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

The annual Stanford ME/CFS Working Group meeting concluded last week. In this meeting, researchers were able to share their preliminary results before public release. In this video, I give my observations on the state of the science. - Jarred Younger

[dr.nielsen]

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.❤

[timoluetk]

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

[PhillyGuy]

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.

[kristinae.]

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 <3

[reece-]

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.

[eddie]

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.

[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. 🙏

[JenRIT]

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

[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.

[Charlie-Oooooo]

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

[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.

[phatbastard]

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

[handyhacker]

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.

[tunnl_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).

[murtoz]

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

[Nill-ls]

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

[craigbarlow]

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

[JustME-ftdi]

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.