NIH Sends Top Central Nervous Infection Specialist To Speak at CDC ME/CFS Meeting

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Chronic Fatigue Syndrome (ME/CFS) is going to be the subject of a Grand Rounds presentations at the CDC in February. Grand Rounds presentations are talks given by experts on medical topics of interest. According to the CDC this one will be seen by thousands of providers in and outside the U.S. It's a moment of increased visibility for ME/CFS.

[fright]
Nath-Avindra.jpg
[/fright] Except for the last (and most intriguing) one, this one, consisting of four talks over an hour, will be lead by familiar faces:

  • Dr. Lapp: "The Clinical Presentation of ME/CFS",
  • Dr. Unger: The "Public Health Approach to ME/CFS"
  • Dr. Komaroff: “Lessons from the Institute of Medicine and NIH Pathways to Prevention Reports”
The Central Nervous System Infection Specialist

We may have heard much of what the first three presenters will say but then comes a new face: Dr. Avindra Nath. Nath is the Chief of the section on Infections of the Nervous System at the National Institute of Neurological Diseases and Stroke (NINDS) and the intramural clinical director of the NIH's huge Clinical Center.

He's also been tasked with developing a center dedicated to translating new therapies for neurological disorders to clinical use. Nath has co-authored hundreds of research papers. A recent one - published in renowned Lancet journal - focused on central nervous system infections and neuro-immune damage. A short February 2015 paper that called neuroinfectious diseases "a crisis in neurology" called for more action to understand them.

Here he is talking on the research study beginning at the NIH's Clinical Center soon.

  • Dr. Avindra Nath: “Post-Infectious Chronic Fatigue Syndrome: Intramural Research at the National Institutes of Health”

Nath has been "internationally recognized" for his contributions to understanding HIV's effects on the central nervous system. He proved that a protein viruses make called Tat could stimulate neurons and activate glial cells. Those activated glial cells then released immune factors called chemokines that recruited immune cells called macrophages into the central nervous system.

Macrophages are activated monocytes. Picture the Hulk before and after his transformation and you have a good picture of what happens to monocytes when they turn into macrophages. Macrophages are killing machines; their entry into the central nervous system sounds like a sure recipe for neuroinflammation - a hot topic in ME/CFS.

According to the NIH Nath has also helped develop several neuroprotective compounds that are in various stages of development and clinical testing.

Central Nervous System Immune Reconstitution Inflammatory Syndrome

Nath also discovered a process that could have some bearing on ME/CFS. He found that some individuals with otherwise excellent responses to retrovirals nonetheless developed a "devastating" case of immune-mediated encephalitis called "central nervous system immune reconstitution inflammatory syndrome" or CEN- IRIS. First described in 1992, it usually occurs in association with an HIV infection but can occur in conjunction with other infections.

[fleft]
Sickness-behavior.jpg
[/fleft]Some researchers believe that different types of CNS-IRIS occur in response to different kinds of pathogens. Importantly, while changes in MRI or CT scans can help solidify the diagnosis, a CNS-IRIS diagnosis is often a diagnosis of exclusion. It's apparently suspected in HIV patients who aren't responding clinically to antiretroviral therapy despite the fact that their viral loads are dropping and their immune system is improving.

Intriguingly, people with HIV/AIDS usually don't develop CNS-IRIS until they go on antiretroviral therapy. Researchers believe that HIV/AIDS infection has reconstituted these patients immune systems in such a way that any immune improvement causes the immune system to over react. At that point the immune system can react even to subclinical infections; e.g. small infections that normally don't bother us.

(That's a fascinating scenario for me because increased energy has generally resulted in what appears to be an immune reaction. My general symptoms are fatigue, muscle stiffness and pains. As I start to improve, however, I tend to experience fluey symptoms. Shortly after I start feeling really good the fluey symptoms manifest themselves and I have to drop the treatment.)

From the very beginning researchers have felt that an immune reaction must play a role in ME/CFS - the symptoms were just too similar, but immune results have lacked consistency. In this scenario, it all appears to take place in the brain.

Conclusion

In short, Nath is not a little or medium wheel at the NIH - he's a big wheel. The fact that he's presenting to the CDC on the NIH's ME/CFS research study suggests the NIH may indeed enlisting some of its best and brightest in an attempt to understand it. Nath's presence is also another sign of the NINDS Institute stepping up to the plate. If a central nervous system infection is present in ME/CFS, Nath might be the guy to find evidence of it.

His talk will probably be a quick one; with four presenters in an hour none of the speakers has time to do much more than provide a short overview of their subject. In that time, though, Nath should be able to tell us much about the NIH's new study to comprehensively analyze a cohort of people with ME/CFS.

It's hard to know what's going on at the NIH. Their response to CFSAC recommendations was disappointing and yet here they are sending one of their top researchers to present on ME/CFS to the medical world. That's certainly good news.

The Grand Rounds Presentation

The presentation will be webcast "to thousands of providers, researchers, and the public." Details and previous programs can be viewed at http://www.cdc.gov/cdcgrandrounds/.
The presentation will be archived and viewable after 48 hours. The CDC gave this link for those wanting to watch the presentation live.

CDC’s Public Health Grand Rounds Presents:
“Chronic Fatigue Syndrome: Advancing Research and Clinical Education”

Tuesday, February 16, 2016
1:00 p.m. – 2:00 p.m. ET
Global Communications Center (Building 19)
Alexander D. Langmuir Auditorium
Roybal Campus​
 
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PamJ

Active Member
CNS-IRIS, or just IRIS, would be a huge improvement on the current names of our illness. Do you think Dr. Nath will find a connection/similarity?
 

Atna

Member
Very interesting & I'm so glad you shared this. I have recently had the same experience - I appeared to be doing better & seemed like treatments were finally working. Then all of a sudden, I had the worst flare up. I haven't felt that awful in a while (well atleast it put my progress in perspective - I used to feel like that 24/7). So, I have had to discontinue what seemed to be helping me & have taken steps back. LDN is not an option for me.
I wish I knew how to get past that hump. I thought I was losing my mind - the fall is always so hard, physically & psychologically. Again, I'm so glad you shared this & your experience.
Now, if only we had an answer...
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
CNS-IRIS, or just IRIS, would be a huge improvement on the current names of our illness. Do you think Dr. Nath will find a connection/similarity?
I bet he thinks there's a possibility. Look at the similarities - infection triggers basically sickness behavior. The infection seems to be resolved and yet the symptoms persist. The difference is that they've documented that antiretroviral treatment actually triggers CNS-IRIS because it pushes an already off-balanced immune system more off-balance. I think you could make the case that the immune systems in ME/CFS are off balance - and in many cases - were thrown off balance by an infection. In general the process could be very similar.

I wouldn't be surprised if there are many forms of CNS-IRIS.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Very interesting & I'm so glad you shared this. I have recently had the same experience - I appeared to be doing better & seemed like treatments were finally working. Then all of a sudden, I had the worst flare up. I haven't felt that awful in a while (well atleast it put my progress in perspective - I used to feel like that 24/7). So, I have had to discontinue what seemed to be helping me & have taken steps back. LDN is not an option for me.
I wish I knew how to get past that hump. I thought I was losing my mind - the fall is always so hard, physically & psychologically. Again, I'm so glad you shared this & your experience.
Now, if only we had an answer...
I'm glad it helped. That's actually my general experience - that my worst times come after my best times. The only thing I know is to proceed very slowly so my system can try to adjust. I actually think that meditative /mindfulness practices help slow down or perhaps rebalance the immune system and that helps too. That said the same thing happened to me with meditation about 15 years ago - my energy zoomed and then I fell apart again.

Nowadays my energy doesn't zoom so much and I don't fall apart so much. I think it could be just getting older. I heard that our immune systems slow down a bit.
 

Atna

Member
What a conundrum! I agree with you re. Meditation/mindfulness... I will say when you are in the throes of a bad flare up is when you need to meditate & center the most & yet it is the most challenging time to practice. The fatigue & pain are crippling & one just swims in brain fog. We are caught in a loop here, Cort. What a mess.

Can I take this opportunity to thank you for everything you do! So grateful!
 

Katherine Autry

Active Member
Cort, is it possible that flu type achy feeling is a Herxheimer reaction? Which means the treatment is actually killing the virus? Making you better? I've always wondered how to tell a herx from just getting sicker......
 

Lemnia

Member
This is interesting indeed, as I too find that whatever form of treatment I seem to start, within a short while I'm so ill and in such pain that I'm forced to quit 'Atna' and any others, may I ask what treatment you have tried and had to stop due to flaring. I am now on LDN (only for 3 weeks and slowly building dose up) but I'm feeling worse as I go. Anyone had this with LDN? I've tried MMS, managed 2 weeks and was back to being a spoon fed bedridden case. Same with 'Allicin', managed a week of that and oh my goodness I felt ill. I've done the Cowden protocol and managed 2 months on full dose, but then had to stop as I was in desperate straits again. I seem to react poorly to everything I take and I was beginning to think this may actually be due to the fact that my 23andMe results which I've recently received tell me I'm 'Homozygous for MTHFR C677T , COMT V158M, COMT H62H, VDR Bsm' and this I now learn means Blocked Methylation Pathways (a reason why some have serious trouble tolerating medication and treatment). But now after reading this article, the possibility that antiretroviral treatment actually triggers CNS-IRIS because it pushes an already off-balanced immune system more off-balance makes sense.
 

weyland

Well-Known Member
I am now on LDN (only for 3 weeks and slowly building dose up) but I'm feeling worse as I go.
What dose of LDN are you taking?

But now after reading this article, the possibility that antiretroviral treatment actually triggers CNS-IRIS because it pushes an already off-balanced immune system more off-balance makes sense.
It doesn't really push it more off balance. It actually brings the immune system back in balance and then it suddenly has a bunch of pathogens to deal with, the act of which causes the IRIS reaction.
 

Seanko

Well-Known Member
@Cort thanks for the article.

in your opinion are there more talented people involved in ME/CFS research in the US now than in the past?
Last year Prof Jonathan Edwards, the retired UK Rituximab expert said that the subject was becoming "trendy" with a wider range of respected people becoming involved in the UK & Europe.
 

Atna

Member
This is interesting indeed, as I too find that whatever form of treatment I seem to start, within a short while I'm so ill and in such pain that I'm forced to quit 'Atna' and any others, may I ask what treatment you have tried and had to stop due to flaring. I am now on LDN (only for 3 weeks and slowly building dose up) but I'm feeling worse as I go. Anyone had this with LDN? I've tried MMS, managed 2 weeks and was back to being a spoon fed bedridden case. Same with 'Allicin', managed a week of that and oh my goodness I felt ill. I've done the Cowden protocol and managed 2 months on full dose, but then had to stop as I was in desperate straits again. I seem to react poorly to everything I take and I was beginning to think this may actually be due to the fact that my 23andMe results which I've recently received tell me I'm 'Homozygous for MTHFR C677T , COMT V158M, COMT H62H, VDR Bsm' and this I now learn means Blocked Methylation Pathways (a reason why some have serious trouble tolerating medication and treatment). But now after reading this article, the possibility that antiretroviral treatment actually triggers CNS-IRIS because it pushes an already off-balanced immune system more off-balance makes sense.
I too have MTHFR & other mutations. The most recent treatments that were working was Nutritional IVs - loaded with all kinds of stuff & phosphatidyl choline. I was doing better than I have in a while & then crashed really bad. LDN & me don't work because of anaphylactic type reaction. Most unfortunate because so many people are having great success with it. There's a FB page which is great support - it's called "Got Endorphins..."
Like you I can hardly tolerate much. My Dr thinks heavy metals are to blame for much of the sensitivity because it interferes with cellular communication. Of course I am nowhere near ready to chelate... My body couldn't handle it right now. So for now we are working on opening some pathways including methylation pathways & we have to go very slow or I have to stop treatments & then start all over again. Forward 3 back 2 kind of thing.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Cort, is it possible that flu type achy feeling is a Herxheimer reaction? Which means the treatment is actually killing the virus? Making you better? I've always wondered how to tell a herx from just getting sicker......
I have no idea. I've never had the stomach for trying to push my way through it - it's soo miserable. I get utterly fatigued. Quite frankly I would much rather deal with pain - my usual symptoms - than debilitating fatigue. There's nothing worse than fatigue because you just can't do anything - that's a crusher.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
@Cort thanks for the article.

in your opinion are there more talented people involved in ME/CFS research in the US now than in the past?
Last year Prof Jonathan Edwards, the retired UK Rituximab expert said that the subject was becoming "trendy" with a wider range of respected people becoming involved in the UK & Europe.
Oh my gosh - a big affirmative with that one....

Lipkin said he put together a team to work on ME/CFS- said he couldn't have done that five years ago..

Let's tick off some names - Ron Davis, Mark Davis, Michael Houghton, Ellredge, Der...Unermaya (?), Jarred Younger, Maureen Hanson, a major figure in Canada, Patrick McGowan - some of these people are exceptional researchers - they've have won some major awards. Unamaya - I'm butchering his name - is working in a huge newly built lab - it's got to be one of the top labs in the country which means the world..... I'm sure I'm missing a good number.

And now this guy - Nath - this guy is running the clinical component of the biggest research hospital in the world! He's in charge of that...and here he is speaking on ME/CFS....that's kind of a mind-blower.

This is why an RFA would REALLY work now. There is so much more interest....
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
What a conundrum! I agree with you re. Meditation/mindfulness... I will say when you are in the throes of a bad flare up is when you need to meditate & center the most & yet it is the most challenging time to practice. The fatigue & pain are crippling & one just swims in brain fog. We are caught in a loop here, Cort. What a mess.

Can I take this opportunity to thank you for everything you do! So grateful!
Isn't this true? The whole disease is like that. Once you get ME/CFS/FM it is sooo much harder to do this stuff - what a challenge. :)....Want a big challenge - this is one. Thanks for your nice words and good luck!
 
What dose of LDN are you taking?


It doesn't really push it more off balance. It actually brings the immune system back in balance and then it suddenly has a bunch of pathogens to deal with, the act of which causes the IRIS reaction.
I was on LDN anD antivirals for a year and a half and got somewhat better. I got even better after I stopped them. Sic months later, I caught a viral infection from my kids and now I am worse than I have ever been. I am back on LDN and the antivirals again but have not improved.

I found this interesting podcast/blog today talking about vagus nerve infections as a possible cause of CFS.
http://thelowhistaminechef.com/harvard-neuroscientist-dr-michael-van-elzakker-chronic-fatigue-vagus-nerve-link/
 
This is interesting indeed, as I too find that whatever form of treatment I seem to start, within a short while I'm so ill and in such pain that I'm forced to quit 'Atna' and any others, may I ask what treatment you have tried and had to stop due to flaring. I am now on LDN (only for 3 weeks and slowly building dose up) but I'm feeling worse as I go. Anyone had this with LDN? I've tried MMS, managed 2 weeks and was back to being a spoon fed bedridden case. Same with 'Allicin', managed a week of that and oh my goodness I felt ill. I've done the Cowden protocol and managed 2 months on full dose, but then had to stop as I was in desperate straits again. I seem to react poorly to everything I take and I was beginning to think this may actually be due to the fact that my 23andMe results which I've recently received tell me I'm 'Homozygous for MTHFR C677T , COMT V158M, COMT H62H, VDR Bsm' and this I now learn means Blocked Methylation Pathways (a reason why some have serious trouble tolerating medication and treatment). But now after reading this article, the possibility that antiretroviral treatment actually triggers CNS-IRIS because it pushes an already off-balanced immune system more off-balance makes sense.
I did one pill and it destroyed me for 10 days. I went from 70% to thinking I was going to die. Crazy. I have been thinking about MMS and Ozone therapy. Currently, I am largely bedridden, so I have been very tentative. However, I have a friend who swears by MMS. How much MMS did you start with and how much did you work up to?
 
I did one pill and it destroyed me for 10 days. I went from 70% to thinking I was going to die. Crazy. I have been thinking about MMS and Ozone therapy. Currently, I am largely bedridden, so I have been very tentative. However, I have a friend who swears by MMS. How much MMS did you start with and how much did you work up to?
I did one pill of Allicin (missed that). Anti-biotics also crushed me and it never used to be a problem.
 
Cort - do you know anyone who has CFS and has benefited from Ozone or MMS/CD? I keep listening to these different summits and researching, so I am examining everything: mold, heavy metals, vagus nerve, infections. I never know when people have been help who claim to have CFS whether it is CFS or something else. Also, I call this my 6th round of CFS with every version being different and worse than the one before. so even for me, it's hard to say. Different things have worked in the past, but now like Atna, everything beats me up. Also, I always question what is herx reaction. People say, its from toxins being released in you system from things you are killing. However, with my new found reaction to anti-biotics, it makes me wonder if everything is an overreaction at this point in my CFS. Also, something I also learned recently that might be worth trying from the gut summit. Vigorous gargiling 3x a day to the point that you have tears is supposed to stimulate the Vagus nerve. The problem is I have no energy at all, that even that seem daunting.
 

Atna

Member
Chris, I do not know what MMS is - please can you advise?
I'm trying to work on vagus nerve too but I'm using a bio-feedback & Stim machine for that.
 

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