Here's to sub grouping with larger scale studies! We've known we need this for ages. About time someone (who actually has the funds) actually funds them. We're being held back by this dramatically. Here's also to studying PEM, the NIH feedback from the community was full of people saying why haven't you mentioned PEM, you must study this, it's so important to us as patients, and yet it's so under studied. From my perspective, if I had to choose just a single one of these horrific symptoms that I have, to get rid of, it would be PEM! For sure. It's hell on earth. And almost impossible to get a grip on when you reach the severe end and are having to fight to get the right level of support to help you literally stay alive. You can't pace to remove PEM if you're not able to get the right support. I'd really love some kind of medication that could help manage it. I feel like it's the key to this illness!!! When I remove PEM I improve. When I keep triggering it I get sicker over time. How is it not more of a big deal in the research world???

Well deserved for Dr. Iwasaki!

I have been dealing with ME/CFS since I was 16, now 53.. it’s been a long hard road, I so wish that they could find a cure for this thing or at the very least find something to make the quality of life better.. one day, I hope

When Dr Patterson is finished with this ...hopefully he can figure out why ppl with connective tissue disorders (Ehlers-Danlos, Hypermobility Spectrum, Marfans Syndromes). Somehow we as a population get MCAS, POTS, chemical sensitivities, ME/CFS, fibromyalgia, etc.

Odd question: has anyone lost their body's response to sexual stimuli? I wondered if it could have something to do with the vascular inflammation and micro clots? (Had vascular ultrasounds last year as had leg heaviness and couldnt walk far...results showed abnormality..but since I have no visual leg symptoms...vascular said there was nothing there..though my PCP rushed a referral to vascular.) Makes me think that vascular dept wasnt up to date with latest research.

The Ugg in mice says it all….balance, pain extremities…yahoo……get on it everyone……we are desperate….xxx

I need to share this with a family member. In place of the usual icons, there is ink a link to an ad by the CDC, stating that the vaccine is safe and effective.

Is there any way on how a private person with ME/CFS can do these brain scans to diagnose neuroinflammation? I would love to finally have a way to at least diagnose this horrible disease...

I have heard for over ten years now about mitochondrial etiologies for ME/CFS, and it seems like a reasonable, well motivated, possibility based on some of the symptoms. Research papers seem to extend this association all the time. However, it seems that none of these pts are worked up by properly trained and experienced biochemical metabolism and medical genetics / mitochondrial disorders specialists. Dr. Fran Kendall, as one example of a competent expert, who has worked in mitochondrial medicine for well over thirty years. These people are out there in good numbers. They know all about specialty testing, which is available from competent, CLIA-certified labs. The kind of thorough metabolic and genetic work-up they can provide is needed by thousands of pts. If only a few pts are sorted out of the murky ME/CFS category as a result of a more definitive diagnosis, that will be a great leap forward for them. And what else might we learn in the fall out? Perhaps a panel discussion of these experts at an ME/CFS conference, as a start towards involving more of them, will help clarify this topic.

Have you done TCR/BCR sequencing? Still have peripheral blood samples to gather that info? We may collaborate.

Great presentation, especially the second half where you got into the practicalities of pacing and modification and adaptation of tasks. I wish I'd seen this months ago when I was first really sick rather than have to cobble it together from different sources myself!

Thank you for your work for the ME/CFS community.

Hello to everyone here that is also struggling and suffering in silence I just started used “visible” the company are tracking our great rate in an app I have been using it a few days and I’m finding most helpful I hope this helps other also 🫶 and thank for your research and dedication in this field ❤

Not had time to listen yet BUT so glad to see ME only,has been used in your info👍🏻FINALLY😊& NOT cfs & long Covid tacked on.Thanks SolveME for all your efforts & support😊

SolveME: How do we get an update on this research?

Thank you for this message of hope. I’m very much hoping that I have a new MP on July 4, who may be more empathetic towards people with ME. As a 66-year-old mother with moderate ME left as the sole carer for my 41-year-old daughter with severe ME and CRPS, who has been bedridden for five years, apparently her needs are too complex for Adult social care to be able to provide carers, but I am expected to do it all myself! I have been trying to get Disabilty adaptations carried out for her for the last 3 1/2 years, but have not been able to find the energy to drive the project forward, and there is no advocacy available to support me with those efforts We don’t want to be ill.We want to be out in the world, working full-time jobs, being useful Citizens, making up for lost time. Making friends all over again, having lost most of the people who used to be in our lives. Every little bit of hope that comes our way is like a candle in the darkness 🕯️

I would never support any research by the WHO. I found this insulting.

does anyone know if the Interleukin 8 she talks about IS or is NOT part of the Interleukin 8 that is tested for on a Cytokine Panel? It sounds like it is a special one derived from a different process than what would normally be done in a lab in say, the USA

Im in so much pain all the time cfs me has robbed me and im praying for a miracle 🙏🏽

Hey, look at this. The Solve Nothing team is still making 1 hour meaningless presentations. How about the Solve Nothing initiative stop making videos, and just alert us when a cure is available. I see hundreds of videos on this channel, yet I still have CFS. How come? Just keep quiet while we wait for the truly smart people to figure this out. All the dopes in the Solve Nothing initiative, which include some infectious disease docs based out of NYC, should just retire. Stand aside and stop making these time wasting, useless videos. Nobody should say a word about ME/CFS until there is a cure, and the cure definitely won’t come from you dopes.

Is there any hope for muscle wasting after cv and vac? 39 and recliner bound from mysterious wasting. Every test comes back fine

Been suffering with ME for over 35 years. Glad to see some progress. Hope to find cause and cure very soon.

What’s the treatment?

Could treatment with immunology intravenous help?

Omg.. this was exciting to listen to

Thank you for all your hard work

Sadly, dr. Putrinos efforts maybe thwarted due to staffing issues. I waited more than 2 mos. For a scheduled APPT. only TO BE cancelled 1 week before the visit. The group running these studies don't respond to emails or telephine calls. It is atrocious how ME/CFS/LC people are being treated STILL. @Dr. Putrino, IF he is truly interested should look into what is going on with this study n STAFF.

Very interested in this research. After being ill in 1980 I was left with M.E./Chronic Fatigue and would love to know some answers for my illness and symptoms. Thank you for doing your research.

30 years of CFS this should have been done for us after first outbreaks of CFS at Incline Village. Has surely wasted some of my best years of life with a myriad of horrible symptoms and so much disbelief. Not sure which was the worst.

How does the brain inflammation theory relate to the mitochondrial dysfunction theory?

Wow! I feel like we are finally getting somewhere with these conditions! In the last 8 years, I have been diagnosed with chronic lyme ( positive test), reactivated Epstein Barr, ME/ CFS, and long covid. Thank you so much!

Was 68, now 71. Had covid in 2020 & 2021. Had brain fog/vertigo, had what I believed to be shingles in right arm. Was several years ago, seem fine now. Best luck to anyone still struggling.

So even a year in the future, we are still left untreated. Heck even many of my Doctors do not believe in CFS. A LOT of days, I just hate my LIFE.

Thank you David PutHERO. I love the fact that you are in the field. Please stay!

Thank you 55 yrs here in Australia

...It is certainly telling us that the body is responding to the antigents related to the virus... it indicates to us that the body at very least is behaving as though Sars CoV is still present...'

I live in California , San luis Obispo co. and they say their are no doctors who treat long covid , is this true ? Or am I missing something ?

I'm on disability. Was on a ventilator for a week. Symptoms continue to evolve all throughout my body. From my brain to my eyes , digestive issues , body aches. It is very real and a serious life altering condition. I wish it weren't taken so lightly. Or dismissed so easily by one's primary care provider because they don't know how to treat.

I would wear a garmet

My physical aches will worsen severely upon a the slightest attempt to do regular gardening , prolonged standing or walking .ect.its finding a whole new way of living. The realization of learning that pacing is the only way to allow the body to heal .

I have absolutely 💯 learn by repeated trial and ouch , that YES pacing is essential !

Project Red Balloon 🎈

I have been dealing with long haulers since Feb. 2021, it has been a very difficult journey ! I'm so excited that advancements are being made by people like all of you believers in this movement to Help The People 🎉Thank all of you🎉 would ❤opportunity to participate😮

Thank you for your excellent work. ME for decades.

To convince the dogmatic among them who don't want to see ME/CFS and LongCovid get biomarkers and treatments injections of something are probably going to be necessary- kind of like Marshall drinking poisoned broth.

Maybe it wasn't mentioned, but many previous studies on mecfs have shown low natural killer cell function. Was nk function testing done in these long covid studies??

Thank you for your work. I wish I could participate in one of these studies, but I don't live in America, lel :/

Based as hell my dude

I really wish your study accepted people outside of the US!

I'm an able bodied person but i think it's so important for people like myself to educate ourselves on visible and invisible disabilities. I'm glad that people with ME have someone as awesome as stuart murdoch as an open ambassador for the community. I love Belle and Sebastian so much!