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This happened to me. Back in 2020 a mental health worker told me that severe ME is like being stuck down a well and you've got to want to get better. She told me that cancer patients are more likely to survive if they have an optimistic outlook. When I e-mailed her to ask her for evidence for...

To whoever said you can't be sure it's permanent, if you exerted at age 20 and didn't fully recover after a few years, if you lived to age 80 would you still expect to miraculously recover aged 81? Where do you draw the line of reasonable doubt?

You're missing the point, you can be mild and still be a deteriorater. For example say your PEM threshold is 100 minutes of walking per day and your deterioration threshold is 110 minutes of walking per day. If you walk for 111 minutes and your PEM threshold becomes 90 minutes of walking per day...

What makes you think that's changed?

May be they had an undiagnosed illness that caused PEM?

The ME Association advocate for Ramsay-ME (muscle fatigueability) not PEM-ME. The charity was around before the term PEM had even been coined.

I'd say the concept of Depression replaced Neurasthenia and Somatoform Disorder replaced Conversion disorder which is now FND.

Merged thread Concerns About What MEAction Say About ME & EDS 2025 Just seen a video of an interview with the scientific director at MEAction and I disagree with some of what she said. Here are the main points: https://youtu.be/vrmsldi2l7o?t=631 - Says pacing is where you damage down...

https://www.michiganmedicine.org/health-lab/functional-nonepileptic-seizures-show-structural-abnormalities-brain-scans-study-shows https://www.frontiersin.org/journals/neurology/articles/10.3389/fneur.2022.803145/full Functional Seizures show up upon scans (I've not read the full articles due...

Seen it yesterday. Was happy that one patient mentioned having an MRI scan that proved they had brain inflammation.

I'm a bit confused with this video, isn't he jumping the gun by saying in the future we'll be able to get treated by this technology? How does he know it works, if it's not been fully tested yet?

It kept calling it Chronic Fatigue and claimed immune system modulators as a treatment. No mention of LTSE - Long Term Symptom Exacerbation from trivial exertion.

Same thing happened to me. I was stuck un a noisy house between 2001 and 2013, the sleep deprivation got gradually worse and as my Deteriorative Sensory Overload got worse, I kept getting disturbed during my sleep more and more. My doctor refused to write a letter to the local housing...

According to the Autism SubReddits, it's because women mask (Disguise their Autistic traits) more.

Except most doctors don't even fully believe in psychosomatic illness, they just say they do because it provides perfect plausible deniability in case you report them. "We're not saying the symptoms aren't real", "It's the power of the mind".

ME should not be defined this loosely as it catches a too heterogeneous group of patients which produces junk research.

That kind of comment is often disingenuous when coming from doctors and psychiatists. May be he stays within his limits. Also he could be getting PEM / PESE but still have a high deterioration threshold.

I do know my enemy. I browse the medical SubReddits regularly where doctors refer to us [unexplained illness patients] as whiney somatizers with s*** life syndrome, or malignant entitled crazies. They praise quacks like Susan O'sullivan, claim without good evidence that ME is psychosomatic, and...

Deteriorative Sensory Overload.

You can call it sensory exertion, I know it's not something active or willed. Instead you could call it sensory overload like people with Autism have.