NHIS stands for National Health Interview Survey. In the US it is an important tool used by the CDC to gather information about the health of Americans. They are now rewriting the questions for 2028 to EXCLUDE any questions about ME/CFS, Long Covid, & fatigue. I cannot believe they are doing this.

This is another way to make us disappear & marginalize our community. If you follow the link below to Solve M.E. or go directly to their website at solvecfs.org you can see their page about this issue. They are asking for our help to keep these questions on the survey. They have included a template that we can copy & paste into an email to request these questions do not get eliminated from this important national survey.

I’m not doing well lately, & I know so many of us here are really struggling, but hopefully this is something that many of us can do. The template allows for patients & caregivers & family members to send that email. I’m going to send it in & ask that my family members send it from their email addresses as well. Hopefully many will be able to accomplish a relatively simple copy, paste, send.

I know so many of us wish we could do more for our cause but this illness is so disabling that we struggle to survive the days. I’m grateful to find one thing that I actually have the energy to do. I hope anyone in this community who is able will please copy the template & email it. Please share if you can. Please share in any other community you think should be aware of this issue.

Solve M.E.- CDC MECFS Long COVID Survey

Sometimes it feels as if there's an underlying assumption in ME forums, clinics and advocacy groups that everyone can access all the help they need to pace and minimize crashes. This is not true at all.

I'm on the severe end of moderate, live alone, and 16 years of ME/CFS. No one to move in with, no one to ask for help, can't afford any more than the small amount of help I pay for now (once a month). No other programs there to help me. On top of everything, I am living off savings (thank goodness I have some but it won't last forever). No one to guarantee a roof over my head, no secure housing to inherit. And so many people have it even worse.

Every day's a struggle to get myself fed. And I can't eat just anything due to food intolerances, which make the ME worse.

Some of us would love to pace enough to avoid crashes, but it's not possible when there's no help.

I wish this reality were acknowledged more.

My teen came down with a virus a year or so ago and has experienced extreme fatigue ever since. We are in the process of ruling out other conditions but it looks like it may be ME/CFS. I have this myself but I got it as an adult so I am not always sure how best to help them.

Those who have been sick since they were younger - what things did your parents do that were helpful? Anything you wish they had done differently? Any other advice?

Right now we are homeschooling our kid and prioritizing socializing time over actual school work. They can only tolerate an hour or two of mild activity a day so not much actually school work is getting done. They are an only child so my thinking is that keeping them from sliding into depression is more important than math worksheets and we can catch up on schooling later if they improve. Thoughts on this approach?

Some of you may recognize me. I posted a picture of myself at the beach some days ago. I deleted it because I was self conscious.

Well, here’s another success story. Initially denied. Got an attorney. Took it to court virtually in August. Just got approved in October. I am legally disabled, and I am not ashamed.

It seems like I'm sabotaging myself everywhere. Can't seem to get anything done. It's like the most annoying comorbidity holy hell, and as dumb as that sounds, really makes my severety seem higher then it would be without it. And I can't really have any conversation without people thinking I'm an asshole afterwards? I'm not an asshole and I'm thankful for anyone who is ready to talk to me and help me. Idk where people always get that. My whole life I've been framed as a bad person with no empathy, and it just keeps getting worse and worse and worse.

Is there anyone who is neurodivergent and ready to share their tips? Kind of losing my mind over here.

oh yeah and edit cause I need this question answered: is there any autistic person who doesn't immediately fall into autistic burnout upon falling sick? cause my skills flew out of the window from the first day on.

Hey fellow me/cfs’ers
There is a huge contrast with various differing opinions on this topic. However, one question that pops up my mind is do you think there will be a cure in our lifetimes? Like next 20-40 years? Do you think we are moving in the right direction with regards to that?

My usual GP is off sick so I got a different one today. It was about things that they actually treat but he asked what the housebound thing was about on the phone before he came to visit and I said I had severe ME and he said "Oh, I am really sorry that is an awful condition, your GP seems to have left that off your record so I will record that now". He didn't need to visit in the end.
I knew my GP had refused to add it to their records, they are a prejudiced shit, but I just walked into a good one randomly. Let's hope my GP stays off sick and I might finally get some help. I actually got some meds today for symptoms I have with a followup in a month!

If you're in the west Portland metro area in Oregon and looking for a good gp, see if you can get in with Dr. Shayla Reid with Hillsboro Internal Medicine. She is a resident but she is by far the best doctor I've seen so far.

Obviously, as a gp, there's only so much she can do for patients like us but she is the first doctor I've ever seen who already knew what me/cfs was. She asked me good relevant questions about my fatigue, pain, muscle weakness ect. And she did not bring up my mental health once even though I gave multiple mental health disorders. It's on my chart that I am seeing a therapist and psychiatrist and on medications so she didn't even bring it up! She also gave me a referral to what's called the CAIRE clinic which is OHSUs long covid clinic though I do think they treat me/cfs even if it's not covid related.

Before this, the best I'd had was my neurologist who at least agreed to look up me/cfs but I don't think she did much research and she kept bringing up my mental health issues and I kept telling her that I've had depression for decades and I know what it's like and this is not it. That neurologist did try to refer me to the CAIRE clinic but the referral has to come from a gp apparently.

Good doctors who will believe you and take you seriously do exist! I know they're hard to find but they're out there!

Hello all, I am sharing my latest astrophotography project. I was able to set up my telescope and camera rig near my bedroom so that I could control it from bed via an app on my phone. With my wife helping me get everything setup I was able to collect photos of this target for multiple nights and then edit everything over a few days in short periods. My baseline has declined over the last few months but I will not let that stop me completely from imaging the cosmos and I'll share these projects as long as I am able.

The heart and soul nebulas are a stellar nursery located around 6800 light years away in the constellation of Cassiopeia. This image was created using specialized filters to separate the light coming from areas of dense sulfur, hydrogen, and oxygen so that I could recreate the color palette made famous by the Hubble telescope.

Where all you ME patients triggered by EBV? I'd be knocking on my doctors door to try this MS treatment for the ME symptoms.

So the title speaks for itself. I'm chronically ill and stuck living with parents who are physically and emotionally abusive. I got chronically ill after being exposed to black mold when we moved to our current house, and it's been 5 years now that I've had no life and no progress. I told my parents the mold was destroying my health, and they didn't care. I was so sick that I looked and felt like I was dying at one point, and they neglected me for the entire 5 years and gave me no support. Because of their cruelty throughout my entire life, I find it really difficult to interact with them in any way. If I do speak to them, even on rare occasions, I only regret it. I feel like I'm stuck here. I used to be a bright, happy, upbeat girl, and now I'm still stuck in a loveless, cold home with no empathy. I'm so depleted; I break down every day. I just got awarded disability recently, but it's on the lower end and wouldn't be enough to move out. I don't want this to be my life. I don't know what to do. I wish I could be healthy enough to move out, but my symptoms are severe.

I can’t help it but I cant do this illness anymore.
Moderate cfs was somewhat liveable, but severe and very severe are another level. it’s no life at all. It’s just breathing to stay alive and nothing more
I’m so sad 😭

maxing out on adrenaline vibes

I'm moderate and have recently been having conversations with my wife about us sleeping in separate rooms to allow me to get a better rest but she is absolutely heartbroken about this.

She works hard to support and care for me and take care of much of the house stuff so I can pace, and she's had to adjust so much already to our new lifestyle because I simply can't do the things we had hoped to do etc. but this for her feels like a rejection and a change in our relationship that she can't be ok with. (We've been together 27 years and love each other very much.)

What is your experience of sleeping arrangements? What works best for you? Have you found sleeping separately helpful?

Are you able to play with them and go to the park etc.? How often? Take a short ride on an e-bike? Wondering what it looks like for you.

Currently moderate and housebound. Most of my interactions are watching him play or watching TV together. Sometimes we play a simple board game or Mario kart. Still joke around a bit too.

On weekends I have to dissappear multiple times to rest up.

I'd give up what little hobbies I have left if I could go to the park.

Here some fun pics of me before vs after mono and me/cfs destroyed my life:) second picture is after not sleeping in days due to me/cfs severe insomnia and akathesia

Multiple things in text below; scared, don’t have ME/CFS doctor, ER is out of the question for any reason even if I am dying, they send me to psych ward or PHP, they believe it is psychosomatic and I am an addict and very mentally ill and they know it and that’s the only thing that matters to them.

I went to a facility, a rehab-like one, because I was chugging alcohol for four days in order to force rest and digest after being in a state of fight or flight for months. I went to this rehab because I had started to experience hallucinations after not sleeping, and I CANNOT GO TO THE ER as I said before, and I figured they could help me sleep: and took this for four days: 6mg of Ativan for two days, 3mg of Ativan for two days, and 1mg of klonopin for 1 day

I discharged about 20 hours ago because they were starting to forcing activity on me (first 4 days you can rest and chill, after that required full 7-7 schedule of group therapy) and now I’m home and my muscles in my legs are tense, I have noise sensitivity like I have NEVER had before, and my visual snow syndrome is worse

At this facility I also had to walk a lot, to the nurses, the cafeteria, expericned mental breakdowns, akathesia, because Ativan actually has paradoxical affect on me I think.

It’s been 24 hours since my last benzo (1 mg Ativan), and 36 hours since klonopin

I’m really scared about benzo withdrawal, I’ve had it before. But I just slept for 13 hours, as you know I have severe insomnias. If could be because of the klonopin in my system still.

Other symptoms: pain in whole body, light sensitive, extremely irritable (I just screamed out of frustrations when I dropped my noise canceling headphones off my bed) (I was irritable on the benzos anyway) agitated, vivid dreams, and feels as if I cannot get to a state of rest

I genuinely cannot go to the ER because when I have been before(for severe insomnia) they have put me in a psych ward and almost court ordered PHP for me (I can’t get out of bed without worsening PEM/adrenine rush) I am a known addict/mentally ill person at every ER near me, every chance they get is court order her to go somewhere

One time I went expericing akathesia and they said I was throwing a fit kicking my legs and force drugged me with anti psychotic and handcuffed me to a psych ward full of people screaming.

Am I freaking out over nothing? I believe I am severe-very severe but I am unsure as I have been running on adrenaline for a very long time and have used medical GHB to force sleep for a while (this may get taken away from me forever due to the pharmacy finding out about my being an addict.) I likely find out in a few days if I will ever be able to take GHB again, however, GHB actually sometimes has paradoxical affect on me now, (it is a main aggregator of my akathesia at times) so maybe for the best

Genuinely no sleep meds work for me besides GHB (when it is not paradoxial). and klonopin but I cannot go through anymore withdrawals. (GHB doesn’t cause withdrawals when taken as prescribed, but it actually recently worsens my akathesia and therefore insomnia) I cannot take nightly klonopin id rather die, benzo WD worsens my akathesia

Really scared of the unknowns and taking everything not to chug the bottle of wine in my mini fridge next to me right now, last time it made it so much worse

Severe OCD. BPD as well

I have a sleep doctor and he prescribes the GHB but it is up to the GHB pharmacy now in order to dispense it, they may not

Btw, this is me before vs after mono destroyed my life. I have not played my sitar in almost a year

I am crying while writing this, however I find crying helpful in my resting because it triggers rest and digest when I am done, which I can hardly ever get into a state of
Ultimately what I am very scared of is that I will go through benzo WD after these four days of use

Like I said I just slept 12-14 hours with one wake up in between. I am taking CBD 100mg every 8 hours, clondine 0.2 every 8 hours, and 2g aminita muscaria tincture every 8 hours (yes maybe it’s bad but it triggers rest and digest for me at times and keeps my limbs still when they are trying to move from akathesia)

My PCP refers me to psychiatrist and sleep doctor when I ask for help, ER is out of the question. (I don’t need it now anyway) Sleep doctor is trying to get me my GHB however pharmacy may deny, I just sent him a messsage about the insomnia and that I NEED A PRESCIPTION WHILE WAITING TO SEE IF I WILL GET MY GHB AND ALSO THAT IF MY GHB CONTINUES TO CAUSE AKATHESIA I NEED A NEW SLEEP MED he encourages ER for severe insomnia or psychiatric visit

narcolpesy is no longer my main issue, before me/cfs I could sleep for hours a day, now I experience severe insomnia

I think maybe the benzos were covering up the PEM and now I’m feeling it bad- tinnitus, full body nerve pain, extreme irritable, head feels like it will explode, severe headache. Extreme noise sensitive and overstimulated) (a dog was barking outside yesterday and I threw my phone at the wall) However these could also be benzo WD symptoms

I actually feel calm and sleepy again now, maybe the CBD is helping

I have OCD as I mentioned and always need reassureance and a plan. So my plan now is to lie here with my noise cancel head phones and earplugs, take my supplements and meds, maybe do meditations, and try not to worry about benzo WD and sleeplessness (i can tolerate every symptom of me/cfs besides the insomnia)

If I experience worsening visual snow syndrome (worsening VSS for me just equals hallucinations), severe muscle tensions, and benzo WD symptoms, I will go BACK to the rehab, and when they try to force activity on me, I will refuse. Like I said ER is out of the question even if I am dying, every chance they see me they jump on trying to send me somewhere or have me do a program

I will keep my phone silent, except for having the GHB pharmacy on emergency override (I need to know if I am going to be able to take this med, and if not, my sleep doctor/neurologist NEEDS TO PRESCIBE A DIFFERENT SLEEPING MED)

I will do my best not to consume the wine 3 feet from me. I actually feel okay right now, like I may sleep some more

Maybe the benzos aided me out of the crash and I don’t need them anymore? I don’t want them, I don’t want to take a benzo, it helps in the moment, but benzo WD is very bad

Pls be kind to me in the comments, I have posted other things, if you notice discrepancies, I am being as honest as possible, but I have slept probably a total of 50 hours in the past month. My brain feels fried.

Edit: it’s been 12 hours since I’ve posted this. I’ve slept a total of 20 hours in the last 36 hours (very good) and no withdrawal symptoms as of now. Akathesia has come back a little bit but that’s it. Sodium oxybate likely coming on Saturday

I often hear why can’t I just be more positive for once. Yes they do everything for me but I can tell I’m an utter burden. When I first got sick we argued 24/7 about my needs. Now I’m v severe. Text argument btw. They raged at me and said they walk around miserable because of me etc etc. I’ve gone nuts about it. Woops. I’ll likely delete this. They’re the only person I have and now I feel like the relationship will never mend, I don’t want it to tbh. I am rambling because my head is about to explode. She says it’s me and I make her feel guilty and I’m passive aggressive because I say things like “I did this to save you doing it and now I’m crashed” but I don’t do it in that way, it’s to prove I’m trying. Pointless.

I'm not looking for treatments. Everything failed.

I'm just wondering WTF no research is looking for mechanisms of the light/sound sensitivities. It's the N. 1 thing that sends us to the psych ward.

Yes it's complex. If it wasn't we wouldn't need any research done.

I am very severe and it’s the only thing that calms my insanely wired nervous system and lessens the pain and allows me to sleep. But I need a very high dose because of a recent crash. I won’t say the dose but if you have had this experience you can pm me.

​

Hi everyone,

I’m looking for experiences for my husband, who has very severe ME/CFS. He is currently bedbound 24/7 and extremely sensitive to medications and stimulation.

His main symptoms

He seems to have significant hypersensitivity of his central and autonomic nervous systems.

He can barely tolerate sitting upright or being out of bed.

Even very mild stress can cause a major worsening of his symptoms.

His heart rate can increase during these episodes, although it does not necessarily reach very high levels.

He has severe dizziness when trying to sit upright.

He experiences tingling and numbness in his head, as well as very unusual neurological sensations.

He has significant neurological pain.

He has severe cognitive and sensory hypersensitivity.

He can barely look at a phone or screen and speaks very little.

During episodes of dysautonomia/POTS, he also urinates very frequently.

As a result, he is essentially bedbound all the time.

His blood pressure is generally good, and we have not noticed significant blood pooling in his legs. The main issue seems to be an extremely reactive central and autonomic nervous system.

He currently takes midodrine 2.5 mg three times a day, but it has not significantly improved his ability to tolerate being upright.

He also has persistent symptoms following a reaction to fluoroquinolones (“floxed”), including neurological symptoms and pain. We consider this separate from his ME/CFS; we do not believe the fluoroquinolones caused or worsened his ME/CFS.

Treatments he has already tried

LDA (low-dose aripiprazole)

0.10 mg, then 0.25 mg over approximately 2 weeks. We feel this may have been increased too quickly given his extreme sensitivity. We are wondering whether it could potentially be retried much more slowly under medical supervision.

LDN (low-dose naltrexone)

0.10 mL for about one week, but he tolerated it very poorly and stopped.

Midodrine

2.5 mg three times daily, with no significant improvement in his ability to tolerate being upright.

We are particularly interested in experiences with

Guanfacine

Mestinon / pyridostigmine

Lamotrigine

Rapamycin

LDA, restarted much more slowly

or any other treatment that has helped people in a similar situation.

For those with very severe ME/CFS, bedbound 24/7 and extremely medication-sensitive:

What has actually helped you?

What reduced your neurological pain or symptoms?

Did anything reduce your extreme reactivity to stress or stimulation?

Did anything improve your ability to tolerate sitting or standing?

Did you regain even a small amount of energy or function without causing significant PEM?

Which treatments were particularly well or poorly tolerated?

We are mainly looking for experiences from people in a genuinely similar situation, so that we can discuss possible options with his doctors.

Thank you to anyone willing to share their experience.

Please let me know what works best for you & expand in comments (e.g. which meds).

Personally, - other than rest/pacing - medication works best for me (mainly Low Dose Naltrexone 4.5-9mg, also medicating POTS & MCAS).

POTS: bisoprolol 5mg, Ivabradine 5mg AM 2.5mg PM
+ vast amount of water and Electrolytes daily (get kidneys checked every 3-12 months if you take meds processed by kidneys and have high salt intake)

MCAS: not sure if I have it or if it’s just allergies. I do triple therapy: H1 & H2 blockers (fexofenadine 180mg x2, famotidine 40mg), and Mast Cell Stabiliser (3mg Ketotifen).

Melatonin 1mg for sleep.

I’ve tried quite a few meds, but I’m yet to try meds like Low Dose Abilify, Mestinon, Low Dose Rapamycin.

Supplements:
I found Ubiquinol (most bioavailable CoQ10) helps when taken with dietary fat.

I’ve never really noticed diet helping, but I think my only chance of getting a bit better involves trying to improve EVERYTHING. That includes my diet, and also starting to meditate or do deep rest again. I’ve tried it all before, but I feel like I really should try to keep on top of it all. I really hate meditation because I have ADHD.

It is insane just how bad a person can look in ther mid 20s.

I am not even overweight, I am extremely thin man, literally my body looks malnourished but my face is completely destroyed and looks very ill.

It's like every muscle and tendon in my face deteriorated and now my bones are getting severely weird/misaligned. My face looks like someone stretched it for months and then released it. Puffy, like there is lymph that doesnt go away no matter what, my jaw is completely misaligned, my eye dropped so I look like I had a stroke, my face muscles are visiby so different and misaligned randomly, you can see it right away on my face.

When you compare my photo 6 years ago and now, that is completely different person. I look 80.

I’ve become increasingly light sensitive but throughout my entire illness I’ve experienced eye pressure. I also notice that the same blood vessel keeps bursting every few weeks, and this has been going on for almost 3 years now (basically the duration of my illness). The last time I went to an eye doctor was right before I got sick, but now I’m severe so going there would be a challenge. My eyes get fatigued more easily now and I thought that it was maybe just because every muscle in my body is weak and well, eyes are controlled by muscles. But now I’m not sure whether it’s an actual problem with my eyes and not muscular or neurological like I’ve been assuming. Maybe it’s just eye strain from looking at screens all day, or I need my glasses prescription updated, but I hear a lot about eye problems in pwME so now I’m wondering how normal these symptoms are and if anyone has gotten answers for it? I’m particularly concerned about the blood vessel problem. My blood pressure is lower due to Propranolol so that shouldn’t be causing it.