Saturday, April 6, 2013

Study Illuminates the Cause of the Sleep Problems in Chronic Fatigue Syndrome

 

This study found no significant changes in sleep architecture (time spent in various stages of sleep) between ME/CFS patients and controls but found significant changes in all heart rate variability measures between the two groups during sleep.

They also found reduced sleep efficiency and reduced total sleep time in the chronic fatigue syndrome patients. When they looked deeper, they found that patients who felt sleepier had a 'higher fractal scaling index',, which is believed to indicate increased sympathetic nervous system activity, in Stages 1, 2 and 3 sleep compared to controls.

* * *

In my case, we noticed that each time I was sliding into relapse, I had nightmares about being chased by a dragon -- as the full article notes, "fight or flight activation".

We were never sure whether the nightmares occurred because of changes in brain chemistry (I was already relapsing) or whether the relapse started because I was only getting a couple hours of sleep before I woke up and was awake the rest of the night, so my immune system was being depleted by the lack of sleep.  So we were still looking at a Chicken And The Egg question, but at least we had a little advance warning that my body was planning to give out soon.

 

 

Thursday, April 4, 2013

As Profit Shares Hit New Highs, Washington Focuses on Abuse of Disability

 
"We could be talking about these or other measures to bring corporate profits back down to more normal levels. But the VSP don't want the public discussing such issues. They want us to be arguing about how to keep sick, injured, and unemployed workers from collecting $1,100 a month in disability insurance. You can count on seeing many more pieces on disability insurance in the news in coming months."
 
Because, of course, it's so wonderful to live below the poverty level that people are happy to give up a decent job (because you don't get $1100 if you've only been earning minimum wage) to scrape by the rest of your life.  But that logic can't be considered by those who spread the myth that it's easy to defraud Disability.

The danger of 'inattentional blindness'

 

These were not bad radiologists, but 83 percent of them missed a large abnormality on the CT scan. The study shows that when we are paying attention to one thing we often fail to notice other very obvious things happening at the same time.

In this case the radiologists were looking for lung cancer so they ignored everything else – even a dancing gorilla that any 5-year-old would easily spot.

 
 
 
 

Monday, April 1, 2013

Dr. Andrew Weil: When to Ignore Common Sense

 
And when someone tells a CFS patient that exercise will help!
 
 

Article does not reflect current best treatment

Article on CFS Does Not Reflect Current Best Treatment Practices

*Am Fam Physician.* 2013 Apr 1;87(7):online.

Original Article: Chronic Fatigue Syndrome: Diagnosis and Treatment

Issue Date: October 15, 2012

Available at: http://www.aafp.org/afp/2012/1015/p741.html

TO THE EDITOR: We feel that the overview of the diagnosis and treatment of
chronic fatigue syndrome (CFS) was incomplete and did not reflect current
best treatment practices. The discussion of current CFS research omitted
key studies, such as evidence from prospective cohort studies indicating
that up to 10 percent of patients with postinfectious syndromes develop
CFS, regardless of the type of infectious
agent.1<http://www.aafp.org/afp/2013/0401/ol1.html#afp20130401p1b-b1>
Biomarker
research has shown distinct patterns of gene expression correlating with
cytokine, adrenergic, and sensory receptor changes after modest exercise in
patients with CFS compared with healthy sedentary
patients.2<http://www.aafp.org/afp/2013/0401/ol1.html#afp20130401p1b-b2>
Indeed,
many peer-reviewed publications support a physiologic etiology of CFS.

The authors emphasize behavioral treatments for CFS, but we have found
these treatments to be effective only in helping patients cope with the
illness. Graded exercise therapy (GET) should be administered with great
caution by physicians familiar with CFS, because even mild exercise can
provoke postexertional malaise and severe symptom flare-up that correlate
with gene expression
findings.3<http://www.aafp.org/afp/2013/0401/ol1.html#afp20130401p1b-b3>
The
authors also do not address diagnosis and management of orthostatic
intolerance, a common and significant issue for patients with
CFS.4<http://www.aafp.org/afp/2013/0401/ol1.html#afp20130401p1b-b4>

Health care professionals should avail themselves of expert resources to
provide the best care to patients with CFS. The Centers for Disease Control
and Prevention offers continuing medical education courses on CFS at
http://www.cdc.gov/cfs/education/index.html. A free primer published by the
International Association for Chronic Fatigue Syndrome/Myalgic
Encephalomyelitis is available at
http://www.iacfsme.org/Home/Primer/tabid/509/Default.aspx.

CFS is a physically debilitating illness that places great burdens on
patients and their families. Primary care physicians who understand the
physical complexities of the illness will be able to better assist these
patients in managing this serious chronic illness.

LUCINDA BATEMAN, MD

JENNIFER SPOTILA, JD

Salt Lake City, Utah

E-mail: fcclinic@xmission.com<https://mail.google.com/mail/?view=cm&fs=1&tf=1&to=fcclinic@xmission.com>

Dr. Bateman has received research funding from the Centers for Disease
Control and Prevention and the Chronic Fatigue Initiative for the study of
chronic fatigue syndrome in clinical practice.

Author disclosure: No relevant financial affiliations.

REFERENCES

1. Hickie I, Davenport T, Wakefield D, et al. Post-infective and
chronic fatigue syndromes precipitated by viral and non-viral pathogens:
prospective cohort study. *BMJ*. 2006;333(7568):575.

2. Light AR, Bateman L, Jo D, et al. Gene expression alterations at
baseline and following moderate exercise in patients with chronic fatigue
syndrome and fibromyalgia. *J Intern Med*. 2012;271(1):64–81.

3. Davenport TE, Stevens SR, VanNess MJ, Snell CR, Little T.
Conceptual model for physical therapist management of chronic fatigue
syndrome/myalgic encephalomyelitis. *Phys Ther*. 2010;90(4):602–614.

4. Rowe PC. Orthostatic intolerance and CFS: new light on an old problem.
*J Pediatr*. 2002;40(4):387–389.

IN REPLY: We appreciate this thoughtful letter. We do not dispute a
physiologic etiology for CFS; our article mentions both postinfectious and
genetic factors as possible contributors to the syndrome. Because there is
no known cure for CFS, the family physician should assist patients in
coping with symptoms in the most effective way possible. We emphasized
behavioral treatments, not to imply that the etiology of CFS is
psychological, but because the weight of evidence favors them at this time.

The PACE trial was by far the largest and best-designed study of treatments
for CFS. It was a randomized controlled trial demonstrating that cognitive
behavior therapy (CBT) and GET have moderate benefit in persons with CFS.
Both were superior to specialist care alone and adaptive pacing therapy,
defined as "helping the participant to plan and pace activity to reduce or
avoid fatigue."1<http://www.aafp.org/afp/2013/0401/ol1.html#afp20130401p1b-b5>
We
did not cite the International Association for Chronic Fatigue
Syndrome/Myalgic Encephalomyelitis primer because it was published after
our literature search date. Although the primer contains useful information
for family physicians treating CFS, it deemphasizes CBT and GET because
although they "may improve coping strategies," they do not "cure the
illness."2 <http://www.aafp.org/afp/2013/0401/ol1.html#afp20130401p1b-b6>

Some have expressed concerns that the PACE trial interventions could be
harmful3 <http://www.aafp.org/afp/2013/0401/ol1.html#afp20130401p1b-b7>;
however, there was no difference in adverse events between the CBT and GET
groups and the pacing therapy and specialist care groups.

Because postexertional malaise is a hallmark of CFS, it is easy to conceive
how therapies focused on increasing activity that are supervised by those
who do not understand the illness could lead, and likely have led, to
exacerbation of symptoms in some cases. I concur with Drs. Bateman and
Spotila that family physicians should refer patients for these therapies
only to specialists with expertise in CFS and the dangers of overexertion.
In addition, the results of the PACE trial should not be generalized to
patients with severe CFS (e.g., those who are bed-bound). Applied safely
and appropriately, however, CBT and GET may help patients with CFS cope
with this disabling illness.

JOSEPH R. YANCEY, MD

Fort Belvoir, Va.


Author disclosure: No relevant financial affiliations.

REFERENCES

1. White PD, Goldsmith KA, Johnson AL, et al.; PACE trial management
group. Comparison of adaptive pacing therapy, cognitive behaviour therapy,
graded exercise therapy, and specialist medical care for chronic fatigue
syndrome (PACE): a randomised trial. *Lancet*. 2011;377(9768):823–836.

2. Chronic fatigue syndrome/myalgic encephalomyelitis: a primer for
clinical practitioners. 2012.
http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf. Accessed January 11,
2013.

3. Kindlon T. Reporting of harms associated with graded exercise therapy
and cognitive behavioural therapy in myalgic encephalomyelitis/chronic
fatigue syndrome. *Bulletin of the IACFS/ME*. 2011;19(2):59–111.
http://www.iacfs.net/. Accessed January 11, 2013.