We have had some new members recently diagnosed with CFIDS within our own online/blogging community, so I thought a post on some of the discoveries of the biology of CFS would be helpful.
I thought this would also help those who aren’t ill to see that although I don’t look sick (or your loved one doesn’t look sick), recent biological discoveries are indeed proving otherwise.
In addition…
I have had several private emails asking me to share information about what research is revealing. So, today this post will be an answer to those questions.
Anthony Komaroff is a doctor whom I have been following since I got sick in the late 1980s. He is
a professor of medicine at Harvard Medical School, senior physician at Brigham and Women’s Hospital in Boston and the editor-in chief of Harvard Health Publications. Dr. Komaroff has an ongoing research program on chronic fatigue syndrome and has published over 230 research articles and book chapters.
I am posting his 10 discoveries here which the CFIDS.org says is a
[...] a “print-and-go” handout listing 10 key discoveries
When you read the list, it is quite impressive in the sense of how invasive and pervasive this illness really is. Here is the list for your perusal.
Ten Discoveries about the Biology of CFS
1. Chronic fatigue syndrome is not a form of depression, and many patients with CFS have no diagnosable psychiatric disorder. As with most chronic illnesses, some CFS patients become depressed because of the impact of the illness on their lives, but most studies find that the majority haven’t experienced depression before the onset of illness.
2. There’s a state of chronic, low-grade immune activation in CFS. There is evidence of activated T cells, activation of genes reflecting immune activation and increased levels of immune system chemicals called cytokines.
3. There’s substantial evidence of poorly functioning natural killer (NK) cells—white blood cells important in fighting viral infections. Studies differ as to whether there may be increased numbers of NK cells in CFS patients.
4. Abnormalities in the white matter of the brain have been found in CFS patients using magnetic resonance imaging (MRI) scans. Typically, these are small (fraction of an inch) areas just below the cerebral cortex, the outermost area of the brain hemispheres. Differences in gray matter volume are also being observed.
5. Abnormalities in brain metabolism, as indicated by single photon emission computed tomography (SPECT) and positron emission tomography (PET), have been discovered. Other research suggests there’s something wrong with energy metabolism and the oxidative electron transport chain in the mitochondria of CFS patients.
6. CFS patients experience abnormalities in multiple neuroendocrine systems in the brain, particularly depression of the hypothalamic-pituitary-adrenal (HPA) axis, but also the hypothalamic-prolactin axis and hypothamalmic-growth hormone axis.
7. Cognitive impairment is common in CFS patients. The most frequently documented abnormalities are difficulty with information processing, memory and/or attention.
8. Abnormalities of the autonomic nervous system have been found by numerous independent researchers. These include a failure of the body to maintain blood pressure after a person stands up, abnormal responses of the heart rate to standing and unusual pooling of blood in the veins of the legs. Some studies also find low levels of blood volume.9. CFS patients have disordered expression of genes that are important in energy metabolism. Energy comes from certain natural chemicals that are processed by enzymes inside each cell. These enzymes are controlled by specific genes. Other genomic research is revealing involvement of genes connected to HPA axis activity, the sympathetic nervous system and immune function.
10. There’s evidence of more frequent latent active infection with various herpesviruses and enteroviruses. The herpesviruses include Epstein Barr, HHV-6 and cytomegalovirus. Other infectious agents, like bacteria that cause Lyme disease, Ross River virus and Q fever, can also trigger CFS. [*Bolding added by Dominique for easier reading. *]
As Dr. Paul Cheney is known for saying, it is amazing that we are all able to function at all. These discoveries give me much hope because it shows me that we are indeed coming to a place of great understanding of what this illness is all about.
So don’t let anyone tell you that you don’t look sick, thus, you can’t be as sick as you say. The above list proves otherwise. I think it is probably a good idea to print out this list and keep it on you so when people ask what this illness is like, or what it does to us, you can pull it out and let them read away! I highly doubt that anyone who reads the above list could surmise anything other than this is indeed a serious illness.
Note: These discoveries were posted in the June 2007 Special Edition CFIDSLink Electronic Newsletter.
Determined to continue forward,
Ten Discoveries
about the Biology
of CFS
1
The above summary of CFS research findings was provided by Anthony Komaroff, MD,
a professor of medicine at Harvard Medical School, senior physician at Brigham and Women’s
Hospital in Boston and the editor-in chief of Harvard Health Publications. Dr. Komaroff has an
ongoing research program on chronic fatigue syndrome and has published over 230 research
articles and book chapters.
Chronic fatigue syndrome is not a form of
depression, and many patients with CFS have
no diagnosable psychiatric disorder. As with
most chronic illnesses, some CFS patients
become depressed because of the impact of
the illness on their lives, but most studies find
that the majority haven’t experienced depression
before the onset of illness.
There’s a state of chronic, low-grade immune
activation in CFS. There is evidence of activated
T cells, activation of genes reflecting
immune activation and increased levels of
immune system chemicals called cytokines.
There’s substantial evidence of poorly functioning
natural killer (NK) cells—white blood
cells important in fighting viral infections.
Studies differ as to whether there may be
increased numbers of NK cells in CFS
patients.
Abnormalities in the white matter of the
brain have been found in CFS patients using
magnetic resonance imaging (MRI) scans.
Typically, these are small (fraction of an inch)
areas just below the cerebral cortex, the
outermost area of the brain hemispheres.
Differences in gray matter volume are also
being observed.
Abnormalities in brain metabolism, as indicated
by single photon emission computed
tomography (SPECT) and positron emission
tomography (PET), have been discovered.
Other research suggests there’s something
wrong with energy metabolism and the
oxidative electron transport chain in the
mitochondria of CFS patients.
2
3
4
5
CFS patients experience abnormalities in
multiple neuroendocrine systems in the
brain, particularly depression of the
hypothalamic-pituitary-adrenal (HPA) axis,
but also the hypothalamic-prolactin axis
and hypothamalmic-growth hormone axis.
Cognitive impairment is common in CFS
patients. The most frequently documented
abnormalities are difficulty with information
processing, memory and/or attention.
Abnormalities of the autonomic nervous
system have been found by numerous independent
researchers. These include a failure
of the body to maintain blood pressure after
a person stands up, abnormal responses of
the heart rate to standing and unusual pooling
of blood in the veins of the legs. Some studies
also find low levels of blood volume.
CFS patients have disordered expression of
genes that are important in energy metabolism.
Energy comes from certain natural
chemicals that are processed by enzymes
inside each cell. These enzymes are controlled
by specific genes. Other genomic research is
revealing involvement of genes connected to
HPA axis activity, the sympathetic nervous
system and immune function.
There’s evidence of more frequent latent
active infection with various herpesviruses
and enteroviruses. The herpesviruses include
Epstein Barr, HHV-6 and cytomegalovirus.
Other infectious agents, like bacteria that
cause Lyme disease, Ross River virus and
Q fever, can also trigger CFS.
6
7
8
9
10

























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This is a very helpful post, and a good reminder that most of our problems are invisible, which is why they get characterized as “in our head.” Just discovered your blog a few days ago when I decided to start up my own blog after a year with CFS. Figured if it’s been a whole year, it’s time to accept that I have CFS, and maybe I have something I can share, and certainly lots to learn.
Very complete and accurate list, Dominique. Thanks for posting this!
.-= Linda´s last blog ..An Award =-.
Linda – You are welcome!
Terrific post, Dominique. I found this list when it was first printed but it never occurred to me to print it out as something I could show doctors and other people. GREAT IDEA!
Toni – Thank you. I’m glad you liked the idea!
Good information, thank you! I’m still trying to figure out how the immune dysfunction works, though. I’ll have to post about it and get some expert opinions!
.-= Shelli´s last blog ..Orthostatic Intolerance =-.
Shelli – You welcome.
Thank you for this helpful post. My brother’ family (both are vets)
live in Anchorage and have wanted me to travel to vist them and
my daughter and granddaughter live across town. This helps explains
why I can no longer travel even across town to see them. I appreciate
your posting concise information I can share.
Just saying how tired I am doens’t
really explain the extreme muscle fatigue and exhaustion. THANKS FOR
pulling this info together for me to share. Explains why I’m so lonely…
With work and family and distance I rarely see my brother and
my daughter comes here only a few times a year. Praying this information
with reach their hearts. My best two friends are disabled from CFS
so they can’t visit either. I’m glad not everone with CFS is in
this situation of isolation.
Patricia – My hearts breaks for you. Isolation has to be the hardest part of this illness. I am so sorry that you don’t receive more visitors. You are in my thoughts and prayers. I’m sending you a gentle hug long distance!
Thanks for the hug. I received an e-mail today from my daughter after
I sent her a copy of the research you shared. She sent me Ingrid’s
sweet baby kisses and said she would try to come see me soon.
I must get back to focusing on the blessings I do have. I have
to remind myself if I had too many visitors that would definitely
be a problem too. I have prayed for years for just one very close
ongoing friendship that would work. All my close friends have
moved. I was sitting on the porch enjoying our warm spring day
– 70 degrees!— and the beautiful stand of trees across the
street were swaying in their tops sending down showers of pine needles
and pine cones. Nature always helps me pray and regain some peace. I could not help but relate to elderly people – whose
spouse, sibilings, friends have passed on and children live far away –
I feel like that elderly person – well not exactly – but I sure
can relate. You always remind me see that everything CFS gives us to deal
with is a challenge to be met as positively as possible because
that is the only way to make the best of this life. It also
makes the promise of Eternal Life sweeter and sweeter I think than
if I were well. I don’t think I would remember that promise as
often or cherish it as greatly as I can now.
Patricia – I will pray that God will send you a divine appoint and someone who can become that friend that your heart desires.
I’m so glad your daughter contacted you. That must have been nice for you.
It was 70 degrees here as well today but we are supposed to get 4-8 inches of snow tomorrow. In March! Wow!
Hugs.
Thank you for offering to pray for a friend for me – someone out
there is as lonely as I am and need a friend too.
thanks for the post dominique. very interesting. i have rheumatoid arthritis, it is mild. my joints bother me and i feel tired alot. but other than that i’m basically a happy camper and i am blessed. blessings to you. LL
.-= lorilynn´s last blog ..UNFOLD LIFE =-.
Lorilyn – Thank you! Have a great weekend!
The same day you prayed for me to have a good friend – A friend
from church I had not seen for over 2 months dropped by for a visit.
I was telling God how lonely I was and I think he heard both our prayers.
We never know exactly how he will answer. … whether this will indeed
be a long term friendship or a friendship for a season. But boy
I felt better and slept better. Thank you for praying for me, Dominique.
Patricia – Wow! That is way too cool! Oh my gosh! You are so welcome! Oh wow!
Great post Dominique! Thanks for sharing!
.-= Nancy´s last blog ..Wal-Mart worker fired over medical marijuana =-.
Nancy – Thanks.