Angry Emails to the NIH -- Good or Bad? (Split thread)

[John Mac]

I said some researchers have chosen not to work on ME because they didn't want to deal with the patient community. How do I know this? Francis Collins said it to me when I talked to him last fall.

Sorry, but that's just hearsay

 

[viggster]

Sorry, but that's just hearsay

You conveniently chose not to quote my next sentence.

 

[BurnA]

Sorry, but that's just hearsay

Regardless, would you continue in a job if you were receiving malicious emails?

Individuals sending emails to other individuals is not a worthy strategy and I would say detrimental to the cause. I am all for protest when it is required, and if that means taking to the streets that's fine, but personal emails are not ok.

I don't see why people don't have a bit more faith in our advocates to get any message across. If this isn't working then this is an area that should be fixed as Brian alluded to.

 

[John Mac]

You conveniently chose not to quote my next sentence.

Regardless, would you continue in a job if you were receiving malicious emails?

Individuals sending emails to other individuals is not a worthy strategy and I would say detrimental to the cause. I am all for protest when it is required, and if that means taking to the streets that's fine, but personal emails are not ok.

I don't see why people don't have a bit more faith in our advocates to get any message across. If this isn't working then this is an area that should be fixed as Brian alluded to.

But is it true that researchers have refused to work in the ME field because of threats?

Do we have names?

 

[viggster]

Regardless, would you continue in a job if you were receiving malicious emails?

Individuals sending emails to other individuals is not a worthy strategy and I would say detrimental to the cause. I am all for protest when it is required, and if that means taking to the streets that's fine, but personal emails are not ok.

I don't see why people don't have a bit more faith in our advocates to get any message across. If this isn't working then this is an area that should be fixed as Brian alluded to.

Thanks for being a voice of reason. Does anyone think that the people at NIH working on ME have not heard objections to Walitt et al? They have heard those objections in person, when advocates visited recently. They have heard those objections in many personal emails written in varying tones, from calm and reasoned to ugly and hateful and personal.

 

[Sasha]

Vicky Whittemore is a fantastic ally for us. She is close to someone with a "contested illness" so she knows what that experience is like. And yet, Vicky has received nasty messages regarding Brian Walitt...and she had nothing to do with him being on the upcoming study. That's the kind of negative behavior that can turn an ally sour.

I agree she's terrific and this horrifies me.

NIH has to get better at communicating with the patient community. And we would be well served by somehow figuring out how to police our own community better. I don't have the health or energy for it.

Unfortunately I think that's an impossible task. It's the internet! None of us can control the internet.

I see positive action being taken [...] There are more good things happening at NIH than is publicly known.

I understand that you can't tell us everything that you're being told, and I'm very pleased to hear about this. But I can understand the fears of those who aren't privy to the same information (as I'm sure you do, even while you're frustrated by some of the more extreme cases). I share some of those fears and it's only more information, and a remedying of some key things, that will reassure me. But as you say, this is a marathon in which we won't get everything we want. It's just too soon in the day for trust to have been restored.

In the meantime, I hope whoever is sending offensive messages to the NIH will stop.

 

[viggster]

I share some of those fears and it's only more information, and a remedying of some key things, that will reassure me.

This is reasonable. And yet when the NIH updated its CFSAC response the other day to OFFICIALLY CONFIRM that RFA's are on their way, the community hardly noticed. Why weren't Erica Verilla, Jennie Spotilla, J Burmeister, etc. etc. taking to their blogs to note that NIH had officially confirmed RFAs? Why is that important, positive information not being shared widely?

 

[Sasha]

This is reasonable. And yet when the NIH updated its CFSAC response the other day to OFFICIALLY CONFIRM that RFA's are on their way, the community hardly noticed. Why weren't Erica Verilla, Jennie Spotilla, J Burmeister, etc. etc. taking to their blogs to note that NIH had officially confirmed RFAs? Why is that information not being shared widely?

I hope it will be shared - I can't answer for anyone but that information is pretty recent so I hope we'd see it getting disseminated more widely in the next few days.

TBH, I think the announcement was hardly noticed by the community because it wasn't announced, as such, which was a bit of a pity - it was done by updating an existing page, which is about as low-key as you can get. It's the sort of thing you'd only know to look at if someone told you (unless the NIH issued some sort of announcement).

 

[viggster]

I hope it will be shared - I can't answer for anyone but that information is pretty recent so I hope we'd see it getting disseminated more widely in the next few days.

TBH, I think the announcement was hardly noticed by the community because it wasn't announced, as such, which was a bit of a pity - it was done by updating an existing page, which is about as low-key as you can get. It's the sort of thing you'd only know to look at if someone told you (unless the NIH issued some sort of announcement).

True, but I posted it here and on Twitter, and other people retweeted it. ME Action did a post on it. The information is out there for anyone paying attention...and the ME bloggers seem to notice every little thing...at least every little tidbit that confirms some of their ideas that NIH is out to get us. Information that destabilizes that world view doesn't get as much air time.

 

[Sasha]

True, but I posted it here and on Twitter, and other people retweeted it. ME Action did a post on it. The information is out there for anyone paying attention...and the ME bloggers seem to notice every little thing...at least every little tidbit that confirms some of their ideas that NIH is out to get us. Information that destabilizes that world view doesn't get as much air time.

Then let's hope we soon see the word getting spread...

 

[duncan]

Talk only counts so much.

Like someone alluded to not so long ago: Trust but verify.

Let's see some action.

Let's see the NIH abandon the psych contingent.

Let's see some tightening on which patients get qualified as ME/CFS patients.

Let's deep-six the Lyme control.

I think my wording is measured. I think my requests, which echo many others, are reasonable.

I do not think any call for "policing" the patient community is reasonable. I reject what it means by extension.

I stand by advocates such as JBurmeister.

I will not diminish or besmirch widespread patient concerns by referring to them as conspiracies.

I will appreciate the positive impact NIH individuals such as Vicky Whittemore have had.

I will continue to advocate for the removal from the study of those I think that can harm our communities.

And I will continue to discuss these and other matters with members of THIS community, some of whom I agree with, some disagree, because that is the nature and purpose and beauty of the Forum.

 

[John Mac]

I do not think any call for "policing" the patient community is reasonable. I reject what it means by extension.

Amen to that

 

[Aurator]

But is it true that researchers have refused to work in the ME field because of threats?

The answer to that is immaterial to me. If I were a researcher and I'd received personal emails from patients cautioning me or even just appealing to me about certain aspects of the forthcoming research (no actual threats would be required), and I'd read some of what has been said on PR in the last month or two about it, I'd be having a serious rethink about whether I really wanted the potential grief coming my way from participating in research in this field as opposed to a different field where it would be almost guaranteed the grief from patients would be zero. Why would I want my wages and potential grief to go with them, when I can have just my wages?

 

[viggster]

I will not diminish or besmirch widespread patient concerns by referring to them as conspiracies.

Well, there are reasonable patient concerns and then there is this, which is one of many posts and replies on a public (open) Facebook wall that run in the same vein.

My favorite comment on this Facebook thread, from a PR member: "How far up the ladder does it go?" It goes all the way past Barack, past the Skull & Bones, past the Illuminati....all the way up.

 

[duncan]

Would you advocate censoring? Regardless of what I agree or disagree with when someone writes something, I find that the notion of censorship scalds my integrity. I have to believe it does you, too, as a writer.

Policing a Forum is anathema to freedom of expression.

Dissent or approbation are essential components to progress, I think. As are agreement and encouragement.

Degree matters, but this is difficult, and personal, and subjective.

 

[viggster]

Would you advocate censoring? Regardless of what I agree or disagree with when someone writes something, I find that the notion of censorship scalds my integrity. I have to believe it does you, too, as a writer.

Policing a Forum is anathema to freedom of expression.

Dissent or approbation are essential components to progress, I think. As are agreement and encouragement.

Only governments can censor. I want to stop abusive emails being sent to NIH staff. I don't know how to stop that. And I want to stop misinformation being spread - such as the idea that Walitt is the study leader.

 

[worldbackwards]

My favorite comment on this Facebook thread, from a PR member: "How far up the ladder does it go?" It goes all the way past Barack, past the Skull & Bones, past the Illuminati....all the way up.

The man upstairs?

There is no way of policing this stuff in the Twitter age and to try would only feed more of it. But it is a continual pain to me that people entertaining these opinions and putting them about fall to see that all they manage to do is place ME advocacy in the David Icke lizard people camp.

I wouldn't extend this point to much of the criticism directed at the NIH study, but those who harass good people and use selective quotes because they've had nothing else to get outraged about for five minutes might also take heed.

 

[John Mac]

I want to stop abusive emails being sent to NIH staff.

Yes, I think we would all agree with that

 

[Sasha]

I want to stop abusive emails being sent to NIH staff. I don't know how to stop that.

I think "policing" isn't the approach to take. I think that all that we can do is try to set the tone we would like to see and to make our arguments as to why abuse is going to be counterproductive.

If ten of us are being constructive (which doesn't rule out criticism) for every one of us who is being abusive, that will surely be effective in encouraging NIH to do the right thing while making them aware of our legitimate concerns.

 

[duncan]

I don't know how to stop the emails, either. I do not agree with that. By the same token, people have a right to voice their opinions. We can only hope they do so in an appropriate way.

@viggster, when do we as a community stop being held accountable for a few peoples messages?

I would hope to God the people at the NIH have thick enough skin to weather criticism. They hold public posts, and their decisions impact, in our case, maybe millions. Sheer odds alone suggest they will get some bad feedback.

Having said that, all things in moderation.

Hmmm...I bet they are getting supportive emails, too. Might they balance out?