"Laura Lipscombe"

April 2012 ME Story: Laura Lipscombe

I almost missed this month's story.  I had so much going on I didn't realize today is the 12th of the month and a new Becoming VISIBLE 4ME story is up. That would have been a real shame, because this month's story, by Laura Lipscombe, is really impacting. Many of the feelings and situations...

4Walls and AView

10 breakthoughs on the BIOLOGY of CFIDS

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,

E CFIDS ASSOCIATION OF AMERICA www.cfids.org
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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About Dominique

Dominique is a part-time writer and blogger. She currently writes about the challenges of living with Myalgic Encephalomyelitis (ME) and Fibromyalgia (FMS) which she has now lived with since December 1992. She also has her own column, which is published in Life Skills Magazine (LSM) in England. In Feb. 2011, she founded, Becoming VISIBLE 4ME, an organization designed to help raise awareness about the reality of living with ME – 1Story@aTime. Dominique has a BS in Drama with a minor in English Lit. ***When not writing, she spends time working on a variety of creative projects, playing scrabble, reading audio books, and looking forward to spending time with her daughter and grand-daughter as often as possible.
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Comments
  • AlwaysTired March 19, 2010 at 3:35 am

    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. :)

  • Linda March 19, 2010 at 5:08 am

    Very complete and accurate list, Dominique. Thanks for posting this!
    .-= Linda´s last blog ..An Award =-.

  • Toni Bernhard March 19, 2010 at 8:36 am

    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!

    • Dominique March 19, 2010 at 9:57 am

      Toni – Thank you. I’m glad you liked the idea!

  • Shelli March 19, 2010 at 11:31 am

    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 =-.

  • Patricia March 19, 2010 at 12:53 pm

    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.

    • Dominique March 19, 2010 at 1:47 pm

      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!

  • Patricia March 19, 2010 at 5:22 pm

    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.

    • Dominique March 19, 2010 at 6:24 pm

      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.

  • Patricia March 19, 2010 at 8:05 pm

    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.

  • lorilynn March 19, 2010 at 8:27 pm

    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 =-.

    • Dominique March 19, 2010 at 10:51 pm

      Lorilyn – Thank you! Have a great weekend!

  • Patricia March 20, 2010 at 11:40 am

    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.

    • Dominique March 20, 2010 at 1:35 pm

      Patricia – Wow! That is way too cool! Oh my gosh! You are so welcome! Oh wow!

  • Nancy March 22, 2010 at 12:32 am

    Great post Dominique! Thanks for sharing!
    .-= Nancy´s last blog ..Wal-Mart worker fired over medical marijuana =-.

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