Dr. Ian Lipkin and Dr. Mady Hornig, Use Deep Sequencing and Proteomics to Hunt CFS Vi

[ixchelkali]

PSYCHIATRIST! DANGER Will Robinson DANGER.

Sigh why does their always have to be a psychiatric aspect to our Condition. I've had some sort of health issue or another since I was about 20. And my Fatigue from Hell started nearly Five years ago Friday December 16, 2006.

I have no doubt there's a neuropsychiatric aspect to ME/CFS. In fact, those are some of the most disabling symptoms I have: brain fog, poor short-term memory, difficulty learning new things, difficulty finding words, poor spatial perception, trouble with multitasking, slow processing of information, poor reading comprehension, trouble doing arithmetic in my head, hyperacute sense of smell, etc. etc. Most of our ME/CFS experts have said for some time that there is dysregulation of the HPA axis; the thalamus is in the brain. Personally, I suspect that if it proves to be an autoimmune disease, the affected cells will include the hypothalamus, simply because the processes that the hypothalamus regulates all seem to be messed up in ME/CFS patients.

Diseases with a neuropsychiatric component include Huntington's disease, Sydenham's chorea, Parkinson's disease, and Alzheimer's. Actually, I don't know if it's possible for ME/CFS to be an encephalopathy without being a neuropsychiatric disease.

I fully understand why the word "psychiatric" can be a red flag for ME/CFS patients. It's been used against us too much. Plus, most people, including those in the medical profession, equate anything with the word psychiatric with mental illness, so there's a danger that it will reinforce their erroneous stereotypes about ME/CFS patients. But I think that if we overreact to the word, we feed into the garbage that Mr Wessely and his cronies keep repeating about us, that we will attack anyone who suggests that ME/CFS has a psychiatric component. You and I know that they are intentionally muddying the waters, and that they AREN'T talking about neuropsychiatric elements, they're talking about psychosomatic illness. But Dr. Hornig was careful to say that's NOT what she means. I believe she's using the term in its correct medical sense, not in the Wessely/White doublespeak sense.

 

[justinreilly]

I have no doubt there's a neuropsychiatric aspect to ME/CFS. In fact, those are some of the most disabling symptoms I have: brain fog, poor short-term memory, difficulty learning new things, difficulty finding words, poor spatial perception, trouble with multitasking, slow processing of information, poor reading comprehension, trouble doing arithmetic in my head, hyperacute sense of smell, etc. etc. Most of our ME/CFS experts have said for some time that there is dysregulation of the HPA axis; the thalamus is in the brain. Personally, I suspect that if it proves to be an autoimmune disease, the affected cells will include the hypothalamus, simply because the processes that the hypothalamus regulates all seem to be messed up in ME/CFS patients.

Diseases with a neuropsychiatric component include Huntington's disease, Sydenham's chorea, Parkinson's disease, and Alzheimer's. Actually, I don't know if it's possible for ME/CFS to be an encephalopathy without being a neuropsychiatric disease.

These are ALL neurological symptoms and signs, not psychiatric symptoms. Yes, you can make a case that every multi-system/organ disease with a substantial neurological component such as ME or AIDS is a 'neuropsychiatric disease' but using this term causes more problems than it solves, so I don't think she should use it. Just like it's true that our disease is chronic, fatigue is a component and it can be considered a syndrome, that doesn't mean the name should have been changed from ME to "CFS."

She is working for a foundation funded by someone who has friends with this disease, not for CDC or NIH, so they should use nomenclature that is accurate and helps patients, not any that harms patients.

 

[ixchelkali]

These are ALL neurological symptoms and signs, not psychiatric symptoms. Yes, you can make a case that every multi-system/organ disease with a substantial neurological component such as ME or AIDS is a 'neuropsychiatric disease' but using this term causes more problems than it solves, so I don't think she should use it. Just like it's true that our disease is chronic, fatigue is a component and it can be considered a syndrome, that doesn't mean the name should have been changed from ME to "CFS."

She is working for a foundation funded by someone who has friends with this disease, not for CDC or NIH, so they should use nomenclature that is accurate and helps patients, not any that harms patients.

You're probably right. But since Dr Hornig specifially said that she doesn't consider it a psychological illness, and since she's going to be using deep sequencing to look for pathogens and biomarkers, and using a well-defined patient cohort, I'm willing to cut her some slack if she slips into jargon from her branch of medicine.

 

[Cort]

PSYCHIATRIST! DANGER Will Robinson DANGER.

Sigh why does their always have to be a psychiatric aspect to our Condition. I've had some sort of health issue or another since I was about 20. And my Fatigue from Hell started nearly Five years ago Friday December 16, 2006.

It wasn't until long after I came down with this that I was ever down emotionally or mentally to any point I would even begin to call depressed. And that is because of personal relationship issues with people whom I didn't even know until after I had been sick for almost three years.

Sorry if that's TMI. But I can't help but feel that the PTB sure seem to be trying to really sell this. It's almost being billed IMO as if the Ian Lipkin Hunt is the end all be all. If he don't find it then we've tried everything, it doesn't exist, stick a fork in it were done here. Now move along there's nothing to see here the case is closed.

I see a very, very comprehensive study in progress - which is exactly what I would want. Dr. Hornig is saying that altho it is often billed as a psychological disorder she doesn't see that and having a psychologist with that viewpoint is a very good thing. (They're also researching autism - another "neuropsychiatric" disorder).

The neuropsychologist I saw tested for cognitive issues - not emotional ones.

I'm kind of surprised - this big study comes up - and instead of celebrating it, its viewed as, because it is so comprehensive, a way to undercut CFS! Honestly, that's a real head turner for me....

I don't think its the end all of anything but I do think you're right - if they don't find anything - that's not going to be helpful. On the other hand they are looking at so many places that it would be surprising to me if they didn't find something. I guess studies like this are double-edged swords; they can break things wide open or the researchers will say 'we really tried and we didn't find anything.'

 

[kaffiend]

I tend to use the term "neurocognitive." When I think of psychiatric, the types of deficits that come to mind are social-emotional or psychotic symptoms, i.e., major depression, bipolar, personality disorders, and schizophrenia. These are of course brain-based and therefore also neuropsychiatric.

When I think of cognitive deficits, areas such as memory, attention, perception, etc come to mind. In ME/CFS, these are what seem to be affected in the absence of any psychiatric disorders listed above. Of course, depression and other psychiatric disorders may occur independent of ME/CFS.

People with psychiatric conditions oftentimes can't make accurate assessments of themselves or the intentions of others. People with crappy short-term memories or light/sound sensitivities do this just fine.

It should really help isolate the brain systems affected by the metabolic or inflammatory processes involved in this disease. Despite the widespread neurocognitive problems, personality remains unaffected (though may be affected secondary to the circumstance of disability and isolation from mainstream medicine).

 

[liquid sky]

The term neuroimmune speaks much more clearly to the original pathology of this disease. Many studies have shown that there is immune dysfunction at the heart of matters. An interview of the Norwegian researchers who used Rituxan to treat the disease stated that they suspected it was an autoimmune disorder that affected the brain and sensory nerves.

How did they treat it? By effecting a change in the immune system. When the immune system was corrected, the symptoms abated, including the cognitive dysfunction. That shows there is nothing "psychiatric" about the disease. Psychiatric means "of or related to mental illness".

It is an insult to call a most likely autoimmune/infectious disease psychiatric. These researchers well know the history of ME/CFS and the offense of using this word to the patients. Why would they just not go down that road again?

 

[max]

Absolutely agree with liquid sky - it is an insult and it just aint right - totally had enough of shrinks and shrink terminology.

 

[justinreilly]

I tend to use the term "neurocognitive." When I think of psychiatric, the types of deficits that come to mind are social-emotional or psychotic symptoms, i.e., major depression, bipolar, personality disorders, and schizophrenia. These are of course brain-based and therefore also neuropsychiatric.

When I think of cognitive deficits, areas such as memory, attention, perception, etc come to mind. In ME/CFS, these are what seem to be affected in the absence of any psychiatric disorders listed above. Of course, depression and other psychiatric disorders may occur independent of ME/CFS.

People with psychiatric conditions oftentimes can't make accurate assessments of themselves or the intentions of others. People with crappy short-term memories or light/sound sensitivities do this just fine.

It should really help isolate the brain systems affected by the metabolic or inflammatory processes involved in this disease. Despite the widespread neurocognitive problems, personality remains unaffected (though may be affected secondary to the circumstance of disability and isolation from mainstream medicine).

Exactly!! 'neurocognitive' is much more accurate and not harmful to patients.

 

[Esther12]

I'm kind of surprised - this big study comes up - and instead of celebrating it, its viewed as, because it is so comprehensive, a way to undercut CFS! Honestly, that's a real head turner for me....

I think that almost everyone her was being supportive of the actual study... we just got side-tracked by the 'neuropsychiatric' discussion.

I don't think many of us really have the sufficient expertise to comment much upon the god things about the study itself.

 

[Daffodil]

HOW MANY MILLIONS HAVE TO GET INFECTED AND DIE BEFORE THEY START TESTING THE SPINAL FLUID? THE TISSUE? ITS A NEUROLOGICAL DISEASE....WHY DO THEY KEEP TESTING BLOOD?

 

[boomer]

Is neuroimmune a possibility? who is to say that the psychiatric features play more of a role than the immune system features? but i am not even a biologist. it just seems so far out to refer to it as a psychiatric disease. I sense that eventually that label will change some time. I wish something would happen fast for a change.

 

[KnightofZERO]

Hi, for a short intro to deep sequencing read:

http://pathogenomics.bham.ac.uk/blo...very-and-epidemiology-plus-a-job-opportunity/

This is basically about analyzing a whole lot of RNA and then matching it to every known pathogen on a computer. Even a partial match will show up. New viruses or other organisms can be found this way.

A powerpoint slide for the technically minded can be found at:
www.seas.gwu.edu/~rhyspj/fall09cs144/presentations/sam.ppt

Bye
Alex

Thanks Alex. I think Deep-Sequencing could be the most important thing to do. Just gotta get the "classic patients" which it sounds like they are making some effort to do: http://www.cfscentral.com/2011/10/q-with-scott-carlson-of-chronic-fatigue.html.

Hopefully this project goes forward full steam ahead. We need some good news and it could advance the science a very large amount. The genome is the blueprint for a human being roughly analogous to a blueprint for a house is, or even more so since for us it is just that single blueprint and it determines nearly everything.

 

[barbc56]

Sounds like a wonderful study with lots of potential. Yea!!

We might understand what researchers mean when they say neuropsychiatric, but the reality is that there is still such a stigma attached to anything that can be construed as a mental illness. It's really sad that this happens. I think things like depression, bipolar will someday be recognized as physical illness. Unfortunately, many people still have the mindset that if it's "all in your head" you just have to pull up your bootstraps, have a positive attitude and voila you are cured.

All in all, this sounds like great research

 

[Cort]

The term neuroimmune speaks much more clearly to the original pathology of this disease. Many studies have shown that there is immune dysfunction at the heart of matters. An interview of the Norwegian researchers who used Rituxan to treat the disease stated that they suspected it was an autoimmune disorder that affected the brain and sensory nerves.

How did they treat it? By effecting a change in the immune system. When the immune system was corrected, the symptoms abated, including the cognitive dysfunction. That shows there is nothing "psychiatric" about the disease. Psychiatric means "of or related to mental illness".

It is an insult to call a most likely autoimmune/infectious disease psychiatric. These researchers well know the history of ME/CFS and the offense of using this word to the patients. Why would they just not go down that road again?

She does say that she believes that CFS is not psychological., There is obviously some grey area here.

Here's the Wikipedia definition of neuropsychiatric. It's a research branch that addresses problems caused by brain injury or disease; it mostly addresses problems with cognition and behavior.

From wikipedia

Neuropsychiatry is the branch of medicine dealing with mental disorders attributable to diseases of the nervous system. It preceded the current disciplines of psychiatry and neurology, in as much as psychiatrists and neurologists had a common training.[1] However, neurology and psychiatry subsequently split apart and are typically practiced separately. Nevertheless, neuropsychiatry has become a growing subspecialty of psychiatry and it is also closely related to the field of behavioral neurology, which is a subspecialty of neurology that addresses clinical problems of cognition and/or behavior caused by brain injury or brain disease. "Behavioral Neurology & Neuropsychiatry" fellowships are jointly accredited through the United Council for Neurologic Subspecialties (UCNS), in a manner similar to how the specialties of psychiatry and neurology in the United States have a joint board for accreditation, the American Board of Psychiatry and Neurology (ABPN).

Neurologists have focused objectively on organic nervous system pathology, especially of the brain, whereas psychiatrists have laid claim to illnesses of the mind. This antipodal distinction between brain and mind as two different entities has characterized many of the differences between the two specialties. However, it is argued that this division is simply not veridical; a plethora of evidence from the last century of research has shown that our mental life has its roots in the brain.[2] Brain and mind are argued not to be discrete entities but just different ways of looking at the same system (Marr, 1982). It has been argued that embracing this mind/brain monism is important for several reasons. First, rejecting dualism logically implies that all mentation is biological and so immediately there is a common research framework in which understandingand thus treatmentof mental suffering can be advanced. Second, it removes the widespread confusion about the legitimacy of mental illness: all disorders should have a footprint in the brain-mind system.

In sum, one reason for the division between psychiatry and neurology was the difference between mind or first-person experience and brain. That this difference is artificial is taken as good support for a merge between these specialties.

I think we're getting caught up too much on words. In the end you can throw all that discussion away when you look at what they are studying...they are not trying to determine which psychiatric profile CFS patients fit; they are doing the most comprehensive study on pathogens in CFS EVER!

 

[leela]

HOW MANY MILLIONS HAVE TO GET INFECTED AND DIE BEFORE THEY START TESTING THE SPINAL FLUID? THE TISSUE? ITS A NEUROLOGICAL DISEASE....WHY DO THEY KEEP TESTING BLOOD?

What Daff said. For heaven's sake.

 

[snowathlete]

I think we're getting caught up too much on words. In the end you can throw all that discussion away when you look at what they are studying...they are not trying to determine which psychiatric profile CFS patients fit; they are doing the most comprehensive study on pathogens in CFS EVER!

Absolutely! If anything, I actually see the fact this neuropsychiatrist is involved as a big bonus. I suspect that Lipkin is being very clever by involving her; it means that the Psychiatric lobby cant really criticise their findings on a pathological cause (of course, Im being presumptuous, but Lipkin himself said he thinks he will find it).