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!

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.

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!

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

TDLR: I had to quit my job because I am so bone p exhausted. I can barely make it through the day.

I’m 10 months postpartum, I started my period again 2 months postpartum (felt fine until 4-5 months post partum) and they were HEAVY. 2-3 tampons an hour for 7-8 days. OB says “that’s how periods are after baby”.

I’m working with a naturopath: gut test is fine, although EBV showed present but not an active mono flare, I do have Hashimotos (see attached photo). Endocrinologist says “this tiredness is not a thyroid problem, thyroid is fine”. Ordered me a sleep study.

I cosleep with my baby, but she sleeps through the night we get 8-9 hours a night. Do we toss and turn sometimes? Yes. I fear the sleep study is going to show the obvious, that I might not be getting the best sleep but I technically do sleep 8-9 hours.

Ferritin was 20 and now 45. I want to believe that it is JUST a ferritin problem. I felt fine until about 4-5 months postpartum.

My naturopath has given me 2 100mg iron infusions and I have a 200mg one tomorrow as well. But says this is the last time she will do it. We tried birth control, it actually enhanced my period and gave me an extra one when I missed one dose. I felt terrible on birth control and it’s not for me.

Well, seems like I’m filling up a leaky bucket (heavy periods and infusions). Husband and I want to start trying for baby #2….. but I’m worried it’ll take too long and I’m just losing blood every month while waiting. I also don’t want to go into a pregnancy already exhausted. But we really want to grow our family.

My main doctor doesn’t believe it has anything to do with ferritin and said she will try to get me a hematologist but isn’t sure if it is justified with a ferritin of 45 (even though I told her new AHA thresholds being 70-100).

Does any doctor believe in ferritin?

What would you do? Could this really just be a ferritin problem? Any experience?

I know it means absolutely nothing definitive as it's only a 1:80 titer (I know some labs consider that negative, mine considers it low positive) and a speckled pattern. But idk the big red highlighted POSITIVE when I open the results doesn't help me not feel anxious.

Was kinda hoping everything was just in my head and this could all be resolved fairly quickly with a change in psych meds but I'm getting scared. I don't want to be in the revolving door of medicine but it's looking like this is what my life is turning into. I cried today because I was so nervous. Everything is getting so much worse and now I have to go in for more testing in a few days. Would do tomorrow but I have to WORK and I'm the store manager and no one else is available and I need money so I HAVE to work lolllll!!!!

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.

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!

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.

Hi everyone! I posted some questions about Apple Watches yesterday- thank you to anyone who gave advice! When doing more research, I kept seeing the Garmin watch popping up as a good one for ME/CFS. Would anyone recommend one over the other? And if you do find Garmin more helpful, which model do you use? I saw online that the Venu 4 is pretty good for ME/CFS, but there’s so many models available. Thank you!

I’ve been looking for a doctor to diagnose me with ME/CFS for a while now, after discovering this condition and educating myself on it more. I’ve used many of the resources available in this sub to help determine if this is a condition that I have, and I strongly believe I do. I’m not making this post to ask for advice on if I have it or not.

After researching doctors in Michigan that specialize in ME/CFS and related constitutions, one of the one’s I’ve found is Dr. Edward J Conley’s in Flint. My mom was able to speak on the phone with him and a visit with testing plus the follow-up appointment to go over that testing would be over $2,000. He said he would do a urine test to see how my mitochondria is functioning, adrenal labs, and check my adrenal glands, none of which would be covered by my state insurance. He also said that he believes he could get me feeling better before the end of 2027, which to be honest raised some alarm bells in my mind since my state has only worsened the last 5 years I’ve been sick after catching covid for the first time.

I’m making this post to ask if anyone here has any experience with him, what types of treatments he recommends (like if he’s just gonna tell me to do GET or take some magical supplement 🙄), and if he’s someone worth going to before spending a lot of money just to see him. If you have any other recommendations for other doctors in Michigan besides him, please let me know as well. I’m sorry if this is long, I just am at the end of my rope with trying to get a diagnosis. Thank you for reading, I really appreciate it!

TLDR; Does anyone here have experience with Dr Edward J Conley in flint michigan, and is he worth spending a lot of money that I don’t really have for a diagnosis. If not do you have any recommendations for doctors in Michigan. Thank you 🫶

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 😭

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.

maxing out on adrenaline vibes

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 planning to ask my PCP (who specializes in ME) for a prescription for benzos — hopefully for both ativan/lorazepam and klonopin/clonazepam.

i’ve been taking these from a several-years-old rx for panic attacks, but i’m almost out. they’ve been extremely helpful for preventing/mitigating crashes.

i know that some doctors are wary of prescribing benzos, so i want to prepare myself for that, and maybe prepare to make a case for why i need the rx.

any tips/advice? what has your experience been getting these prescriptions?

ETA: i’m in the US

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.

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.

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?

Without necessarily getting PEM. However, I often get very tired and sleepy afterwards, while I often hear that people feel energised after working out.

My tolerance for cardio is much lower. Maybe because cardio more easily increases my heart rate beyond my pace line.

I get 1-2 days of PEM from activities including: a couple of hours walking, a day in the office (well, I'm wiped out by the time I arrive), a few hours socialising, intense stress/emotional stress.

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.

Hello, can anyone link a post from the last two weeks where a person “solved” their CFS by going to a neurosurgeon who figured out their brain stem (or something similar) was not properly connected?

To get the diagnosis they had to do standing MRIs.

The diagnosis may have had the word “interstitial” in it.

I thought I had saved and screenshot the info, but can’t find it. Thanks, brain fog!

I believe it’s caused by injury or EDS. I need to ask my neurologist about this. Thank you!

I am unable to do what I used to be able to do in the kitchen.

Would a dietician or a nutritionist be able to help me learn how to cook with chronic fatigue syndrome?

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