NIH phonecall and Q&A, Tues 8 March

[BurnA]

Good point. They are getting those patients from the clinics used in the other multi-site study, and Dr Lapp has expressed a belief that a gentle form of GET "can be of great benefit".

Dr Lapp's clinic in North Carolina is the 3rd closest to the NIH out of the 7 clinics, after the clinics in New York and New Jersey. How many CF patients who find that GET is of "great benefit" will be sent to the NIH as potential patients? Will it be enough for the psychosomatic trio of investigators to pack the study with them?

Maybe the strategy should be to go after the referring clinicians list instead of Walitt?
NIH would probably be more amenable to that.

 

[LiveAgain]

It may be a legitimate concern but I dont think it's worth worrying about.
If they dont look, they will definitely never find anything, so you should be relieved that they are looking. Also they are looking in ways they haven't looked before.
I'm sure they will find something but that really is just the starting point.

But my point is IF they don't find anything significant and there's no guarantee they will (wrong hypothesis, wrong tests, wrong patients, who knows), I fear this will confirm Walitt's and others bias (in their mind) and they could spin it like is happening with GWI. Just wish doctors like that weren't involved at all but agree with another poster, that shipped has probably sailed. Our concerns have been expressed verbally and in writing - they are well aware. Just hope it's enough to prevent a disaster.

 

[viggster]

Did all the advocacy groups give up?

What makes you say that? I think people here are being unrealistic about how quickly they want things to happen.

Also, a trusted source told me Dr. Nath and Dr. Whittemore are receiving nasty emails. This really isn't going to help anything. Whittemore has nothing to do with the intramural study, for one thing.

Edit: I'm not suggesting anyone on this thread is sending these messages, but I don't know who's doing it, so I thought I'd mention it here. Also, I talked with Marian Emr, head of communications at NINDS, the other day, and I told her that such nasty, negative, personal attacks are NOT representative of how most of the community feels. I also told her to pass that message along to Nath and Whittemore.

 

[Riley]

Maybe the strategy should be to go after the referring clinicians list instead of Walitt?
NIH would probably be more amenable to that.

This is getting a little ridiculous. Who would you replace them with? These are pretty much the only clinical experts in the world.

While I don't agree with Dr. Lapp recommending GET, he has been seeing solely CFS and Fibro patients 20+ years. He also has 25+ years experience in pediatrics and internal medicine. I guarantee you he knows how to diagnose ME/CFS properly.

Having said that I wouldn't mind if they put Dr. Peterson solely in charge of cohort selection.

 

[duncan]

Why is it that it seems that so often when the patient community speaks up for itself because it has been painted into a corner, it gets accused of various degrees of harassment? Geez, it seems to be accused of this even in the absence of any protests.

Emails that contain "nasty, negative, personal attacks?" Who says so? Examples?

I no longer take such accusations as automatically carrying merit. Proof please.

Personally, I cannot think of many things more nasty, negative and personal than having at least three individuals in influential roles for this study that seem to believe we are not really sick.

 

[viggster]

Why is it that it seems that so often when the patient community speaks up for itself because it has been painted into a corner, it gets accused of various degrees of harassment? Geez, it seems to be accused of this even in the absence of any protests.

"Nasty, negative, personal attacks?" Who says so? Examples?

I no longer take such accusations as automatically carrying merit. Proof please.

Personally, I cannot think of many things more nasty, negative and personal than having at least three individuals in influential roles for this study that seem to believe we are not really sick.

I just said so, after talking with someone whom I trust and who has seen the messages. You can believe me or not believe me, your choice.

 

[duncan]

An effect of this accusation may be to subdue criticism of the study.

That I believe.

 

[viggster]

An effect of this accusation may be to subdue criticism of the study.

That I believe.

I think if someone at NIH publicly said they were receiving personal attacks via email, say in a news story, asking for evidence would be reasonable. But that's not what's happening. Someone gave me this information and I decided to share it. That's it. I thought about whether I wanted to mention it here or not, and decided that it was important enough to say it here. But I'm not saying it publicly on twitter or anywhere else.

 

[Aurator]

Also, a trusted source told me Dr. Nath and Dr. Whittemore are receiving nasty emails...I talked with Marian Emr, head of communications at NINDS, the other day, and I told her that such nasty, negative, personal attacks are NOT representative of how most of the community feels. I also told her to pass that message along to Nath and Whittemore.

You could have passed a slightly different message along for me: that not only are nasty personal attacks not representative of how most of the community feels, but some people in the community actually get really angry when imbeciles with no self-control end up writing nasty letters directly to researchers and giving them a piece of their mind.

Giving a whole worldwide community of sick people a bad reputation and potentially jeopardizing their chances of finding a cure just because you couldn't refrain from letting rip personally at a researcher puts you beyond the pale, as far as I'm concerned.

 

[viggster]

Update from Solve ME/CFS Initiative on meetings in Washington this week:
http://solvecfs.org/Carol+Head+Meets+with+NIH+Congressional+Staff

 

[viggster]

Giving a whole worldwide community of sick people a bad reputation and potentially jeopardizing their chances of finding a cure just because you couldn't refrain from letting rip personally at a researcher puts you beyond the pale, as far as I'm concerned.

The NIH people I've spoken with understand that it is a very small percentage of the patient population. But it takes time and energy to deal with, and nobody likes seeing a personal attack in their inbox.

 

[BurnA]

Why is it that it seems that so often when the patient community speaks up for itself because it has been painted into a corner, it gets accused of various degrees of harassment? Geez, it seems to be accused of this even in the absence of any protests.

Maybe because it happens. I believe that unfortunately.
How do you define protests ?
Petitions calling for the study to be cancelled ?
NIH director receiving abusive tweets ?

I don't believe it's a conspiracy. I believe there probabaly are a few patients out there willing to write inappropriate emails. If they are I wish they'd stop.

 

[duncan]

Years ago, in a very different capacity, and not at all related to this study, or even ME/CFS, I complained to the NIH via emails. I also complained in person and on the phone.

I offered up at that time what I believed valid concerns and criticism. I think (hope) I conveyed my criticisms professionally.

I would not be surprised, though, that those on the receiving end viewed those criticisms with something akin to aghast horror, as I doubt they were used to a patient challenging and second guessing them.

Perhaps that is what is happening here. I don't know.

I agree, though, @BurnA, that it is possible ill-conceived emails were sent, and I know none of us would condone such emails. If they have happened, I too hope they stop immediately.

And @viggster, I want to make it clear I do not doubt your word.

That being said, I will not lessen my criticisms of the study, as it is currently proposed, on this forum as long as I think they are valid, and that I believe they may help our community.

 

[Bob]

There's a huge difference between passionate heart-felt criticism of the NIH, and personal attacks. On this forum, I think we all know the difference, but I wouldn't be surprised if a few individuals had crossed the line. Feelings have been running high. It's a shame that it happens, because it achieves nothing, is counterproductive, and undermines the good work that everyone else does. But we can't do much about it.

 

[Bob]

Years ago, in a very different capacity, and not at all related to this study, or even ME/CFS, I complained to the NIH via emails. I also complained in person and on the phone.

I offered up at that time what I believed valid concerns and criticism. I think (hope) I conveyed my criticisms professionally.

I would not be surprised, though, that those on the receiving end viewed those criticisms with something akin to aghast horror, as I doubt they were used to a patient challenging and second guessing them.

But you know the difference between a nasty personal attack and valid criticism of an organization. I've sent various challenging emails over the years to various organisations, and have usually had a polite response. I don't think people take offence until things get quite personal or nasty.

It rarely goes down well if an individual's competency is challenged so that might be causing issues on this occasion.

That being said, I will not lessen my criticisms of the study, as it is currently proposed, on this forum as long as I think they are valid, and that I believe they may help our community.

As you know, I don't always agree with your opinions, Duncan, but I support your right to criticise government agencies. No one is asking you to tone down you criticisms.

 

[LiveAgain]

The recording of the phone conference is available. I feel a little better hearing their voices... they do sound sincere and like they get it. Fingers crossed.
http://www.nih.gov/nih-me/cfs-advocacy-call

 

[Bob]

https://twitter.com/i/web/status/708406664177831936

 

[viggster]

And @viggster, I want to make it clear I do not doubt your word.

That being said, I will not lessen my criticisms of the study, as it is currently proposed, on this forum as long as I think they are valid, and that I believe they may help our community.

Thanks for saying that. I don't think anyone should stop criticizing the study. I have concerns with some aspects of it as well. And I certainly don't know how a lot of decisions were made. I wish Walitt was not involved. And I will be very disappointed and angry if NIH does not follow through and formalize patient input for the intramural study and the wider new program they are planning.

 

[jamie]

Most of what I looked at is summarized in the first post of http://forums.phoenixrising.me/inde...the-upcoming-post-infectious-nih-study.43223/

I'm not up to doing much else currently, due to an ingrown toenail which is swollen, pretty painful, and trying to get infected. So I'm on the couch and zoning out mostly.

Ouch sorry to hear and hope you feel better soon. Thanks for all your hard work. It's the most comprehensive and illuminating on the trial participants and just thought a lot of people would find it useful.

If I gave the impression that I was advocating sending nasty emails that is not the case. I mentioned Nath as a possibility of someone who might find it useful mainly because he is well regarded among the community and repeatedly states that he likes and values getting patient feedback.

It seems really odd that he would be getting hate mail out of everyone involved.

Maybe my own feelings of anger over the inclusion of these people in the study gave that impression plus my brain functioning level is low lately to say the least. I knew I wasn't and know I'm not communicating well now. Sorry for that, just felt the need to brainstorm how to keep those specific doctors from becoming an obstacle to a good study.

 

[jamie]

What makes you say that? I think people here are being unrealistic about how quickly they want things to happen.

Also, a trusted source told me Dr. Nath and Dr. Whittemore are receiving nasty emails. This really isn't going to help anything. Whittemore has nothing to do with the intramural study, for one thing.

Edit: I'm not suggesting anyone on this thread is sending these messages, but I don't know who's doing it, so I thought I'd mention it here. Also, I talked with Marian Emr, head of communications at NINDS, the other day, and I told her that such nasty, negative, personal attacks are NOT representative of how most of the community feels. I also told her to pass that message along to Nath and Whittemore.

I read somewhere that one of our advocates who met with the NIH people, when she was told that there was much surprise over the amount and passion of replies they were receiving from the patient community, she took some time to explain that we aren't like most patients. Due to the decades long antagonistic history with the government agencies there will be a high level of scrutiny and distrust until proven otherwise.

Also that having to become our own experts by default made many more knowledgeable of the science than most patients of other diseases where they have doctors to tell them what to do,

While not condoning bad behavior, at least understanding where the pain of decades of neglect and abuse might come from helped the people she spoke with understand better the reason it might happen and that most of us while wanting a fresh start need to see results before we can relax.

Anyway I thought that was a nice way to sort of stick up for us as a whole and make us seem less crazy and more understandably desparate while still condemning any abusive behavior. We have good relationships with our experts so we aren't universally crazy for no reason in general,