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

[BurnA]

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

I don't think anyone is talking about censoring but seeing as you brought it up....Julie Rehmeyer did receive criticism from some members of our community for requesting to interview Walitt.
That gives you an idea of the attitude of some of the more vocal members of the community.

 

[duncan]

I remember.

Sigh. I don't have the answers. I only know what scares me for us on a visceral level.

 

[BurnA]

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

Yep. I think the appropriate way has to be through an advocacy group.

If a structure could be setup to formalize communication channels I think this problem will diminish. Then there is no excuse for sending emails to NIH staff.

 

[mfairma]

I'm a bit late in posting this comment, but if our success is contingent on the community somehow regulating unknown, unhinged actors to be nice to the government, then we are in a really weak position. I am bothered always, first and foremost, that our advocates spend too little time trying to fix that position, but in focusing on each little issue in front of us, without sufficient regard for the whole.

 

[duncan]

I also worry about acting as the de facto filter for ME/CFS patients. We do not have that right, nor should we.

I would prefer patients and advocates not send personal emails, but I respect their right to do so, and I appreciate that their right supercedes my concerns.

But shouldn't, too, the NIH investigators appreciate that? I have to believe this sort of thing happens in MS communities and Parkenson's, and....

Criticism is important. Again, degrees. I like to imagine NIH researchers get that. I would hope they do; this is not academia they inhabit, or a corporation. They serve US citizens, and with that comes good and bad. Just like being a NY Mets or Jets. It comes with the job description.

 

[BurnA]

I would prefer patients and advocates not send personal emails, but I respect their right to do so, and I appreciate that their right supercedes my concerns.

They may have the right but I think the message needs to get out that it is counter productive.
I really hope researchers aren't wasting valuable time reading angry emails when they could be researching.
The advocacy groups should be more vocal on this topic and re-enforce the idea that they should be the ones getting the emails because they can take these concerns to the right people. It's a far more efficient process.

I think that's the message we should all be giving, both to other patients and advocacy groups.

 

[worldbackwards]

I have to believe this sort of thing happens in MS communities and Parkenson's, and....

This is a touch disingenuous. I'm sure that people with those illnesses have their research priorities that they communicate to researchers, but they don't have anything resembling the charged political background that ME has. As such, they presumably don't generate the same degree of angry criticism from people understandably scared of being stiffed once again and, in some cases, intent on taking offence at everything they can.

 

[duncan]

Not disingenuous, I assure you. But agreed, I may have been comparing apples with oranges. Poor choice on my part.

 

[Michelle]

During the XMRV period, I became so horrified with the way good people like John Coffin were being treated at this forum that I stopped participating for a few years (to be fair, my health was deteriorating considerably too). Not that my opinions were in any way so vital for the survival of PR - . And the level of discourse at PR has indeed improved considerably since then. So needless to say I tend to be someone who shares @viggster 's frustration with constant streams of angry ALL CAPS emails and tweets and a puzzling insistence that working with the DHHS in any form is somehow bad for our community because they are clearly OUT TO GET US!!!

But...

I would note that the rhetoric of groups like ACT-UP and others during the AIDS crisis was at least as equivalent in its aggressiveness and offensiveness ("GUILTY" posters with Anthony Fauci, for instance). And they didn't even have the Web yet to fuel rumors and anger.

As unpleasant as horrible emails are, given the level of suffering and 30 years of neglect encouraging that anger to fester, I don't see how such rhetoric can be avoided. I think it should be called out, and gawd knows I certainly would disagree with it. But I would also hope that folks at the NIH know how to use their delete buttons.

Also I would agree with other folks that we are very lucky to have you as part of our community, @viggster .

I am bothered always, first and foremost, that our advocates spend too little time trying to fix that position, but in focusing on each little issue in front of us, without sufficient regard for the whole.

This. So...yes...This.

We are far too reactive as a community rather than developing a coherent, holistic set of goals and strategies to meet them.

 

[Michelle]

Oh one other thing, I would note that Jennie Spotila (whose PR handle I can't remember at the moment) has not been posting as much as in the past due to health and family stuff.

 

[mfairma]

We are far too reactive as a community rather than developing a coherent, holistic set of goals and strategies to meet them.

I wish this would change, but I don't think it will. The average advocate is almost entirely reactive and the better advocates seem comfortable doing their own thing, working piecemeal to be proactive. We have lost many opportunities by the failure to think and act strategically. It is upsetting.

 

[searcher]

As unpleasant as horrible emails are, given the level of suffering and 30 years of neglect encouraging that anger to fester, I don't see how such rhetoric can be avoided. I think it should be called out, and gawd knows I certainly would disagree with it. But I would also hope that folks at the NIH know how to use their delete buttons.

I have spoken a few times with Vicky at NIH and once with someone in communications at NINDS, but haven't spoken with anyone directly involved with the intramural study. My conversations were primarily about the NIH having more transparent, open communications with the community and about incorporating patient input into all processes. I did my best to convey how damaging the 30 years of neglect and hostility from the entire medical establishment has been so they can understand why they are getting so many angry messages from patients. And I also did my best to convey how Walitt's interviews and papers are emblematic of that history. I know that other advocates have been trying to get across the same message.

That said, I do agree with many on this thread that personal, attacking messages are counterproductive even though I am sure they are cathartic to send. I haven't posted about the messages publicly because I didn't want to sound like I was trying to police anyone, and I've been stepping back from advocacy. I know researchers and others at NIH have delete buttons, but I am sure it's still difficult to receive angry, accusatory emails especially for the researchers who aren't in political positions and who have been trying to help. As @Sasha said, most patients aren't in a position to know what's happening behind the scenes to really understand that there are people going to bat for us at NIH, and due to the history-- and Walitt's horrific video-- I can see why some people seem to picture everyone there as cartoon villains. I don't think I know more than most people, but have reached out to researchers and have talked a lot with other advocates to understand the landscape. Vicky, for example, has been doing a lot for us on CFSAC and on the trans-NIH Working Group and has worked very hard to increase and improve research despite still been responsible for an epilepsy portfolio. I am optimistic that she will keep working for us but I do think receiving a lot of negative emails has been tough.

Edit to Add: I do think critical emails from patients and supporters are totally appropriate and useful.

 

[Skippa]

I sometimes wonder if there aren't a few trolls out there trying to paint us all as vexatious...

 

[Valentijn]

I would prefer patients and advocates not send personal emails, but I respect their right to do so, and I appreciate that their right supercedes my concerns.

But it's our right to express our disapproval of such emails or other abusive and inappropriate messages ... and I think we need to actively do so. Even when it's someone we have respected in the past for their work as an advocate.

Unfortunately I think those who prefer to routinely act inappropriately are far better organized for such endeavors than we are. There seems to be a fairly tight clique which will pile on together and back each other up, and drown out the reasonable opposition.

And many (most) of us know that confrontation and being upset for extended periods of time can have a pretty bad effect on our health. I've pretty much stopped using twitter due to the amount of jerks being jerky. Thus the non-patient advocates (usually mothers of younger patients) have a distinct advantage in such internal ME advocacy conflicts, and it's going to be the patients who have to retreat. Leaving the non-patient advocates mostly unopposed in ranting and railing against our potential allies.

We're simply too sick to fight them in an unmoderated platform. And that's why I agree that we really need to be putting this sort of advocacy into the hands of patient organizations, such as MEAction. If our reasonable organizations have enough support, they can drown out unreasonable voices, and even pretty sick ME patients can follow a single twitter account to upvote comments, etc.

 

[viggster]

But it's our right to express our disapproval of such emails or other abusive and inappropriate messages ... and I think we need to actively do so. Even when it's someone we have respected in the past for their work as an advocate.

Unfortunately I think those who prefer to act inappropriately are far better organized for such endeavors than we are. There seems to be a fairly tight clique which will pile on together and back each other up, and drown out the reasonable opposition.

That may be right, I don't know. I just wish whomever is doing it would stop for a second to think about possible bad outcomes of abusive emails:

- Allies inside NIH less willing to listen to any patients
- Allies inside NIH quitting work on ME - thus helping people inside who are not our allies
- The emails or parts of them become public, through leaking or other means. Reporters in the US then have a ready-made story about patients harassing NIH scientists, and that narrative - so entrenched in the UK - gets established here
- The names of the emailers become public

Email - especially email sent to government officials - is pretty much forever.

 

[Cheshire]

But it's our right to express our disapproval of such emails or other abusive and inappropriate messages ... and I think we need to actively do so. Even when it's someone we have respected in the past for their work as an advocate.

Unfortunately I think those who prefer to routinely act inappropriately are far better organized for such endeavors than we are. There seems to be a fairly tight clique which will pile on together and back each other up, and drown out the reasonable opposition.

And many (most) of us know that confrontation and being upset for extended periods of time can have a pretty bad effect on our health. I've pretty much stopped using twitter due to the amount of jerks being jerky. Thus the non-patient advocates (usually mothers of younger patients) have a distinct advantage in such internal ME advocacy conflicts, and it's going to be the patients who have to retreat. Leaving the non-patient advocates mostly unopposed in ranting and railing against our potential allies.

We're simply too sick to fight them in an unmoderated platform. And that's why I agree that we really need to be putting this sort of advocacy into the hands of patient organizations, such as MEAction. If our reasonable organizations have enough support, they can drown out unreasonable voices, and even pretty sick ME patients can follow a single twitter account to upvote comments, etc.

Yes, many of us witnessed really nasty, stupid and mean attacks on twitter against Julie Rehmeyer, @JenB and David Tuller (and I guess many more I didn't see).

I don't know what to do, as @Valentijn said, it's very difficult to intervene, because we know how detrimental it could be to us, and how insanely tenacious these people are.

I saw Jen Brea trying to engage into discussion with them, but there's no way doing so, because they ferociously rejected any offer to discuss, and kept repeating ad nauseam their assumptions.

These people are mean, stupid and are not helping us at all and reinforce the nut-case stereotypes we're faced with.

 

[Sasha]

That sounds horrible, @Cheshire. I didn't see any of that (I'm not on social media) but "insanely tenacious" might be very apt. There are millions of PWME and we're going to have our fair share of the mentally ill, and of people who are just awful, unpleasant people. I don't think we can persuade them out of their unpleasantness - the only people we can control are ourselves, and we can speak up and try to drown the nonsense out. There are far more of us than them - we just have to act.

 

[Undisclosed]

Please note: Posts from this thread were originally on this thread. The thread was split order for members to be able to continue their discussion re: angry patient emails to the NIH.

 

[Esther12]

Sorry if a bit OT (just after the thread was split): There has been a history of mistreatment and quackery, and no official bodies have take the time to criticise the bad research which has harmed patients. The lack of criticism of past problems does understandably make many people feel that ether they 1) don't understand why this research was so bad or 2) don't care.

I think it will be hard to start with a clean slate in the way some might want to without addressing past problems.

I don't know what e-mails have been sent to the NIH, and some people can be unreasonable, but I do understand why many patients are not willing to start afresh until past problems have been acknowledged and dealt with. (This post is low on specifics, but they can be provided if anyone wants)

 

[alex3619]

I view what's happening now at NIH as positive first steps.

I view it as a pilot program. A rather large pilot program. So arguments that numbers are not sufficient do not hold much sway with me. As I see it this program is about finding enough information to ask the right questions in the following studies. Now those studies will need to have sufficient statistical power, but we are not even at the point of designing them yet.