Special Report - Online activists are silencing us, scientists say Reuters March 2019

http://occupyme.net/2019/04/05/dr-collins-transcript-of-remarks-on-april-5-2019/

There is thread about it : https://www.s4me.info/threads/blog-occupy-me-i-want-to-believe-dr-collins-but-i-don’t.9130/

Collins was speaking at this event : https://www.s4me.info/threads/nih-a...n-me-cfs-meeting-4th-and-5th-april-2019.7745/

 

An updated IOM report which includes a section on treatments would also be useful.

 

Not in so many words but he said that it was up to us to keep applying pressure, knowing full well that we are unable to do so and that it has led us nowhere despite decades of trying. The only meaningful change happened when institutions did their job, like the IOM report. Nothing that we do on our own has any effect and he knows this.

Then he talked about hope without action being demoralizing and... announced no action. Funding is actually going down next year.

So he didn't say those words but might as well have.

 

So now the guy who wrote the slanderous article implying, once more, some unspecified misconduct blocked everyone on Twitter who corrected him. Most of us only politely sent him published research. And of course he's supposedly a "skeptic", somehow they always manage to be the most gullible out there. What pathetic cowards these people are.

Random idiots can publish lies about us and not give a damn. Doesn't matter that it's slanderous, as long as they don't name names it's all good, damn the consequences for us. Which in some cases is death following years of abuse and willful neglect that would amount to criminal behavior if we had a "respectable" disease and not on some blacklist of diseases to hate. How great is that? This is ridiculous. I mean, even Reuters isn't bothered by publishing misleading claims and basic factual errors. The editors stand by those.

What the hell are we supposed to do? And Sharpe knows damn well what he's doing, that he is hurting us on purpose, and no one is bothered by that, not even the university that employs him has issues with one of their professors unethically slandering sick people begging for their lives and repeating baseless lies that have disastrous consequences.

 

There is one rules in place for the protection of people yet none of them apply to people with ME. I have wondered about it for years.

Before anyone enters a clinical trial they must be warned of all possible harms they may experience but not in ME. Patient surveys may be self selected so only people who experienced a bad effect will answer them but the absolute numbers are still large even if the proportions do not match the wider population. Yet participants are no warned.

Ethical research on children, forget it. I could go on and on but you all know what I mean already.

 

https://twitter.com/user/status/1160414376727404545

 

Me too!

 

https://twitter.com/user/status/1169888241731784706

 

Why would any patients want Kate Kelland reporting on anything to do with CFS?
edit: Not that I think something like this would make her any worse.

 

I think the questioner was being sarcastic towards KK, saying that given she seems to consider herself such a self-proclaimed expert on ME in her writings, then she cannot fail to know about the OMF Symposium and the scientist there. Effectively challenging KK to abandon her BPS-biased crap and get in touch with some real science and scientists.

 

Yes, but that's a challenge we don't want her to take up!

 

Why not? If she cocks it up and slants her reporting it will be very easy to expose it for what it is, and show the shallowness and falseness of her reporting. And if she genuinely became better enlightened about some of the real science of ME that would also be good; would not be the first time an enemy transitioned to ally. I like this person's challenge. In truth I doubt KK has the bottle to take it up anyway.

 

It may be easy to expose it, but not to persuade anybody to take note of what is exposed.

 

Agreed. I still think it would be a mistake to be afraid of challenging someone like KK to look at real science and scientists. She should be challenged to run sanity checks on what she writes, and is going to write.

 

Just thought I should make clear that it's not like I'm really concerned by the posted tweet or anything. I can post about being annoyed by some of the tweets I see on twitter, so it could be people think I am here.

I also think Kelland has shown she is terrible and that her bad work effectively harms us though. I don't think that there's any real chance of her ever doing good reporting on CFS.

 

It is important that the likes of her and our friend Michael are shown to be unwilling to educate themselves about the latest science of a disease they claim to have expert knowledge of. They can only state there is no physical effects because they ignore every opportunity to find out that there are such things.

 

Merged thread

Rolling eyes. Michael Sharpe is at it smearing patients once more.

https://web.archive.org/save/https:...-quits-because-online-trolls-are-too-hostile/


It is quite nasty. Didn’t he announce before he was quitting before and why didn’t he leave then? Playing victim again?

Just a section of it here...

Edit to add: this is the definition of gaslighting.

 

Classy news outlet he's chosen to announce it in this time. If that's the only place he can get his resignation announcements published now I find it most encouraging. Next to a study showing that marijuana gives women better orgasms, and stories about a vicar getting caught having affairs with two women and 250 Amish men carrying a barn (you'd think they'd have included a picture with that).