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.

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.

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!

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!

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.

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?

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.

maxing out on adrenaline vibes

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 😭

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?

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.

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?

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.

How do you manage it?

I think it would really help my quality of life. I currently see carers 20 hours a week and it’s not daily so I am not sure how I could manage.

I am moderate.

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.

Would be very interested to see this study done with me/cfs patients

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.

Hi all

36 F UK mod-severe

I've hurt my neck just for being in bed... Potentially because of neck craning when sitting up and looking at phone/device/book

Hit me with your reccies for sitting up in bed, how to stay comfortable but also prioritising spinal health. This has been horrid because the pain has made me nauseous

Tia

​

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.

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.

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.

Hi all,

I posted here a few months ago when I was about to start fludrocortisone 50mcg daily for dysautonomia/orthostatic intolerance/low blood pressure type symptoms.

I’ve now been on 50mcg for around 3 months. I tolerated it reasonably well overall.

Early on, I did notice that I seemed to retain more fluid and was urinating less frequently than usual, which felt encouraging. After around 6-8 weeks though, my usual tendency towards frequent urination started to return, so I wasn’t sure how much ongoing benefit I was still getting from the 50mcg dose.

I’ve just had follow-up bloods:

• Sodium: 139 → 143 mmol/L
• Potassium: 4.0 → 3.6 mmol/L
• Creatinine: 103 → 96 µmol/L
• eGFR: 80 → 87

My specialist is happy for me to increase to 100mcg daily, monitor my BP, and repeat U&Es in 2 months.

I’m especially interested in people who started at 50mcg and then increased to 100mcg:

• Did 100mcg feel noticeably more effective than 50mcg?
• Did it help more with low BP, standing tolerance, weakness, dizziness, stamina or fluid retention?
• How long after increasing did you notice a difference?
• Did side effects become more noticeable at 100mcg?
• Did potassium become an issue for you?
• Did anyone find that 50mcg seemed to help initially, then felt less noticeable after a while, but 100mcg restored some of that benefit?

I know everyone responds differently and I’m following my specialist’s monitoring plan. I’m just interested in people’s real-world experiences with that specific dose increase.

Thanks all!