Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Wednesday, January 16, 2013

ME/CFS explained in simple terms

As I'm sure most of us have, I've read dozens, maybe hundreds of attempts to explain ME/CFS.  I know from experience, it's no easy task.  This illness is so complicated that if you try to simplify it, you downplay the seriousness, but if you try to explain it in its full 'glory', you'll likely lose your audience.

This is one of the clearest and best I've read at least with respect to the role of cytokinesalthough a bit oversimplied.  A highlight is excerpted here, but the whole article is worth perusing if you have time:

"With an infection, the body jumps into action to defend itself, but usually not for several days. For example, if you are in the checkout lane at the grocery store and the person next to you coughs on you, you breathe in the flu virus. The virus particle lodges in your airway and begins to multiply; yet you feel just fine. In fact you feel fine for three days or so (the incubation period) even though the virus is growing like mad. Then, Saturday afternoon, at exactly three PM, you come down with the flu: fever, headache, aches and pains, exhaustion, sore throat, nausea… What actually happened on Saturday was that your body recognized the attack by the flu virus and began making cytokines to begin the counter-attack. And the cytokines make you feel sick.             
You stay in bed for a few days while the battle rages. The battle is carried out on several fronts and after the immune system makes antibodies the infection is brought under control. When that happens the production of cytokines slows down, stops, and you feel better. A few more days and you are back to normal, if everything goes right.            
The production of these cytokines, (specifically interferon, IL-1, IL-6, and TNF) is known to cause the symptoms of illness, often called “acute sickness behavior.” This term does not imply that there is anything artificial or psychological about the behavior, it is as real as limping behavior in a person with a broken leg. These effects of cytokines were discovered during trials where the cytokines were given to healthy volunteers who then developed fever and other symptoms.            
 In ME/CFS something goes wrong. The infection may be an ordinary “garden variety” virus, an enterovirus, or the Epstein-Barr virus of mononucleosis. But in a person with the genetic vulnerability the process does not shut down and the flu-like sensation persists for months, years, sometimes for the rest of his or her life. It is this abnormal mechanism that is the center of attention in ME/CFS.            
The symptoms caused by cytokines differ from “end organ” symptoms. For example, weakness is a common symptom in ME/CFS, but muscle testing with electrodes does not indicate muscle fiber disease. Characteristically, the sensation of profound weakness is experienced by those persons given cytokine injections despite normal muscles. Confusion and problems with memory and attention are symptoms caused by cytokines and in experimental subjects, when the cytokine wears off these cognitive symptoms resolve without damage to brain cells (presumably). It is precisely because these symptoms are not caused by diseases of muscle or joint that medical providers have ignored them. If you go to the doctor with a cough caused by the flu you are patted on the head and ignored, unless you cough up gobs of lung tissue. Then it is taken a little more seriously."
Of course, this is just part of the big picture.  It doesn't address the endocrine issues, mitochondrial dysfunction, myalgias, neurological issues or any of other symptoms we experience.  These other symptoms are only alluded to in the full article as being a downstream result of the "abnormal cytokine cascade"but it's a good start.

I like how the author begins by relating ME/CFS's origins to a normal cold/flu, which is a great starting place for readers who haven't studied ME/CFS.  When explaining ME/CFS to someone who doesn't have it, it helps to start with something they can understand and relate to, and build from there.  The next time I have to explain ME/CFS to healthy person, I'll start with this article.


  1. Thanks for posting! Dr. Bell is probably the most articulate and insightful person writing about ME/CFS that I've come across. I believe he has retired in the last couple years as I see very little mentioning him, and no new newsletters in that time.

    P.S. Patrick can you email/PM me?

    1. David, no problem. I sent you my email address on HK. Talk to you soon.

  2. Hi Patrick,
    Have your breathing issues resolved? Any word from Dr. C regarding epivir and your symptoms?
    Dr. C seems to have a similar opinion to the article above, but also feels that the underlying issue is not a past infection but a current one. He refers to the endless debate between 'it is the immune system' and 'it is an infection' causing symptoms, but that when it comes down to it, it is a viral process in either case. If the virus could be eliminated, so would the excessive immune response.
    Have you looked into GcMAF at all? I had some test results showing abnormal memory b-cells (which some research states is fairly common in ME/CFS) and am wondering if the macrophages are not educating the b-cells properly (i.e., there is an underlying macrophage dysfunction which weakens the immune response against the viral infection). Just a theory, but I wonder if that is why GcMAF works for some people.

    1. Hi anand. Yes, I agree with you that the immune dysfunction and viral infection are two sides of the same coin. Really, based on my understanding of Dr. C, he believes that too. He believes that the viral infection is the cause of the immune dysfunction. But he also believes, like the author of the article above, that it usually starts with a difficult virus that sends the immune system over the edge and into a state of dysfunction.

      I have only a basic understanding of GcMAF--there are just SO many potential treatments, I have to take them one at a time, ya know? It sounds hard core...makes me a little nervous, but if were to take a turn for the worse, I would consider it more strongly. Maybe in the future I will try it. If you try it, will you let me know how it goes?

      And where did you get the b-cell testing? What is the name of the test?



    2. I have also wondered if some of us with CFS had an innate/inherited immune dysfunction before the initial infection. Tens of millions of people get enterovirus infections and don't get CFS. I have been researching gut dysbiosis, which is fairly common in CFS. Our individual microflora seems to be largely inherited from our mother. The gut microflora plays an essential role in immunity, making up a large portion of our immune system. I have been using the introduction GAPS diet/probiotics as an experiment for rebuilding gut ecology. Another idea is that the close proximity of multiple infections weakens the immune system and allows the infection to become chronic, which further weaken the immune system.

      There is a more 'subtle' way to increase MAF instead of injections (which are also very expensive)through specially formulated probiotics (MAF 314 or MAF 878). The initial step is to get nagalase tested to see if you actually need the GcMAF.

      I had the b-cell testing through an immunologist. She recommended it as I am attempting to get gammaglobulin infusions (recommended by Dr. C)covered by insurance. The functioning (or lack of functioning) of b-cells is one way to get insurance to cover gammaglobulin therapy as the b-cells produce immune globulins. The specific name of the test is 'Immune Assay B Cell Subsets' also known as a 'memory b cell panel' which was done through Mayo Clinic.

  3. The cytokines quote is an interesting explanation for the onset of CFS that I hadn't heard before. It sounds very familiar in my case, as if someone has left the switch turned to ON that should have been turned OFF.
    I'm also hearing more and more about B cells, though it seems the evidence is patchy as yet.

    New CFS blog here..

    1. I'm hearing more and more about B-cells too. The fact that Rituximab works for ME/CFS and it works by killing your B-cells tells us something. Pretty strong evidence if you ask me.