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

[John Mac]

Strange how the group of "scientists" I imagine would be most likely to be receiving criticism from ME/CFS patients i.e. those promoting a psychological cause for the illness are positively queuing up to be involved in the field.

 

[Snowdrop]

I tried to read the messages on this thread but I feel like I'm missing something obvious due to my brain fog. There were a lot of good points made but here's the bottom line for me.

1. The answer to the question in the subject line seems obvious - Angry emails to NIH are bad.

2. I'm not sure I could do anything to stop another patient from sending angry emails. Who would listen to me?

So, I must be missing something basic. Why this thread is here? (please don't take this as criticism, I'm just confused)

Is the idea that the angry patients will see this thread and it will convince them to stop sending the angry emails?

OR is there some other action that I should be doing to influence these angry patients to stop those emails?

yours in confusion ...

It seems angry emails were sent. I think the thread may be simply to open discussion on: is it possible to gain a consensus in the community about this. No-one can stop someone from sending anything but can we agree that our interests would be served by developing a cohesive strategy that many people can agree to moving forward with regard to addressing the issues in a way that is best productive toward that goal.

I will say on my own behalf, I understand entirely where anger comes from on this issue. I have a lot of ire for all the BPS babble sometimes I feel the need to 'step away' for my own good since it helps no-one to repeatedly vent at the offending party. They stop listening and communication breaks down. I want to be effective in what little I choose to do (not always easy to determine).

I think working through a representative who communicates back and forth is good. I know that we can't agree on everything but there are some core points I think most can agree to. Nothing about this is perfect and that has to be OK.

 

[Karena]

The thing is we are all human, the scientists who get into ME/CFS research decide to do it of their own accord. They are not obliged to do it, the same way anybody has the right to choose their job or profession. So its only natural if anybody found themselves getting abusive emails in any walk of life that they would question themselves and consider changing path.

It may be natural, but it is the right thing to do? They turn their backs on countless current and future patients because a small percentage exhibit bad behavior.

Doctors and scientists who make an honest effort to help us are often revered by the patient community. Maybe we should create an award for ME/CFS researchers at the NIH. Call it the: "I Know You're Just Doing Your Job, But You're a Real Hero to Us."

@BurnA, I totally agree than angry emails are a bad idea. I also agree it's good to point that out on forums like this. But we can't control everyone with access to a computer or smartphone. I think most of our energy and efforts should go toward presenting our case to the NIH in rational, more effective ways.

 

[BurnA]

It may be natural, but it is the right thing to do?

The point is there is no right or wrong.
If a teacher decides to change profession or school because the kids are giving abuse is that right or wrong ? If a lawyer gives up defending clients is that right or wrong ?

Maybe we should create an award for ME/CFS researchers at the NIH. Call it the: "I Know You're Just Doing Your Job, But You're a Real Hero to Us."

I think this is a great idea.

But we can't control everyone with access to a computer or smartphone. I think most of our energy and efforts should go toward presenting our case to the NIH in rational, more effective ways.

Yes but the point is how do we do that ? Is it through advocacy groups ? If so they are the ones who we should be emailing.

 

[ahimsa]

Thanks so much for the response!

If you take the approach "who would listen to me" as a reason for not speaking, well then its self fulfilling, so i don't think that's a particularly useful approach

Oops, I think that came across the wrong way.

I definitely believe in speaking up and being a part of ME/CFS advocacy and awareness campaigns! Over the years I have written letters, sent emails, tweeted, signed petitions, donated money, etc. And in person if someone asks me about my folding cane/seat (I put a dysautonomia sticker on it fairly recently) then I give them a flyer about ME/CFS. I know that I do much less than so many of the wonderful folks on these forums, and in other groups, but I try to do what I can.

What I meant was this - Why would an individual angry patient, especially one who thinks writing angry letters or emails to NIH is a good idea, ever listen to me?

That patient might listen to someone in a position of authority, or someone with more skills in persuasion, or someone who was their friend, or .... I don't know, someone other than me. But if that patient does not know me from Adam then I can't see why they would care what I thought. Not to mention that I have no idea who these angry patients are or how to contact them.

But even if I knew who they were I would not feel comfortable directly confronting an individual patient and trying to tell them what to do. I fear it would only escalate the situation rather than calm things down. They might dig in their heels and write more angry letters. I don't have any confidence that my talking to them would help more than hurt.

I'm sorry for the confusion caused by my post. I'll go back to reading/lurking on this thread. Many thanks to the others who are trying to work this thing out and make a positive impact.

 

[BurnA]

I'm sorry for the confusion caused by my post. I'll go back to reading/lurking on this thread. Many thanks to the others who are trying to work this thing out and make a positive impact.

No, you didn't cause confusion, its ok! Its easy for posts to come across the wrong way.( including mine )
Please participate as much as you like!

 

[akrasia]

https://twitter.com/i/web/status/661932166889267201

Staley links to an article by Larry Kramer describing the state of play for HIV at the NIH. It's a scathing piece, pulls no punches, and from the point of view of some of the participants on this thread will seem quite " negative". Staley manages to endorse this while still a member of the search committee for a head of the Office of AIDS Research. He's not telling Kramer to tone it down, in fact linking to it is a full throated endorsement of Kramer's view of the NIH, even though I suspect there are things in the column not germane to NIH politics that he might take issue with.

We squeak, AIDS activists roar. Do not worry about alienating those charged to care for you. It is the NIH that has betrayed its responsibility. Noting the movement away from a policy of indifference and neglect, does not compel a person to become an NIH cheerleader.

 

[beaker]

Staley links to an article by Larry Kramer describing the state of play for HIV at the NIH. It's a scathing piece, pulls no punches, and from the point of view of some of the participants on this thread will seem quite " negative". Staley manages to endorse this while still a member of the search committee for a head of the Office of AIDS Research. He's not telling Kramer to tone it down, in fact linking to it is a full throated endorsement of Kramer's view of the NIH, even though I suspect there are things in the column not germane to NIH politics that he might take issue with.

We squeak, AIDS activists roar. Do not worry about alienating those charged to care for you. It is the NIH that has betrayed its responsibility. Noting the movement away from a policy of indifference and neglect, does not compel a person to become an NIH cheerleader.

Yes ! Important to remember NIH works for us ( USA taxpayer anyways )

 

[Groggy Doggy]

I think writing angry emails to the NIH is counterproductive. The upcoming NIH study is a start, and it's not a perfect one. It would be impossible to please everyone and have a perfect study. Working in business is about compromise. I think continuing to communicate in an angry tone, will harm ME patients in the long run because we will burn bridges within the NIH and thus loose their support. We need to 'seize the moment' and partner with the NIH.

Do we want to be right of do we want to win?

I want to 'win' by partnering with the largest research hospital in the world. I want reliable biomarkers established for our condition. I want our illness to be medically recognized as disabling (not merely feeling tired now and then which is how many still perceive it). I want affordable treatments available so we can get out of our beds and homes and begin to feel alive again.

I am not intimidated by the psychologists/psychiatrists. The more we choose to focus on them, and how they will harm us, the more power we give them. If they are a part of the upcoming study, then we will have opportunity to monitor their actions (if we choose to). "Keep your friends close, keep your enemies closer"

In summary. Let's not blow it. We are on a roll, so lets keep the ball moving.

 

[Snowdrop]

I've already given an opinion on this thread. To sum up: understandable anger/a blitzkreig of anger emails not helpful.
I'd like to clarify one point. I have not given up on the idea that the ME community may need to ACTUP/ shoutout about our situation.

While there are some who suggest that we should do both as our conscience leads, while I have no say or authority over others conscience I would argue that, in my opinion, we can come together (maybe) still by all of us strategically choosing both. What I mean by that is: if you shout without a break you loose your audience. As far as med institutions go they may go ahead and try (in their own inept way) to do the right thing anyway.

In reality of course there is no perfect agreement. While ACTUP can be instructive/informative for our actions it's not a perfectly equivalent situation and being human it's probably safe to say that ACTUP had it's own missteps and mistakes were made--the important litmus test here is are we being effective/moving toward our goal?

Valentijn made the very good point that there are other people to focus on other than Walitt. So even if he was removed there are concerns. Is this a time to continue to speak out ACTUP. I think it's difficult to know with certainty but my opinion is that taking a breather to allow a space for dialogue isn't wrong.

NIH has handled the communication and patient participation badly so far. Let's hope they're learning from that. We need to let them.
I think we broadly agree as to what we don't like about the study also. It's been outlined above in this thread by others. The question is then can we realistically/reasonably expect to get everything we want? It's an honest question to which I don't have a ready answer.
And what do we want to replace the parts we want gone?

At least we can say there is momentum. Both research wise and in the press.

 

[Groggy Doggy]

On a daily basis I process a range of emotions; anger, frustration, overwhelmed, powerlessness, ignored and abandoned. When comunicating with others, if possible, I try to pause and take a deep breath before expressing my thoughts. I am still learning how to communicate my feelings, without pushing others away. I know if I keep dwelling on the negative, healthy people with stop listening and avoid me. I can vent to my disabled friends, because they understand, and that's one of the ways we support each other. But when communicating with researchers, doctors, organizations that are actively trying to help us, we need to stop and think about the best approach. We are experts in being sick with ME, because we live it day in and day out. When I was healthy I had no idea what it meant to be disabled. It was a huge learning curve for me to come up to speed on the history of our complex illness. I try to keep up with reading the current research that is related or closely related to my illness, but it can be daunting. We need to give the new researchers time to get up to speed. Researchers are human and we need to assume they will mistakes along they way as they learn and stumble. Regarding our NIH communications, can we consider adopting a new skill; can we be persuasive and convey our message while avoiding statements that include (anger, blame, conspiracy theories, etc). We are ill and disabled. I think this is a better approach and more efficient use of our precious energy supply.

 

[viggster]

Staley links to an article by Larry Kramer describing the state of play for HIV at the NIH. It's a scathing piece, pulls no punches, and from the point of view of some of the participants on this thread will seem quite " negative". Staley manages to endorse this while still a member of the search committee for a head of the Office of AIDS Research. He's not telling Kramer to tone it down, in fact linking to it is a full throated endorsement of Kramer's view of the NIH, even though I suspect there are things in the column not germane to NIH politics that he might take issue with.

We squeak, AIDS activists roar. Do not worry about alienating those charged to care for you. It is the NIH that has betrayed its responsibility. Noting the movement away from a policy of indifference and neglect, does not compel a person to become an NIH cheerleader.

You're conflating two things. Larry Kramer's piece is publicly calling out what he views as dangerous or unhelpful NIH policies and decisions. Publicly embarrassing government agencies & officials is sometimes an effective tactic - it's a tactic I used last summer when I published a widely-read article calling out Francis Collins & NIH for inaction on ME.

That is not the kind of behavior I'm calling out as unhelpful. I'm talking about personal attacks (implying NIH doctors are intentionally hurting ME patients) being emailed to specific people at NIH. That is an entirely different thing than publishing an article criticizing NIH.

 

[BurnA]

There are more good things happening at NIH than is publicly known. Avi Nath and Ron Davis have been talking lately. I think that's fantastic

https://twitter.com/i/web/status/718346011664650240

 

[viggster]

https://twitter.com/i/web/status/718346011664650240

Ahh, that's too bad.

 

[BurnA]

Ahh, that's too bad.

Yes its disappointing. Especially if they are giving top up grants and planning RFAs, then surely it wouldn't have costed that much to collaborate with Ron Davis.

 

[Justin30]

Yes its disappointing. Especially if they are giving top up grants and planning RFAs, then surely it wouldn't have costed that much to collaborate with Ron Davis.

Its a F****** joke, not just a disappointment.

It truly makes you question and wonder why the NIH wont give them the money.

• Are they scared Davis and his team will find the cover up if they are provided the funds?
• Are they scared that they let a mass outbreak of unknown origin ravage the world without intervention by them and the CDC?
• Are they hoping trying to limit funding in hopes that Davis and Co. Come close but fall short of funds so that Insurance companies and the HHS and everyother authority on yhe globe can over look it?
• Maybe the NIH knows this is just one of many forms of True Encephalitis where damage is permanent, progressive and degernerative?
• Maybe that this all has to do with immunizations we recieved as kids and or exposure to polio which has resulted in widespread poliomyielitis and they dont want this to get out?
• They know that all Herpes Viruses cause encephalitis of some form and the lack of intervention by Drs, ER Drs, Specialists etc. In adminsitering Antivirals at the acute stage reflects a massive error in teaching and ciriculumns proposed by the NIH, CDC and all most major universities.
• They already know what the problem is and because the disease is invisible they figure they can hide and not adequately pay for the massive disease burden?
• They and the CDC would be in major conflicts with health organizations world wide for not listenting to Wessely and Co.
• They want to be the ones Dr Collins, Nath, Lipkin, etc to say look we.found it first.
• They no its easy to solve but the cost of the medical treatments are to expensive for the insuranc companies to cover.
• They know that entero and echo vieuses cause the same burden as polio did but are willing to do anything about?
• They underestimated the ability of bacterial pathogens transfering from animals to humans ie. Lyme disease, Babesia, etc.

I believe I have said this once before but one or all of our organizations should be absolutely screaming about the lack of/not funding this study. SCREAMING!!!!!!!!!!

The NIH says come here, here is some money for all but.....oh no you group of experts including ME experts dont get to have any for your study.....its absolutely Pathetic!!!!!

This is but my opinion; but I feel the NIH is doing a huge disservice to the community by not funding this study...

Can some one please do me a favor and list all AMERICAN, CANADIAN, EUROPEAN, AUSTRALIAN ME/CFS Organizations? I will draft an email to them to ask why the have not taken an active response to not fund the OMF Study.

Does no one realize that more tests could be added, more patients, more researchers, etc.??????

I am absolutely furious to the response to Janet Dafoe and so should everyone else that is sick with disease including there family, friends and care givers.

Like I said before there is some fowell crap reaking out the doors of the NIH and CDC and this is just another piece of it.

 

[Justin30]

Ahh, that's too bad.

That is to bad so what are is the community going to do about it?

 

[Groggy Doggy]

That is to bad so what are is the community going to do about it?

It's challenging to make some of the changes because we don't have consistent leadership that represent our needs. We have multiple advocacy groups and different advocates, and people that say they are our advocates. Because of this we are not well organized and don't have a unified message. Also advocacy groups don't agree on the same tactics. It's not the CDC's or NIH's fault that we are not well organized. If we want to negotiate with large government organizations then we ALL need to 'step up', get organized, and fully support the organization.

 

[Justin30]

It's challenging to make some of the changes because we don't have consistent leadership that represent our needs. We have multiple advocacy groups and different advocates, and people that say they are our advocates. Because of this we are not well organized and don't have a unified message. Also advocacy groups don't agree on the same tactics. It's not the CDC's or NIH's fault that we are not well organized. If we want to negotiate with large government organizations then we ALL need to 'step up', get organized, and fully support the organization.

I couldnt agree with you more. I am wanting someone to compile a list of all the organizations then i will dedicate a letter to then asking them why they will not come together to take on the NIH and CDC.

I find it quite rediculous that we have a huge oportunity at our doorstep with 2 huge studies and we cant even unite collectively......

It absolutely boggles my mind??????

Well being disorganized and not agreeing on tactics maybe shear ego generated BS just like what happens in Polotics at the NIH and CDC.

Wouldnt you agree that all our organizations should talk, have some compromise and come up with a plan.

I am sure that in todays day and age they could draft a proposal of requests to the NIH.

I am also sure that in todays day and age they could set up a website quickly. This could include the unified name as well as all the independants coming together as one.

I know they are way healthier ME/CFSers out their that could help with this.....

 

[Groggy Doggy]

@Justin30

I may be missing some orgs and names, but these ones I am familiar with. It's a start.

Thanks!!!!

Advocacy orgs:
http://www.meaction.net/ https://twitter.com/MEActNet
http://www.meadvocacy.org/ https://twitter.com/meadvocacy_org

Reseach based orgs:
http://solvecfs.org/ https://twitter.com/PlzSolveCFS (research)
http://www.openmedicinefoundation.org/ https://twitter.com/OpenMedF (research)

UK based advocacy:
https://twitter.com/MEAssociation (UK based)
https://twitter.com/Invest_in_ME (UK based)

Individuals:
Jenny Spotlia http://www.occupycfs.com/author/jspotila/ https://twitter.com/knittahknits
Mary Dimmock https://twitter.com/marydimmock
Mary Schweitzer http://slightlyalive.blogspot.com/ https://twitter.com/SlightlyAlive94
Brian Vastag https://twitter.com/brianvastag
Cort Johnson http://www.cortjohnson.org/ https://twitter.com/CortJohnson