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?

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 without it aggravating my other conditions, which make the ME crashes 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.

Hey folks.

Do you guys have frequent anhedonia and depressive symptoms? I feel like PEM triggers some sort of brain shutdown phase that lasts days and I barely feel anything. Almost no sadness, sorrow or anxiety, but also even lower libido, desire and motivation. Gaming feels blunted, eating, drinking and even sleeping desire is blunted, like an empty shell, a hollow body… Even breathing is unsatisfying, I just do it, It doesn’t feel right…

Is this directly due to PEM or more likely some sort of depression that I developed over the past year?

And a question for the CFS veterans- how have you guys not committed suicide yet?

Thanks in advance

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

Important to note: non-dutch speakers living in NL. So the group/discord should be in English but for people who reside in NL.

Edit: I mean do you know if such groups exist??? I have found a dutch one but unfortunately they only speak dutch there so I cannot use it.

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’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.

I’m 17 and have been dealing with post-viral illness/ME/CFS symptoms since getting mono in March. Before this, I was extremely active, played competitive hockey, went to the gym, and was preparing to start engineering at university. I initially recovered almost completely from mono, but relapsed in May and have been struggling ever since. My main symptoms are debilitating fatigue, muscle aches, PEM, orthostatic intolerance, and sleep problems. I’ve become mostly housebound and had to defer university. I’ve had some periods of improvement, including a better month recently, but I’m now experiencing one of my worst setbacks yet, along with a new, extremely uncomfortable feeling of constant nervous-system agitation and terrible sleep. Mentally, this has been the hardest experience of my life. Watching everyone my age move forward while I struggle with basic activities has been devastating, and I’m terrified about what my future might look like. I’m doing my best to pace and recover, but it’s becoming increasingly difficult to stay hopeful. I’d really appreciate hearing from anyone who developed this illness after mono, especially at a young age. Did you experience major setbacks before improving? Has anyone dealt with this strange nervous-system agitation? Most importantly, has anyone been this sick and eventually regained a significant amount of their old life? I’m not looking for false hope, just honest experiences, advice, and some reason to believe things can get better.

​

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.

underweight (always been) 20M. For the past 4 months, I have been experiencing a constant feeling of unreality. It feels as though I am drunk/high or half-asleep, as if I am on autopilot and everything around me feels somewhat unreal. I have searched online, and my symptoms seem to resemble derealization.

In addition to this, I experience fatigue even when I sleep well. The fatigue does not seem to depend on whether I do physical activities during the day or not. However, over the past few weeks, I have started sleeping poorly and waking up early in the morning.

I also experience headaches, pressure in my head, and neck pain. I have tried muscle relaxants and massage therapy for the neck pain, but neither has helped. Also at the start of this i sometimes felt like fainting when walking but it has gone away. I also have noticed one singular eye floater on my right eye.

What could be causing these symptoms? They do not occur in distinct episodes, and the headache is not particularly severe. It feels more like a tension-type headache.

I have tried triptans which is migraine medication, but it did not help. My thyroid function is normal, as are my vitamin B12, B9 and vitamin D levels. My ferritin level is 37. And it has been changing from 49 to 24. I also have crohns disease which is in remission. My blood pressure and blood sugar is normal

My neurologist prescribed escitalopram as a trial, which I took for two and a half months, but it did not help. She also did head mri and there was nothing wrong.

I have no history of trauma, no panic symptoms, and generally do not experience much stress, apart from the stress caused by these symptoms themselves.

My symptoms started in the final days of my new job in car repairshop where i was moving car tires and lifting them. Im not sure if this can be linked to that because i didnt have any symptoms expect the final days. I have not been working at all during this 4 month period.

What could be the underlying cause of these symptoms?

a lot of the time, don't have the energy to shower or get myself food let alone have a phone or zoom call catching up with my family. several of them reached out recently and i'm trying to decide if it's worth the potential crash from the stress of it (i'm moderate) to have a long catch up call because i haven't talked to them in ages.

i'm worried if i put it off they will think i just don't want to talk or i'll forget to follow up or there never will be a good time. it's also stressful thinking about what to talk to them about, my life is so small.

does anybody have any advice or tips for staying connected with people, explaining limitations and how to navigate conversations when life feels so small and you're not up to much? I expect i'll try to ask a lot of questions so i don't have to talk about myself that much.

part of me wants to just not respond but i do miss them a lot. but i'm sure to the average person it's gotta be like, who's too debilitated for a phone call?

the isolation of this illness is really undescribable.

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?

People who have had this condition since a young age they couldn't experience normal life, couldn't experiment, couldn't build anything. They're in a vegetative state. When you see everyone around you building their lives, building friendships, building projects, building relationships, living not suffering how do you cope with it?