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Thank you for creating the most inclusive title regarding these diseases i have witnessed in almost 7 years of being ill. I really do feel it is the most considerate to all approach. So many infection associated chronic conditions arise other than the often mentioned ME and Longcovid. As though there are only two outcomes/damage/ autoimmunity after viruses or bacteria. I, myself, like others i know of have been very ill after a viruses and bacterias. Mine was a hideously terrifying neurological onslaught of flu in 2018 where i had all the same systems as those with Covid -19. Even my GP could not believe it when the pandemic hit and what was happening to people. They said it's exactly like your symptoms. Like my medical records were psychic or something. Not possible. Even down to loosing my complete sense of smell and taste, balance and vision for months to years on end. I have never had PEM and certainly don't have ME and I'm in absolutely no doubt. And to be honest I have gotten sick of people who constantly try to poo-hoo and disbelief my experience when i I have do e nothing but believe theirs over the years. I have had other incredibly debilitating disabling issues that don't fit under the MEcfs label or any other common comorbities. And all my doctors agree. The 6.5 years of now long chronic EBV detected always active in PCR and IgM in my blood cause increased reactivations for months on end and I am in need on 24/7 care until my lymphocytes CD19 kick in. I also have hyperadrogenic POTS and no other comorbities. But also vision impairment /damage neurology finds. Basically, to cut a long story short. Thank you for thinking outside of this horrendous box of illness. For it in my experience and others I got to know, it is a spectrum of varying conditions and illnesses. Like you are highlighting with : ' IACC'. Thank you, so very much for thinking of everyone. And being much more inclusive. Unlike other organisations, unfortunately that don't ever mention other conditions/people suffering too out there. Everyone deserves help and research and respect and belief in these devastating conditions.

We need a treatment STAT on the unrefreshing sleep. People going mad. I use to love sleeping.

Any follow up on this research?

As a me/CFS survivor since 2020… the very first thing we must do is seek an experienced functional medical or intergrative Dr that specializes in CFS. Get tested. Whether it’s for metals, hormones, food allergies… etc. Since being chronically ill I’ve desperately done it all. Acupuncture, asian herbal medicine, kinetic energy, vitamin drips… etc. What finally worked for me was getting monthly treatments of UBI ozone therapy & NAD drips. It is not a cure but now I’m in a place where I can function. I refuse to get crashes or be bedridden. These treatments have got me out of both. Yes, pacing & setting realistic goals are key. Also finding support system thru friends or family can truly empower you as well. Some days are better than others but honestly I choose death. It’s very costly, debilitating & consumes your whole life.

I have recently had Covid. And developed long Covid. Can the inflammation of the brain be tested for long Covid question they headaches I have are horrible and the only thing that will do it is the pentene you know I can’t can’t think much with Covid I’m sorry I just dictate and and as it is, and I can’t, I’m not up to even correcting it, but thank you very much if you could reply.

Genetic to adhd autism hypomobility

Apparently you cant be diagnosed with cfs if you have chronic migraine because thats the cause even though i am? With heds

Is CFS/ME being seen in patients post-covid?

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I am moderate to severe for 16 years. I really wanna participate in the study and I’m willing to travel to Alabama.

Does CFS cause Migranes ?

Terrible audio!

Thank you.

Want us to have the real cause

Any updates on BC007 from Berlin Cures? They have an aptamer in stage two clinical trials to neutralize autoantibodies

I made it 12 minutes into the video and gave up. It's too long. Seems like it is just more of the same info we already had. Same general statistics that have been public knowledge for a long time now. I could use a summary with only the results of studies/trials that included people with ME/CFS. From what I've learned over the past few years, we are intentionally excluded from studies and trials, so the results don't apply to us. Their advice on what to do before and after vaccination is not doable for me and probably many others with ME/CFS. Rest? I need to live my life and I have responsibilities. I am always trying to rest, but there is only so much time to do that. Am I supposed to try to rest even more? Not really possible. Take H1 and H2 blockers...can't take them due to side effects. Reschedule around PEM...how can you do that when it's unpredictable and appointments are hard to get? So I quit watching. Seems like the rest of the hour will be a waste of my time/energy.

A real good youtube channel on Vaccines and all of the myths surrounding them is "debunk the funk". If you are going to trust authorities the incidences of injuries are very very very low. I've heard the analogy taking tylenol is statistically less safe than most vaccines for most complications. I used to be anti vaccine not so much anymore. Still have a lot of distrust towards authorities especially the once trying to push the BS that CFS/ME is psychological and can be cured through graded exercise and cognitive behavioral therapy. Far as I am concerned they are criminals. A lot of the claims to vaccine injury are flukes in other words not statistically significant. But you hear about those not all the recipients who got there vaccine without incident. There is also cause and correlation. If someone got a stroke that doesn't mean the wouldn't have gotten it anyways. Or in other words correlation doesn't "necessarily" mean causation. And then there are people with invisible illnesses like covid and me/cfs. There is no way for authorities to quantify this since they can't confirm it with a diagnosis. Where I'm going with this is "Long covid vaccine injury" or "Long Vaccine" There is no way to quantify something like this cause there is no way to A confirm it, and B confirm the vaccine was responsible. IE the person could have gotten covid and not known it. And dr's never mention this because of political correctness but there are lots of people put plainly who are full of crap. Those people ruin it for everyone else especially those who are suffering from these debilitating illnesses.

Is the data from the referenced studies available for anybody who is interested in doing their own analysis?

Is there consideration of vaccine contamination during manufacturing process?

Thank you! I was diagnosed with Fibromyalgia in 2013 and ME CFS I'm 2018. Praying for more funding and hopeful for better treatment.

So I fell asleep listening when it was live. Just listened to it. I didn't find this helpful at all. We kept getting the same responses. I understand every person is different and react differently to just about everything. But I wanted more than what I read on MEaction, which was suggested to us to read from medical provider in this. My doctors don't know much about ME, so I feel like I can't even go and ask my doctor for their recommendations. If there is no scientific data to show if the risks outweigh the benefits, not sure what the point was of this.

I wonder if this is why many ppl can't deal with temps above 75 deg F. At least the folks who have chemical sensitivities have this issue. As well as hyper sweating symptoms.

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Uhm, I think Long COVID on top of CFS/ME is worse than just having the potential to contract COVID. Why risk it? Anyway, who are these CFS/ME sufferers walking about and putting themselves in a position to get COVID? 😂

But how do you treat it???

I've had ME/CFS for 31 years and there was no way on God's Earth that I was going to risk that Covid shot on my illness and I'm so glad I didn't fall for the spin and lies as I now know many people who are very injured or worse from it.

Only wealthy middle aged women in Western countries get this disease. It’s fake, it’s just laziness and depression.

7 years ago .. nothing came of this??

🔴Anyone help me PLEASE.Is it known/heard of as a Symptom of people with M.E,to be unable to produce CORTISOL?? = Req.cortisone etc meds to vaguely function & also prevent Adrenal Crisis?? Thank you😊

Solve M.E.Thank you for ALL you do.Great info here,thanks Dr. L.Jason😊

As someone w/ ME & homebound I'm terrified to even leave the house. I'm fully vaccinated.

What helps me to sleep is 10mg of melatonin, magnesium citrate and zinc before bedtime every night. Then I get up around 3a.m. , use the restroom and then eat a banana and yogurt with honey. That puts me back to sleep 😴😴😴😴😴. Nighty-nite!!!! Studies can be good, but why waste time and money when natural remedies can help just as well. My opinion of the so-called studies going on are again a waste of time and money. Doctor's and nurses need to be trained using Dr. Sarah Myhill's book snd Dr. Jacob Teitelbaums book. Reading and studying those two books i have gone from bed ridden in 2021to now about 80 to 90 percent well. MECFS is such an individual disease we need more naturopathic doctors trained in caring for those with MECFS. Just my 2-cents.😮 Miss Monique

Do you follow any utube MECFS recovery story examples to aid in your research? Why are some people recovering with certain coaches?

Thanks Akiko Iwasaki for all you do for M.E., Myalgic Encephalomyelitis/cfs and Long Covid!

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 🕯️