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Dr Avindra Nath (NIH intramural study) to give Solve webinar, 21 April

akrasia

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But a lot of these scientists don't have working on ME/CFS as their job: Dr Nath is approaching them to volunteer their time on top of the jobs they're contracted to do. They're already working on other (presumably often serious) diseases.
This issue of being at the mercy of reluctant volunteers deserves more response than I can give at the moment, so I'll quote Ken Friedman's post from Health Rising,
Kenneth J. Friedman, Ph.D. on April 24, 2016 at 7:28 pm

If what is reported here is true, the largest problem with the N.I.H., intramural ME/CFS study, is that it is being done by volunteers donating their time. Once, again, the ME/CFS Community is being short-changed by the N.I.H. not putting its money where its mouth is. Once again, ME/CFS patients and research are second-class citizens. When will it end?

N.I.H. Institute Directors receive budgets which they divide among their programs and Laboratory Chiefs. I gather that not a cent of any budget of any Institute, or any laboratory within an institute is going for Intramural N.I.H. research.

And so, rather than complain, or dare to voice this disparity, the community is to say, “thank-you, we are so grateful for your charitable contribution to our pain and suffering? We accept our second class, possibly third-class, citizenship in this country, because prejudice and faulty science have prejudiced the research community, the medical community, and even the general public against us?

How many years of timidity will it take for us to learn that timidity receives little attention. Timidity did not solve AIDS, and it will not solve ME/CFS.
http://www.healthrising.org/blog/2016/04/24/nath-nih-chronic-fatigue-syndrome-study-push-back/
 

viggster

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This issue of being at the mercy of reluctant volunteers deserves more response than I can give at the moment, so I'll quote Ken Friedman's post from Health Rising,

http://www.healthrising.org/blog/2016/04/24/nath-nih-chronic-fatigue-syndrome-study-push-back/
Yes, myself and ME Action and others have gone to Congress to get them to write language into a bill that would set up a permanent ME program office inside NIH. Getting Congress to do anything is difficult and it hasn't happened yet.
 
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What government office doesn’t receive angry email from citizens? Does everyone leave their jobs because of them? Do people really think that no one will study us and it will all just stop after Dr. Francis Collins gave press releases about taking this disease seriously? We live in a democracy; people are entitled to express themselves however they choose. (I personally haven't sent any emails; I'm just defending democracy and I'm not going to shame someone who has sent emails and judge what they've said in them or gossip about them.) What is Dr. Collin's going to say, that there were some mean ME/CFS patients that sent nasty emails, so the U.S. government research on this disease had to stop! This is beyond ridiculous! Why are we letting them bully us?

Three years (was that just phase 1?), plus whatever else the NIH has to do is too long and not enough. They aren't even studying severe patients. They aren't even studying long-term patients. What kind of study is this that isn't even studying the sickest people? What kind of government is this that won't fund those studies? What about the care we need now? We need centers of excellence so we can get care and we need the research and feedback they would generate. We need home care. Why won't they collaborate with Dr. Ron Davis? Dr. Ron Davis gave a 5-10 year timeline. What if it's longer? People are talking about curing this disease and I hope that they can but look at all the other diseases that aren't cured. Why are we going to be any different? We need lots of serious research and treatment choices and maybe years and years and years of it. Plus, unexpected things happen like Ebola and Zika that take away time and money from our disease. We need a strong foothold. Who knows what will happen next. This is research for about 2.5 million people in the U.S. and it will affect about 17 million people worldwide. It's been said by Dr. Ron Davis that it's going to take a worldwide collaboration of top scientists to solve this. It's also been said (was it Dr. Collins?) that it's going to take an army of scientists to solve this. Yet the NIH is not taking us seriously.

Why is there such inertia in this community about moving the inertia in the government? Why are we on the defensive all the time like we are the ones that did something wrong? Where does this masochism come from? Have we run out of ATP for self-esteem, for self-respect, for self-preservation? I'm not going to apologize for not dying quietly enough for them. What we do here isn't just about our lives either; it's about those that haven't made it this far (stop reading and say a prayer in your own way for them now), and it's about all of those that will come after us too. I'm an only child and because of this disease, my branch of my family tree ends with me. Think of all the generations that came before you and all that they had to endure for you to even exist. Now consider that ending with you because of the politics of this disease. I have some Blackfoot ancestry on one side of my family. On the other side of my family, my great grandmother came to America as a teenager from Poland, but her brother wasn't so lucky; he was shot and killed by a Nazi soldier in Poland when he was gathering firewood. I was never well enough to have children; I got sick at age 17. Now, I'm 50, divorced, bedridden and poor. I don't want to tell another generation that I'm sorry you couldn't get medical care or have children. You see there was this fuss about email and ….

The only thing that people seem to agree on in numbers is PACE. That petition got over 12,000 signatures. Is there something that 12,000 (or more; I'm greedy) of us can agree on? Is there something we can do to come together to effect more change? We can write it politely and strongly. It can acknowledge what is being done and that we are grateful for that but that it's not nearly enough. We can numerically list the things we would like done and refer to those numbered items when we send email so they can further refer to this petition list. It will help us communicate with them (and each other). We can list the things we need. We can voice our concerns about what's being done so that it's on record. For example, we can make note of the researchers that have published research drawing conclusions contrary to the IOM and P2P reports. We can list the people involved who still advocate CBT and GET. Can we all write this together here with each other's input? If we all write it then maybe we'll all sign it! This is all very reasonable if we don't get distracted by other things. With all the writing that goes on here every day, it could probably be done rather quickly too if we don't go around in circles. Can we meld all of our voices into one where each concern that we list is strongly and politely stated and we don't back down. It can be a standing petition and if they do things, a cross out line will go through that item. Maybe this large petition could generate sub-petitions. For example, they fund centers for excellence which was maybe item #4 on our petition and we make a sub-petition specifically for those centers of excellence. We say thank you and then go into more details about what we still need for those centers that are being funded. This would help us all hone our voice together in one place and use that to communicate with the NIH and the media. There is so much power that could be harnessed here is we worked together. It could draw even more people into this forum and make us stronger still.


On another note, and in response to other comments I've read, (I'm sorry I can't get people's quotes; I shouldn't even be writing) I wonder how much Whitney Dafoe and the actions/activism of his family has to do with the movement we are now seeing in the NIH. Having the son of a top scientist in the world dying at home because for 3 decades the government wouldn't take this disease seriously doesn't look very good.


Thank you to everyone who took the time to read this.
 

Bob

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We live in a democracy; people are entitled to express themselves however they choose. (I personally haven't sent any emails; I'm just defending democracy and I'm not going to shame someone who has sent emails and judge what they've said in them or gossip about them.) What is Dr. Collin's going to say, that there were some mean ME/CFS patients that sent nasty emails, so the U.S. government research on this disease had to stop! This is beyond ridiculous! Why are we letting them bully us?
Fair points, except I honestly haven't seen any bullying. I don't know what you mean. It's not been my interpretation of events anyway. In the recent webinar, Nath was simply expressing his opinion that it's been a tough process for them and that he doesn't think the controversy has helped him recruit collaborators. He might be wrong, but that is his opinion, and he's entitled to express it, just as we are entitled to express ours. And he wasn't threatening to pull the plug on the project or to walk away.
 
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Fair points, except I honestly haven't seen any bullying. I don't know what you mean.
Then please ignore this sentence Bob.

If there are other things that I wrote that other people don't understand or like or agree with, please ignore them. If we were to ignore all of the sentences that we don't understand or like or agree with in other people's posts, would there be anything left that we could all agree on and create together to help our cause?

I'm not posting to socialize or debate. I am terribly ill. I am hoping people will come together and that we can harness our energy to do something fruitful.
 

Bob

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Reading some of the recent posts, I worry that some people are reading these forum threads more than they are reading and interpreting the NIH material directly. There's been such an intense amount of frenetic criticism of the NIH's plans that I think people are in danger of only being subjected to negativity rather than the positive developments.

I don't recognise the facts/events that some of the recent criticisms have been describing. It baffles me. These NIH threads are intensely depressing for me, so I usually try to stay away, but I think many people perhaps read them and take it all at face value, when in fact the discussions are focused on the negative aspects of the study for a specific reason.

For me, personally, I interpret the NIH plans as 95% positive and 5% negative. I'm over the moon about what they are doing. I can't believe that this huge opportunity is going ahead. The study is almost indescribably complex and sophisticated, and we've never seen anything like it but have been asking for it for decades.

Yes, the 5% unhelpful stuff needs addressing, and it needs addressing robustly, but I think it's unfortunate to lose sight of the good stuff that's going on because we are angry about the bad stuff. I think the community has spent so little time and energy analysing and discussing the good stuff that its become invisible and many people aren't even aware of it. And I think this, in itself, is breeding much anger and dissatisfaction.

It's got to the point where I don't recognise much of the stuff that's being said, and I just avoid these threads because they bewilder and frustrate me so much. I get frustrated because I believe that the study is being vastly misrepresented and that's breeding bad-will within the community.

I recognise that there are lots of different and strong opinions about this, and that many people won't agree with me. But I do worry that people haven't actually read through the full study design and fully understood it. I don't understand it all and I have a science background.

Brian has been criticised on this thread for criticising certain advocacy efforts, but on the other hand, people who want to engage with the NIH in a more collaborative or collegiate nature have now been described as masochistic, and lacking in self esteem etc. I find that to be quite an aggressive attack on anyone who prefers a less combative approach to advocacy. And I think it stems from a misunderstanding of: the study itself; what people are actually doing behind the scenes; and the reason why people advocate for different methods of engagement. A less hostile form of engagement doesn't equate to a less robust form of engagement. It can simply be a different method to extract similar outcomes.

There's no disagreement within our community that things need to change. The disagreements are mainly about the best methods we would use to successfully bring about the outcomes that we want, and often about the finer details of what changes we should be prioritising. (e.g. no one disagrees that we need an RFA from the NIH.)
 
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Bob

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Then please ignore this sentence Bob.
We are allowed to disagree with each other, Laurie. We can express different opinions. I'm not going to ignore stuff you say if I think it needs challenging. I appreciate that you are very ill, but you can't expect to post strong opinions on the forum with the expectation that no one responds because you are ill. You are entitled to express your opinions and I'm entitled to respond.
 
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Bob

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Why is there such inertia in this community about moving the inertia in the government?
We must be watching entirely different communities at work because I've seen the opposite of inertia in action in our community. The NIH said that they've never seen anything like it. The community has extensively lobbied the NIH. And people have lobbied congress too. In fact, I've never seen such a heavy amount of action as we have going on at the moment. If you think there is inertia, then I suggest getting off these negative threads, and engaging elsewhere in something positive. There is no end of opportunity for positive engagement in our community. I struggle to avoid it. You could start up a new thread if you want to stimulate a specific project, e.g. based on the great suggestions that you've made above. I think that would be a great thing to do.
 

duncan

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One man's negativism is another's realism, @Bob.

Yes, there are exciting and very positive elements in the NIH study. They look promising. Some good people are being volunteered. Some exciting technologies being deployed.

But it is only realistic to observe that none of that talent, none of that technology, will give way to meaningful results if the people being studied are not pwME. Nath's attempted dismissal of that point did little to alleviate concerns.

Much if not most of the recent criticism has been directed at the flaws in the recruitment process and the controls. If 95% of the study is a big positive, and only 5% is negative, but that 5% results in drafting the wrong cohort, or exposes the results to bias, then the spectacular 95% is rendered meaningless. Worse than meaningless if they draw conclusions based on the wrong phenotype, or a psych influence is realized.

I get the sense that people don't want to rock the boat, and I appreciate that. I just don't want to land in Wessley's ship.
 
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Bob

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One man's negativism is another's realism, @Bob.
I'm not criticising the fact that people are criticising the study. I'm criticising what I see as imbalance because I think some people are being unduly influenced by what they read on the forum threads, and it's breeding an unnecessary and ill-informed resentment. For example, I read this thread before I watched the video and, based on the thread, I thought that the video would be a travesty of truth and justice. But when I watched the video, I thought it was a very candid and positive engagement from an individual scientist. It wasn't perfect and I had some questions about some minor issues.

Obviously my interpretation is not universal, but if I'd only read the thread and not watched the video then my understanding/interpretation of events would be the polar opposite of what they are now. I worry that some people haven't taken the time to interpret the science of the study for themselves and have been unduly influenced by the negative discussions.

But it is only realistic to observe that none of that talent, none of that technology, will give way to meaningful results if the people being studied are not pwME. Nath's attempted dismissal of that point did little to alleviate concerns.
It is indeed realistic to require a decent cohort. But I can't see any problems with the cohort plans. It's based on CCC, the patients are coming from the clinics of our well-known clinicians, and there is a team of people (including Lipkin) enlisted to ensure that recruitment is adhering to a rigorous process. I honestly don't understand what's not to like. Again, there is 100% negativity about this, when there may be 5% issues with the process, if any. The overwhelming negativity, in my opinion, is colouring the facts.

I get the sense that people don't want to rock the boat, and I appreciate that.
It's not about that for me. I don't mind boats being rocked. I haven't criticised advocacy efforts. I'm only criticising what I see as overwhelming negativity because I think it has unintended consequences.
 
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duncan

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@Bob, if the cohort selection process were any more porous than it already is, then we'd all be sunk.

All three legs of the patient selection and screening process have objectional elements. And fascinatingly, all three legs can be repaired with minimal effort.

It just takes doing.

Listening, first, though...

But then the doing.
 

Bob

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BTW, obviously I can't tell people how to react to events, or what people should be discussing, or how people should discuss what they want to discuss, and I expect that my comments will have no impact on the forum. But I just wanted to explain that I think there's an imbalance on the forum, and to point out that it might be having an unintended impact on the community. I know that there are a number of us who feel very positively about the NIH study, with reservations, but that we haven't been saying much. I agree with many criticisms that have been raised, but I think there are two sides to the story, and one side is getting undue prominence. I have to avoid what I see as unrelenting negativity, especially when I see it as unrepresentative of the facts.
 

duncan

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And THAT is precisely why we openly discuss and engage in debate, in the hopes at arriving at a semblance of the truth.

Lord knows I don't know. I'm just expressing my thoughts, as you are and everybody has been.

When we stifle that, the prospect of progress dims dramatically.
 

Riley

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I agree with @Bob. I did not listen to the webinar live and only followed the discussion on the forums. As a result I was feeling pretty depressed about the whole endeavor.

Now that I've read the actual transcript, I'm over the moon about this study! The only thing I don't like is how long it will take, but there's nothing that can be done about that.
 

Sasha

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This issue of being at the mercy of reluctant volunteers deserves more response than I can give at the moment, so I'll quote Ken Friedman's post from Health Rising,

http://www.healthrising.org/blog/2016/04/24/nath-nih-chronic-fatigue-syndrome-study-push-back/
I agree with your point that we shouldn't be at the mercy of people volunteering but right now, we are, and I think we have to take that into account in how we act.

Yes, myself and ME Action and others have gone to Congress to get them to write language into a bill that would set up a permanent ME program office inside NIH. Getting Congress to do anything is difficult and it hasn't happened yet.
Thanks, @viggster - much appreciated.
 

Roy S

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I wonder how much Whitney Dafoe and the actions/activism of his family has to do with the movement we are now seeing in the NIH.
I've been thinking that Ron Davis communicating with Francis Collins is probably the second most effective recent advocacy after Courtney Miller getting the President of the United States involved.
 

Comet

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I am also thrilled about this study and Dr. Nath. It's not perfect, but the more I hear about it, the more excited I am.

In fact, now that I have learned why the FMD group was going to be included in the first place, I think it was a mistake for us to object to it. But we didn't know at the time what the reasoning behind it was. Communication seems to be improving.

The reason I posted what I did a few pages back is that I just don't want to hear anymore why 'they can't.'
 

LiveAgain

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I wasn't going to say anything more but I can't take it. The individuals in charge of this study caused this problem by including doctors who have written or stated that ME/CFS is psychological, plus added a psych control group (still no good explanation why). And now they're upset that patients responded with justifiable outrage? They created this monster. The FMD group is gone because of public outcry - and really all they did was remove a group that should never have been there to begin with. Dr. Nath stated he isn't interested in somatization and doesn't want to play psychological games. Exactly our point!

You know, I watched a documentary the other night (HBO on demand) on Larry Kramer, AIDS activist... He and others were very publicly angry, confrontational, demanding and "nasty" back then. He laid into Tony Fauci personally. Scientists weren't like 'well if you're going to be so mean about it we aren't going to study your disease!' How absurd is this?

I think to possibly make things better they need to have someone who understands the history address patient concerns in a thoughtful, compassionate way. ME/CFS has a unique and troubled history that requires a certain level of sensitivity. Maybe then the angry e-mails, tweets, blogs, and whatever else will stop.