Opinion piece: CFS is not merely dysbiosis (T. Henderson)

[Effi]

Theodore Henderson, psychiatrist, treats CFS patients with antivirals. He has written an opionion piece in reaction to the Hanson paper about gut dysbiosis.

http://www.psychiatryadvisor.com/op...drome-is-not-merely-dysbiosis/article/520401/

Unfortunately, it takes the medical care of ME/CFS in the wrong direction. The cited article by Giloteaux and colleagues, Reduced diversity and altered composition of the gut microbiome in individuals with myalgic encephalomyelitis/chronic fatigue syndrome,2 seems to ignore the extensive research demonstrating a viral etiology for ME/CFS.
(...)
Perhaps I am being dogmatic, but let me explain why this is a disservice to patients. I have been treating patients with ME/CFS for years. I have heard many stories of the way medical professionals have treated them: 1) Dismissal and scorn – “I feel tired too sometimes, dear,” “Well, you would feel so much better if you just exercised;” 2) Quackery – neurofeedback, rife machines, years upon years of “anti-inflammatory” therapy; 3) Ignoring – complaints of fatigue, mental fog, joint pain go unaddressed for years; and, 4) Psychiatric labeling – diagnosing depression,. In contrast, hundreds of patients in my care have seen improvement in 1-5 months on antiviral therapy. The Institute of Medicine committee reviewed all of the literature and spent months in deliberation before publishing their conclusions.3 High on their list of findings about ME/CFS is that it likely has a viral etiology and the strongest candidate is Epstein-Barr virus (EBV), also known as Herpes 4.
(...)
Anything that takes the public eye or the medical community's effort away from treating ME/CFS as a viral illness is a disservice. Whether you look at the hundreds upon hundreds of patients treated by the late Dr. A. Martin Lerner4 or the hundreds of my patients who have resumed normal lives after anti-viral treatment5,6, it is hard to not feel the bile rise. Perhaps seeing it from a patient's perspective would be helpful.

 

[msf]

Umm, I think we are past the point where we need to listen to ANY psychiatrists about ME.

 

[msf]

Also, the triggering factor in the second patient he mentions could just have likely been Lyme.

 

[snowathlete]

He clearly listens to patients which is great. I've not had antiviral therapy but I know it works for some but not for others. Great he is finding ways to help some of his patients. Not sure why he has microbiome research in his sights though, the more obvious target is the BPS crowd. I really wish he would say a lot more about that as that is where we need ME/CFS researchers, clinicians and other academics to speak up. Microbiome work may lead to something, and it is at least objectively measuring something (even if it turns out to be a secondary problem - but at this stage, who really knows?), whereas stuff like PACE is an absolute con job - nothing else adds more to the neglect, missery and mislabelling of patients than this sort of BPS research - and it is far more influential and costly (both in terms of research funding and in terms of impact on patients). As he is a psychiatrist he is in a great position to stand up against what some of his colleagues are doing. We need that because the BPS lot have brought psychiatry into disrepute. Not all psychiatrists are bad, I think we need to guard against that belief, which is due to the way many from that field have caused great harm to ME/CFS, but it's never good to stereotype. Some, like this guy, who appears to have a genuine desire to help patients, can really help potentially.

 

[msf]

He also called it ´Lyme´s disease´, which is either because he is very old-fashioned or because he does not know much about infectious diseases.

 

[msf]

Also, I believe HHV-6 and HSV-1, but not EBV, have been implicated as a cause of gut problems in ME.

 

[JES]

Also, I believe HHV-6 and HSV-1, but not EBV, have been implicated as a cause of gut problems in ME.

+ Enteroviruses for which there exists no approved antivirals.

 

[Sidereal]

The Institute of Medicine committee reviewed all of the literature and spent months in deliberation before publishing their conclusions.3 High on their list of findings about ME/CFS is that it likely has a viral etiology and the strongest candidate is Epstein-Barr virus (EBV), also known as Herpes 4.

The IOM report doesn't say what he thinks it says.

 

[TiredSam]

Unfortunately, it takes the medical care of ME/CFS in the wrong direction.

Since when is going where the new evidence takes us according to the latest research "the wrong direction"?

Perhaps I am being dogmatic

Yes you are.

Anything that takes the public eye or the medical community's effort away from treating ME/CFS as a viral illness is a disservice.

Publicly dismissing the latest scientific evidence in favour of your own anecdotal evidence is a disservice.

What is it with psychiatrists?

 

[alex3619]

There is not much doubt that viral triggers are at the top of the list, and the top of those is probably EBV. However any microbiome findings are also useful. We need to understand the pathophysiology in order to find the mechanisms and a cure, unless we do so by chance such as with Rituximab. (Chance and very observant doctors.) I think the best time to use antivirals would be right at the start of the infection, in the first few days. There is no doubt some are helped by them, but some are not helped as well. Its also clear that most patients no longer have an active viral infection when they are diagnosed with ME.

This is not about latent infections, which everyone has, nor about reactivating infections, which many of us get ... indeed we can have viruses reactivate on a regular basis that we are supposed to be partially or fully immune to after the first bout. There is some data showing problems with EBV antibodies, and others with NK cells, and so on. The other thing that is critical from the microbiome is that it is really meshed with the immune system. One of the big gaps in immunology is understanding how the microbiome interacts with it.

Just briefly I would like to revisit latent infections. If, as the hypometabolic research suggests, we are hypersensitive to infections, then even a latent infection, one that is not active, might help perpetuate the state. So might many other infections, maybe most, including mycoplasma.

Finally I would like to mention my old old hypothesis, that an infection that gets into one of the critical parts of the body, such as heart or brain, might trigger ME. In that case even full clearance of the pathogen might not be enough if there is damage and the body is reacting to that.

 

[msf]

+ Enteroviruses for which there exists no approved antivirals.

Sure, but I was sticking to the herpes virus family.

 

[msf]

I think he is right, that dysbiosis isn´t the ultimate cause (how could it be?), but he is attacking a straw man. I am pretty sure a scientist as thorough as Hanson isn´t going to say, ok, they have dysbiosis, end of story. They are going to look for the cause of that dysbiosis, without (as this psychiatrist does) presuming what that cause is.

 

[Seven7]

Here is the thing If you are on the sub group of low NK cells dysfunction, you need to treat the confections, period! Before antiviral treatment my quality of life was so low was not worth it.
It was not one day took 4 years before
I saw a definite difference but I did gain the ability to Join the world again( with OI meds and immune mod therapy).

 

[Gingergrrl]

I think the best time to use antivirals would be right at the start of the infection, in the first few days.

That is interesting to hear you say that and it is my feeling, too. I wonder if I had known to take an anti-viral while I had acute mono/EBV in 2012, if it would have made a difference in the long-term vs. having a positive EBV IgM titer for 3+ years and now developing some kind of autoimmune condition?

 

[alex3619]

That is interesting to hear you say that and it is my feeling, too. I wonder if I had known to take an anti-viral while I had acute mono/EBV in 2012, if it would have made a difference in the long-term vs. having a positive EBV IgM titer for 3+ years and now developing some kind of autoimmune condition?

The problem is antivirals are potentially dangerous, and expensive, and discouraged by insurance and government paymasters. If we could tell who most needed them, and there was a test that claimed to do this for EBV some years back but I have seen nothing since and forget the details now, then we would know who to give antivirals to. Doctors could run the test and prescribe to those patients who need it. If I am not misremembering, didn't Hemispherx just announce it had a test to determine who the big responders to Ampligen would be? That kind of test is very important to get antiviral and immune strategies funded.