NIH intramural research program update

[Simon]

Thank you, NIH, for listening to patient concerns.

https://twitter.com/i/web/status/706520262993432582

edit: link should now work

Hopefully they will retain a study group of 100 and re-allocate those 20 FMD controls slots to other groups (make bigger, or bring in a new control group - I have no more information).

 

[leela]

A thousand Likes!

 

[BurnA]

It's certainly a good start but ideally we want those places filled by CFS/ME patients.

 

[Sasha]

FMD group has been dropped!

http://forums.phoenixrising.me/inde...sorder-control-group-from-me-cfs-study.43487/

 

[Comet]

Thank you, NIH, for listening to patient concerns.

https://twitter.com/i/web/status/706520262993432582

edit: link should now work

That they are listening to, thinking about and responding to patient concerns is a huge stride forward. This is fantastic.

 

[Kati]

Thank you, NIH, for listening to patient concerns.

https://twitter.com/i/web/status/706520262993432582

edit: link should now work

Hopefully they will retain a study group of 100 and re-allocate those 20 FMD controls slots to other groups (make bigger, or bring in a new control group - I have no more information).

That's nice. But they are still not budging into regards to Walitt and this is concerning to me.

 

[Denise]

That's nice. But they are still not budging into regards to Walitt and this is concerning to me.

@Kati I understand your concern and hope that if you have info regarding their not budging on Walitt you will share it. (His participation in running the study is a big concern.)

Has NIH released additional information about proposed changes to the study?

 

[Kati]

@Kati I understand your concern and hope that if you have info regarding their not budging on Walitt you will share it. (His participation in running the study is a big concern.)

Has NIH released additional information about proposed changes to the study?

I do not have further info. I was simply commenting that Walitt's presence is of huge concern to the community.

 

[leela]

Yes but we have no idea at this point what their budge factor is

 

[Valentijn]

I do not have further info. I was simply commenting that Walitt's presence is of huge concern to the community.

I want him out too. But I expect that to take longer, as removing investigators from a study is something which probably requires more delicacy and discretion than axing a "control" group.

I'd like to see the Lyme group gone too. More than one control group makes me nervous, for reasons of statistical power.

 

[BurnA]

I want him out too. But I expect that to take longer, as removing investigators from a study is something which probably requires more delicacy and discretion than axing a "control" group.

I'd like to see the Lyme group gone too. More than one control group makes me nervous, for reasons of statistical power.

Yes that is why I think we should focus on getting more ME/CFS patients in the study.
Walitt is bad but his influence will be limitied depending on the quality of the data that comes from the study. The more patients the more robust that data becomes.

 

[mfairma]

I'd like to see the Lyme group gone too. More than one control group makes me nervous, for reasons of statistical power.

I don't see much value in comparing other groups about which not much is known to this one. That control compared to chronic lyme would be interesting. Has that been done? If not, it seems an odd choice to try to compare it to this disease.

 

[leela]

I'd like to see the Lyme group gone too. More than one control group makes me nervous, for reasons of statistical power.

Yes, likewise. Since many ME patients have diagnosed/undiagnosed Lyme, and there is so much symptom overlap, it is a very poor choice.
Why not simply healthy controls? Isn't that standard? No reason to muddy the waters.

 

[Stewart]

I want him out too. But I expect that to take longer, as removing investigators from a study is something which probably requires more delicacy and discretion than axing a "control" group.

This is exactly what I've been thinking. But I wonder if the removal of the FMD group makes it likely that he'll back off of his own accord? Without the FMD group is there anything else in the study that would be of interest to him?

 

[viggster]

Yes, likewise. Since many ME patients have diagnosed/undiagnosed Lyme, and there is so much symptom overlap, it is a very poor choice.
Why not simply healthy controls? Isn't that standard? No reason to muddy the waters.

There are healthy controls. And the Lyme patients are *asymptomatic*. They had Lyme and it resolved. They are not chronic Lyme patients. I don't think there's a dispute that such people exist, right? I know at least four people who were Lyme positive, had symptoms, and they are now 100% healthy.

 

[viggster]

This is exactly what I've been thinking. But I wonder if the removal of the FMD group makes it likely that he'll back off of his own accord? Without the FMD group is there anything else in the study that would be of interest to him?

Well he's said he wants to try immunotherapy for various illnesses, so I'm guessing the answer is yes.

 

[Valentijn]

This is exactly what I've been thinking. But I wonder if the removal of the FMD group makes it likely that he'll back off of his own accord? Without the FMD group is there anything else in the study that would be of interest to him?

I doubt he was the one who suggested the FMD group. Walitt deals with Fibromyalgia mostly. FMD is a pet interest of Hallett and his team, so I'd suspect it was their doing.

 

[leela]

There are healthy controls. And the Lyme patients are *asymptomatic*. They had Lyme and it resolved. They are not chronic Lyme patients. I don't think there's a dispute that such people exist, right? I know at least four people who were Lyme positive, had symptoms, and they are now 100% healthy.

Oh @viggster, I meant *only* healthy controls, for clarity.
What is the purpose of having recovered Lyme patients as a control group?
I know several recovered (formerly severely ill) Lyme patients as well. I hope you didn't take my post (or this one) as antagonistic.
I'm all for this study, and for it being the best it can be. I know emotions have run high here, and you don't know me. Ask @searcher, I'm not the enemy here.

 

[duncan]

@viggster , having been diagnosed with Lyme at one time and now being asymptomatic is not the same thing as being cured of Lyme.

As for whether chronic Lyme exists, the NIH people recruited from their Lyme team WOULD most likely dispute that it does. If you are talking about whether people are cured or not; my take is some are, but this cannot be proven. I would suggest the NIH may not say it can be proven either.

 

[Stewart]

Well he's said he wants to try immunotherapy for various illnesses, so I'm guessing the answer is yes.

Thanks for that. Is this something he's said/indicated recently? I'd seen that his bio on the NIH webpage mentioned an interest in autoimmune conditions, but it appeared to me as though that stemmed from his wider interest in pain and rheumatology... I'm still curious to get to the bottom of why he wants to be involved in this study.

I doubt he was the one who suggested the FMD group. Walitt deals with Fibromyalgia mostly. FMD is a pet interest of Hallett and his team, so I'd suspect it was their doing.

This is the downside of not having any scientific background and trying to make sense of scientific literature nonetheless - you assume that there are close connections between specific conditions (such as fibromyalgia and FMDs) and embarrass yourself when it has to be pointed out to you that this isn't actually the case. Thanks for correcting me Valentijn.