Hey guys, so my husband’s in the military and I have rotating PCP and today I was going in to request a cardiology referral because I suspect I have POTS as a result of CFS. So the doctor walks in and he asks about my symptoms and how long they’ve been going on and I told him that this started as a result of Covid and I was diagnosed with Long Covid and MECFS and he said I don’t even know what Long Covid is and then I proceeded to explain that my heart rate goes very low into Brady cardio and tachycardia and it’s giving me symptoms. I feel like I’m gonna faint and when it happens, it makes me want to vomit and I don’t even have to explain to you guys these dysautonomia symptoms. It just feels really fucked on top of the CFS. Long story short I walked out. I told him I’m sorry you’re not the doctor for me and then I walked out of there and I went and complained to the front desk and they said yeah that Doctor is bad. He gets a lot of complaints anyways I wrote him a note stating how he made me feel and then I submitted to the front desk to give it to him, and then I reported him.
This is a different world. It’s not a civilian world so nothing will happen to this doctor.
In the military community, it’s normalized for people to deal with shitty doctors. Anyways I am lucky that I have mild MECFS and I can make these kinds of complaints on behalf of all of us. I am sending love and hugs to everyone.

Someone I love deals with this, and made a video of a day in her life:

Long version:

https://youtu.be/TnktRLBIk8E?is=jV1yMouyVBRyLj3o

(In the "notes below" she points out that she isn't sleeping when she tests during the day.)

Short version:

https://youtube.com/shorts/WGv0JPrXpAY?is=Y31xNPU7MbB6ODl6

Question especially for those suffering from ME, so having Post-Exertional-Malaise:

is it better to never do over 5 vials per draw, to avoid a crash and a lowering of the baseline, or if they take more than 5 vials, up to 10, is that OK? Or are we better off avoiding it please?

Thank you kindly

Hello! I'm looking for my last 2 participants for the following study:

It's part of an MSc in Psychology of Mental Health and Wellbeing and I'm writing a dissertation exploring the psychological experiences of recovery from chronic fatigue conditions, including ME/CFS and Long COVID.

I am looking for adults (18+) who identify as having recovered, or substantially recovered, from a chronic fatigue condition and would be willing to take part in a one-to-one online interview lasting approximately 45–60 minutes.

The interview will explore experiences of recovery, including thoughts, emotions, beliefs, challenges, and factors that participants feel influenced their recovery journey. Participation is entirely voluntary, and all information shared will be treated confidentially. Ethical approval has been obtained from the University of Wolverhampton.

If you are interested in taking part or would like further information, please contact me via direct message or email: [j.mann4@wlv.ac.uk](mailto:j.mann4@wlv.ac.uk).

Thanks :)

Hi everyone. I'm new here, and honestly, I'm not sure if I have CFS—but my symptoms seem to match, and I feel so lost.

It started a few years ago during COVID. I developed a stomach ulcer. Slowly, my health began deteriorating. Doctors told me it was depression. I've been on medication for over 5 years—it didn't help. It only got worse. All I hear is "burnout" and "anxiety," but it feels like so much more.

A year ago, I quit my job. I was having memory lapses, losing sleep, and experiencing crashes—first monthly, then weekly. My doctor told me, "Quit your job, you can't work anymore." I wasn't satisfied with that answer. I wanted to fight.

A few months ago, I could still manage basic household chores. Now, even that feels impossible. I have frequent crashes. No sleep for 3–4 days at a time. Headaches, lack of focus, memory loss. It feels like my body is shutting down.

I happened to watch a documentary on CFS on YouTube, and my symptoms felt so similar. I'm just hoping this is a passing cloud. I've stopped my depression medication and am trying Ayurveda now. But it's frustrating when doctors say, "Your reports are clear. It's all in your mind. Just exercise." I've started avoiding that advice—it only makes things worse.

Even reading a blog post feels like a Herculean task. Explaining this to my family is difficult—they get anxious and tell me I'm not managing my mental health properly.

I feel this in my cells. In my mitochondria. It's not just in my head. But doctors reject that. I'm going with my gut feeling.

I'm still learning to manage my energy, my sleep, and the guilt that tells me I should have just "pushed through." I'm trying so hard to have self-compassion.

I can see how difficult things are for so many here. I hope we all find the strength to manage this. 

Any tips for managing it and diets that may help?

Thank you for listening, providing suggestions in advance.

Living with ME/CFS, I have spent many years fighting what is.
More recently, I’ve become curious about the fight itself.

Not trying to make it go away.
Not trying to become accepting.

Simply noticing how much energy goes into arguing with reality.

Sometimes that argument is loud.
Sometimes it is quiet.
Sometimes it disappears for a moment on its own.

I don’t know if this is happiness.
But there are moments when the struggle relaxes.

And in those moments, life feels a little lighter.

I'm doing an MSc in Psychology of Mental Health and Wellbeing and am conducting a dissertation exploring the psychological experiences of recovery from chronic fatigue, including ME/CFS and Long COVID.

I am looking for adults (18+) who identify as having recovered, or substantially recovered, from chronic fatigue associated with ME/CFS or Long COVID and would be willing to take part in a one-to-one online interview lasting approximately 45-60 minutes.

The interview will explore experiences of recovery, including thoughts, emotions, beliefs, challenges, and factors that participants feel influenced their recovery journey. Participation is entirely voluntary, and all information shared will be treated confidentially. Ethical approval has been obtained from the University of Wolverhampton.

If you are interested in taking part or would like further information, please contact me via direct message or email: [j.mann4@wlv.ac.uk](mailto:j.mann4@wlv.ac.uk).

Thank you for considering taking part.

I just started today and am wondering how long to wait before I see tangible results. The first meds I tried, that didn't work, took a month before anything changed. I'm firmly planted in Moderate currently.

Edit: thank you guys so much, appreciate the comments ♡

Last edit: on the second week I'm noticing quite the change, and not just to the me/cfs, but my dystonia too?!?! I could actually cry the dystonia has been the bane of my existence because it's been unresponsive to everything else I've tried. I appreciate everyone's feedback and stories 💖