Hear More on Tuesday about NIH study during CDC’s Grand Rounds

[Valentijn]

Investigators for the Nath study:

 

[Sasha]

My computer nor my phone would work Im kinda bummed out. I really wanted to watch this.....

It will be put up on the net in a couple of days.

 

[Sasha]

I was pleased to hear Dr Nath talking approvingly of dealing with ACT UP during the 80s and looking forward to working with the Patient Advisory Group - and I was pleased to hear that there'll be one.

I'd like to have heard the rationale for the FMD control group but I hope he's rethinking that.

 

[sarah darwins]

I was pleased to hear Dr Nath talking approvingly of dealing with ACT UP during the 80s and looking forward to working with the Patient Advisory Group - and I was pleased to hear that there'll be one.

Yep, encouraging moment.

But I was a bit underwhelmed. Throughout I was wondering what a typical MD would have made of it. Not sure it would have had much impact at all. I was hoping for more of a feel of a fresh start and a clearer sense of breaking with the past.

In particular I didn't feel any sense of an awareness of just how devastating this illness is for many sufferers. it destroys lives, but nobody really made that clear, and this felt like the time to do it.

 

[mango]

here's an audio recording, for those of you who don't want to wait until the official one is published:

http://www107.zippyshare.com/v/GQFSakcm/file.html

 

[viggster]

I started a new thread for details of the study. Nath's presentation went by quickly...please add to it if you can.
http://forums.phoenixrising.me/index.php?threads/details-on-nih-study.43076/#post-697548

 

[Forbin]

I think Dr. Nath said that they were going to look at "not just a small number of cytokines, but 1500 lysate analytes" and 2500 proteins in another proteomics assay developed by Dr. Nath.

By comparison, Columbia's study looked at 51 cytokines, but Columbia also looked at about 300 patients - as opposed to just 40.

 

[Never Give Up]

Things that stood out to me:

The CDC multi site study recruited mostly middle aged, educated, wealthy people who not working, and not on disablility(no discussion of the difficulties getting such disability), patients studied had the resources to seek and obtain specialist care

Exercise...

Dr. Kamaroff is a great speaker

Dr. Unger's unpublished multi site study is a foundation for the new study

Patients have much better mental health than controls, which makes me wonder if the patients taking the surveys were trying to avoid seeming mentally ill

Dr. Nath's study seems quite comprehensive

They are responsive to patient feedback

Dr. Nath thinks ME/CFS is a Neuro immune response to Infection

 

[Sasha]

Things that stood out to me:

Mostly middle aged, educated, wealthy people are sick, not working, and not on disablility(no discussion of the difficulties getting such disability)

I didn't get that message at all - rather, that those are the people with the resources to get to specialist treatment.

 

[beaker]

Things that stood out to me:

Mostly middle aged, educated, wealthy people are sick, not working, and not on disablility(no discussion of the difficulties getting such disability)

I wish I were in that old tired Yuppie category. It's been disproven time and time again. Look at all the kids that got sick in lyndonville . I didn't watch, so maybe I will wait until I hear it myself before I comment further on that.

 

[searcher]

Dr Unger specifically mentioned that it affects the poor and minority disproportionally. But the people who see specialists and are subsequently in the CDC study do tend to be wealthier and whiter than the average patient.

 

[Scarecrow]

Patients have much better mental health than controls, which makes me wonder if the patients taking the surveys were trying to avoid seeming mentally ill

The slide I recall showed that patients scored very slightly less on mental health and emotional role but were much, much worse on the other SF-36 categories such as physical function and vitality.

 

[Valentijn]

Patients have much better mental health than controls, which makes me wonder if the patients taking the surveys were trying to avoid seeming mentally ill

It was average, from what I recall? The normal scores for those was pretty high.

 

[Simon]

The NIH clinical center study will have a Patient Advisory Committee (members to be determined.) It sounds like they are listening.

I was pleased to hear Dr Nath talking approvingly of dealing with ACT UP during the 80s and looking forward to working with the Patient Advisory Group - and I was pleased to hear that there'll be one..

That is really encouraging.

 

[Roseblossom]

Yep, Lapp went downhill fast and started repeating just about every wrongheaded piece of 'received wisdom' out there. Any chance he might step aside? He's not going to help.

Yes, my heart sank more & more as his presentation went on.

If he's seeing such a large percentage of improvement/recovery using antidepressants & other drugs, and graduated exercise building up to aerobic exercise, then he must be studying patients who only have chronic fatigue due to depression or something... not studying patients who have ME/CFS.

What a shame they started with that and used up such a big chunk of the precious time-limited hour.

I had questions for Dr. Anthony Komaroff (who was very good) and the others, but they ran out of time.
.

 

[BurnA]

Patients have much better mental health than controls, which makes me wonder if the patients taking the surveys were trying to avoid seeming mentally ill

It fascinates me how some people find it difficult to accept results.

How can anyone try to avoid seeming like they are mentally ill.

This is only possible if they

a) are mentally ill and b) smart enough to know how to outwit a mental health examination and c) able to conceal their mental illness

Maybe they were just not mentally ill ?

 

[Never Give Up]

I agree with your critiques of my post. Turns out sleep is important for communication and clear thinking...

 

[beaker]

It fascinates me how some people find it difficult to accept results.

How can anyone try to avoid seeming like they are mentally ill.

This is only possible if they

a) are mentally ill and b) smart enough to know how to outwit a mental health examination and c) able to conceal their mental illness

Maybe they were just not mentally ill ?

Many surveys/screens for mental illness have questions that if answered honestly by someone w/ a chronic illness would come out as pos for MI.
ie
Answer Y or N
~ I have a lump in my throat and trouble swallowing. MECFS: ~Yes ( bc my lymph nodes are like golf balls)
~I'm tired all the time MECFS: Y . Duh
~I have trouble sleeping
~ I'm worried about my health
~ I have pain in my stomach.
on and on

Get the idea ?
I don't know what surveys they used. But if you've been in studies and taken enough of them you know what questions will trip you up.
Possible patients knew enough to answer those as if they were well, and it skewed there results.

And as for those w/ mental illness. It can be easily masked and depending on the kind, a person may or may not wish to answer their survey accordingly. It's really not that hard. Although I don't think this is what you had in mind, an example is my mother who had dementia could fake her way. We went to a Geriatric Center at a medical school that specializes in dx different types of dementia. She completely pulled wool over their eyes, even with several days of different standardized testing and interviews. They acted like my sister and I were the ones who were not well and were being horrible to my mom.

 

[Never Give Up]

Many surveys/screens for mental illness have questions that if answered honestly by someone w/ a chronic illness would come out as pos for MI.
ie
Answer Y or N
~ I have a lump in my throat and trouble swallowing. MECFS: ~Yes ( bc my lymph nodes are like golf balls)
~I'm tired all the time MECFS: Y . Duh
~I have trouble sleeping
~ I'm worried about my health
~ I have pain in my stomach.
on and on

Get the idea ?
I don't know what surveys they used. But if you've been in studies and taken enough of them you know what questions will trip you up.
Possible patients knew enough to answer those as if they were well, and it skewed there results.

And as for those w/ mental illness. It can be easily masked and depending on the kind, a person may or may not wish to answer their survey accordingly. It's really not that hard. Although I don't think this is what you had in mind, an example is my mother who had dementia could fake her way. We went to a Geriatric Center at a medical school that specializes in dx different types of dementia. She completely pulled wool over their eyes, even with several days of different standardized testing and interviews. They acted like my sister and I were the ones who were not well and were being horrible to my mom.

This is exactly what I meant.

 

[Justin30]

Listening to that was good. I can see that the NIH AND CDC are least taking it more seriously.

Dr. Lapp made some very important points but highlighted to much CBT, Get, Pain and Sleep Meds which are just band aids for the neuro immune dysfunction that he is well aware of. He uses ampligen!!!!! He should have said we need better drugs. I would have liked him to focus on the disability even with the presence of medications available as these are just band aids and in the majority of cases only provide minor QOL improvements.

I thought Dr. Unger could have talked less. She propsed only 1 million people in the US have this. I question this as back in 2011 Canada had 411,000 diagnosed cases and we only have 36 million people and we have been using CCC criteria. Clinicians have very little training if none on CFS and many in the US are limited by the amount of medical coverage available. I would place a bet that 50% or more US primary care providers either dont believe in it or dimiss it as a psychiatric dosorder or misdiagnose. I think the stats grossly skewed and if affects more people than MS, ALS, etc. Spend the money!!!!!

Anthony thank God you were there. I appreciated eveythiny he had to say.

Dr. Nath i would have really liked him to have reffered a bit more to the Neurological bases of the disease. He appears to be very intellectual but not the best speaker.

My next hopes would be that they release huge funding to this disease as it will be very persuasive changing the thoughts and perspectives of those in Britain, Canada, Australia, and certain countries in Europe.