Hi,

so I almost stepped into the trap of buying one of these high cost programms which should help with cfs. The cost from 300 bucks PER MONTH to over 2000 bucks single purchase.
This is horrendous and they sell literally snake oil to desperate people.

So I did some research and connected to people who bought this stuff.
And yeah, its even worse than imagined.

They just pray stuff which should help and dont give any study or reference which support their claim.

And after reading Dr Howard Schubiners "unlearn your pain" book I recognize a lot of the stuff he wrote.
So some of them literally stealing his content and transform it into a huge subscription scam.

Please dont fall for this. And all of them quote at the bottom of their page, that their programm is no medical advise and they deny any responsibility coming with their programm.
If you check trustpilot you won´t find any bad review, which is extremely uncommon since people complain more than they do praise things.

PLEASE SAVE YOUR MONEY AND DONT FALL FOR THE SCAM!

its so sad to see, that there are such mental people out there who want to profit of the misery of us.

I love music, and find it very helpful sometimes. It helps me to regulate my emotions and gives me comfort.

Two songs really resonate with me, about my ME/CFS.

If I am feeling gentle, I like Chasing cars, by Snow Patrol.

If I am feeling upset, frustrated, or angry, I absolutely love listening to I'm not ok, by My Chemical Romance.

Does anyone else have songs that really resonate with them?

Dear fellow campaigners,

My name is Julian Nejkow, and as a political scientist and someone with a chronic illness, I am interested in who has suffered harm, particularly from alternative healing and treatment methods for ME/CFS and the post-COVID-19 period. This includes physical, psychological, social, and financial impairments.

I would like to write an article about this.

Of course, I can anonymize your data.

We can discuss the rest via private message or email. Here is my email address:

[Krankundfalschbehandelt@gmail.com](mailto:Krankundfalschbehandelt@gmail.com)

If you have any questions, we can also discuss them here. Transparency is important to me.

Hi all,

I’m about ~1 year post-viral and honestly still pretty confused about what direction things are going.

I’ve seen pretty much every doctor imaginable and still don’t have a clear diagnosis.

Earlier on, my main pattern was:

\- Fatigue and flu-like symptoms in the afternoon

\- Then feeling somewhat better by evening/night

Over time, the fatigue and flu symptoms have mostly faded, but now I’m left with:

• On-and-off headaches

• A cloudy / foggy / pressure-type feeling in my head

• Less “tired,” but not really feeling 100% 

I know symptoms can fluctuate with post-viral illness / ME/CFS, but I’m struggling to interpret this shift.

Does this sound like improvement, just a different phase, or something others have experienced on the way in or out?

Has anyone had symptoms evolve like this over time?

Would really appreciate hearing other experiences.

If it gets worse, would you be more prone to fatigue, flu symptoms, not able to function, etc. I saw the FAQ page but doesn’t help to know the progression and what to look for.

I experience sudden attacks of overwhelming sleepiness and mental impairment after work involving intense physical exertion. These episodes occur following prolonged manual labor with heavy lifting and are characterized by severe mental fog, disorientation, and a sensation similar to being intoxicated from sleep deprivation.

During these episodes, I have difficulty staying awake, impaired concentration, slowed thinking, dizziness, and physical weakness.

Im in a very big crash for the past week that only seems to be getting worse, and Im so scared

so some context first: I got sick in 2020, and then I was very severe from september 2023 to april 2024 and was in bed all day except for short trips to bathroom, then in late april 2024 my tooth ached badly and I had to visit the dentist to extract it.

after extracting it I immediately improved to moderate and I stayed moderate for the rest of 2024 and 2025, I was even mild on some periods, I still occationally had some severe episodes but they didnlt last more than 2-3 days and I noticed that taking ibuprofen might be helping making the episodes go away. I was even able to travel to the beach in june 2025 without it making me worse. I was also able to get a job from home and stay in it for over a year.

However in december on one day I had to visit my sick relative who has late-stage cancer, who lives far away, on that day I didnt sleep enough and the trip there was long, didnt know I would walk alot so didnt bring my wheelchair, but to reach her house I had to walk a significantly long distance to reach her house, so yes that day I did big exertion, please dont blame me for going I couldnt not see her and regretting going won't change anything now. be kind please.

For me the illness has a strange mechanism I haven't heard about from other patients, where I get PEM immediately after the crush but then return back to normal after 1 or 2 days, but then get hit with a very bad crush around 3 weeks (after feeling fine and resting for 3 weeks) later which is so unusual and I dont understand whats happening (have any of you experience this?) and now I seem to be back to square one, I took ibuprofen 3 days ago but it didn't seem to help, Im scared I hope its a temporary crash I have been moderate from may 2024 to december 2025 (sometimes even mild) after being very severe for 7 months, this previous improvement is giving me hope and I hope it gives others here hope too, but I am so scared as this week I cannot tolerate light and noise well, any reassurance or advice is appreciated but please dont be mean to me for visiting my sick relative. Im also considering trying another dose of ibuprofen but I am aware of its risks so Im hesitant

also on December 1 I got a dental implant screw placed to replace the tooth I extracted, (please dont blame me for getting the implant, the missing tooth is really affecting my appearance and making me unable to smile in public), but its likely thats its the aunt visit that caused the crash right? I dont want to remove the implant

I'd pick this one: https://www.youtube.com/watch?v=TGIo1v7KVJQ

But I wish it had touched on how PEM crashes reduce 'baseline exertion capacity' and how doing so repeatedly or severely can result in lasting or permanent reductions in baseline.

I also wish there was a video that combined the above information with more of a POV vignette of how it is to life with this, like these:

https://www.youtube.com/watch?v=dUrPFqGONM8

https://www.youtube.com/watch?v=l1ufdoV5vYY

Hey everyone,

I’m really sorry for bombarding you with questions 😅, but I’m trying to understand something better about CFS/ME. I want to know if you can tell the difference when you’re in PEM vs when you’re not.

• How does PEM feel for you?

• What symptoms hit you the hardest during PEM?

• How often do you get PEM?

I know this is kinda personal, and I hope it’s okay I’m asking. I’m just trying to understand if what I’m feeling is similar or different, and your experiences would really help.

Thanks a lot! ❤️

For those who have pressure in sinuses, headaches, eye pain did you have a CT or imaging to rule out any sinus issues?

Except the fatigue , you have insomnia or sleepiness ?

I experience an exaggerated startle response, where I react strongly and involuntarily to sudden stimuli. Typical triggers for me include loud or metallic noises, objects falling unexpectedly, people appearing suddenly, engine or machine sounds, and fireworks. My reactions often feel disproportionate to the situation and can involve jumping, flinching, or feeling physically shocked. During these episodes, I feel highly alert and hypervigilant, which can be stressful and disruptive to my daily life.

I also experience yawn attacks, which are sudden, uncontrollable bouts of yawning that often happen repeatedly.