Saturday, March 22, 2014

Ask Dr. Komaroff

Ask Dr. K: Coping with chronic fatigue syndrome
Anthony L. Komaroff, M.D. Ask Dr. K
Posted:   03/21/2014 11:40:14 AM PDT | Updated:   about 6 hours ago

Dear Dr. K: I have CFS. What is the latest information about the
condition, particularly treatments?

Dear Reader: For readers who are not familiar with the condition, CFS
stands for chronic fatigue syndrome. Fatigue is a universal human
experience. In our increasingly pressured and fast-paced lives, many
people feel tired a lot of the time. In fact, fatigue is one of the
most common reasons people visit their doctor. Yet very few people
with fatigue are suffering from CFS. It is relatively uncommon,
affecting about 4 to 8 out of every thousand adults in the U.S., and a
small fraction of teenagers and younger children.

People with CFS experience ongoing, severe, debilitating fatigue that
is not relieved by rest. Other symptoms include: Impaired memory or
concentration, sore throat, swollen glands, muscle pain, pain in
multiple joints, headaches, and exhaustion following physical

We don't know what causes CFS. People with CFS are more likely than
healthy people -- and people with other fatigue-causing diseases -- to
have various abnormalities.

Many have chronic activation of different parts of the immune system. Many have problems with their cells making enough energy. Many have biochemical abnormalities called oxidative and nitrosative stress.

Then there are problems involving the brain that have been found, thanks to brain imaging techniques (MRI, SPECT and PET). Brain hormones often respond differently to challenges. Electrical brain wave studies often show differences. The autonomic nervous system, the part of the brain that controls basic body functions -- such as heart rate, blood pressure and body temperature -- often does not work properly. But the abnormalities are not seen in all patients with CFS, and they come and go. What is causing these abnormalities remains uncertain.

A combination of the following strategies may help manage your symptoms:

· Set priorities. Make a list of things you want to have more energy
to do. Eliminate as many nonessential activities as you can. But be
careful to guard against becoming too passive.

· Exercise. Begin an exercise program in which you gradually increase
your activity level. This can effectively reduce the severity of your

· Cognitive behavioral therapy (CBT). CBT is a type of psychotherapy.
It helps you identify and change negative thoughts and behaviors. CBT
can reduce symptoms.

· Tricyclic antidepressants. Low doses of this type of antidepressant
may improve the quality of your sleep, reduce pain, and increase

· Other medications. Nonsteroidal anti-inflammatory drugs (NSAIDs) and
acetaminophen (Tylenol) can help relieve headaches, joint pain and
muscle pain. Fish oil capsules (3,000 mg per day) may also help reduce
CFS symptoms.

There are also several experimental treatments in development. These
include drugs to treat abnormalities of the autonomic nervous system,
to quiet activated parts of the immune system, and antiviral drugs
(for people with certain active viral infections).

I am impressed by the progress made in understanding CFS over the past
25 years. It was made possible by research conducted and supported by
the National Institutes of Health, Centers for Disease Control and
Prevention, and private foundations. Still, we have a lot more to

Dr. Komaroff is a physician and professor at Harvard Medical School.
See his website to send questions and get additional information: 
* * *
If you're signing up for CBT, make sure your therapist is going to deal with your grief over losing your former lifestyle, rather than persuading you to overdo yourself right into bed with assertions that you're not really sick.

California Conference Season 2014: Stanford Presents – Advances

This is Cort's report on the conference at Stanford that I did NOT attend.  Just one day in SF was too much for my body.

Friday, March 21, 2014

IACFS/ME Conference this week

The IACFS/ME conference is occurring in San Francisco this weekend.  I went to the patient conference (where they use small words).  I'll be posting my notes over the next few days.
Summary: there's research going on constantly.  Progress is being made.  Not as fast as we'd like, but it's being made.  Dr. Montoya speaks hopefully of a cure.
If you can make it there -- go!  Even if you don't go to the lectures, there's poster presentations in the lobby and informational tables with items both free and for sale.  And, of course, all the experts you might want to chat up.
Parc 55 Wyndham Hotel a block from Fifth and Market.

Thursday, March 20, 2014

Yesterday's IACFS conference at Stanford

This is Cort's report on yesterday's conference, not the one I went to today.  I'll post my notes when I feel up to it.

Phoenix Rising
The 2014 conference season began yesterday at Stanford, home of Dr. Jose
Montoya and his team, and 'searcher' was there to provide a live commentary
on the presentations from an all-star line-up of clinicians and scientists
and which featured some exciting new developments on the research front...

Stanford plays host to the first of *five* conferences over coming days,
and, thanks to our volunteer 'searcher', all members of Phoenix Rising will
be able to follow events as they unfold, live, in the members-only forum,
and also with highlights via Twitter.

We will also aim to also publish a public article - such as this one - on
each of the days following a conference, providing everyone with a chance
to catch-up on events, and after the conferences are finished, we will look
at more in-depth analyses of the presentations: once we have had a chance
to digest all the information, perhaps interview some of those involved -
and pause for breath!

The Stanford ME/CFS Initiative is the department run by Dr. Jose Montoya, a
noted clinician and researcher, and well recognised by the patient
community, and it was he who opened the conference - and about whose recent
research there was perhaps most expectation by the patients in the audience
and following at home.

Notes taken from the conference are highlighted below and click on the
photographs to access a profile (if one was available).

Click this link to read the conference summary in full:

Wednesday, March 19, 2014

Bobby Jindal pushes disabilities canard | MSNBC

Jindal argues that because the law provides such generous funding, more generous than the traditional Medicaid program, to cover childless adults, it "prioritizes" that population over the disabled, many of whom are enrolled in the traditional Medicaid program.
But Jindal, ostensibly one of his party's wonks, especially on health care policy, is wrong.
More from the TPM report on the policy details that "effectively undermine the whole line of attack":
First, some disabled people could actually qualify for health coverage under the Medicaid expansion…. Second, Obamacare should have no policy bearing on the traditional Medicaid program.
... Third, and perhaps most devastatingly to Jindal's theory, Obamacare actually expands programs and funding for so-called "long-term services and supports" under Medicaid – the kind of long-term care that the disabled would utilize.
* * *
Suddenly, when the opportunity comes up to blast Obamacare, politicians are suddenly worried about the disabled.  Why aren't they worried about the hundreds of thousands of disabled people who've been denied SSDI benefits, or who are still endlessly waiting year after year to be approved for benefits?

Tuesday, March 18, 2014

They will not look!


"They can if they look. But they will not look!"

Ten minutes later, I am alone in the lobby, attempting to focus my thoughts. My task here is straightforward. Has Paul been failed by his medics, or is he crazy? Are these people infested with uncommon parasites or uncommon beliefs?

"For people to say you're delusional is very anxiety-provoking. Then they get depressed. Who wouldn't? Hello!"

"In my experience, Morgellons patients are doing the best they can to make sense of symptoms that are real. These people have been maltreated by the medical establishment. And you're very welcome to quote me on that. They're suffering from a chronic itch disorder that's undiagnosed."

"To your brain, it's exactly the same. So you need to look at what's going on with their nerves. Unfortunately, what can happen is a dermatologist fails to find an explanation and jumps to a psychiatric one."

"It's not up to some primary-care physician to conclude that a patient has a major psychiatric disorder."

Nick admits that he was only able to have his samples examined by experts because he was acting as his own doctor. And if that hadn't happened, he says, "I would have received exactly the same treatment that he did. Delusions of parasitosis."

"Paul had the impression that his doctors were working from a kind of checklist," I say, "and if his symptoms weren't on it, he was just dismissed as crazy."

"I'm afraid that's true," says Nick. "If none of the medical models fit, they're dismissed. The immediate conclusion is "medically unexplained symptom", which is a euphemism for nuts. It's a sad indictment of my own profession but I've experienced it first-hand. There used to be a culture of getting to the bottom of the problem. There isn't that now. I find that really sad."

* * *

Another group of patients who suffer the same attitudes as CFS patients: if our science isn't up to finding it, then it must be all in your head.  The specialist who diagnosed me told me that I was ahead of the technology curve and just had to wait for technology to catch up.

Slowly, it has.  Brain scans have found lesions in CFS patients' brains.  Functional MRIs have found that fibromyalgia patients' brains light up differently.  None of those technologies existed when this started.  Some of us were tested for every virus for which there was a blood test, but as time goes on, there are tests for viruses that didn't have tests back then.

Eventually, the technology will catch up, a real diagnosis and treatment will come about ... but not fast enough for many of our patients, who will die or commit suicide while waiting to be taken seriously.

As Dr. Nick Mann said, "There used to be a culture of getting to the bottom of the problem. There isn't that now. I find that really sad."  Part of the problem is that doctors have become too dependent on tests in diagnosing; they don't really listen to the patient, sort through, find a diagnosis that fits, but instead take the mindless route of "if it doesn't show up on a blood test, it doesn't exist."  And, as one of our own experts noted, CDC isn't looking because "they don't WANT to find anything."

Monday, March 17, 2014

The importance of accurate diagnosis

fulltext available at-

Front. Physiol. | doi: 10.3389/fphys.2014.00109
Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS): The
essence of objective assessment, accurate diagnosis, and acknowledging
biological and clinical subgroups.
Frank N. Twisk1*

1ME-de-patiƫnten Foundation, Netherlands


Although Myalgic Encephalomyelitis and Chronic Fatigue Syndrome are
used interchangeably, the diagnostic criteria define two distinct
clinical entities.

Cognitive impairment, (muscle) weakness, circulatory disturbances,
marked variability of symptoms, and, above all, post-exertional
malaise: a long-lasting increase of symptoms after a minor exertion,
are distinctive symptoms of Myalgic Encephalomyelitis (ME). This
latter phenomenon separates ME, a neuro-immune illness, from chronic
fatigue (syndrome), other disorders and deconditioning.

The introduction of the label, but more importantly the diagnostic
criteria for Chronic Fatigue Syndrome (CFS) have generated much
confusion, mostly because chronic fatigue is a subjective and
ambiguous notion. CFS was redefined in 1994 into unexplained
(persistent or relapsing) chronic fatigue, accompanied by at least
four out of eight symptoms, e.g. headaches and unrefreshing sleep.

Most of the research into ME and/or CFS in the last decades was based
upon the multivalent CFS criteria, which define a heterogeneous
patient group. Due to the fact that fatigue and other symptoms are
non-discriminative, subjective experiences, research has been

Various authors have questioned the physiological nature of the
symptoms and qualified ME/CFS as somatisation. However, various
typical symptoms can be assessed objectively using standardized

Despite subjective and unclear criteria and measures, research has
observed specific abnormalities in ME/CFS repetitively, e.g.
immunological abnormalities, oxidative and nitrosative stress,
neurological anomalies, circulatory deficits and mitochondrial

However, to improve future research standards and patient care, it is
crucial that patients with post-exertional malaise (ME) and patients
without this odd phenomenon are acknowledged as separate clinical
that the diagnosis of ME and CFS in research and clinical
practice is based upon accurate criteria and an objective assessment
of characteristic symptoms, as much as possible, that well-defined
clinical and biological subgroups of ME and CFS patients are
investigated in more detail, and that patients are monitored before,
during and after interventions with objective measures and biomarkers.