NINDS Director Expresses Shock (and Awe) at Community Response to Clinical Center Study Protocol

[Cort]

A Call From an Institute Director

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[/fright]The posting of the incomplete NIH protocol fopr the Clinical Center study sparked a large and rapid response from the ME/CFS community. It also provoked a unusual call from the head of the National Institute of Neurological Disorders and Stroke (NINDS) to Carol Head and Zaher Nahle of The Solve ME/CFS Initiative. In the 20 minute discussion Dr. Koroshetz explained that he and others at the NIH were shocked by the response. They had never seen anything like that before.

A Wake Up Call For the NIH

Apparently the NIH posts draft protocols on their site frequently but they've never had a patient group ferret them out and then mount a response to them. Carol Head told Dr. Koroshetz that we've been telling you that this community is different, that it is intensely involved in a way others are not - and now you know. She talked about the decades of anger that have been building up in a community which is very aware of how little support it's been given. This is an unusually politically and scientifically aware and active community.

Hey, welcome to ME/CFS!

Carol also emphasized that the NIH must take the lead financially to build up our research base. Our community simply does not have the financial resources that other disease communities have, to bootstrap a lot of research. That was apparently news to Dr. Koroshetz and that was an important message to deliver.

Carol's response to Dr Koroshetz was similar to others who've had personal contact with those in charge of the new NIH response to ME/CFS. In an email Carol said:

Dr. Koroshetz has demonstrated his goodwill and genuine desire to move forward in a positive way by proactively calling. He did not have to do so and most probably would not.

Overall, I summarize this as an individual who is committed to doing the right thing and who was shocked by the response. It was/is a wakeup call regarding the intensity of interest and anger in our patient community, and that’s good.

An Effective Advocate

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[/fright]I would like to take this opportunity to acknowledge Carol's role in all of this. We've needed The Solve ME/CFS Initiative to be a powerful voice for us and under Carol's leadership it has been. She produced the most effective advocacy presentation I've seen last year. She's made repeated trips to D.C. to confer with DHHS officials, has obviously forged a relationship with Dr. Koroshetz, and was the impetus behind the formation of the US Action Working Group composed of a diverse group of advocates.

Cautionary Note

I would caution everyone that this new relationship is going to take time to develop. Getting the funding right is going to take time as well. I've poured through the NIH funding records. Except for health issues that are considered national emergencies such as anthrax did some years ago, I don't see many instances of huge sudden increases in funding. Those that do occur appear to enjoy widespread Institute support which sometimes has taken years of effort to build.

We, on the other hand, appear to have a small group of individuals who are opening a small beachhead for us at the NIH and committed to doing more. Everyone who talks with Vicky Whittemore comes away inspired by her commitment. It will take some time to develop the standing within the NIH to deliver the big bucks. We are essentially going from no support to some support. That's a big leap.

Now we have to consolidate the beachhead by getting studies funded which produce positive results.

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[/fright]My guess is that we're going to get significant increases in funding but we're not going to get $250 million or anything close to that. The funding we do get, however, should greatly increase the number of research projects the NIH is funding on ME/CFS and give us a foothold we can build upon.

I would be "shocked, just shocked", for instance, if Ron Davis's next big grant proposal is not funded. If Davis can get a big grant which gets his End ME/CFS project moving forward at full speed that, in itself, will be a tremendous boost.

A Beautiful Friendship?

Hopefully this is the start of a beautiful friendship with the NIH . They know that we're watching, that the ME/CFS community is informed even about the minutiae of the illness and, that above all that we're eager, very eager to move forward. This means we can be partners in the way other communities cannot. It also means the NIH will get, if it works on ME/CFS will get kudo's unlike any other they've seen before. ME/CFS is a chance for the NIH officials to personally get that they make a difference in a way that they've probably not gotten before.

 

[IrisRV]

Thank you for this interesting and hopeful information, @Cort. I need the positive news. I'm sick to death of hearing all the negative stuff. I'm a glass half-full person and there have been too many half-empty glasses shoved in my face lately.

I'm glad to see the patient community was attentive and involved enough to bring the issues with the draft protocol to the attention of the NIH. Research will go faster if we can inform them before the fact rather than after. We are a remarkably informed patient community. Probably more so than any other medical condition.

However, I was a little disappointed to hear so much persistent negativity in the patient community (well, one I was involved with until recently, anyway). I'm all in favor of bringing the problems to the attention of the NIH or CDC. It's not that. It's the statements that demonize those individuals and organizations genuinely trying to make progress that I have a problem with. It's the people who attack those individual and organizations because the positive movement we're seeing is not immediately everything exactly the way they want it. It's the talk that these organizations will never, ever try to help us and that any efforts to do so are just sneaky ploys to stab us in the back. It doesn't make the patient community look good. I can't see it leads us forward in any way. Learn from history, don't keep reliving it. That was then and this is now.

Yeah, we're legitimately angry, frustrated, and distrustful, but we have to let enough of that go to make forward progress. Continuing to punish the present and future for the misdeeds of the past is counter-productive.

We're making progress! The picture for ME/CFS is vastly better today than it was five years ago. I love hearing about it.

 

[Cort]

Thank you for this interesting and hopeful information, @Cort. I need the positive news. I'm sick to death of hearing all the negative stuff. I'm a glass half-full person and there have been too many half-empty glasses shoved in my face lately.

I'm glad to see the patient community was attentive and involved enough to bring the issues with the draft protocol to the attention of the NIH. Research will go faster if we can inform them before the fact rather than after. We are a remarkably informed patient community. Probably more so than any other medical condition.

However, I was a little disappointed to hear so much persistent negativity in the patient community (well, one I was involved with until recently, anyway). I'm all in favor of bringing the problems to the attention of the NIH or CDC. It's not that. It's the statements that demonize those individuals and organizations genuinely trying to make progress that I have a problem with. It's the people who attack those individual and organizations because the positive movement we're seeing is not immediately everything exactly the way they want it. It's the talk that these organizations will never, ever try to help us and that any efforts to do so are just sneaky ploys to stab us in the back. It doesn't make the patient community look good. I can't see it leads us forward in any way. Learn from history, don't keep reliving it. That was then and this is now.

Yeah, we're legitimately angry, frustrated, and distrustful, but we have to let enough of that go to make forward progress. Continuing to punish the present and future for the misdeeds of the past is counter-productive.

We're making progress! The picture for ME/CFS is vastly better today than it was five years ago. I love hearing about it.

I agree! I think we're shifting into a more collaborative relationship with the feds. There are a few people who are more comfortable finding fault. Hopefully they will not poison our relationship with these officials. I have been told that there are some people who don't want to work on ME/CFS because of the hostile community. During XMRV saga death threats were apparently made to a or some reviewers of grant proposals and/or researchers. That kind of stuff gets around. No other disease community has done something like that.

Anger is understandable but we must be disciplined. If we have a disagreement lets not let it get personal and much as we would like to and couch our responses firmly and politely - in a way that they can hear them. That's called "skillful means".

That said I think we're doing pretty darn good. A long way to go but the future is looking brighter.

 

[ScottTriGuy]

Anger can be a sign of trauma.

Many folks with ME have been traumatized by the medical / research institution.

Their anger is valid.

 

[tatt]

I hear a lot in the UK about so called "death threats". However I have never heard any talk of police protection, which would be given if any credible threat was received. So I dont believe there has ever been more than a few mentally people sounding off, something that does happen often to people in the public eye.

When I attended a meeting in the UK between researchers and patients what I saw and heard was a community desperate to be listened to and to be involved. If you don't listen and if you insist in treating as idiots people who often led very active and successful lives before their illness you will get some anger. Those researchers who came with willingness to listen and were poilte to patients found gratitude and praise.

 

[Cort]

Anger can be a sign of trauma.

Many folks with ME have been traumatized by the medical / research institution.

Their anger is valid.

I agree There's no doubt that their and my anger is valid. The anger is huge and based on decades of neglect. Its very understandable.

Really I wish we could sit down with the NIH and other officials and air our disappointments and frustrations and they could tell us their concerns as well. We could clear the air, get complete with the past and focus on the future. On how we can work together to build a powerful constituency for ME/CFS at the federal level

 

[tatt]

and Cort - if you ever get the chance please do point out that those who genuinely have ME can only be angry for a short time as we soon run out of energy. Anger is draining.

 

[Thom]

During XMRV saga death threats were apparently made to a or some reviewers of grant proposals and/or researchers. That kind of stuff gets around. No other disease community has done something like that.

Anger can be a sign of trauma.

Many folks with ME have been traumatized by the medical / research institution.

True. But also, the ME/CFS community is made up of some pretty interesting kinds of people. I'd refer you to Tuning The Brain by Jay Goldstein where he describes "CFS" and "neurosomatic" patients quite accurately.

 

[weyland]

Really I wish we could sit down with the NIH and other officials and air our disappointments and frustrations and they could tell us their concerns as well.

There definitely appears to be a massive level of ignorance in the NIH about the history of their involvement and our plight in general. Dr. Koroshetz's response is quite illuminating. It would appear our rapid and robust response to the leak of the study details had a very beneficial effect. It shows we need to speak up loudly and intelligently at every opportunity.

 

[usedtobeperkytina]

The problems I see in the patient community are

#1, reacting or taking action without talking to the people/institution you are upset at to get all the facts. I saw this with the IoM initiative. Misinformation by "leaders" can cause unnecessary worry/fear/anxiety and, frankly, embarrass "the patient community." Find out all the details first. Don't just go on what you read has been put out. It could be incomplete or even inaccurate. A call may lead them to correct it, instead of getting everyone all roweled up into a battle that isn't necessary.

#2, attributing ulterior motives. Really, do we think that people who went into public service in health agencies want to permanently deny people good health? Even Simon. Just because someone disagrees with us or uses political strategies to advance their beliefs and agenda does not mean they intend to do harm.

Talk to your enemies/opponents; you may win over an ally.
People retire, die and move on. Each new person in a position is a new opportunity. They should not be judged on what their predecessors did.

One person who really stands out is Dennis Mangan. He was put over the Trans-ME/CFS Workgroup. An action targeting him started. He was surprised. "Why are all these patients mad at me?" he later said he wondered. He was open and took action to have a meeting to find out. I am glad the new NINDS guy did the same.

Dennis then took action to respond to what the patients said in their meeting.

 

[gowwab]

There definitely appears to be a massive level of ignorance in the NIH about the history of their involvement and our plight in general. Dr. Koroshetz's response is quite illuminating. It would appear our rapid and robust response to the leak of the study details had a very beneficial effect. It shows we need to speak up loudly and intelligently at every opportunity.

I agree.
I'm a little confused as to why this has to be a decision between anger and ally building. Historically all the big battles for social justice have involved and needed both. I'm not talking willy nilly anger for anger's sake but I for one am grateful for our righteous warriors ( that includes you Cort, our information warrior! Thanks!)

An example of both working together was the IOM report. I don't think people were angry or worried over nothing, the history of the IOM and Gulf War Illness and the way they excluded our advocates even made all our expert doctors sign a petition to stop it. I don't think they were just being pessimistic. I think all the attention and back and forth made a better study knowing we would hold them accountable if it was another GWS fiasco.

The AIDS movement had it's hard core Act Up wing and others who worked inside to system to build allies. They coordinated with each other and didn't fight about whose way was best. They both needed each other. And look at the results.

Same with the Civil rights movement. The list goes on.

The point you bring up about the ignorance and or the silence about the history between our illness is an important one. For both the government agencies and us. Like the post apartheid Truth and Reconciliation Commission, there is power in being able to say your peace, know the other side had heard you before moving forward. It may not be the sins of these individuals but the sins of their figurative fathers should still be addressed. I think it would only make them fight harder if they were aware of the mass suffering caused by their predecessors for 30 plus years. I don't see this as a harassment but more of a way to help move forward as one. We may be fierce but we are also fiercely appreciative and loyal to those who stand up for us.

Maybe something like this document that lays out the chronology of events could be passed on the one of them if they were interested. https://dl.dropboxusercontent.com/u/89158245/Thirty years of Disdain - Summary.pdf

 

[Cort]

The problems I see in the patient community are

#1, reacting or taking action without talking to the people/institution you are upset at to get all the facts. I saw this with the IoM initiative. Misinformation by "leaders" can cause unnecessary worry/fear/anxiety and, frankly, embarrass "the patient community." Find out all the details first. Don't just go on what you read has been put out. It could be incomplete or even inaccurate. A call may lead them to correct it, instead of getting everyone all roweled up into a battle that isn't necessary.

#2, attributing ulterior motives. Really, do we think that people who went into public service in health agencies want to permanently deny people good health? Even Simon. Just because someone disagrees with us or uses political strategies to advance their beliefs and agenda does not mean they intend to do harm.

Talk to your enemies/opponents; you may win over an ally.
People retire, die and move on. Each new person in a position is a new opportunity. They should not be judged on what their predecessors did.

One person who really stands out is Dennis Mangan. He was put over the Trans-ME/CFS Workgroup. An action targeting him started. He was surprised. "Why are all these patients mad at me?" he later said he wondered. He was open and took action to have a meeting to find out. I am glad the new NINDS guy did the same.

Dennis then took action to respond to what the patients said in their meeting.

This is "Really, do we think that people who went into public service in health agencies want to permanently deny people good health?" is such a great point. It's understandable that we don't trust people - we've gotten so little help for the feds that it's easy and even natural to think some concerted effort to get us has bee. going on. From our perspective it's just so hard to understand why they don't or didn't just help out!

The history of medicine is replete with examples, however, of serious diseases that took years and years to gain traction. Cancer, believe it or not, was one of them. It was a major killer and yet little money went into researching it. One reason was that it was, like ME/CFS considered untreatable - it was just too difficult. I think there was also a weird kind of stigma attached to it. That obviously changed but it actually took concerted advocacy to bump its funding up.

People who go into health want to help though.....Why else would they do it - and I think many will love to help a community that needs so much help and will be so grateful for it.

 

[Cort]

I agree.
I'm a little confused as to why this has to be a decision between anger and ally building. Historically all the big battles for social justice have involved and needed both. I'm not talking willy nilly anger for anger's sake but I for one am grateful for our righteous warriors ( that includes you Cort, our information warrior! Thanks!)

An example of both working together was the IOM report. I don't think people were angry or worried over nothing, the history of the IOM and Gulf War Illness and the way they excluded our advocates even made all our expert doctors sign a petition to stop it. I don't think they were just being pessimistic. I think all the attention and back and forth made a better study knowing we would hold them accountable if it was another GWS fiasco.

The AIDS movement had it's hard core Act Up wing and others who worked inside to system to build allies. They coordinated with each other and didn't fight about whose way was best. They both needed each other. And look at the results.

Same with the Civil rights movement. The list goes on.

The point you bring up about the ignorance and or the silence about the history between our illness is an important one. For both the government agencies and us. Like the post apartheid Truth and Reconciliation Commission, there is power in being able to say your peace, know the other side had heard you before moving forward. It may not be the sins of these individuals but the sins of their figurative fathers should still be addressed. I think it would only make them fight harder if they were aware of the mass suffering caused by their predecessors for 30 plus years. I don't see this as a harassment but more of a way to help move forward as one. We may be fierce but we are also fiercely appreciative and loyal to those who stand up for us.

Maybe something like this document that lays out the chronology of events could be passed on the one of them if they were interested. https://dl.dropboxusercontent.com/u/89158245/Thirty years of Disdain - Summary.pdf

Righteous warriors - I like it!

Thanks for mentioning Mary's work - I've been looking for that.

 

[jann1033]

Thank you for reasonable comments. I have been sick for decades but can't say I agree with or support the rude comments /anger made by so many to those who have have spent long hours trying to help US .
Those who have ignored us or maligned us aren't hurt by us returning like for like, it only provides foder for their "they are all crazy" diagnosis. And those who have spent time and effort trying to help certainly don't deserve it. Main reason I don't go to ME/CFS forums.

 

[Courtney Miller]

Thank you for this interesting and hopeful information, @Cort. I need the positive news. I'm sick to death of hearing all the negative stuff. I'm a glass half-full person and there have been too many half-empty glasses shoved in my face lately.

I'm glad to see the patient community was attentive and involved enough to bring the issues with the draft protocol to the attention of the NIH. Research will go faster if we can inform them before the fact rather than after. We are a remarkably informed patient community. Probably more so than any other medical condition.

However, I was a little disappointed to hear so much persistent negativity in the patient community (well, one I was involved with until recently, anyway). I'm all in favor of bringing the problems to the attention of the NIH or CDC. It's not that. It's the statements that demonize those individuals and organizations genuinely trying to make progress that I have a problem with. It's the people who attack those individual and organizations because the positive movement we're seeing is not immediately everything exactly the way they want it. It's the talk that these organizations will never, ever try to help us and that any efforts to do so are just sneaky ploys to stab us in the back. It doesn't make the patient community look good. I can't see it leads us forward in any way. Learn from history, don't keep reliving it. That was then and this is now.

Yeah, we're legitimately angry, frustrated, and distrustful, but we have to let enough of that go to make forward progress. Continuing to punish the present and future for the misdeeds of the past is counter-productive.

We're making progress! The picture for ME/CFS is vastly better today than it was five years ago. I love hearing about it.

Iris, I agree with you very much. This study is very good news, the outreach by NINDS' Director to SolveCFS is great news, and we have to engage firmly and constructively to make the most of NIH's renewed attention to our disease so that research grows exponentially and develops treatments for patients urgently.

 

[IrisRV]

I hope HR can be a voice for the position of moving forward, welcoming good news, and understanding that everything is not going to be exactly the way we want, or happen as fast was we want. We have to deal with reality while pushing forward.

I know HR will have a diverse membership, with people from the don't trust position. Their voice will be heard here also. We need to understand how everyone is thinking. However, I hope enough of us will be willing to speak up for a positive stance and encourage others of like mind to speak up firmly so that our voice is heard just as loudly. There are enough forums out there looking for the downside to everything. Another one is not necessary. What is necessary is a forum that also represents those looking at the upside.