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Thank you so much for this, JE.

ffs

I wanted to add that the strong scene where she has to be lifted to the ground from her wheelchair by Omar was intended I think to illustrate to the audience what PEM looks like, as she had just been at a loud, crowded parade/festival, which she had been able to attend (in her wheelchair) due to...

W00t! Now a global action to this end!

https://apnews.com/19f6bfec15a74733b40eaf0ff9162bfa (I sure wish journos would stop calling it "pot", btw) This old fart who doesn't even know what it is or does, has just gone against state rights and has repealed the existing (imperfect) protections against the feds raiding legal Cannabis...

I'm sorry I forgot to answer you in the other thread. I don't recall much but I know she showed herself unable to walk, tolerate noise, light, touch. She talked about how her brain felt like it was misfiring. She showed herself unable to talk, and mentioned not being able to write her own...

I didn't see anywhere to tell them of existing medical conditions--did anyone else find this?

I'm starting to think the BPS people have photos of everyone else wearing tutus and having sex with animals or something :bag:

I'm also not certain it is ethical to have a medical professional not of the parents' choice at the meeting that was already likely high-tension for the parents; not to mention the medical professional doing this "evaluation" also happens to head up a clinic that also happens to be recruiting...

Thank you Val. What a bunch of corrupt cronies. So over a world that supports and encourages this way of being.

Am very unwell, can someone TL;DR please? I don't understand how the data will not be released if it is a condition of publication.

So much great feedback here, thank you all so much. I'm stupid tired right now so can't reply just yet--just wanted to thank you all for chiming in. I have questions, maybe tomorrow.

The problem is the more we respond to her TED talk, the more she and they get to say "See? I was right! I was right! See the crazy loons coming out of the woodwork like I said they would? Pay no attention to the content of their harping, they're lunatics with an agenda. We're such brave...

The reason it might be useful to try both of these now is bc the landscape is entirely more fertile at this moment. The momentum is building in a way that is adding credibility to us as a patient group and disease, as well as making it "safe", and even possibly "hot" for journalists to pick this...

100% agree with this eloquent riposte. You speak for me :cool:

All I can say to his tweet is: Word

You need to read all the tweets (there are a lot!) as she fully calls her out, repeatedly.

Have you written to her? It might be really good to send her quotes she can use that can't backfire.

*shudder* I felt like taking a long shower after reading those quotes.

Haha, that I did! She does not go into it much iirc other than mentioning the newer CDC name is stupid and misleading (paraphrasing, maybe someone with a better memory can chime in.) I think greater focus on that is to come.