Blog: Not an Advocate. Not Your Silver Lining Porn. Just Desperation. - Anil van der Zee

[Andy]

A short blog which resonated a lot with me.

"I’m not a patient advocate. I’m not an activist. I’m just a patient that shares out of sheer desperation as much about my disease, or rather the whole shit show circus surrounding it, so I can hopefully, one day, return to a more normal life."

Click to read full text

 

[V.R.T.]

A short blog which resonated a lot with me.

"I’m not a patient advocate. I’m not an activist. I’m just a patient that shares out of sheer desperation as much about my disease, or rather the whole shit show circus surrounding it, so I can hopefully, one day, return to a more normal life."

Click to read full text

Yeah this really resonated with me too.

 

[Trish]

And me. Thanks Anil.

 

[obeat]

Spot on!

 

[JellyBabyKid]

Yes. Absolutely.

sheer desperation

Exactly.

 

[Chandelier]

Sarah Boothby on Bluesky:

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sarah boothby @swastrosarah.bsky.social​

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"While raising awareness for ME also keeps me busy, I do not enjoy doing it.​

I don’t enjoy having to constantly write about it, debunking shoddy science"​

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I unreservedly share this attitude.​

I hate doing it.​

It makes me far too angry for joy.​

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"or create awareness art about this disease, so that people get what ME is about. So that we’ll be treated according to what this disease deserves."​

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Anil's creative imagination is being wasted by medical stupidity & journalistic laziness.​

It's infuriating.​

Talent being Trumped by wasters.​

FU:ME​

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[Vertical]

A short blog which resonated a lot with me.

"I’m not a patient advocate. I’m not an activist. I’m just a patient that shares out of sheer desperation as much about my disease, or rather the whole shit show circus surrounding it, so I can hopefully, one day, return to a more normal life."

Click to read full text

After 40 years with this illness, progressive to the point of being nearly sofa bound and having become a reluctant in-depth researcher along the way, I am concluding that MECFS is a moniker for the now proverbial cluster of similar neurological manifestations which we all arrived at through various bio-tributaries and tried to assimilate it into one identifiable condition. IMO, it is not. That I contracted it after having vacationed in the Lake Tahoe area in 1985 is an interesting red herring. Yes, a shit show path full of trials and tribulations that didn’t add up to much - treat the f’ing symptoms - the cause is multi-farious, albeit likely neurological related, but what isn’t?