sick, and very few had the exact same illness pattern to me, though we all ended up with PEM & brain fog, & exertion intolerance etc etc. Different physiological routes to the same (exclusion) diagnosis?!?!

@janettucker254 2 года назад

I dont have ME/CFS but im hoping this research helps unlock the causes of other limbic system impairments and how to treat them effectively. I have PAWS (Post Acute Withdrawal Syndrome) caused by anti depressant withdrawal, MCAS/HIT and MCS

@debbiemortinson Год назад

Agreed. I am certain it was psych drugs that caused ME//CFS and protracted withdrawal has finished me conpletely.

@debbiemortinson Год назад

@morelimefalmouththe name now given for benzo-withdrawal damage is BIND (Benzodiazipine-Induced Neurological Damage). I think they should add PIND (Psychotropic-Induced Neurological Damage). Unfortunately no one believes us when we say SSRIs caused this.

@paolo5797 2 года назад

Thank you so much Raelen and Liz for keeping spreading hope! And thanks also to Dr. Greally for you hard work! Have you heard about the new findings in Germany? An eye specialist found in one of her patients with Long Covid, that the microcirculation in his eyes was diminished. She treated him with a drug (which binds functional autoantibodies and is used for cardiomyopathy) and he got a lot better in hours. A second patient got better too. The drug (BC 007) is now in phase 2 to be tested for Long Covid. May be it will help ME/CFS patients too, let's hope!

@RaelanAgle 2 года назад

I had not heard this! Thanks so much for sharing, Ale.

@thesobersocials 2 года назад

Another Slam dunk Raelan. Keep this great work up. I ran into my first CFS symptoms in 2017 and went from being a marathoner to unable to go beyond 3km in a run virtually over night. No mention of CFS from anyone at the time and I hadn't even heard of it until the doctor mentioned it a few tests and months later as something he hoped I didn't have. I'm waiting on a rheumatologist appointment as the doctor said they should be the one to confirm the diagnosis, but CFS is what he suspects. I took up yoga after the running became a problem and was able to get by doing yoga classes fairly regularly but noticed a continued decline in energy there also. Then I picked up COVID 19 in Oct last year and am what they would call a long hauler. It was a knockout blow for me on top of an already significant loss of energy. 11 months now of significantly reduced sense of smell and even lower energy. I feel Ive taken the CFS inducing slap twice now and can only get to yoga 2 times a week and mostly lying still for both classes lol. Scheduled morning/evening breathwork sessions can be very helpful to break the inertia I find. Just that extra oxygenated blood can perk you up just enough to get moving, if only a little. Great work Dr. Greally (from a fellow Irishman) and Liz for asking such great questions and being so prepared. What great comfort and help we all get from these videos. Thanks to all 3 of you for your continued efforts to push things in the right direction. I would be very quick to echo Dr. Greally's sentiments that you two should be very proud of what you are doing here and how magic it is that you both have recovered and are out front fighting for the rest of us. Donation made :)

@HealwithLiz 2 года назад

Thanks so much for your kind words Dermot -- really means a lot! A lot of what you said really hits close to home. I couldn't do group yoga classes during my journey, I tried once and it was pretty hilarious. The lady came and tried to correct my position to raise my posterior in downward dog, and I was like please just let me be. I lied there for most of the class. I did find a nice patient yoga teacher who helped improve my breathing and teach me restorative floor stretches I could do on my good days. I was never a super athlete like you were before this, so I imagine this is extra tough for you. Really appreciate your donation!

@RaelanAgle 2 года назад

Dermot, I am so sorry to hear about all of the health challenges you've had to face. I can only imagine what a shock this has been after being in such peak physical condition. I appreciate you taking the time to share a bit of your journey - this is so helpful for the rest of us to see what others are experiencing and to know that we are not alone. And thank you for your kind words and your VERY generous donation!

@michaelasmith163 2 года назад

Thankyou for sharing, do you suggest any particular breath work for cfs ? Thankyou and wishing you well

@liveshiv 2 года назад

Thank you for this Raelan - very important work!

@RaelanAgle 2 года назад

I appreciate it! 💓

@reginawhaley5368 2 года назад

Thank you for all your work. It is hell living with it and most people don't understand.

@jacintacorbett8381 2 года назад

There is hope. Thank you for your research.. For myself it took sustained change in all areas to begin to make progress .. very ill +bedbound for several years, +very slow improvement over years but now a much more active life. Gut health, strict anti inflammatory diet, acupuncture.,yoga, inner work, ayurveda and endless patience +rest.. Relief to see medical proof slowly emerging... Keep up the good work.

@RaelanAgle 2 года назад

❤️❤️❤️

@julieandre5785 2 года назад

Do you know what you did to help get back on track?

@StephdeIcaza 2 года назад

I'm sooo excited! This is AMAZING. Donated!

@RaelanAgle 2 года назад

Thank you SO much Steph!!!

@joelgunner634 2 года назад

Brilliant interview❤️ lots of reason for hope!

@RaelanAgle 2 года назад

💓💓💓

@snic5805 2 года назад

I’m from Ireland too! I feel like I’m the only person here with this illness 😢. Please please please find a treatment!

@emurphy4182 2 года назад

I’m from Clare and I have it too, you’re not alone 👍

@cc-ft8gq 2 года назад

Newly diagnosed. Devastated. Have 10 yrs of journals and video. Just got news 2 weeks ago. Masters Degree to a prisoner in my house. Definitely cannot live like this.

@philmm64 2 года назад

Rest rest rest! Please rest early. It caught early you give yourself a better chance...

@RaelanAgle 2 года назад

I'm so sorry to hear about all of your health challenges, I hope you find your fastest path out of this ❤️

@dan5135 2 года назад

I'm sorry to hear this. Please know that you will recover. Keep watching recovery stories and don't go on forums. Brain training is helpful for many and just generally getting your nervous system out of fight, flight or freeze.

@yuppers1 2 года назад

I'm so sorry. The host mentioned an integrative doctor. Functional medicine doctors can also be helpful. There's a medical group represented on RU-vid- the channel is "Mark Hyman" for example. Functional medicine doctors don't dismiss CFS and have treatment plans based on root cause. They also take a look at your genes.

@bobbiev7062 2 года назад

Wow, what a great way to start my week...such a message of hope for the future! I love the collaborative approach. Thanks to all of you for being our advocates! 🙏

@bobbiev7062 2 года назад

Please let me know how I can contribute...

@RaelanAgle 2 года назад

Hi Bobbie! So nice to hear from you as always and I'm thrilled this video helped you start your week in a good place. There is a link in the video description to donate, I'll post it here as well. Thank you! Every little bit truly does help: bit.ly/3owIc2z

@thesobersocials 2 года назад

Thanks!

@RaelanAgle 2 года назад

Dermot!! Wow, thank you so much for your generosity!!! All donations made to this video will of course go directly to this ME/CFS research ❤️

@noiseordnance 2 года назад

I know women are usually the ones suffering from ME/CFS but I have been dealing with it for the last 11 years (since I returned from Iraq) the VA diagnosed me with fibromyalgia and chronic fatigue syndrome. Unfortunately they have decided that they will give me Lyrica and that's it. It's been a battle and a half, I lost my marriage, my employer harassed me until i quit and I feel like I want to die and all I want is someone to find real answers (not the BS that's been around and proven to make symptoms worse)

@RaelanAgle 2 года назад

so sorry to hear that you are facing this 💛

@julieandre5785 2 года назад

You are not alone, my daughters are 27&23 and have had it for 7/8 years. VERY debilitating!!! Let's hope they can figure it out soon.

@jessicataylor8365 Год назад

I'm so sorry about your marriage. I'm sorry that your wife didn't marry for better or worse. You deserve more support and better help. Luckily for me my husband has come around to understand. this can be an extremely lonesome disease with a lot of judgement and criticism thrown at you. I suppose we have to just keep trying and not give up the fight!

@Jane-pg8jv 2 года назад

Bedankt

@RaelanAgle 2 года назад

Thank you, Janna! All money donated to this video using the '$ Thanks' button will go directly to this ME/CFS research project.

@hysca5 2 года назад

Danke!

@RaelanAgle 2 года назад

Thank you, Lisa! All money donated to this video using the '$ Thanks' button will go directly to this ME/CFS research project.

@freedomofchoicelover3734 2 года назад

Good news story - Aussie 50yr male on Disability diagnosed with CFS / ME....Ive been an sportsperson all my life representing my state and country over 40yrs.....i was diagnosed in 2017...but I suspect my CFS started in my early teens in the 80s on the back of some serious incidents that resulted in chronic PTSD, major depression and anxiety (added to my diagnosis)...although battling this...i suffered all the viruses since that time, Shingles...maybe 7-8 times...once 3yrs in succession, Glandular fevers..lost count, EBV...chicken pox..never ending revolving door, then another incident, STRESS from 4 yrs of court cases resulting from physical incidents as a victim, dicorce, .then the knock out blow..Ross River Virus, knocked me for a 6, bedridden for months, then i kept exercising, my sporting life was successful, but my personal and employment life was a complete mess, never ever holding down a job, alcohol and gambling addictions,.. hopefully a summary but the list in long...anyway...good news !!!......over the years i was on and off Anti-depressants and other medications for pain.....STOP them, no medications.....moved to the country away from the STRESSES, started a new life away from Triggers.....and the best and main thing is I started growing my own organic food as much as i can and started on a predominently PLANT BASED diet.....most of the aches and pains, lethargy has lifted, i can do things around the house, still play sport at a national level, even at 50yrs...i know my limits...my GP couldnt believe the improvement in all my bloods and test results...he said its nearly unheard of for a man my age with this many conditions to have my Liver and Kidney results improve so much in such a short time, use it or lose it...kept exercising and moving even in pain, even tired.....and the best decision I have made...i refuse to take the covid vaccine...seen too many people have side affects and my neighbour died soon after her 2nd dose...no thank you....but you can get over this, not completely, but live a somewhat normal life....but it is permanent...no medications, plant based and use it or lose it...PS...i truly believe that Brain injuries has a major part to play also..Ive had 1000s of head knocks over the years...

@andrewclarke7798 Год назад

People who really care! Thank you guys.

@RaelanAgle Год назад

💓💓💓

@peaceswirl Год назад

Thank you all

@cathycoppin5682 2 года назад

Thank you some hope now thankyou for all you do

@RaelanAgle 2 года назад

❤️❤️❤️

@lorinewcomb4717 2 года назад

I believe Me/Cfs has a huge connection with Eds all types especially those with Mast Cell Activation Disorder which causes high Natural Killer cells. Jen Brea among a lot of my support groups for EDS seem to overlap. It's not a coincidence it's a hypothosis for genetic research. Those with hypermobility type are invalidated bc they don't know the gene yet. However the classic and vascular type are just as common as we are 1 in 3,000. I hope this helps your studies. Xoxo thanks for everything from all of you!

@kellyofthehead Год назад

I've just found h-EDS as my missing link, jigsaw piece if you like. I now believe this is why I have M.E. I'm seeing a private Dr for a diagnosis of heds next month! X

@abstuli1490 Год назад

I agree, there are many indications that this is a Mast Cell problem. Mast cells can release more than 1,000 different types of mediators. Mast cell activation syndrome (MCAS) is a common new, little-known autoimmune disease where mast cells become hypersensitive and release too much and the wrong type of mediators in the wrong place in the body. Symptoms and triggers are also identical to what is seen in ME. MCAS is suspected to be linked to ME/CFS, POTS, IBS, Fibromyalgia, Post-Lyme syndrome, CIRS, IC/BPS, PTSD, GWI, ADHD, Autism Kounis syndrome, Hypermobile EDS and many more. You can get MCAS from Viruses, Bacteria, Mold, Parasites, Heavy metals, Poison, Physical stress, Psychological stress. Look for: Mast Cell Activation Syndrome: An Alert to Psychiatrists The Role of MCAS in Long Covid | With World Leading Specialist Dr Lawrence Afrin Dr. Tina Peers from UK Discusses the Management of Long Haul Syndrome (Long Covid) Mast cell activation symptoms are prevalent in Long-COVID on NCBI Mast Cells and Irritable Bowel Syndrome (IBS) on NCBI Mast Cells, Neuroinflammation and Pain in Fibromyalgia Syndrome on NCBI Mast cell-mediated neuroinflammation may have a role in attention deficit hyperactivity disorder (ADHD) on NCBI Mast cell activation and autism - PubMed on NCBI The relationship between mast cell activation syndrome, postural tachycardia syndrome, and Ehlers-Danlos syndrome on NCBI Post-HPV-Vaccination Mast Cell Activation Syndrome on NCBI Recent advances in our understanding of mast cell activation - or should it be mast cell mediator disorders? on NCBI

@EndersWorlds 2 года назад

Thanks

@EndersWorlds 2 года назад

I wanted to donate the cause but couldn't do so from the UK via that link above, it seems to only let you if you're from USA or Canada? So I'm donating to you Raelan as it's the best I can do!

@RaelanAgle 2 года назад

@@EndersWorlds thank you! We are looking into the issue with international donations, hopefully we can get this resolved soon. Thanks for your efforts with this and all money donated to this video using the '$ Thanks' button will go directly to this research project.

@julieandre5785 2 года назад

Please keep us updated, my daughters desperately need answers to this!! ❤️

@RaelanAgle 2 года назад

Absolutely!! ❤️❤️❤️

@abstuli1490 Год назад

You should take a look at Mast cell activation syndrome (MCAS). There are many indications that ME/CFS is a Mast Cell problem. Mast cells can release more than 1,000 different types of mediators and many of them cause inflammation. Mast cell activation syndrome (MCAS) is a common new, little-known autoimmune disease where mast cells become hypersensitive and release too much and the wrong type of mediators in the wrong place in the body. Symptoms and triggers are also identical to what is seen in ME. MCAS is suspected to be linked to ME/CFS, POTS, IBS, Fibromyalgia, Post-Lyme syndrome, CIRS, IC/BPS, PTSD, GWI, ADHD, Autism Kounis syndrome, Hypermobile EDS and many more. You can get MCAS from Viruses, Bacteria, Mold, Parasites, Heavy metals, Poison, Physical stress, Psychological stress. Look for: Mast Cell Activation Syndrome: An Alert to Psychiatrists The Role of MCAS in Long Covid | With World Leading Specialist Dr Lawrence Afrin Dr. Tina Peers from UK Discusses the Management of Long Haul Syndrome (Long Covid) Mast cell activation symptoms are prevalent in Long-COVID on NCBI Mast Cells and Irritable Bowel Syndrome (IBS) on NCBI Mast Cells, Neuroinflammation and Pain in Fibromyalgia Syndrome on NCBI Mast cell-mediated neuroinflammation may have a role in attention deficit hyperactivity disorder (ADHD) on NCBI Mast cell activation and autism - PubMed on NCBI The relationship between mast cell activation syndrome, postural tachycardia syndrome, and Ehlers-Danlos syndrome on NCBI Post-HPV-Vaccination Mast Cell Activation Syndrome on NCBI Recent advances in our understanding of mast cell activation - or should it be mast cell mediator disorders? on NCBI

@ratfacekick 2 года назад

I love this guy

@RaelanAgle 2 года назад

Me too!!

@ashleylala4293 2 года назад

I have chronic Lyme and coinfections, sky high mycotoxins, chemical toxicities (bromopropane and perchlorate) and thalassemia. It’s amazing how when I went to allopathic Drs, my labs always came back fine with the exception of the thalassemia. Then when I went to a naturopath who knew what tests I actually needed, the results were kind of horrific. It almost seems like the Medical profession in America has been subverted, the Drs have no critical thinking ability. They just match symptoms to drug guides. They don’t know anything about testing for exposures or toxicities. Naturopaths and Functional MDs are light years ahead of them. One thing I notice is that the less food I eat, the better I feel. The problem is that I’m petite to begin with so that’s just not sustainable. It does make me wonder what the hell they are putting in the food. Actually I know because my glyphosate levels were a lot higher than they should be considering I mostly eat organic. We really need to do something about the persistent chemicals and toxins in the environment. If court cases proved that glyphosate causes cancer, why are they still spraying it on our food crops? At the beginning of the pandemic when I saw the government pretending to suddenly care so much about our health and well-being, that set off some serious alarm bells for me. We have a pandemic of autism that is plaguing our precious innocent children with ever increasing prevalence and the government couldn’t care less. But there’s a respiratory disease that is afflicting the elderly and all of a sudden they care? Yeah, right...

@JennySimon206 2 года назад

Great comment. You are right. Doctors are subverted. Healthy people don't make Pharma money. They would rather keep u sick long enough to drain ur bank account then hope u die to make more room on the planet for their yachts. I was onto them before COVID.

@sophiaalila555 2 года назад

Takk!

@RaelanAgle 2 года назад

Thank you, Sophia! All money donated to this video using the '$ Thanks' button will go directly to this ME/CFS research project.

@KWilliams22 2 года назад

Donated to this amazing research ❤

@RaelanAgle 2 года назад

Thank you Keren!!

@billt9031 2 года назад

Find a cure soon. Please !!!!!!!!

@ratfacekick 2 года назад

The triggers vary. The foundation that lowers our stress tolerance is the same (probably 90%+ of the time). Biotoxins from mold and bacteria in water damaged buildings, algae blooms, or lyme. Its called CIRS

@iristerhaar2191 2 года назад

Is it possible to give a link for volunteers in UK please? Thank you

@RaelanAgle 2 года назад

Hi Iris, thanks so much for donating! We are aware that the current link only accepts donations from the US and Canada, however very soon (within the next hour hopefully!) this will be fixed and the link will work for all. Thank you for your patience with this (and your generosity!)

@evanwilliamson3602 2 года назад

I have ME/CFS, as well as high functioning Autism (whatever high functioning looks like lol), Schizophrenia-like symptoms and I have SNP’s in the Vitamin D receptor, MTHFR and PYGM (the gene that encodes an enzyme glycogen phosphorylase which breaks down glycogen). Very interesting. Thanks.

@professormaxtrinity Год назад

I have had undiagnosed CFS for 37 years. I don't know where I am on the scale but I'm one of those people who goes into intermittent remissions that have lasted anywhere from months to years.. I've been in active CFS for the last 3 years with very few breaks. The remissions are so random, I wish I knew how they get triggered. It's easy to see how I get triggered into active CFS. Over do it, or high stress events. As well as a flu or extreme allergies. But the remission can come on suddenly, instantaneously with no intentional change in diet or activity. I would be willing to assist in any way I can if there's something that could be learned from people who experience remissions. Also my younger sister has undiagnosed CFS and she did have Mono in her pre-teens I think. I'm also concerned about my youngest daughters because she definitely has some of the symptoms. It's best to message me on my fb account which is linked in the About section on my channel. Thank you for sharing this information.

@roonbooks1418 2 года назад

There's many types of me/cfs because there are viruses and bacterial infections.HHV6 HHV7 and all the other virus families...then there's lyme and all the other bacterial infections. Then there is the fact that we all have different genes.one common denominator is, I think, we all have immune systems that are stuck or jambed up .

@1corinthians294 2 года назад

Thank you so much for this video!!! Do you know how one gets involved in this kind of research study as a subject? And do they accept international patients? I am from Canada. Thank you!

@RaelanAgle 2 года назад

I'm not sure if there are taking on new participants atm, but I will definitely look into it and get back to you. If you don't mind checking back here in a day or two I will let you know in the comments here 😊

@1corinthians294 2 года назад

@@RaelanAgle thank you!

@RaelanAgle 2 года назад

@@1corinthians294 thanks for your patience with my response - I looked into this and currently they are not taking in new people to the study. I will be sure to let people know if and when they are!

@bombshell-1771 2 года назад

When is the closing date for donations?

@loriengland1422 2 года назад

I have ME CFS and had WGS done two years ago at my own expense. I’d like to offer my dataset to your research.

@elibennett2 2 года назад

What is WGS and did you have a break through with your fatigue ?

@SPIRITWILDCHILD28 2 года назад

Thank you so much for all of your work. Please tell me if anyone else gets chronic fatigue in cycles every few weeks. The range is from 2 weeks to 4 weeks and lasts 3 to 7 days, most of them in bed.

@santella.story.healing 2 года назад

It’s a push n crash cycle. Try to Pace

@aimeelee296 2 года назад

Mine is in cycles too. Roughly one bad week and one ok week.

@rebeccaledam7544 2 года назад

I've had ME for 20 years, and the first 10 years were like that for me. Please please take it easy and pace like someone else mentioned in the comments. I got so much worse because I lived like that, pushed when I had more energy, and therefore crashed in between. If you don't you might end up where I did, getting worse and having extreme fatigue all the time. Take it as a red flag and that you actually can change it around. Do less when you have energy. I'm hoping you'll feel better 💖🙏

@santella.story.healing 2 года назад

@@rebeccaledam7544 how to find your baseline? I really can’t do it. As any small thing makes me worse

@rebeccaledam7544 2 года назад

I'm so sorry to hear that 💖 I'm guessing you might be in stage 1 where all your body needs is rest. It's hard to accept but the sooner you give your body what it needs, the faster you can start doing small things again. But I know how darn difficult it is! I've failed so many times, and still do at times. I think it's a lot about accepting where you're at, and not follow your strong will. There are many people working with ME patients that I find very helpful, like Alex Howard at the Optimum Health Clinic, Toby at CFS Health, Dan Neuffer at ANS Rewire. Have you tried any of that?

@jojogurl83021 2 года назад

I believe this is what I have. It started in March 2020 when COVID-19 hit the world. Then my mom passed away from covid ☹️😞😢 I believe the stress set it off and even the smell of smoke or dryer sheets from neighbors dryer,!! I smoked cigarettes for 40 years and now no longer smoke 👍 however, I never felt this sick when I smoked! I hope we can someday get help, I don't know how much longer I can go through this 🙏☹️

@RaelanAgle 2 года назад

❤️❤️❤️

@jamiicooper8798 Год назад

Is there any updates

@andrewclarke7798 Год назад

PS, paragraph below.! Iv’e been back for the same week summer holiday, and no change ! It wasn’t escaping mould,, only Stress!

@aimeelee296 2 года назад

What happens to the donations if we don’t reach the target of 40,000 for the project?

@HealwithLiz 2 года назад

All the funds will go directly to the researchers regardless. However, I think 40,000 will help fully fund this project with the desired sample size for compelling results, without cutting into other parts of their research budget. Hopefully then the results from this study can generate more interest / funding for larger scale research from the government.

@aimeelee296 2 года назад

Thank you for your reply. Sorry one more question - Is there a closing date for your 40,000 fund raising project?

@NH-lf1wu Год назад

My mate can do 70 laps in the pool in the morning go to the gym etc. Only has a crash every three months or so which only lasts for 1-2 days. Does this mean he has something else because all the documents and journals I've read say this CFS is very debilitating for all who have the disease which is the common thread that links everyone suffering with CFS.

@christinal.suarez1838 9 месяцев назад

❤❤❤

@riceman78 2 года назад

Did you get the $40k raised? I only just saw this now.

@Reilstone78 2 года назад

Who's here from Galway Ireland?

@Bachconcertos Год назад

The brain is in flight or fight rather than rest & digest which is shutting down digestion & other functions & thus casing the symptoms - many types of symptoms. Nervous system damaged.

@forisma 2 года назад

20:50 blood pressure in people with ME/CFS narrows

@EndersWorlds 2 года назад

This was super interesting right?!!

@misstro4542 2 года назад

I am assuming he is referencing the tilt table test that can chart those changes? I wonder if this relates to having a lower blood volume. I recall my doctor at the Cleveland Clinic mentioning something about my blood volume being low, along with huge drops in my bloodpressure. All this medical stuff is overwhelming. I have had this for way too long. I am glad that they are still trying to figure it out. Doctors don't know how to help us.

@forisma 2 года назад

@@misstro4542 I don't think he's talking about a tilt table test or a low blood volume issue. I think he's mentioning purely blood pressure in people with orthostatic intolerance - due to weird blood pressure we get symptoms when being upright.

@misstro4542 2 года назад

@@forisma I wonder because I thought that is what the tilt table test was for. Meaning the tilt table test shows that you have orthostatic intolerance which I believe is also known as Neurally mediated hypotension. All which fall under the category of dysautonomia. Another way of determining if you have orthostatic intolerance is to take the blood pressure while sitting then again after standing. The tilt table test was used in my diagnosis of orthostatic intolerance. For some reason I recall my doctor mentioning a low blood volume in conjunction with the changes in blood pressure that results in orthostatic intolerance.

@forisma 2 года назад

@@misstro4542 yup, I know, I've had a tilt table test myself to determine OI. (I got a huge PEM afterwards by the way, and needed to recover from a very bad state for months and months..) I'm not a doctor and I don't know how they measure pressure exactly but I think they just use a normal BP device? Low blood volume could be related but I'm not sure if there causation.

@mikecarey1990 Год назад

Treating the symptoms is a waste of time. You must find and eliminate the cause if you want to get well. That is what I do., and I am able to test over the phone.

@Saybooboy 2 года назад

Book to sell? Very clever marketing…

@sunseeker2009 2 года назад

Has no one heard of Dr Byron Hyde? :)

@santella.story.healing 2 года назад

All that cfs is is a dysregulated nervous system. Trauma n stress overload. Calm it down and u get better. Yes it can change things in the body but it’s nothing ‘defective’ with the body. Nothing wrong with it.

@rachelk5272 2 года назад

Why does stress overload some people and not others if nothing is wrong with them?

@family-peace-love 2 года назад

Makes sense but once it starts its hard to reverse. Well for me its been.

@patrickhall7884 2 года назад

@@rachelk5272 Too much prolonged stress, or sickness from a virus, etc knocks the ANS out of homeostasis. Once that happens, even small amounts on stress will continue to knock the ANS back and forth between sympathetic and parasympathetic states. Healthy people with an ANS that is in balance can tolerate stress unlike those with ME/CFS

@rachelk5272 2 года назад

@@patrickhall7884 yeah but that still doesn’t explain why too much stress, and/or prolonged stress, and/or sickness from a virus would cause some people to have me/cfs. Do all people with too much stress/prolonged stress/sickness from virus get me/cfs? Do people with more or less of too much stress get it too? Do people with more or less of prolonged stress get me/cfs too?