journals.lww.com/neurotodayonli…

#mecfs #Neurology
#milionsmissing

'Scottish singer Annie Lennox has donated handwritten lyrics of the 1983 Eurythmics hit Sweet Dreams to a charity auction raising money for medical aid in Gaza'
via The National Newspaper

😭😭😭😭😭
All the feels

It's amazing, a truly incredible day piece of work

#BabyReindeer

When I was first told I'm autistic 5 years ago, I was miserable wondering why I was so broken.

I was on the phone crying hard while drunk asking, 'Why is everything so easy for everyone else but so hard for me?' That's when I was told I'm autistic.

I didn't know anything about

Department for Work and Pensions you #pip enquiry line is still broken. What’s going on? How
On earth am I meant to contact you? I am a carer and I haven’t got the time for this :(

#PIP #PIP Assessment two hours thirty minutes for a PIP review is unacceptable DWP Wes Streeting MP apparently it is because I have a lot of disabilities diagnosed by specialist in their field, so why the two hour and thirty minutes interrogation of a British citizen Rishi Sunak 🤔

Anyone know if the #dwp get access to you medical records during #pip applications?

Turns out the district nurses (when doing b12 3 monthly at home) add all kinds of detail I had no idea about and it gives a false picture. Devastated

Are we heading back to the era of some disabled children being ‘uneducable’?

A decade of insufficient funding, increased exclusions, lack of special places and Safety Valve?

How many disabled kids have no school place at all? Fuck the inclusive education dream, this is reality

Here's a paper:
ncbi.nlm.nih.gov/pmc/articles/P…

No, I won't ever be doing it again! BTW this was nicotinic acid, not niacinamide

#gilbertssyndrome #mecfs #LongCovid #medtwitter #liver #liver twitter

I took high dose niacin for 3 months 2yrs ago (bottom pic) against (albeit fatter) legs today

Later learned it can cause elevated bilirubin & even haemolysis

Now I'm suspecting I was proving my under the radar Gilbert's Syndrome. Never yellow eyes. Thoughts?

#mecfs #longcovid

Seems we can no longer report for misinformation so sadly this idiot with his misinformation (and it seems not even understanding his sadly paralysed cat may well be in intense pain) gets a block from me.

I'm sad for his cat, and parents of autistic kids believing his bullshit

4 things about autism you may not know...

1. Autism is hereditary – Some studies have estimated that up to 90% of the variance in autistic traits is due to genetic factors.

Today I actually feel quite 'well' like pretty normal

Obviously I'm still laid up in bed like every other day, but on 'sense of wellbeing' I'd score quite high today.

Maybe after passing pigmented gallstones 3 days ago...!

New #MECFS scale just dropped

Full text published today:

Longitudinal cytokine and multi-modal health data of an extremely severe ME/CFS patient with HSD reveals insights into immunopathology, and disease severity

Free:
frontiersin.org/journals/immun…

Funded by the Open Medicine Foundation

#MEcfs #CFS #PwME

1/

Yesterday I had an assessment with a DBT unit called Hope House run by Elysium Healthcare (Yes I’m naming and shaming them).
I’d like to highlight 2 practices they openly brag about within their treatment for women with ‘EUPD’.

1) behavioural incentive pathway
2) blank face 1:1

Author: Jessica Jocelyn
Book: Girl (Remastered)

#adhd #latediagnosis

BALLS!

... or those of use who use our Garmin for sedentary heart rate pacing

#justsaying #garmin #Garmindown #cfs #mecfs