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

[alex3619]

Angry emails almost never have a positive impact. I do note however that critical and cogent emails are not the same thing.

Anyone who is primarily angry is far better signing petitions, for a single coherent voice, rather than posting individual emails.

If I were a researcher in the NIH and I received a string of angry emails, I would most likely just junk them and set some flags to automatically junk more from the same individuals. So any important message that might be buried in the emails would be lost, and if that person became more focused and less angry later on they would still probably be automatically blocked. So anger and venting would lead to the message being lost.

However against this we have the issue that our institutions and researchers are still trying to adapt to the internet age. We all are. Traditional rules are out the window. We need to find better ways of dealing with things. That includes trolls, venting etc.

From a scientific perspective however I think many of the emails would have important points to consider regarding study design and implementation.

Choice of language is just as important as the choice of issues to address. Bombarding people is also not a good strategy. Getting together and sending one single carefully designed group letter, or petition, is a better choice.

My comments are not about the right of individuals to do what they do. Its about the effectiveness of what they do.

 

[TiredSam]

In reply to the new thread topic, angry emails to the NIH are bad, definitely.

As has been mentioned above, clearer channels of communication and some acknowledgement of the past may help considerably in reducing the urge some people have to be heard by whatever means necessary.

I try to appreciate the big picture and all the potentially great things about this study, and agree that there are many matters where negotiation, compromise and realising you can't have it all your own way are appropriate. In fact I'll even accept that most matters fit into this category.

But I'm afraid I can't look at Walitt that way, or the involvement of others who have bought into the psych bullshit about our illness. I'm afraid I keep coming back to the fact that he simply has to go. To have that guy anywhere near my illness is an insult. Can't get round it, sorry. Saying he won't have any real power or that it's a Kafkaesque bureaucracy or he's been warned about his views being a career breaker doesn't help. People keep harping on about it because he hasn't gone yet.

If a solution to that can be found (and I can think of only one, not because I'm inflexible, but because he should never have been allowed near the study in the first place), I'll be waving flags and happy to compromise on everything else.

 

[Valentijn]

If a solution to that can be found (and I can think of only one, not because I'm inflexible, but because he should never have been allowed near the study in the first place), I'll be waving flags and happy to compromise on everything else.

I doubt you'd really be happy with the 5 other psychobabblers still being on the team This is another problem with getting so focused on one relatively small issue: people are missing out on the more important issues.

Saligan and Gill are just as bad as Walitt, and Hallett and his two team members are probably worse. And all the good researchers in the world can't rescue a study which has committed to using a bad design (like multiple small control groups) ... though at least there's less risk of a nasty interpretation then.

All of this is likely symptomatic of the non-involvement of patients, and the lack of communication in the preliminary stages. If patient representatives had that list of names, they could have quietly asked to have them crossed off before the psychobabblers (and the public) even knew they were on the list. A heated political situation could have been completely avoided ... but now they are stuck with a big nasty mess.

We need a better process in place with far better patient and advocate involvement. But that's not going to happen while micro-focusing on specific details which might look like personal attacks if not carefully presented.

 

[TiredSam]

I doubt you'd really be happy with the 5 other psychobabblers still being on the team

I'm not. I just didn't feel I could mention it without appearing too vexatious

Although I did hint at it with the following:

others who have bought into the psych bullshit about our illness

 

[viggster]

From a scientific perspective however I think many of the emails would have important points to consider regarding study design and implementation.

It doesn't work to have hundreds of patients emailing their ideas to individual scientists at NIH. We have advocacy groups who have met with NIH peoples and NIH tells us they are working on ways to formalize input. If we want to have an influence, it makes so much more sense to work through these channels. It's much more powerful to have advocates both sides trust present concerns (not demands) with the weight of most of the patient community behind them.

And at this point, I doubt any more emails about Walitt are going to get read by anybody at NIH. Sending individual email #5,243 complaining about him isn't an effective tactic.

 

[Sasha]

It doesn't work to have hundreds of patients emailing their ideas to individual scientists at NIH. We have advocacy groups who have met with NIH peoples and NIH tells us they are working on ways to formalize input. If we want to have an influence, it makes so much more sense to work through these channels. It's much more powerful to have advocates both sides trust present concerns (not demands) with the weight of most of the patient community behind them.

And at this point, I doubt any more emails about Walitt are going to get read by anybody at NIH. Sending individual email #5,243 complaining about him isn't an effective tactic.

You're making very good points - but somebody needs to get this message out, such as the NIH and/or advocacy groups. I don't recall seeing any of them saying this (but maybe I just didn't notice).

 

[duncan]

Maybe email #5,244 will be worded in just the right way, catching the right person at just the right moment...

Who can say?

Also, reduce many voices to a few, and what if the few get it wrong?

Lots of downsides here, beyond simply presuming to enforce a collective will over a minority.

I suggest the best we can do is suggest.

 

[TiredSam]

Maybe email #5,244 will be worded in just the right way, catching the right person at just the right moment...

The problem is that the senders of emails 1-5243 will have ensured that email 5244 isn't even read.

 

[BurnA]

Also, reduce many voices to a few, and what if the few get it wrong?

Remember the few aren't presenting their opinions, they are presenting the opinions of the many people they represent.
And if the few do manage to get it wrong, well ...then we just start sending them lots of angry emails

 

[duncan]

@TiredSam and @BurnA - thank you both for the chuckle.

 

[Amaya2014]

For me it goes back to that saying, 'I can't hear what you're saying because you're speaking so loudly'.
If you've never heard that it has very little to do with volume. I know that the ones "yelling" have honest and credible points but I believe the delivery is counterproductive.

 

[viggster]

You're making very good points - but somebody needs to get this message out, such as the NIH and/or advocacy groups. I don't recall seeing any of them saying this (but maybe I just didn't notice).

Yes, this is part of the problem on the patient side. We aren't very well organized. Solve ME/CFS Initiative could be the one-stop-shop for advocacy in the US, but right now they are more focused on funding research. Carol Head & Zaher Nahle have met with NIH people and have taken on an advocacy role there, which is fantastic. But they are not a membership organization. ME Action was formed to fill that void but it is being run by two sick people and so there are very hard limits on how much organizing ME Action can do.

 

[Sasha]

Yes, this is part of the problem on the patient side. We aren't very well organized. Solve ME/CFS Initiative could be the one-stop-shop for advocacy in the US, but right now they are more focused on funding research. Carol Head & Zaher Nahle have met with NIH people and have taken on an advocacy role there, which is fantastic. But they are not a membership organization. ME Action was formed to fill that void but it is being run by two sick people and so there are very hard limits on how much organizing ME Action can do.

I think that the NIH's funding, once it gets going, will so overshadow everyone else's that Solve's involvement in getting this NIH study straight, and good comms set up with the NIH, would easily be worth their time, in terms of what's in patients' best interests. (And it's worth bearing in mind that the damage caused by a study that's hijacked by the psychogenic crowd - or perceived to be so - will take a lot of undoing, as PACE has shown.)

It's a lot to ask #MEAction to take on, I agree - this kind of thing needs health people, guided by sick people.

 

[duncan]

Perhaps an alternative way to approach this is to reach out to the NIH. To communicate that there are disenfranchised patients that may wish to speak directly to them, and perhaps angrily. But they are not the majority, and NIH investigators should frame those emails in an appropriate context.

I'm not saying the NIH should discard them or their concerns necessarily - simply make allowances for them due to the scarred history of ME/CFS, to read them with an eye toward the grim circumstances from which they spring.

These are people at the NIH and they have feelings, but they are also intelligent people, people ostensibly trying to help the sick; maybe they would be able to appreciate this narrative.

 

[dannybex]

It doesn't work to have hundreds of patients emailing their ideas to individual scientists at NIH. We have advocacy groups who have met with NIH peoples and NIH tells us they are working on ways to formalize input. If we want to have an influence, it makes so much more sense to work through these channels. It's much more powerful to have advocates both sides trust present concerns (not demands) with the weight of most of the patient community behind them.

Two years ago in an interview with Mindy Kitei, Ian Lipkin said that writing the NIH directly was basically a waste of time. Instead he stressed the need to write Congress, which allocates funding for the NIH:

Lipkin: "Let’s backtrack and examine how these decisions are made. First of all, the National Institutes of Health gets money from the Congress. The Congress will mandate what it is they want people to do…(the) NIH doesn’t allocate money for specific disorders. Those kind of monies are allocated in response to congressional mandates."

"The problem is that you need a champion in Congress who's going to go ahead and say, I want money allocated for chronic fatigue syndrome research. That’s the way it gets done. That’s the way HIV got done, that’s the way breast cancer got done, and so on."

 

[viggster]

Perhaps an alternative way to approach this is to reach out to the NIH. To communicate that there are disenfranchised patients that may wish to speak directly to them, and perhaps angrily. But they are not the majority, and NIH investigators should frame those emails in an appropriate context.

I'm not saying the NIH should discard them or their concerns necessarily - simply make allowances for them due to the scarred history of ME/CFS, to read them with an eye toward the grim circumstances from which they spring.

These are people at the NIH and they have feelings, but they are also intelligent people, people ostensibly trying to help the sick; maybe they would be able to appreciate this narrative.

This has already happened. Please read @searcher's response in this thread.

 

[viggster]

Two years ago in an interview with Mindy Kitei, Ian Lipkin said that writing the NIH directly was basically a waste of time. Instead he stressed the need to write Congress, which allocates funding for the NIH:

Lipkin: "Let’s backtrack and examine how these decisions are made.First of all, the National Institutes of Health gets money from the Congress. The Congress will mandate what it is they want people to do…(the) NIH doesn’t allocate money for specific disorders. Those kind of monies are allocated in response to congressional mandates."

"The problem is that you need a champion in Congress who's going to go ahead and say, I want money allocated for chronic fatigue syndrome research. That’s the way it gets done. That’s the way HIV got done, that’s the way breast cancer got done, and so on."

Yes, and ME Action and the US Action Working Group have been working on Congress since last summer. That is the only way to get a really substantial budget at NIH. The problem, again, is not a lack of ideas of how to do things - it's getting the money & people together to do them.

 

[BurnA]

Yes, and ME Action and the US Action Working Group have been working on Congress since last summer. That is the only way to get a really substantial budget at NIH. The problem, again, is not a lack of ideas of how to do things - it's getting the money & people together to do them.

Yes, this has to be the goal. It's heartening to hear that conversations took place last summer and even if they didn't yield anything yet , it's something that must continue for as long as required, because it will be worth all the effort one day.

 

[RustyJ]

All of this is likely symptomatic of the non-involvement of patients, and the lack of communication in the preliminary stages. If patient representatives had that list of names, they could have quietly asked to have them crossed off before the psychobabblers (and the public) even knew they were on the list. A heated political situation could have been completely avoided ... but now they are stuck with a big nasty mess.

As far as I know Solve reps were involved at an early stage, possibly even prior to the first announcement. Certainly they had ample opportunity to raise these issues. So the question should be whether they did, and whether NIH did anything, or cared. If Solve ME did not raise these issues, why not?

The feeling among those who criticize Solve ME is that they did not raise them, or if they did, the NIH did not care to correct these issues.

 

[viggster]

As far as I know Solve reps were involved at an early stage, possibly even prior to the first announcement. Certainly they had ample opportunity to raise these issues. So the question should be whether they did, and whether NIH did anything, or cared. If Solve ME did not raise these issues, why not?

The feeling among those who criticize Solve ME is that they did not raise them, or if they did, the NIH did not care to correct these issues.

Those are not the only two possibilities.