from Kumamoto, Japan where I happen to be killing time in an internet
café during the evenings after the presentations from the
4th Japanese Fatigue Society Meetings. But rather than turn this
into some sort of blog (I am not really sure what exactly a blog
is), I would like to send out some material that has been accumulating
over the past six months. I apologize for the lack of issues of
the Lyndonville News, but that’s
the way it goes. I am taking copious notes from the meetings and
hope to send them out in a newsletter in the near future, but
I have promised that sort of thing before so don’t hold
have gotten lots of feedback from readers about the new book,
and Neuro-Immune Fatigue. I appreciate
the comments and hope that the concepts presented will grow into
an effective treatment strategy. Anyone interested in the book
can send $25 to David S. Bell MD, 1276 Waterport Road, Waterport,
NY 14571. There have been some requests from overseas, and if
they wish, they can get a US bank draft or money order for the
same amount. It turns out that the mail gets delivered to Europe
faster than to places within the US. Go figure.
am continuing with the changes in the office and struggling with
cutting back on my regular practice. I may “sell”
my regular practice for $1.00 to a nearby clinic. After thirty
years of practice that’s about all I can get for it. One
of my regular patients heard about it and indignantly said that
he was not for sale. I doubt I could have gotten a dollar for
his body parts anyway.
the years my patients have been very kind to me, at least most
of them. Here is a poem from a ten-year-old boy.
I’m going for a check-up,
I’m healthy (Mom says I’m not)
They weigh me and take my temperature,
I hope I don’t need a shot!
I did need a shot,
But I have a whim.
That I can give the doctor a shot
When I’m as old as him.
many of you are aware there is ongoing discussion of the name
of this illness, and the Campaign for a Fair Name
has a web site at www.afairname.org.
A petition is presented there and a vote will take place in March.
I would encourage as many of you as possible to be involved. Personally,
I would like the name issue to be settled one way or another so
we can get on with it.
continue to come in about the Stanford study and the use of Valcyte.
We have no further information from the study as yet, but a patient
of Dr. Lucinda Bateman is writing a blog that is available on
website that might be of interest. It seems that we are all holding
our breath in hopes that this is going to work.
had the great good fortune of seeing a personal milestone passed
with the recent conference in Oslo, Norway. I can remember twenty-five
years ago hearing someone say that in the future there would someday
be medical conferences packed with health care providers studying
how to diagnose and treat ME/CFS. I can remember being a little
dubious. But now I can say that I have seen it come to pass.
Oslo conference was two days; the first day for patients and support
persons, and the second day was for health care providers. On
that second day the conference center was packed with over 450
health care providers. We heard presentations on an outbreak of
ME/CFS in Bergen, Norway, and numerous other review talks. It
was extraordinary to see so many health care providers eager to
learn about ME/CFS. A representative from their health department
cancelled a number of appointments so that she could stay and
hear the entire proceedings. I have a hard time remembering when
that ever happened in the US. Congratulations to Ellen Piro and
the Norwegian ME Association.
is 85 years old, and showed up in the office for a follow-up check
after twenty-five years. I saw him for a few visits in 1982, and
he had been ill then for about twenty years. It had started with
mononucleosis somewhere in the 60’s, and he never quite
recovered. His course is a textbook of the natural history of
the illness, good news and bad news. The timid and those persons
assuming that ME/CFS/FM is a benign illness might elect not to
read this section further, as John’s illness did not disappear.
Some years ago the CDC published a paper saying that ME/CFS is
not a progressive illness. They have not followed it long enough.
most persons with an acute infectious onset, John was very ill
for a couple of weeks and then seemed to get better. He got up
to around the 70% activity mark and was doing pretty well, and
then crashed. For the next two years he was quite ill but slowly,
very slowly began to improve. He endured hundreds of tests and
even more comments about how he was probably “under some
stress” or depressed. It was, after all, the 60’s,
and physicians had not yet become familiar with ME/CFS. But even
in his 40’s, John was a tough old bird, and he got along
with his life as best as possible.
I first saw him his activity was clearly reduced to about 40%
of normal. He had all the classic symptoms, but his spirits were
good, and he had some support from family and friends. Eventually
he got social security disability, and, while he was not pulling
in the big bucks, he got by.
were ups and downs. The good times were characterized by a few
days at a time of pretty good activity where he could get out,
visit friends, read and study. As the years went by the degree
and length of the good times slowly decreased. The degree and
length of the bad times slowly increased. John was always dedicated
to physical exercise, and he employed common sense. One of the
most difficult days of his life was the day he could not get back
to his house after a short walk. As the years progressed he used
a wheelchair more and more. Yet when I tested his muscle strength
on the examining table it was normal. The problem in ME/CFS is
the inability to sustain activity.
illness and its slowly progressive nature were not a surprise
to me. But what caused me to sit back and listen in admiration
was the strength of the human spirit. Despite the difficulties,
the lack of recognition, and the physical symptoms, John not only
maintained his dignity, he was able to find meaning and many moments
of joy over the past 50 years. John is my teacher. New cars, money,
social stature and daily comforts are insignificant when stacked
up against the success of the human spirit. If and when I reach
the tender age of 80, I hope I will be able to say I have accomplished
as much as John.
has only been recently that I have become aware of Sophia’s
story. It is a nightmare that has been written by Sophia’s
mother concerning her daughter’s illness and death. The
story is available on the Invest in ME website (www.investinme.org).
Like many families struggling against this illness, Sophia’s
mother was told by her physician that “I was keeping her
ill and as long as I was looking after her she would never recover.”
Sophia was forcibly removed from her home and put in a locked
psychiatric ward. After prolonged difficulties Sophia passed away
November 22, 2005. The initial autopsy showed no cause of death,
but further tests showed “unequivocal inflammatory changes
affecting the special nerve cell collections (dorsal root ganglia)
that are the gateways (or station) for all sensations going to
the brain through the spinal cord. The changes of dorsal root
ganglionitis seen in 75% of Sophia’s spinal cord were very
similar to that seen during active infection by herpes viruses
(such as shingles).”
is hoped that Drs. Chaudhuri and O’Donovan will identify
the cause of the spinal cord damage and publish their results.
But will the medical community listen? Could it be that the ganglionitis
was caused by a herpes group virus like ones being studied in
the Stanford study? I pray that no one with severe ME is ever
forcibly incarcerated in a mental hospital again, and I pray that
Sophia may rest in peace.
Research Group Report
had a meeting of the Research group to pull data from treatment
results using standard medical (symptom reduction) treatments.
While the numbers have yet to be properly crunched, it has been
my feeling that the standard medical approaches have not resulted
in a significant improvement of activity. Certain symptoms are
clearly better, and among them are the sleep quality and pain.
But the key issue for quality of life for persons with ME/CFS/FM
is the level of overall, productive activity. The first study
that we are going to do is to compare the level of symptoms with
standard medical treatment and the level of symptoms with high
dose B12 treatments. There is no doubt that some people respond
to this treatment. The question is how to predict who will respond
and how to improve the responses of those who do not respond.
Two members of the Lyndonville research group are combing the
medical libraries looking for information on high dose B12. They
are moles, burrowing into the literature. If we should come up
with anything, we’ll put it in a future issue.
was fascinated by the clinical notes in the last issue of the
Lyndonville News. The comment regarding
the 2 types of CFS is the sort of observation that could seem
obvious to clinicians, while still being overlooked in empirical
research, and even obscuring many studies' results. As a side-note,
I've read a lot of scientific CFS literature since being diagnosed
myself, and I haven't come across anything as thought-provoking
as your Faces
of CFS. I wonder if many CFS researchers are
skeptical about case-studies because they may seem non-scientific;
however, such detail, I think, is very productive.
particularly interested me about the notion of a frazzled subtype
is the potential role of epinephrine in CFS. Some recent studies
have found propranolol useful in treating CFS and FM. This treatment
struck me as a little counter-intuitive; that is, what doctor
would be cruel enough to deny adrenaline to patients who can't
get out of bed? If propranolol ends up being very useful, you
can see why it might have been overlooked.
I think there are a couple of general and specific connections
between epinephrine and CFS symptoms, which play out in the literature
on propranolol. Propranolol's effect on POTS is well-documented,
but the drug probably also boosts immune functioning, reduces
inflammation in certain circumstances, regulates sense and pain
perception, eases digestion (particularly of carbs), and increases
the threshold for exertion. Epinephrine's negative effect in these
areas could fuel a self-reinforcing cycle, like Pall's NO/ONOO
cycle. Moreover, anecdotal risk factors for CFS, like long-term
exercise and type A personality, probably involve increased epinephrine.
it's also curious to think about propranolol in terms
of all the obtuse research that favors psychological treatment.
This is because epinephrine can be consciously controlled to a
small degree by, for instance, self-awareness and breathing slowly.
However, if the long-term benefits of psychological treatments
ultimately lie in teaching patients to control epinephrine release,
then propranolol would be much more effective.
A very interesting set of questions. First of all, adrenalin (epinephrine
and/or norepinephrine) is very involved in the illness, particularly
the frazzled subtype. It can be measured after simple standing,
and when it is over 600 it is considered abnormal (Hyper-adrenergic).
It is my observation that treating patients with this type with
any medication (coffee, stimulants, midodrine) which increases
adrenalin, they get worse.
Secondly, I don’t think beta blockers such as propranolol
do very much good. The hyperadrenergic response is a response
– it is trying to improve a sad state of affairs, and when
it is blocked, patients don’t seem to feel much better.
Their chest pain goes away, though. CT scans of the adrenals show
that they are small, thus the name “adrenal fatigue”,
probably because they have been squeezed for so long.
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Any medical advice that is presented in the Lyndonville
News is generic and for general informational purposes
only. ME/CFS/FM is an extremely complex illness and specific advice
may not be appropriate for an individual with this illness. Therefore,
should you be interested or wish to pursue any of the ideas presented
here, please discuss them with your personal physician.