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How did you all feel when you received your first disability payment? The reality hit me right in the gut. On one hand I was relieved that I was approved, but on the other hand upset that I was now considered disabled. It was a weird feeling when I was in the prime of my life.

It took me 15 years to accept that I would not be returning to work. I feel liberated every time I hear someone trying to start their car in the freezing winter months.

In the early 90's my support group suggested trying Qigong, it benefited the FM group but not those of us with CFS. I didn't have OI during that time and found Qigong very exhausting.

There are several medications that can improve POTS symptoms and are supported by small prospective studies or retrospective case series. The patient can be SAFELY monitored. From the OP original link: Results: Of the 101 patients taking aripiprazole, 75/101 (74%) experienced an improvement...

There are tests for POTS to determine whether a patient responds to a medication. They can be properly monitored. What tests were done for pwME taking Abilify? What is ME? It's a shot in the dark.

IL-17 controls central nervous system autoimmunity through the intestinal microbiome. https://immunology.sciencemag.org/content/6/56/eaaz6563

Ah ok, that would make sense if you were still able to work. I was diagnosed with 'atypical' ME because I didn't have the typical pain, neuro and insomnia issues as most patients. I didn't have many symptoms except not being able to stand or walk for more than 5-8 minutes, which would fit...

You were actually diagnosed with 'moderate" ME? How do they determine this? I don't use labels, but if I did, I would describe myself as 'moderate' as long as I'm able to lie down most of the day and not experiencing a viral re-activation. Put me in an environment or situation...

100% agree. This was an excellent post by @mango

Does Abilify increase alertness or reduce (physical) fatigue by 50%? I have taken low dose (25mg) trazodone for sleep. I've asked pharmacists, ME doctor and other specialists why a low dose antidepressant works so well for sleep, but no one knows the answer. They no longer rx higher...

Again, I don't know what was written on twitter, but when pwME have been harmed, dismissed and gaslighted for decades, then that's the frustration playing out. As a HEALTH care professional, he should at least try to enlightened himself regarding the history of ME (particularly in the UK)...

Has PG come out and even acknowledged our lived experiences as pwME after reading all the well written comments addressed to him on the BMJ articles? If not, then he deserves everything coming to him, he put himself 'out there'.

I find this very difficult to deal with as well, but thankfully I live alone. When my sister visits for 2-3 weeks every year is when I'm reminded that I can not follow a recipe or cook and talk at the same time. Thankfully I recover from cognitive energy deficit much quick than physical...

Narcissist never apologize and love to block people. They always need to feel loved. Trust me, I grew up with one.

No, my CFS diagnosis might be reversed to a diagnosis of depression/anxiety instead. Did you forget the stigma attached to CFS? Mental illness is treatable and might require that I be an active participant in treatment? If the insurance company doesn’t see evidence of best practices...

Posting medical information is ok, but giving direct medical advice on social media/reddit is not.

@leokitten Prescribing this medication might even jeopardize your diagnosis if your disability insurance reviews your case in the future? There is no biomarker for ME, it's based on your medical history, onset and the expertise/experience of your ME doctor. Personally, I would feel very...

Has Abilify been used off-label for other 'fatiguing' type medical conditions? This has nothing to do with being 'adult'. Come on now. Your ME doctor would have to truly understand what is occurring in your own particular case in order to even consider it.

RIP :heart:

Oregon health workers who got stuck in a snowstorm on their way back from a COVID-19 vaccination event went car to car injecting stranded drivers before several of the doses expired.