033 - Updates from the 2024 Stanford ME/CFS Working Group

[@youngerlab]

Here is a great patient-perspective overview of the meetings from HealthRising. It goes into greater detail: www.healthrising.org/blog/2024/09/09/ron-davis_working-group-2024-meeting/ - Jarred Younger

[@carrierobinson8046]

This is a great website

[@mudslinger888]

Has anyone thought to summarize so a typical doctor can get the gist in 60 seconds?

[@dr.nielsen9358]

I just wanted to say how much I appreciate your videos on ME\CFS. It’s really refreshing to see someone so open-minded and genuinely caring about those who suffer from these conditions. Unlike many who seem to sit in their ivory towers with tunnel vision, you show a real commitment to understanding and addressing the complexities of ME and CFS. Your voice is incredibly important in this field, and I’m impressed by your dedication to this vital cause, Thanx for that🙏

[@tinktopia]

Thank you for giving me hope every week, Dr Younger.❤

[@PhillyGuy7575]

Dear Jarred, as someone who is "celebrating" their 40th anniversary of ME/CFS onset, I cannot over-state how much I appreciate the work that you are doing, and the videos you are taking the trouble to put out every week. Your work and your words give me hope that there will be answers (i.e., effective therapy) before I pass from this mortal coil. I want to feel what it is like to be alive again. P.S. I love the idea of a clinical-trial infrastructure that you are proposing. Thank you.

[@timoluetk]

Thank you for the newsflash 💙 can they please just put you in charge of the trial center?

[@youngerlab]

Thanks - that is one option we will be exploring. :-)

[@PCAGA2298]

Thank you Dr. Younger 💙

[@kristinae.7084]

Thank you so much for this update and your insights. As an ME/CFS patient, I totally agree with you that we need a Clinical Research Laboratory dedicated to this, and I agree with you about the patient subtypes. Thank you for being part of this important work and sharing with us to give us hope

[@murtoz5628]

Amazingly hopeful update, thank you! Do you think there's ways these clinical trial centers can work with the severe and very severe?

[@youngerlab]

Definitely. My lab and others are doing remote clinical trials where participants never have to leave their house. It would be important for any large clinical trial center to make trials remote whenever possible. There is more infrastructure support for remote trials because of COVID. There are more at-home monitoring devices, and more companies regularly going to homes to do blood draws and such. - Jarred Younger

[@JenRIT93]

Can't thank you enough for communicating with us on a regular basis

[@HeatherKirklandHowe]

Dr. Younger, I’m so grateful to you for your work and for these very informative and *hopeful* videos to keep patients up to speed on where current research is at. When the frustration overwhelms, I’ll remind myself there is an “explosion” of research. Help is on the way. Thank you. 🙏

[@reece-700]

I agree 100% that there are subgroups in ME/CFS. I am the subgroup that got Ill from EBV, and continue to have reactivations of EBV.

[@CodyWarren-r9c]

I think I also fit into this group. What have you been experiencing?

[@jenniferw1595]

Have you tried any antivirals? Valcyte or valcovir?

[@RobMatch-ev1qx]

EDS, CIRS(Mould), Cranio Cervical Syndromes, ME Septad

[@erinmonahan8245]

Me too. Have you found anything helpful for your symptoms?

[@anontablet6304]

Problem with trials using ME/CFS is the conflation of a neuroimmune disease with a nebulous fatigue disorder. After 30 years researchers are still looking for a single cause of immeasurable fatigue among a wildly heterogeneous group. The discontinuation of the rituxmab study in Norway is an an example of this: they didn't measure virus or cytokine levels - the only marker they followed was fatigue. Huge loss and missed opportunity.

[@Charlie-Oooooo]

Jarred, thank you for keeping us updated with latest general info and good luck with your ongoing research!

[@eddie8489]

We are lucky to have people like you invested in finding an end to immense suffering. It feels unreal with how much negativity and greed there is in the world that people like you and these scientists are actually making a change. Thank you

[@mranster]

I absolutely agree with you about the subgroups. As a patient for over two decades, it's been easy to observe that lots of my fellow patients seem to have very different illnesses than mine. Our symptoms differ, and the things that help us differ, too. The one thing we all have in common is, of course, PEM. I really think that's the defining symptom of the overall illness, whatever other subgroups there are.

[@smartgrandma]

Thank you Dr. Younger for sharing this with us. You have given me a tiny bit of hope. I have had ME/CFS for the past 31 years with the first approx. 15 years a relapse/remit type of period of time before staying permanently relapsed. I've been housebound and recliner/bedbound for the past 10 years. The medical care I have received in the past 10 years has been seldom and often cruel. There are no doctors here in Florida who are willing to treat ME/CFS patients. The only care I have gotten has been for ordinary problems like UTI's, sinus infections, Hypothyroidism, etc. In the ER & hospital, I am normally treated terribly as soon as they see I have severe ME/CFS. I am being forgotten about just like everyone else like me. It's like we're being thrown away. Who is going to help us with this HUGE problem? I haven't even known who to turn to about this because I haven't known who to turn to. PLEASE correct this part of our non-living lives. We need to get access to medical care. If you have made it to the end of this, thank you. I pray you will help with this. Donna Gulyas in Spring Hill, Florida.

[@SylviaDavis-e5u]

Donna, I live in Port Charlotte, Fl. I’ve been suffering with M.E. since the late 1980’s I just turned 81 years old. I could write a book on my nightmare-ish journey, going from Dr to Dr. none of them understand and still don’t. I know what you’re going through. It’s a helluva trip but help is coming. All the best.

[@EIianoMECFS]

@@smartgrandma hey im 23 having mild mecfs for almost 5 years, diagnosed by Dr. Scheibenbogen one year ago. But I recently crashed and never felt that bad before. Is there any advice you can give me? And I respect your 31 years of battling this disease. I can't imagine to life 5 more years with this disease right now. :/

[@FionaEm]

Thanks so much for your thoughts, Jarred 😊 I believe Chris Armstrong from my town of Melbourne Australia was at the meeting too. I agree there's a big gap between what bench researchers know and what clinicians know. I take ME research papers to my GP for her info bc doctors are so poorly informed. Who would fund ME clinical research centres? OMF? NIH? I imagine the costs would be considerable.

[@youngerlab]

Yep he was - and giving a presentation even though it was around 2am his time. Regarding the trial centers, there are going to be meetings about ME/CFS trials in the next couple of weeks. It is possible that NIH and other government institutes could fund the center. Another approach would be to secure large donors who are really invested in finding ME/CFS treatments. I'm working on what the budget would look like - it would be expensive, but not outrageous. I may do a video specifically on a trial center soon and give more specifics about costs and what it would do. - Jarred Younger

[@phatbastard360]

We definitely need clinical trial centers for ME, especially since we need different approaches if we wish to include patients with Severe ME

[@tunn3l_personal]

Just hearing "there was an explosion of me/cfs research" is a blessing! I'm currently working a project to create me/cfs stickers with a qr code to educate people about it and donate to science. I hope to make a small impact in my home town (and wherever I travel).

[@nancysmith8626]

This is a wonderful idea, good for you!

[@brobinson8614]

Brilliant. Especially mention PEM and if you say “PEM is also caused by mental or emotional exertion” please say “due to neurones being quickly depleted of energy” Because otherwise the public just think it’s mental illness and dismiss the disease

[@prashanthb6521]

Thank you sir for keeping us updated.

[@youngerlab]

Sure thing. Thanks for the note! - Jarred Younger

[@handyhacker11]

The first 5 minutes so far have been me constantly saying "hell yea" to everything you're saying 😂 Fr that is so good to hear. This condition really is a giant middle finger in so many ways to so many people. Especially those affected.

[@roxyiconoclast]

Thanks very much for the update. Could you do a video on what subgroups you see as being most likely to emerge from further research?

[@youngerlab]

It is a good idea. I have a large dataset that can identify several subgroups. I need to do final analyses and see what is revealed. - Jarred Younger

[@Nill2323-l8s]

Thanks so much, Jarred. Very pleased to hear you were invited along

[@RuthzacharyZachary]

Thank you for your letting us know whats going on. The increased interest.and collaborative spirit is very encouraging. I have mecfs almost 10 yrs. Im.trying to feel.optimistic. i appreciate your intelligence and your focus.

[@usefulstuff13]

This is soooooo helpful. Subgroups and translational research - yes! I've been saying this over and over. Brilliant to have some hope that more work is happening and more specialisms are involved. In a hopeless void, a little hope goes a long way.

[@JustME-ft4di]

My organic acids tests are fucked, I’m not absorbing proteins, my methylation is fucked, 24 hour urine histamine showed MCAS etc etc. the tests are out there it’s just that Drs don’t do them. Jonathan Kerr did genetic subtyping decades ago and everyone ignored it.

[@craigbarlow8204]

Identifying Subgroups is critical imho. My me/cfs is different to a lot of other people and vice versa

[@ProfessorBeautiful]

Excellent observation about the challenges of clinical trials when the best way to "split" (versus "lumping") patient subgroups is not yet known

[@MECFSDiagnosticBiomarkers]

Thank you for this update. "ME/CFS research used to be like a turtle, and now it's a Gazelle" are the most encouraging words to hear from anyone. If you want to enable Clinical trials for ME/CFS - you need to push the NIH to fund grants for ME/CFS diagnostic tests. To run clinical trials properly you need a ME/CFS diagnostic blood test and an objective marker for endpoint. The different ME/CFS subgroups need to be able to be identified by diagnostic blood tests in order to make clinical trials effective and so that no patient is left behind. We can't ignore that right now and waste millions of dollars in resources we don't have yet. As a patient, I think we need to delay clinical trials until we can get a ME/CFS diagnostic blood test approved by the FDA. In 2012, the FDA voted down Ampligen because there is no diagnostic blood test for ME/CFS. Yes, that's unfair since the FDA hands out treatments like candy for other diseases without diagnostic blood tests. But we live in this reality, and we need to deal with that reality in order to beat the dark forces that constantly work against us at every government table. And you can bet that if a ME/CFS diagnostic test gets approved by the FDA - because they are boxed into doing so by using a 2-Day CPET to verify every single patient - what will happen - is that the FDA will not approve the treatment because there's no marker for recovery. They are after all the experts at moving those goalposts to please Swiss Re and Unum. But one problem at a time. Fund and find a ME/CFS Diagnostic blood test first. Then worry about clinical trials. We have too few resources, and having a diagnostic blood test will only increase them. Do the first thing first. Please.

[@brendabrenner2891]

Truism! Richest country w poorest med system, greed + power rule.. ampligen failed in long cov trials🙏❤️

[@youngerlab]

Thanks for that perspective. I think roughly 80% of ME/CFS researchers are focused on biomarkers - especially those working on the cellular/molecular techniques. There are very few clinical trials. So, I think most researchers agree with you. Without a clear pathological mechanism, the risk of the trials failing is high - and we don't want to waste the time and money. But we can run pilot trials in parallel with the biomarker work that doesn't take up too many resources. It is true there are many limitations with running pilot trials (low sample size and statistical sensitivity, low generalizability, inability to explore baseline predictors, etc.) which is probably why most the researchers haven't progressed to clinical studies. - Jarred Younger

[@luciendorman9105]

Just wanted to say your logic and strategy for the path forward is correct. Your role to enable clinical trials rapidly is EXACTLY what we need. There are certain subgroups for sure with differing severity of illness plus common comorbid conditions. Another big thing is some of us are extremely medicine sensitive. So there’s another hurdle there. Or potential subgroup. Anyway, keep fighting for us. We need you now more than ever ❤️ Love ME/CFS severe patients who are bedbound with little to no help from the outside world. X

[@FionaC1]

This is very exciting! I hope the momentum can be sustained and that your clinical trial centres idea becomes a reality. It really feels like things are starting to happen 👍🏻

[@carolynwestwood6258]

Thank you for sharing this info, and for the time and effort you put into ME/CFS research. 🙏

[@leslietascoff9784]

There are millions of us that are stuck in bed. We should be able to have thousands of volunteers so that there can be plenty of subgroups for clinical trials. I’ve tried a lot of the potential treatments (LDN, methylene blue, ivermectin, Hydroxychloroquine, sirolimus, peptide injections, liposomal injections) and nothing has helped so far. A few of these things are amazing for pain.

[@leslietascoff9784]

Thank you for everything you are doing to help. It gives me hope to listen to your updates! ❤

[@hrdcpy]

When you tried LDN did you take capsules, tablets or oral suspension? I took tablets for my first month from 1.5mg to 3mg. Now in my second month (after missing a week of LDN), I'm dosing 1ml/3mg liquid LDN and there's a pleasant sensation in my head that wasn't there before. It's not there everyday, but I feel like the fact that it's liquid dose has something to do with its absorption. ✌️🖖

[@leslietascoff9784]

I’ve been taking LDN compounded capsules for 5 years. I started at 0.5 mg and slowly increased to 3.5 mg. My pain returned when I tried 4.0 mg. I have made solutions with tablets so that I could do smaller increases. My spine pain has been getting worse and my LDN doc had me go to 2.5 mg twice a day after a year. After 4 years she suggested 3.5 mg three times a day. It’s fantastic for pain but I haven’t had any increase in energy. I’ve been in bed for 5 years except for appointments. There are some people that have had an increase in mental clarity and energy from LDN. Some people don’t have any pain relief. Some have weight loss and some have weight gain. It’s very unique. I didn’t notice a difference in the effectiveness of the LDN solution and the compounded capsules. If I had an Rx for the 50 or 100 mg tablets I could make a years worth of solution for about $25 with a GoodRx coupon. My doc won’t prescribe the full strength naltrexne.

[@ragnhildb4144]

Thank you so much for this update! It gives hope. Thank you for the other updates too! I appreciate it so much! Ragnhild Birkeland, Norway

[@rdklkje13]

Thank you! No need to apologise, your commitment to sharing relevant research with the public is outstanding. I'm rather new to ME/CFS in some ways, but in part thanks to your videos I've recently realised that I may have ME. For the decade+ that I've had issues, I've ascribed the various symptoms to other things, while dismissing ME for myself because I thought it meant bedridden with chronic pain. Turns out I was wrong about that. Having discovered the ICC now, much to my surprise it seems I might have atypical moderate ME since, thankfully, I don't have much pain. So yeah, can only support your point about the importance of subgroups and proper differentiation, also with other similar conditions. That's what I'm trying to get my head around now, before going to my GP again soon with the suggestion we look into this. Thanks to your video about initial testing I already have a good idea where to start when I go there!

[@guidodenbroeder935]

Get tested for ME. A disease 'ME/CFS' doesn't exist.

[@youngerlab]

Thanks! I hope you are able to get to bottom of the issues! - Jarred Younger

[@rdklkje13]

@@youngerlab Thank you! GP visit wasn't a great start. She's normally pretty good and open-minded, but turns out the ME situation in the country I live in is a hot mess still. I learned that there's no point asking for the tests you recommeded because my GP can't even request those tests and we don't have independent labs here. Good thing was I happened to also have a yearly check-up scheduled with a cardiologist, and instead of asking for ME-related tests I just talked about neuroinflammatory/endocrine conditions in a rather generalised way. And then asked for the cardio tests recommended for ME in the ICC. Step by step.

[@rdklkje13]

@@guidodenbroeder935 OMG, I spent quite some time reading stuff on your website after my GP visit! I even read the court case uitspraak. As a start, I asked my GP for the 8 simple blood tests recommended by Dr Younger to assess systemic inflammatory activity. But she said she can't request them in our health care system, except for one or two. Do you know how to access those tests here? I actually wanted to ask you why you don't have any references to the International Consensus Criteria re ME diagnosis on the website (or in the court documents, although maybe you did have that even though the _uitspraak_ just mentioned a book reference). They seem to align well with what you're trying to do. As for nomenclature, I haven't yet found a video here where Dr Younger explains why he talks about ME/CFS rather than ME as per the ICC. I suspect this may have to do with how funding works in the US, but that's a guess. Could also be that the ICC aren't as consensus-based as I think they are rn.

[@Helen-pv4wy]

Thankyou so much for another inspiring video, and thankyou for all your hard work you superstar 🎉 H

[@marcelguldemond2523]

Thanks so much again! Your videos remind me that there are a lot of smart people looking into CFS and LC now. Knowing this makes it easier to hang in there. Also, really great to hear that CFS subgroups are now part of the conversation. Much like the subgroups being identified with LC.

[@2hff728]

Wow, thank you for this very hopeful update. May clinical trial centers be funded ASAP

[@auroraaustralis5470]

💓 thank you helpful excruciatingly painful

[@EndersWorlds]

This sounds spot on. Particularly about the sub groups - I've been saying this for ages, all research not just treatment trials should be splitting patients into as many subgroup as possible until we get a clear picture of what is relevant and identify properly identifiable consistent subgroups for treatments. I just heard a webinar here in the UK where researchers were discussing the clinical trial thing and they had on someone from the multiple sclerosis trial World talking about their study design and the goal was to see if we could do the same in ME research....... Study design can't remember what it was called something to do with octupus lol. But is trial design that is ongoing, basically set up and it just continues onwards and you add drugs into it as and when the evidence suggests appropriate along the way..... So you don't have to start a whole new treatment trial design every time you want to test something..... It's just continuous once approval is made. I'm a lay person but I thought this sounded amazing, really saving huge amounts of time, and being able to test drugs in tandem for alone and add things in over many many years..... Apparently it's worked very well for multiple sclerosis drugs. Wouldn't that be amazing for ME? Don't know how you'd apply it to different sub groups though.... But there are a couple of sub groups in MS so?? Anyway this is all great to hear, having just become very severe in the past month thanks to a virus, from severe I started kinda feeling like there's a clock ticking. Like I'm in a race..... Will science find answers before I get so sick I can't tolerate any medications or become a vegetable or worse. Such a weird feeling. Can't get my head around where I'm at.

[@youngerlab]

Thanks! I see the UK Octopus trial. I'll try to chat with the PI at University College London and see how they are doing things. - Jarred Younger

[@themupsmuppet]

Hopefully we'll be turned from turtles into gazelles then soon! Such a good point about the subgroups and trials. Always been frustrated by for instance the Rituximab-one; instead of finding out why some responded and some didn't, it was just disregarded as a whole 🙄

[@oliviajenkinson7281]

Thank you so much for helping us and giving us hope! ❤

[@PipStroud-b7g]

Thank you SO much Jared for all your work, energy, advocacy and expertise to help those of us battling this life stealing disease.

[@sleeverobot]

Thanks Jarred, this is very encouraging.

[@mudslinger888]

I would pray that someday soon there is a very concise video or article I can give my doctors. Your updates are interesting but no doctor will watch these rambling reports. Where is the summary? ME has a stigma in part because to this day there is nothing my doctor can find on how to confirm it. Beyond frustrating..

[@Shelleysnail]

It’s awesome to hear that ME research has turned from a turtle ( I prefer a snail 🐌 ) into a gazelle. Thank you for your continual updates, I don’t think I’ve seen you so animated and positive before. It gives me great hope.

[@guidodenbroeder935]

'ME/CFS' research is not ME research.

[@youngerlab]

Thanks! Yes it was very good to see so much new work being done - inspirational! - Jarred Younger

[@nanallen1]

Old biologist here, led large, speaker support group at local hospital 13 years after being bed ridden 1 year. Think many/ most have structural issues with poor CSF flow? Possible off midline fusion of the filum ( 10/11% of pop) and maybe related malrotation of gut - can have huge effects on inflammation and immune function. Oh my. Published research available - will share Via email when I get the energy.

[@PCMenten]

It seems like there is a need for the application of AI to the ME/CFS matter. AI has been important in the field of medical imaging. Perhaps AI can help make sense of the data coming from the ME/CFS research.

[@hrdcpy]

One application that could be interesting is scraping the Internet's comments sections to get a broader grasp on the language used to describe symptoms from a patient's perspective and attempt to understand what we all have in common. I'm a mTBI survivor with Post Concussion Syndrome and found my way into the ME/CFS community because of my symptoms. While I don't feel as if I 100% belong. I'm also oblivious to the early stages of ME/CFS where it seems like people can gradually become less physically mobile and have intense PEM. ✌️

[@youngerlab]

You're right. One group has made significant headway on using AI to synthesize data from many different levels of biological organization. Their results were impressive. I wish I could talk about it, but as soon as they release something publicly, I will talk about it here. - Jarred Younger

[@user-wk3rt4gu1w]

Thank you so much for spreading hope !

[@thejoydecision724]

I appreciate the patient-focused approach so many in the field have. And so often I hear the researchers talking about the end-goal of treatment or cure. That’s exactly what is importantly to me. Thank you. I know that the information-sharing and patient-focus is a decision made for us sometimes at the expense of optimising your careers.

[@sophiamcl]

Speaking of subgroups, has any research been done regarding onset/severity and hormones? What I'm thinking is since the illness is more prevalent in women, there could be a significant subgroup who develop ME more easily because of the body's hormone levels. I had to undergo a hysterectomy a couple of years into my first "collapse". I had up to that point regained some of my function, but looking back now, the hysterectomy was a "death knell" for at least a partial recovery. From that point on I got steadily worse until being housebound today. I interpret it as a result of the severe disruption of my HPG-axis.

[@BanzoUnchained]

Encouraging. Thanks for your report!

[@slovokia]

As far as ME/CFS clinical trial infrastructure is concerned, it is usually the case that major teaching hospitals fulfill that role for many illnesses. Unfortunately currently it seems that few practicing physicians in such instritutioms have any interest in ME/CFS and helping ME/CFS patients. Stanford is a good example - while it has a core group of people on the research side, few physicians participate with the ME/CFS clinic. There appears to be little institutional backing for making meaningful investments in creating a significant clinical infrastructure.

[@CarolMoser-f8w]

You can’t even get the ME diagnosis unless you can travel to Stanford or Los Angeles.

[@ludoludo4334]

thanks for the update, as a me cfs patient i have no idea about what happens on the research field apart from your videos.

[@youngerlab]

Happy to do it. There is really a lot to talk about now - I wish I was able to do more than one per week. I'm glad you are finding them useful! - Jarred Younger

[@nickdriver8337]

Reading all your recent replies to the comments has given me even more hope than the video. Thank you for being so invested in this, we are lucky to have you on our side.

[@illuminationgoddess3]

Thanks for the update Jarred.

[@melissanreynolds]

Do you think FM and ME/CFS will be subsets of the same condition?

[@mec4142]

Let’s hope they’re taking in that many of us have mold exposure, lyme and co infections - things the medical community dig their heels in and say isn’t an issue. It’s a big damn issue. Mold and Lyme left me with pernicious anemia, iron deficiency anemia, copper anemia and scurvy and not one doctor figured that out for me. Not one. Losing the ability to walk and having daily dementia episodes and all I got was “your labs look great”. Luckily not being able to work did leave me time to study medicine. How is it I didn’t go to school for medicine but can critically think and link things and fixed things that our highly educated people refused to see or help. Cardiologist, endocrinologist, hematologist, GP, functionals and not one had an iota of help to offer.

[@trulleyamazing3]

ditto. at this point, i think treating MECFS will be easier than getting the medical establishment to change how they approach patients, the body in general, & how they review, or don’t review, *their own research* 🙃

[@trulleyamazing3]

maybe they’d have better luck if they actually talked to people like us who’ve had to heal ourselves & have had to basically earn, but not earn, a medical degree just to have some understanding of what’s going on in our bodies bc medical professionals are expensive & useless at this point. 😅 the egos in these industries are far too big.

[@mec4142]

@@trulleyamazing3 I can read some labs better than a doctor at this point. I see clues to many things because I studied. They look at if the lab is in range (don’t even get me started on that mess) and say all is well to your face while you’re sitting there completely broke down begging for help. But hey my labs are “normal”. Great. So why can’t I function 🤬

[@nancyharkness5999]

I’ve wondered if gradual onset, excessive thirst & dry eyes (almost like Sjogrens), and sore throat as first symptom of PEM would be subgroup indicators. Also, wondering why ESR rate of 2 isn’t more of a diagnostic? Also I’d like to see some of the more expensive treatments that have shown promise but which have fallen out due to lack of availability revisited by the clinical trial center, I believe these might include what was used to treat incline village, immunoglobulin g and a, etc.

[@brobinson8614]

Go to ‘Long Covid Podcast’ by Jackie Baxter 19 JUL. 139 - Patrick Ussher & Peter Deen - Excessive Thirst in ME/CFS & Long Covid As there’s a guest who worked out how to reduce excessive thirst and he improved from the method

[@nancyharkness5999]

Wow, thank you!

[@penelopejanemcmillan8141]

Many years ago I was in a large unpublished study that found several genetic groups of ME patients. One of the researchers was a friend who shared that I fell into the genetic group they broadly described as "prone to be allergic", which was also the group most likely to be severely ill. We have lost so much ground through journals being unwilling to publish in the past.

[@susanphoenix74]

Hopeful news, thanks

[@carrierobinson8046]

Good to hear about the collaboration and the increased me/CFS research. I just posted about how sad it was that researchers don't usually collaborate, something I've been sad about for years. Collaboration is necessary between humans, it just is. I wonder if Long COVID plays a part in the research stepping up since we with me/CFS have been mostly ignored but now there's interest in Long COVID.

[@AliciaButcherEhrhardt]

WHY is the automatic transcript function turned OFF? I can't possibly watch and parse this - I have ME/CFS of 35 year's standing and my brain doesn't do audio or videos. Can you turn it on? Thank you.

[@marsZpants]

Alicia, if the cc is helpful, that's working for me when i have it activated. (I know sometimes KZbin takes a bit to transcribe after upload, though!)

[@AliciaButcherEhrhardt]

@@marsZpants Thanks. Kind of you. But no. Moving things on the screen drive me crazy - I NEVER watch KZbin videos of anything with content. Can't parse that FAST - and the content of video and audio presentations is ridiculously low - so I'm constantly trying to find the nugget in the haystack. I don't need BOTH someone talking at me AND captions to try to keep up with - that's twice as hard. I want text to read at my own pace. At least the automatic transcripts are better than nothing (badly formatted, badly parsed, full of errors), but I can move another window over the moving talking heads, and try to just read the automatic transcript - if it's there. Maybe I'll try again in a couple of days if you're right about KZbin transcripts being slow. My guess is that they were turned off (possibly due to low quality?), but I could be wrong. Thanks for trying.

[@rdklkje13]

@@AliciaButcherEhrhardt There'a a transcript now, in case you haven't seen it. Also, maybe turning off the sound while reading the CC might work somewhat in cases where there's no transcript? Although there'd still be moving stuff to look at, of course.

[@rdklkje13]

@@AliciaButcherEhrhardt At reduced playing speed maybe? But yeah, totally get why transcripts may be preferable although for me it's different, the concentration required to read is more draining, especially with all the errors.

[@AliciaButcherEhrhardt]

@@rdklkje13 NO there is NOT. It's supposed to be on the drop-down menu under the three dots - and all that says is Report - and that was NOT a transcript.

[@BanzoUnchained]

Subgroups make sense to me.

[@Chipncrem]

So glad ppl r collaborating. It’s horrible living with ME CFS and seeing how clueless drs r.

[@carrierobinson8046]

Definitely there are subgroups. My sister was the possible EBV subgroup and her illness looks different from mine. A toxins and possibly a genetic error in the inability to detox subgroup. A viruses and/or lyme subgroup probably, a genetic errors in ability to assimilate or convert nutrients one maybe. Then there appears to be an overactive limbic system one. Maybe there's a trauma/and or extreme stress one and one involving the immune system in a different way. Maybe theres a Perfect Storm subgroup that combines a bunch of things.

[@linerobichaud6022]

Thank you for sharing this update. I am looking forward to hearing about the treatments in the next few years. I would love to participate in any clinical trials - if eligible.

[@nino2121]

My comment was removed. I am taking high dose B1. Changed my life. I stopped it for a period, symptoms returned but no where near as severe. Please keep this comment up as it could help others. Good luck everyone.

[@Angela-zj5sx]

Thank you for sharing that! I may try it, I do notice a big difference with the B vitamins when I don't have for a few days symptoms get worse.

[@sebek12345]

What dosage and brand? Thanks so much!

[@brobinson8614]

@@sebek12345The website Health Rising did a comprehensive article on B1 for ME/CFS, from memory it had study links and patient recoveries etc. read that as is very good. I can’t post the link here but just go to the website and type B1 into the search bar

[@anitaenander9743]

Thanks, Dr. Younger, for the summary. Re: subsets. One possibility is that for each individual the specific originating infectious cause + the viruses that can be reactivated + the epigenetic uniqueness of an individual + the complement of co-morbid disorders in that person may all contribute to the “subgroup.” Therefore, it may require deep lab investigation plus trial-and-error (to some degree) to find the combination of substances that address the unique complement of factors keeping an individual “sick.” The separate and maybe longer-term solution is how to flip the switch back to “health” (as Ron Davis has suggested is the magic bullet).

[@JustdriftingbyBeth]

Thank you for sgaring and for all that you are doing

[@ginacarpenter1156]

Thank you for your encouraging updates 🥰

[@baileystruss7319]

Any progress on the itaconate shunt and metabolic trap hypotheses?

[@brobinson8614]

Yes Ron Davis’s wife tweeted out “2 patients greatly improved on JAK STAT1 inhibitors” Those drugs were predicted to work in that hypothesis One was 3 days (he’s cured on Filgotinib) the other was on upadacitinib. Upadacitinib took 2 months to greatly improve, Both stopped and remain well. I found a 3rd patient cured in a month of taking Filgotinib

[@geoffreylane5811]

Is anyone running an ME/CFS patient registry for clinical and other trials that you know of?

[@riceman78]

You guys are awesome

[@francescachristy8761]

How do you access the transcript? Mentioned on FB.

[@themupsmuppet]

If you click on the description above then you see 'show transcript'.

[@melissawalker2443]

I’m also of the opinion that research needs to account for the different patient “types.” We LC & MECFS patients clearly experience different subsets of symptoms. Here’s a question for you - I’ll bet you are aware what the NIH Intramural Omics studies revealed about analyzing data separated by gender. Was this concept also discussed? It makes me wonder if LC w/ MECFS would then be two groups (male & female)?

[@Rene-uz3eb]

Demyelination has to be because of chronic inflammation, which is known to cause it because myelination requires maintenance which is suspended in inflammation. I don't buy the autoimmune hypothesis without proof of even antibodies. So that leaves neurotoxins like constant exposire to lead (very common), or chronic infection ie NCC.

[@reece-700]

Also from EBV

[@Rene-uz3eb]

@@reece-700 it might be a contributing factor, but everyone has it so I doubt it's causal

[@alias701]

Without proof of antibodies? There is already, at least for a subgroup(s)

[@Rene-uz3eb]

@@alias701 it seems the antibodies are a response to ongoing inflammation, not the cause thereof. Sure it's possible in the subgroup it's different, but equally you could argue that no it's just a delayed and aggravating response to what's actually causing inflammation. Chronic inflammations would cause autoantibodies eventually.

[@Rene-uz3eb]

@@reece-700 you could argue that neurotoxins like lead are everywhere too. So maybe they are just another contributing factor too. I'm sticking with NCC then (Neurocysticercosis). It checks every single checkbox. Very much chronic, incidence matches (where it is recognized), ms practically nonexistent in Islamic countries other than travel, and ms more frequent at high latitudes (less anti parasitic vitamin D). Btw I suspect most autoimmune diseases are caused by chronic inflammation from parasites. I also suspect this was common knowledge a few decades ago until some psychos decided lets erase that idea by claiming the opposite, that helminths could be a treatment against autoimmunity, now that's all you get in literature searches. Yep: Anti-Nuclear Antibodies Associated with Schistosomiasis and Anti-Schistosomal Antibodies Associated with Sle, 1994. This is how lupus autoimmune disease is diagnosed today, based on those antibodies. Thymocytotoxic autoantibodies found in mice infected with Schistosoma japonicum, 1981 "Levels of serum anti-tubulin antibody were significantly elevated in 67% of patients with visceral leishmaniasis, in 60% of patients with cutaneous leishmaniasis, in 89% of patients with onchocerciasis, in 100% of patients with schistosomiasis, and in 94% of patients with leprosy" "Elevated levels of serum anti-tubulin antibodies have been reported to be associated with Graves' disease and Hashimoto's thyroiditis (Rousset et al., 1983), with demyelinating disease (Newcombe et al., 1985), with infectious mononucleosis (Mead et al., 1980)and with alcoholic liver disease(Kurki& Virtanen,1984). These quantitative increases are thought to be due to autoimmune reactions to the patient's own tublin" From Antibodies to [human] tubulin in patients with parasitic infections, 1987

[@RuthzacharyZachary]

Im more than ready to participate in a clinical trial or trials. Btw, as a 5 yr old i participated in the Salk vaccine trials.

[@melinda_is_complex]

Ready to participate in clinical trials!

[@Annapurna818]

Me too

[@jeffmccarren5129]

Fully agree clinical trials and subgroups are badly needed!! We need to try various drugs that already exist.

[@youngerlab]

I want to go to each of the researchers and ask, based on everything they have discovered so far, what is the one treatment they would most like to see tested. I think we could prioritize the top 20 or so and then run small but sensitive trials to see if any look promising. - Jarred Younger

[@BodymasterMcGinty]

​@youngerlab this seems like a very good idea. Is there anything we as patients can do to help facilitate this?

[@temering7809]

Thank you for your ongoing dedication, truly - however last year we stopped all our long-standing donations to ME/CFS research because we have heard these exact same things - EXACT SAME THINGS - for decades - DECADES - with no meaningful translational results or relief for patients. All these "insights" you speak of? These are things the patient community has been trying to tell all of you all along. On top of that, it's a lot of word salad. Meanwhile, patients' lives leak away in pain and loss. Dude. Enough.

[@nancysmith8626]

Yes, the desperation and despair after decades of no answers and no relief (on the contrary, getting dismissed and gaslit instead) is real.

[@EIianoMECFS]

Even though that's true, objectively, there's so much more research being done. Now is the worst time to stop donating and stop believing

[@ruthfeiertag]

I just discovered your channel; thank you for this summary. In clinical trials, how would researchers identify and account for people who fall into more than one sub-group? What about people with co-morbidities?

[@Annapurna818]

Decades of misdiagnosis and pain and it still continues.😢

[@johnathanabrams8434]

What was the last treatment discovered for ME CFS?

[@nowhereman8374]

Dr Younger, is ME/CFS considered a disease of mitochondrial dysfunction? If it is, how is it distinguished from other mitochondrial dysfunctional diseases like diabetes?

[@youngerlab]

Several groups are tackling the mitochondria angle and have some really interesting initial results. It is a good point about distinguishing from other mitochondrial disorders. I think some autoimmune disorders (e.g., rheumatoid arthritis and multiple sclerosis) could fit in that camp as well. I don't think they are at the point yet of clearly contrasting ME/CFS from other chronic diseases. - Jarred Younger

[@johnnyrebellion8672]

I'm 62 now. I wonder if I should get my hopes up.

[@Crowmother13]

Was Dr Bonilla ( Stanford) involved with this?

[@Zigzag99999]

thank you!!!

[@gforgeorge7]

Do you think the same issue with subgroups and clinical trials exists for fibromyalgia as well? That’s my take away after following the research for a decade.

[@brobinson8614]

There will be, but there’s also a lot in common with subgroups too. So the differences could be just the downstream effects of a single cause, like a problem in cellular metabolism upstream causes malfunctions that cascade to cause different more noticeable problems down stream, making the disease look like different subgroups. But it could also be different causes of a disease, from viral to autoimmune to maybe a closed loop that locked on a disease. I think I suffer from a locked on innate immune response that needs the switch turned off. But it’s more likely there’s different activation of these diseases as Jarred said there seems to be different drugs that treat some in a group but not all. And some trials people have had good outcomes. Just not enough to make it beyond placebo. So no more funding when really there could have been a breakthrough treatment for that subgroup. So is really important we are able to identify different phenotypes with their own biomarker As for biomarkers looks like there maybe some in the form of mRNAs The journal publication -- IJMS | Free Full-Text | Identifying microRNAs Possibly Implicated in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia: A Review --- Is worth reading. Patients share numerous mRNAs that are unique to fibromyalgia and ME/CFS. Even some crossover between the two diseases but not in healthy controls

[@rdklkje13]

@@brobinson8614 Thank you!

[@me-cfs-strategiesforhealing]

Klaus Wirth's Mitodicure drug is what needs to happen. It could stop PEM.

[@jewelleryaddict]

Have patiently waited since diagnosis in 1985 at 35. Have kept abreast of few studies thru the years before internet. Since have got 2 college degree’s and started and facilitated a support group at hospital for 23 years. I have my own study published in 2000 in Journal of Musculoskeletal Pain. In all this time I have seen so many wasted studies that’s why we are so far behind. One study used a hairbrush and ran it down a arm to gauge the number corresponding to the pain number, what a waste. We need real medical studies not studies like that. We need Real trials on drugs and supplements. Seemed at first studies were done just to get study money busy money but studies did not lend any real useful results. Only hope now we can have real studies with doctors and clinicians that are serious to find a cause or cure. Enough different hypothesis about how and real studies promoting real help.

[@kathleendoherty9909]

no kidding, doctors keep making money and doing absolutely nothing to help us

[@KidCity1985]

Please hold them accountable for real studies. Check for falsified data. It is natural to want to be the hero.

[@youngerlab]

Always. That is a skill I teach my research students -- how to sniff out red flags in scientific papers. Even though we don't usually have access to the raw data, there are some telltale signs in the results for those who have been reading them for a long time. - Jarred Younger

[@KidCity1985]

@@youngerlab thank you.

[@Bembreeb]

Hoping clinical trials will work a way around to include those of us who are house and boundbound. The burden on us and our families is greatest but we see the littlest acknowledgement despite facing the hugest threat from ignorance. Surely our data would provide the clearest indications of what’s going so severely wrong

[@eddie8489]

There’s 2 maybe 3 very obvious subgroups. Viral induced, collagen abnormality(EDS), and likely smooth muscle dysfunction is a 3rd subgroup as I do not have EDS but do have Smooth muscle mutation limiting my smooth muscle contractility and I have POTS/Dysautonomia and ME/CSF

[@willzsportscards]

interesting. do you have a link/info getting into all this? the eds and smooth muscle stuff is new to me.

[@eddie8489]

@@willzsportscards 60% of people with severe me cfs have confirmed Ehler Danlos and a large portion may have smooth muscle mutations but may not be aware of it since it isn’t tested for

[@angelbryan98]

So, the future is looking bright? There is hope after all?

[@guidodenbroeder935]

Hardly. Our habitat on Earth is about to collapse. Everything else is trivial in comparison.

[@angelbryan98]

@@guidodenbroeder935 ME/CFS is living death. Everything else is trivial in comparison.

[@guidodenbroeder935]

@@angelbryan98 Many people diagnosed as 'ME/CFS' still hold a job. I have ME, I am housebound and often bedbound. Now talk to the children of Gaza. Then go to South Sudan, and you will forget all of the before.

[@2hff728]

It is. We are close to a breakthrough. Younger estimates 2-3 years before we see some big ones

[@EIianoMECFS]

​@@guidodenbroeder935this isn't a competition of what's worse, this channel isn't about gaza

[@sarahmcdonald7]

But for all those who are very severe who can‘t take part of cöinical trials that menas suffering another 10-15 years in their beds.

[@verenasu2037]

Mind-body approaches have helped many severe affected people to be in complete remission. Im in complete remission after 16 years, the main thing i did was vagus nerve exercises for 9 months (was moderate affected)

[@dprice81]

​@@verenasu2037 you got one of those vagus nerve tens unit and that's what helped you get better,?

[@danielmeixner7125]

​@@verenasu2037sounds like bs

[@verenasu2037]

​@@dprice81 no I did not use a device, devices dont work well for most people. Its like a massage chair vs a massage, cant compare. I do them "manually" so by certain movements with my eye that then stimulate the nerves behind my eyes and they are linked to my vagus nerve at the ear area.

[@mattx6098]

Yeah but... where is the money that is going to fund all of this coming from? Thin air?

[@marsZpants]

I appreciate these updates and summaries, even when short, even when it may feel like there's no 'news' to share.

[@CamAustralia001]

concur √

[@nickdriver8337]

The two main "subgroups" are ME and "CFS" ... then there's an almost infinite number of subgroups for "CFS".

[@alexedgar6539]

I'm in almost complete remission via carnivore diet. Still vulnerable to unpaced excessive work and cheat days. But almost completely able to function. 4 years of remission already 🎉🎉🎉