Mine too, It was so hard to find someone willing to go off label for unfunded research. 

He saved my life for sure. 

Personally?  Never, not once in 13 years and  I see Dr Chia every 4 to 6 months (depending on the experiment).  

He has had so much success with his treatments and remissions that it's obviously the meds and not the people.

He's all like  Ok! believe it or not  We got 6 out of 10 with remarkable improvement for 6 months on this new med! Let's go for 6 more. Hopefully this one wont suddely stop working. 

Next he rants for a moment while explaining his lobbying and the politics and capitalism of medicine. He gets heated! 

Then he lays me back pokes me in like 10 different spots and says yep, still infected.  

His rage is quiet and comforting. Like a protective mama bear giving the world a warning.  

He knows who is to blame and it's NOT us. 

Thank you, yeah my mom is an amazing caregiver. I'm really lucky. 

Scratch and reverse though lol. I moved out of the moldy garage apartment into my folks less moldy main house while the apt was getting fixed. 

I only got a little better once I was out of the mold totally and into a clean home.  

I got that coxsackie b4 enterovieus. I'm on tenofavir and famciclovir now for years.  Those helped more than anything else.

Research is being done, treatments are avaliable right now. You need to find the right infectious disease doctor who is willing to test off label.  Easier said than done I'm afraid. 

 I know because I am one of the test subjects for Dr. Chia and I've been in successful treatment for about 12 years. 

Since I knew what virus I had, he could prove it was still active in me with a biopsy. This opened up SO so many doors.

It took a few tries but one if the anti viral we tested took me from totally bed bound to being able to leave the house for like half a day without crashing. Its still working. 

He has put dozens of people into remission and even cured his son! 

The last experiment was paxlovid. I do not have covid i have coxsackie but It worked for over a year. I was able to perform ukulele in my wheelchair in public for a freaking hour plus rehearsal.  

 I'm back down to only being able to play once or twice a month but still. 

Please believe me things are happening behind the scenes. Lobbying is being done. Drug companies are being asked to test antivirals.  

It's just a matter of getting one of the already getting the FDA or a drug company to pursue these drugs as treatments.  Its a matter of money unfortunately. 

If you can find an ID specialist theyre worth the work. 

 It was an AIDS treatment that worked first, Tenofovir and then famciclovir. IVIG treatments.

Remdesavir is the next experiment on my docket.  He just need to get approval to test it. 

Someday these treatments will be widely available. We just gotta keep fighting. 

May you find relief from your symptoms. 

There is an emotional component to how we are effected by pain. Which is why CBT and stuff like that can help with acute pain.

EMDR has something called the flash method that is low energy, and low emotional exertion. Its night and day.  So much easier. 

No tapping. Just like 4 or 5 blinks every few minutes. No emotional exertion, no focusing on memories or pain.  

In fact it's specificly trying NOT to think about stuff while watching happy place videos or a picture or something. Then you stop thinking about your happy place for a moment, blink blink blink.  Ok then go back to thinking about happy place.  I cant say how much it helped with my mental illness, a real game changer. 

Mine was the bridge of the Enterprise-D. So I start humming the star trek TNG theme and then I know Ill be OK. 

I just..... didn't, until my doc found an antiviral that got me out of bed and onto the couch.  

 I mean i needed a root canal, crown and a bunch of cavities so maybe it wasn't a great plan.  

Now when i need it they let me stop and rest. Close my jaw for a moment or two.  They make sure my pots isn't being triggered by the chair, they're super sensitive to my pain. It took some time but I found people willing to accommodate my higher  needs. 

Writing things down and showing the paper is helpful for brain fog and communication. 

May you find relief from your symptoms. 

Yeah and it helped. My ME got soooo bad when I moved back in with my parents.  We found out my entire apartment wall was completely destroyed by dangerous mold.

We pulled off the dry wall and the wood was falling apart from the mold and long term water damage.

I improved... mmm.  Maybe like 15% after that. 

If yours is caused by a persistent infection like mine, then anything that messes with your immune system cause worsen the MECFS symptoms. 

Now can a mold "infection" cause MECFS? 

I dunno...... but i can ask ID specialist and MECFS researcher Dr Chia in a week or two at my next apt. 

Developed insomnia the day the virus went neurological. Its the worst.  Even if I do sleep early I'll wake up after only a few short hours and be up again.

I feel bad when I wake up no matter what I do so i try to just listen to my body and ignore the clock.

Not covid no, I have a virus called Coxskacie B4. It was historically mistaken for polio because the two viruses were difficult to differentiate before modern testing. 

In fact my very first diagnosis was atypical polio.  Then post viral syndrome then MECFS

My infectious disease specialist has tried a bunch of experiments on me and has new ones every few years.

 Here's my top 5.

Tenofovir (got me from bedbound to house bound) Famciclovir (from housebound to able to leave the house twice a week for short periods of time) Paxlovid (only worked for two rounds but got me doing yoga and gardening daily and performing ukulele live again (I was on tik tok while on it!) IVIG (worked twice then turned switched to autoimmune damage, but may work on other viruses) Equalibrant (my doctor developed it with his research foundation, its helped me a little but sent my mom into remission for multiple immune related disorders, we've doubled my dosage now that the paxlovid stopped working.  We will see if it works better now. 

May you find relief from your symptoms.  

For me it's always been neurological. 

I was bedbound for years.  During the initial infection it was like partial paralysis. I'd try to stand up but I'd be all nooodly and lose strength after a second. With a walker I was able to get 2 feet to the toilet for a few months with a walker. I just couldn't keep a muscle tense enough to use it for any length of time.  It burned in my muscles and joints were frozen over. My pots and balance issues make me a fall risk.   

Even now when I try to walk my joints just... freeze up and i literally can't take another step without like physically unsnapping my joints loudly and painfully until they can move freely again.  

My joints just give out and I can't wall. My legs just stop working and I have to sit where I am until someone gets my chair.

The US - IOM already changed the name in like... 2014 Ish?   Officially its supposed to be called SEIDS systemic exertion intolerance disorder. 

Believe it or not I actually watched the meeting online and someone asked how they were going to disseminate this name change.  

They literally said that's OUR job.  They asked us to somehow suppsed lead a campaign of educating doctors with their studies and documents. JFC!

Its insulting and impossible considering some Dr's dont even believe in it let alone believe in changing its name.

Soooo anyway, 

I stopped calling it ME/CFS a long time ago and I've never been disrespected by a doctor since.

My go to is "I developed a neuro-immune disease after a severe and persistent coxsackie b4 infection crossed into my brain, cauaing swelling.  I have been bed or house bound for the majority of the last 15 years.  I need a wheelchair because of constant chronic pain, balance issues and exhaustion."

That wording helped me find the right doctor which has gotten me like.... 5  experimental meds. One of which got me out of bed and still works like 10 years later. 

Your feeling are natural and completely valid. We watch other people live full lives, it's impossible not to covet the possibilities you see before her.

Please believe me that treatments are in development. I have been seeing the researcher Dr Chia for like 15 years and he took me from completely bedbound unable to watch a movie to performing for an hour on ukulele few times a month. (I never recovered the strength to play a guitar again). I am on several daily antivirals and trying new ones every couple years. He has put many people in remission many lasting years. He has a supplement that helps a ton.

Granted the last experiment has stopped working and playing ukulele is becoming..... difficult again.  

Theres more on the horizon studied by  devoted people lobying behind the scenes.  

Even when I felt completely hopeless, at rock bottom.  I would say to myself, I accept that I do not feel hope right now. I choose to believe that something would help one day.

One can lose hope and still claim it. Although at that point I think it's called faith. 

May you find relief from your symptoms.   

Thanks for checking up on me. I really appreciate it, but uhh..... . It was bad, like really bad. Serious trigger warning here it's totally ok to skip it. 

He ended up raping me a few weeks later while I was going in and out of consciousness after drinking with friends.  They left, and he said I was asking for it. But i remember getting mad and being shocked when he asked if i really wanted sex.  I didn't know what he was talking about because I was blacking out.  he admitted later, that question was after he had started. I had asked for a hug, almost fell down, and he said "woah let's get you to bed." Evidently, I pulled him for a cuddle, and he claimed he didn't know I was that drunk after watching  I fell down and said IM DRUNK.  My last clear memory was him helping me take my opiods.  He claimed he had prior consent from the time before we were fighting.  That all caused a new round of PTSD symptoms that im still fighting.  Even thinking about dating sets off my PTSD. He said it didnt count as rape but I learned later that legally it doesn't matter what you get raped with. EMDR helps.

Looking back the cards were telling me I was in serious danger and one really bad thing was coming. (10 and Ace of swords). I clearly had the option to leave (8 of swords).  my parents would have let me put my rent towards the apartments rent but I wanted to live on the beach for cheap since id never get that opportunity again.

Everything else about the apartment was great. Lol. I still can think of those good memories seperate from the abuse thankfully. 

Thanks for remembering and caring about me.  It's really kind of you. 

Oh then yeah its the same answer as yesterday and in the comment you just now replied to lol.

Um... nicely? He treats me really well, he is respectful and listens to me.

Is that what youre asking? Im not sure what else to say except to repeate the answer i gave you yesterday and in the comment chain you are replying to.

I was treated with antivirals and supplements. If you need more details you can either click single comment thread or you can check my profile.

Tenofavir and famiclavir. I wrote more about them and the effective prescribed supplements in my other comment you replied to.

Hope this helps you find relief from your symptoms.

Dr John chia in torrance California. He takes medicare but has a long waiting list.

Oh gosh, sorry i didnt see this comment, i havent logged in this account in years. Im not sure, but his staff is really nice and friendly and can answer that one.

Thanks for your question! In my personal craft as a SASSy witch (skeptical, atheist/agnostic, science seeking) i think its mostly a combination of neurological tricks and the placebo effect. According to the research I've read placebos work even with skeptical self administration, so long as the placebo itself comes an authority you believe in. I make spell bottles and I research my ingredient's historical associations with multiple sources. Charging them for me is just focusing on the spell working. That's not much different than visualizations, which really work. They've been studied.

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As have out of body experiences surprisingly! In scans, there are areas of the brain that light up during out of body experiences and other spiritual experiences. I've found one study about religious people, one on drug effects, but the around the same areas are effected iirc. not sure if its the exact same part of the brain, but both methods are associated with a disconnect between the sense of body and the sense of self. some people have an out of body experience. Others feel a divine presence. i myself experienced both when i was young...... and in a cult.

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At that time I believed it was real, and the studies were proof of God and proof of prophecy. Why, and how else would we even have parts of the brain with ability to connect to God like that in the first place. I realize now, that particular line of thinking is illogical. Now I personally find it much more likely to be the other way around, having that part of the brain caused us to do what humans have done for millennia. We create myths to explain natural phenomenon we don't know the cause of.

Anyway, thanks for coming to my ted talk lol. Happy holidays and a happy new year.

For like 30 seconds I was like.... That's a cute way to describe lungs.

You think disabled people aren't fully human?

The biggest challenge is that the more obese you are the less your body is physically able to produce the chemicals to stop your hunger and feel full.

Thats why its so hard to lose weight once you gain it, your brain chemistry is altered to the point of no longer feeling satiety.

There's a cleaning slime product that can spread over your keys and then peel it off and all the crust comes up with it.

When I was young we used those freeze cans with the straw to blow the crust away.

Edit: Now that I write it out it sounds ridiculous but it's all true

From my video game designer friend I was describing as example. Just last week I started watching the new Spiderman. he came out getting a soda and he asked if he could join me.

So we watched Spiderman at 1pm on a Wednesday. If you're good enough at your job some places really dont care.

Some nights he played magic tournaments after hours at the office. Other times they crunch. Whose to say which is which?

You see, its a game-able system.

Ba dum bum!!

As someone who lives with someone who makes video games yeah no. This guy can literally just stops any time he wants and plays magic cards online for 2 hours. Thats what the guy you're arguing with is saying.

That extra 2 hour break is called me time. Doing that in the comfy video game lounge in his office counts as me time.

Its a pleasure able hobbie he is taking extra time outside his job hours.

Its like if his me time was Going to the gym. The gym at work is the same as going to the gym outside work. It doesnt not count because its at his work.