NIH Presentation on Chronic Fatigue Syndrome (ME/CFS) Study Hits the Mark

[Cort]

A few highlights - I'm working on a blog now

Collins, Koroshetz and Nath all spoke....

Collins - promised that the NIH is very committed to this research. The study will begin this summer. He ended by saying that "I know many of you have been waiting a long time for this kind of attention"...

Koroshetz said the intramural study is the just the beginning, that he doesn't expect this to be easy and that the NIH is committed to a long term effort and promised that they would stay the course. (I welled up a bit at that)

Believes it will take an army of really good investigators to figure out ME/CFS - they want to bring in the best and brightest...

The principal investigator Nath called in from the US Embassy in Liberia! (The Embassy was the only place he could get a phone line. I wonder how the conversation went....Can I use your phone? I need to talk to the chronic fatigue syndrome community ....

Nath said he has seen a lot of ME/CFS patients (who knew?). Said he was delighted to be researching it. The study will be able to determine if inflammation is present in the brain.

He's in communication with Ron Davis. They are not in contact with Staci Stevens - they;re using Dr. Unger for the exercise studies but are willing to talk to others.

Walitt is here to stay....He said all the right things - real disease, not in the mind, biological disorder, urgent need for treatments.

The most important thing for me was the statement that they expected this to be a long term effort and they promised to stay the course...

 

[Hello!]

I really appreciate that they are trying to do a good job with this, trying to engage with the patient community, and are responsive to our concerns.

I read somewhere that they would be making a recording of the call available online, any idea where that might be?

Liberia? What the what? Just shows you how important this call was to him.

Thanks, Cort!

 

[sharon]

A few highlights - I'm working on a blog now

Collins, Koroshetz and Nath all spoke....

Collins - promised that the NIH is very committed to this research. The study will begin this summer. He ended by saying that "I know many of you have been waiting a long time for this kind of attention"...

Koroshetz said the intramural study is the just the beginning, that he doesn't expect this to be easy and that the NIH is committed to a long term effort and promised that they would stay the course. (I welled up a bit at that)

Believes it will take an army of really good investigators to figure out ME/CFS - they want to bring in the best and brightest...

The principal investigator Nath called in from the US Embassy in Liberia! (The Embassy was the only place he could get a phone line. I wonder how the conversation went....Can I use your phone? I need to talk to the chronic fatigue syndrome community ....

Nath said he has seen a lot of ME/CFS patients (who knew?). Said he was delighted to be researching it. The study will be able to determine if inflammation is present in the brain.

He's in communication with Ron Davis. They are not in contact with Staci Stevens - they;re using Dr. Unger for the exercise studies but are willing to talk to others.

Walitt is here to stay....He said all the right things - real disease, not in the mind, biological disorder, urgent need for treatments.

The most important thing for me was the statement that they expected this to be a long term effort and they promised to stay the course...

Thanks for keeping us up to date, Cort...sounds good so far!

 

[Hello!]

Someone posted their notes from the call here http://www.meaction.net/wp-content/uploads/2015/04/NIH-community-call-3-8-16.pdf.

 

[Hello!]

The new description of the study is here http://mecfs.ctss.nih.gov/index.html .

Can you believe how they are describing the disease?

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) as defined by the Institute of Medicine is "an acquired, chronic multi-systemic disease characterized by significant relapse after physical, cognitive, or emotional exertion of any sort. The disease includes immune, neurological and cognitive impairment, sleep abnormalities, and autonomic dysfunction, resulting in significant functional impairment accompanied by a pathological level of fatigue. The cause of the disease remains unknown, although in many cases symptoms may have been triggered by an infection or other prodromal event". [1] There are no approved diagnostics tests or treatments.

I think they are really starting to get it!

 

[Gijs]

I like this: 'acquired, chronic multi-systemic disease', can we call this disease ACMD? The best i ever read. Good news Cort!

 

[nibs]

I checked some news coverage :

Monrovia, which is the Capital of Liberia, is described as the epicentre of the Ebola epidemic that began in 2014.

Is it possible that Dr Nath is considering Ebola survivors as an additional control group for his ME/CFS Study ?

 

[ScottTriGuy]

Is it possible that Dr Nath is considering Ebola survivors as an additional control group for his ME/CFS Study ?

Nath is a psychobabbler.

Many have concerns over his involvement in this study.

 

[Seanko]

Nath is a psychobabbler.

Many have concerns over his involvement in this study.

????!!!!!

1 mistaken identity?
2 don't use other people's catch phrases

 

[ScottTriGuy]

????!!!!!

1 mistaken identity?
2 don't use other people's catch phrases

Pardon my fog - I did indeed err - Walitt is the psychobabbler. (not sure who you want credited for that term )

 

[Seanko]

psychobabbler. (not sure who you want credited for that term

A certain opinionated retired immunologist on another forum seems to have coined the phrase.

 

[Cort]

I really appreciate that they are trying to do a good job with this, trying to engage with the patient community, and are responsive to our concerns.

I read somewhere that they would be making a recording of the call available online, any idea where that might be?

Liberia? What the what? Just shows you how important this call was to him.

Thanks, Cort!

The call is available but I can't find a way, yet, to attach it to a thread

 

[Cort]

The new description of the study is here http://mecfs.ctss.nih.gov/index.html .

Can you believe how they are describing the disease?


I think they are really starting to get it!

I think they are!

 

[Cort]

A certain opinionated retired immunologist on another forum seems to have coined the phrase.

I cannot imagine...

 

[Cort]

I checked some news coverage :

Monrovia, which is the Capital of Liberia, is described as the epicentre of the Ebola epidemic that began in 2014.

Is it possible that Dr Nath is considering Ebola survivors as an additional control group for his ME/CFS Study ?

Wouldn't that be interesting! ..there certainly is some interest about post-Ebola effects...I imagine that he's grabbing some blood......

Talk about getting some recognition and publicity. EVERY news outlet would pick a story comparing ME/CFS to Ebola. That would be a perfect strike!

 

[Hello!]

Wouldn't that be interesting! ..there certainly is some interest about post-Ebola effects...I imagine that he's grabbing some blood......

Talk about getting some recognition and publicity. EVERY news outlet would pick a story comparing ME/CFS to Ebola. That would be a perfect strike!

Who is going to suggest it?

 

[Seanko]

@Cort & @Hello! Ian Lipkin at Columbia Uni is a top Virus guy & I believe Columbia were involved in research during the Ebola crisis...Dr Nath could do it...

Probably not a good idea for Brian Wallit to get involved in this one

 

[IrisRV]

A certain opinionated retired immunologist on another forum seems to have coined the phrase.

While the term psychobabble has been around for a long time, that particular individual has taken to describing anything he doesn't like and/or understand as [whatever]-babble, so it has become a catchphrase of his. I find myself loathe to even use 'psychoobabble' any more.

He's not a trained immunologist, is he? I thought he was a rheumatologist or something of that ilk. He's not an ME/CFS specialist, either.

Is it possible that Dr Nath is considering Ebola survivors as an additional control group for his ME/CFS Study ?

I doubt it. He does have things on his plate other than ME/CFS. Still, imagine the publlicity we'd get if he were making such a connection!

I like this: 'acquired, chronic multi-systemic disease', can we call this disease ACMD?

I like it, too. It's even sort of pronounceable without being laughable. I have Achmed.

 

[nibs]

If Ebola survivors were to be used as a control group in the current study, wouldn't they need to be brought to the NIH Center in Bethesda ?

A planeload of Ebola survivors arriving in the US ?? That not only would attract attention, it might scare some people.
Have any survivors had a reactivation of the Ebola virus? Are they carriers? I have a vague memory of something like that happening.

The logistics would be complicated, and it would be expensive. But still ….. they say they're really serious about this, and it would advance our knowledge of Ebola as well as ME/CFS; and Francis Collins has talked about how studying ME/CFS could lead to improved knowledge of other diseases (e.g. his Charlie Rose interview ).

And they say (following the link that Hello! posted) :
"There are many other potential control groups that can strengthen the science of the study through comparison. There is ongoing discussion about whether an additional control group or control groups should be included."
My guess is that they will add at least one other control group, but not Ebola survivors.

 

[Hello!]

I followed my initial impulse and started to dash off an email to Dr. Nath suggesting the post Ebola control group. In the middle of my first sentence I realized the obstacles that @nibs enumerated above and asked who was going to suggest it here.

Seems more realistic that they would do some comparisons with samples, not whole humans, but not use them as a control group. Sure would be interesting!