Lilan Patri

My brain is torn lace Christmas lights / Beads quiver / I watch them blow, one by one by one

[Lilan Patri @loupdeloopy]

Petition for the Immediate Resignation of German Foreign Minister Annalena Baerbock Sign the petition https://t.co/ulVmpjcdQH #diem25 #BaerbockResign

[Maryann Spurgin @SpurginMaryann]

"Anything written about ME can attract immediate skepticism, because the facts about ME, especially about severe and very severe forms, are so extreme that meticulous accuracy sounds like the wildest hyperbole."
(from an article by Nancy Blake)

[ME/CFS Science @mecfsskeptic]

1) Just published a new blog post on what severe deconditioning looks like and how it is different from ME/CFS.
https://t.co/lCqlqdTos7

[Anil van der Zee © @AnilvanderZee]

Great article. As a former athlete I would love to see an article about elite athletes with ME as well. The void I fell in having no MDs/researchers showing any interest in why I became more ill after exertion has been heartbreaking. My life didn't matter.
https://t.co/ICh9hNtS6J

[Lilan Patri @loupdeloopy]

I just signed a @theactionnet petition: Not Another Bomb: Sign-On Letter. Sign here: https://t.co/St9SPdelnr

[Nia | The Chronic Notebook @chronicnotebook]

Me to myself at the doctor's: Ok smile but not much or you'll look too happy, stand up for yourself but not too hard or you'll seem rude, convey how bad this is but don't get emotional or they'll think it's in your head and don't use medical terms, they'll think you Googled it...

[Mark Ruffalo @MarkRuffalo]

NEW YORK: Our version of uncommitted is #LeaveItBlank! Join me and submit a blank ballot in the April 2nd Presidential primary to tell Biden: New Yorkers want a lasting #CeasefireNow! Learn more at https://t.co/EM7OOgAfXj

[Jeannette Burmeister @JKBurmeister]

Kudos to @twoShaws for this find: Walitt is head of NINDS Interoceptive Disorders Unit. His focus: disorders characterized by aversive Sx after exposures, e.g. infections. Translation: the new & improved version of “false illness beliefs.” NIH unleashed him on ME, GWI, & LC pts.

[☀️👀 @zei_squirrel]

buried on page 15 in its 23 page "report", the UN's Pramila Patten admits that all her information comes directly from the Israeli regime, and that it blocks UN agencies with an actual investigative mandate from doing independent investigations into their propaganda claims

[Read Jackson Rising @JPHilllllll]

Not just the headline, this entire New York Times article on the man who just self immolated does mentioned his comments that he can no longer be complicit in genocide. Not once. It does not mention any direct connection between his action and Israel’s genocide in Gaza.

[Jeannette Burmeister @JKBurmeister]

You know what's suddenly become even more dangerous? An ICD code for PEM. Because PEM is what's being psychologized by NIH through the false and reverse-engineered claim that PEM is an aberrant experience of "fatigue" caused by faulty brain wiring.

[Jeannette Burmeister @JKBurmeister]

NIH clinician & researcher, Straus, turned violent against ME pts in 1987 during a seizure likely resulting from his brain cancer. Straus is in large part responsible for what was done to ME. NIH didn’t step in then and isn't stepping in now when clearly something is very wrong.

[@[email protected] @Imani_Barbarin]

If they’re calling ALL forms of protest a mental illness, it might be worth asking what society does to the mentally ill.

[Hillary Johnson Author, Journalist @oslersweb]

NIH: no difference in cognitive performance on neuropsych tests; no difference in NK cells; no difference in 40 minute (!) tilt table testing. R U kidding me? And NIH claiming their work is best ME study ever?

[Lilan Patri @loupdeloopy]

@KirstieSivaP I call myself housebound and mostly bed-bound. I might be bed-bound due to a crash, but more often than not I’m bed-bound to prevent a crash. I believe in the specificity of language, but in a world without the patience for a deep-dive into ME, I feel my description suffices.

[Jeannette Burmeister @JKBurmeister]

Effort Preference is a way to test for anhedonia, the core symptom of Major Depressive Disorder. The unsupported introduction of Effort Preference to the ME world may well be laying the groundwork for more destructive studies, characterizing ME as a somatoform illness. FN 15

[Mona Chalabi @MonaChalabi]

Please listen to this one hour-long episode on journalistic censorship of Palestine that came from a four hour-long conversation 🌚

[Carmen Scheibenbogen @C_Scheibenbogen]

Endlich: 180 Millionen für Versorgung, Erforschung und Therapiestudien

https://t.co/EMmrOEFR6E

[Putrino Lab @PutrinoLab]

Please help to support David for another year. His work has been crucial in shutting down the minimizing and psychologizing of #MECFS, #LongCOVID and other complex chronic illnesses for many years. An incredible ally. Let’s all help to keep him doing what he does!

[Nia | The Chronic Notebook @chronicnotebook]

Chronic illness be like : if you hide your pain we will doubt you, if show your pain we will call hysterical. Sound good?