Thread by @batteredoldbook

@usabilityliz @PaulGarnerWoof @ManvBrain @NYMag Looking back over my illness, time & again, my progress towards recovery has relied on me standing up for myself.

British medicine removed my food and shelter. That was the treatment for M.E.

I feel @davidtuller1 left me to suffer abuse for years. And this sums up M.E activism.

@usabilityliz @PaulGarnerWoof @ManvBrain @NYMag @davidtuller1 I cannot report suicidal thoughts to the British M.E Association.

I cannot report threats, and years and years of abuse.

@usabilityliz @PaulGarnerWoof @ManvBrain @NYMag @davidtuller1 The lives of M.E patients have been reduced to that of a football, kicked back and forth between doctors and activists who care more about the game than about the suffering.

@usabilityliz @PaulGarnerWoof @ManvBrain @NYMag @davidtuller1 Recovery from M.E is about standing on the touchline, looking left towards medicine's goal, looking right towards activism's and then calmly walking straight on forward.

I loved your messages and I hope to find many other people who put patient suffering before the game.

@usabilityliz @PaulGarnerWoof @ManvBrain @NYMag @davidtuller1 And to the others mentioned;

This thread is about an #MEcfs patient trying to report hunger to medicine, suicide to @davidtuller1 and abuse to the @MEAssociation.

And in general; this thread is about the absolute impossibility of reporting harm over what is a forty year period.

@PaulGarnerWoof @ManvBrain @NYMag @davidtuller1 @MEAssociation Every M.E patient should be able to report evidence of bullying, suicide, hunger and harm to doctors, activists, charities and journalists.

That's a minimum standard of behaviour for any professional engaged in #MEcfs.

@PaulGarnerWoof @ManvBrain @NYMag @davidtuller1 @MEAssociation Looking back I think this will be seen to be the moment that @profvrr's reputation was ruined by David Tuller's incredible behaviour towards #MEcfs patients.

@PaulGarnerWoof @ManvBrain @NYMag @davidtuller1 @MEAssociation @profvrr And I am so disappointed with British medicine. We'd made such progress.

Yes, the @NICEComms guidelines for #MEcfs were put together within a context of bullying now demonstrable within a court of law.

Yes, they have to go.

But that doesn't mean we go back to the old ones!

@PaulGarnerWoof @ManvBrain @NYMag @davidtuller1 @MEAssociation @profvrr @NICEComms The first time I was severely ill with M.E I was haunted by the character abuse and mistreatment from doctors.

The second time around as I lay slowly writhing in limp agony, my mind was brim filled with the vile abuse and wicked shun I was receiving from M.E community leaders.

@PaulGarnerWoof @ManvBrain @NYMag @davidtuller1 @MEAssociation @profvrr @NICEComms But I have never seen it as clearly nor felt as keenly as I do tonight: Neither medicine nor activism cares.

@PaulGarnerWoof @ManvBrain @NYMag @davidtuller1 @MEAssociation @profvrr @NICEComms The win-win scenario here has been mapped out for all of you, in 4 colours, 𝘸𝘪𝘵𝘩 𝘢 𝘫𝘰𝘬𝘦.

But the best you can all do is to sit there and ignore an M.E patient who's telling you that ruthless abuse made him think to end himself, over and over and over and over again.

@PaulGarnerWoof @ManvBrain @NYMag @davidtuller1 @MEAssociation @profvrr @NICEComms An M.E patient could not report evidence of suicidal ideation, abuse, threats and orchestrated shun to @davidtuller1.

At this point Vincent Racaniello, @profvrr, should have suspended Virology Blog pending investigation.

#mecfs #pwme #MyalgicEncephalomyelitis

@PaulGarnerWoof @ManvBrain @NYMag @davidtuller1 @MEAssociation @profvrr @NICEComms Same goes for the @MEAssociation. A patient shouldn't have had to make a formal complaint simply to feel able to report threats.

And medicine; An awful lot of people want to express harm from exercise treatment. How about you just listen? Hear them out?

ME's not rocket science.

@PaulGarnerWoof @ManvBrain @NYMag @davidtuller1 @MEAssociation @profvrr @NICEComms And this idea; "We don't have to listen because he's a troll!!"

What an exceptionally dangerous and anti-scientific way of thinking this is.

As you refuse "to feed the troll", so you socially isolate them, contribute to the orchestrated social shun, and leave them to suicide.

@PaulGarnerWoof @ManvBrain @NYMag @davidtuller1 @MEAssociation @profvrr @NICEComms It's not difficult Prof Racaniello. Science isn't about gossip and bullying:

You say "Can you prove you reported abuse to Dr Tuller in 2016?" and I show you the evidence.

You say "Can you prove orchestrated social shun from M.E community leaders?" and I show you the evidence.

@PaulGarnerWoof @ManvBrain @NYMag @davidtuller1 @MEAssociation @profvrr @NICEComms As you can see, Prof Racaniello, @profvrr, Dr Tuller has yet again chosen not to ask for evidence of serious abuse in M.E activism.

Of course, if you don't ask for evidence, then you're not going to see evidence, but this is not how we do science.

https://twitter.com/davidtuller1/status/1592550527627558912

@PaulGarnerWoof @ManvBrain @NYMag @davidtuller1 @MEAssociation @profvrr @NICEComms As I say, Prof R, there is a clear problem at Virology Blog; Evidence of abuse in activism is being overlooked; You should suspend your site pending investigation.

@PaulGarnerWoof @ManvBrain @NYMag @davidtuller1 @MEAssociation @profvrr @NICEComms Tuller's tweet could be used as an example to students of how not to interact with M.E patients.

The last 40yrs is basically the story of M.E patients trying to report harm.

We've often been blocked in exactly the manner he employs.

https://twitter.com/usabilityliz/status/1592639236746149889

@PaulGarnerWoof @ManvBrain @NYMag @davidtuller1 @MEAssociation @profvrr @NICEComms The tweet seems to provide Tuller with an escape route should ongoing abuse bring me serious harm.

"I told him to seek help!"

But in truth there's no therapy or treatment for me that can remove the threats and shun I receive. Only M.E community leaders could put a stop to them.

@PaulGarnerWoof @ManvBrain @NYMag @davidtuller1 @MEAssociation @profvrr @NICEComms Community leaders such as Prof Vincent Racaniello of Virology Blog...

https://twitter.com/batteredoldbook/status/1592567372443189249

@PaulGarnerWoof @ManvBrain @NYMag @davidtuller1 @MEAssociation @profvrr @NICEComms It's quite clearly ad hominem isn't it Prof Racaniello?, @profvrr.

#mecfs #pwme #MyalgicEncephalomyelitis #MillionsMissing #MyalgicE

@PaulGarnerWoof @ManvBrain @NYMag @davidtuller1 @MEAssociation @profvrr @NICEComms But when someone claims I'm an abusive troll running sock-puppet accounts, seeking evidence is important again to Dr Tuller! 😄

#MEcfs #pwme

@PaulGarnerWoof @ManvBrain @NYMag @davidtuller1 @MEAssociation @profvrr @NICEComms Here, @profvrr, is Dr Tuller's @nytimes co-author Julie Rehmeyer acknowledging the mistreatment I received from an M.E community leader.

@PaulGarnerWoof @ManvBrain @NYMag @davidtuller1 @MEAssociation @profvrr @NICEComms @nytimes We should all stand back and marvel awhile at the awesome power of evidential truth over ad hominem challenge.

M.E activists and allied researchers can call me any names they like, it changes the truth not one jot!

In science we deal with evidence, correct, @profvrr?

@PaulGarnerWoof @ManvBrain @NYMag @davidtuller1 @MEAssociation @profvrr @NICEComms @nytimes Evidence that I have been attempting to report abuse from #MEcfs community leaders to the @MEAssociation chair since March 2022.

That's about 7½ months and includes a formal complaint that I've yet to receive any conclusion from.

#pwme #MyalgicEncephalomyelitis

@PaulGarnerWoof @ManvBrain @NYMag @davidtuller1 @MEAssociation @profvrr @NICEComms @nytimes Evidence that I reported suicidal ideation as a result of ruthless abuse to the @MEAssocation as far back as May 2022.

Unredacted version on request, @profvrr.

@PaulGarnerWoof @ManvBrain @NYMag @davidtuller1 @MEAssociation @profvrr @NICEComms @nytimes Evidence of abuse received from M.E activists and community leaders. Screenshots on request, #profvrr.

https://twitter.com/ahelluvabird/status/1507059759001882624

@PaulGarnerWoof @ManvBrain @NYMag @davidtuller1 @MEAssociation @profvrr @NICEComms @nytimes I have evidence to support every claim that I make.

So, @profvrr, of course I have evidence for you that @davidtuller1 has been aware of my predicament since as far back as 2016.

#MEcfs #pwme #MyalgicEncephalomyelitis

@PaulGarnerWoof @ManvBrain @NYMag @davidtuller1 @MEAssociation @profvrr @NICEComms @nytimes Here we have evidence of this M.E community leader publicly demonizing a female M.E patient as "sick and crazy".

A particularly unfortunate turn of phrase as the Royal Free outbreak had been controversially associated with 𝘦𝘱𝘪𝘥𝘦𝘮𝘪𝘤 𝘩𝘺𝘴𝘵𝘦𝘳𝘪𝘢.

*Strong Language*

@PaulGarnerWoof @ManvBrain @NYMag @davidtuller1 @MEAssociation @profvrr @NICEComms @nytimes Here is his response to me when I challenged his behaviour at the time and his public message years later as he promoted and maintained the idea that I was trolling the #MEcfs community.

@PaulGarnerWoof @ManvBrain @NYMag @davidtuller1 @MEAssociation @profvrr @NICEComms @nytimes Prof Racaniello:

Here is @davidtuller1 acknowledging my report of ending 10 years of advocacy work due to personal attacks from M.E activists.

And here is @davidtuller1 describing bullying in M.E activism to @ProfRobHoward as a "meme".

#MyalgicEncephalomyelitis #mecfs #pwme

@PaulGarnerWoof @ManvBrain @NYMag @davidtuller1 @MEAssociation @profvrr @NICEComms @nytimes @ProfRobHoward Now, Prof Racaniello:

I would like to report evidence of what I feel is serious misconduct from the founder of a British M.E charity to you.

Further, I believe Virology Blog should be suspended pending an investigation into Dr Tuller's behaviour towards patients:

#MEcfs #pwme

@PaulGarnerWoof @ManvBrain @NYMag @davidtuller1 @MEAssociation @profvrr @NICEComms @nytimes @ProfRobHoward On the wider issue; I remain disappointed in medicine's silence.

From XMRV, through pacing & time-shifting to CBT/GET what unites us is that we're all coming up with ideas to try to save the active lives of millions of people.

Bullying opposes our work & it needs to be stopped.