Saturday, January 20, 2007

Latest Medical Information about CFS

Thanks to Pat Fero for this report.  This new information again proves that CFS is a very real, complex medical (not psychological condition) that needs serious research.

An informal IACFS conference summary - first take.

Pat Fero, MEPD
WISCONSIN


I attended the 5 day IACFS conference, January 9 - 14 in Ft. Lauderdale,
and in many ways it was amazing. I am attempting, in general terms, to
describe what I heard. I can no longer take notes and listen, so I will
miss important things plus I show bias for my own personal interests.
Additionally, it is impossible to attend 5 days of presentations. Please
look for other conference summaries that will be extensive. You might
consider ordering the IACFS conference syllabus for $15 or choosing audio
and/or video options.  Call Insta-Tapes Media at 1 888 346 8273 for
ordering and pricing information.

Research findings and ideas:
   In general terms, many studies looked at exercise intolerance to try to
define what happens in the body.  The researchers and clinical scientists
are developing methods to measure cardiovascular, and cardiopulmonary
health in CFS patients. This relates to oxygen consumption. Several papers
in the main session and in the poster sessions showed that CFS patients
ability to do work (bike, treadmill)  is impaired if one measures how much
oxygen is used for the task. It's a mathematical computation based on
(age?) and body weight. Control groups varied. Normal, deconditioned and
those patients with primary depression were compared to CFS patients. One
interesting study showed that CFS patients will show extreme abnormalities
in a next day, second session of exercise. CFS patients do not recover in
24 hours =  intolerance.


Patients understand "overdoing" and "payback," but in research it is
wonderful to see US and international scientists defining methods to show
what we experience. Over and over again, I heard...THIS is a very abnormal
finding. In addition, one study showed that both mental and physical energy
expended can cause impairment.


What to do about it? Graded exercise therapy is ill advised. If a patient
has abnormal oxygen consumption, muscles will not have enough O2. If you
push yourself, this will start a cascade of events that lead to
relapse.  Yet, any kind of movement helps the body maintain some activity
tolerance and allows those chemicals recycled in muscle contraction to be
stimulated.


Along the same lines, it was hopeful to see several studies on cardiac
involvement and CFS. This would include work on viruses that seem to target
heart tissue (Martin Lerner), Inflammation and Arterial stiffness in
patients predictive of cardiovasular risk (Vance Spence), and the complex
lecture by Paul Cheney on "Diastolic Dysfunction in the Chronic Fatigue
Syndrome enhanced by Tilt-echocardiography."


Immunology/Infectious disease studies are back!  One researcher new to CFS,
presented a wonderful explanation of MD training and the infectious disease
model. Jose Montoya, Stanford University School of Medicine, said that
traditional training wraps around a short course disease model. A person
gets very ill, is treated if possible, then lives or dies.  Disease with an
infectious onset resulting in long term, chronic illness is not common and
is not emphasized in medical school training.


So why chronic illness with infectious onset?  Scientists need to look at
gene variance and to try to find abnormalities and commonalities in CFS
patients to see the disease process.  Montoya also discussed the changing
view of viruses. It was thought that one virus = one type of illness.(EBV
causes mononucleosis.) Apparently, with much more study on viral infection,
viruses in general, and the discovery of new viruses, we know that several
kinds of viruses or a combination can cause very similar illnesses. Viruses
mutate, and viruses adapt to the host. (That would be you and me.)


Genetics/Proteomics. How is the variability of the host reaction to viral
infection related to genetics? Again, investigations in this area surge
forward in all countries. Because the information is very technical and I
have no background, I cannot address this. However, the surge represents
keys unlocking doors for people with CFS.


Proteomics focuses on the structural and functional properties of proteins
and their expression. One investigation poses that a specific CFS related
proteome (like a profile) suggests a common pathophysiology for CFS, FM and
Persian Gulf War Illness. This research is a collaboration among three
academic institutions, Federal Institute of Technology, Zurich,
Switzerland, University of Michingan, Ann Arbor and Georgetown University
(PI James Baraniuk).


Medical Technology. I want to emphasize that thinking about fatigue in
scientific terms is changing and is cutting edge.   One session was called,
"New Methods for Evaluating the Fatigue State." A patient might think...oh
no...here we go again. However, the presentations that followed showed a
leap in how to think about fatigue.  -  "Spectroscopic diagnosis of Chronic
Fatigue Syndrome by visible and near-infrared spectroscopy in serum
samples."  - This complex presentation from Japanese researchers at the
Fatigue Clinical Center in Osaka, Japan, concluded that "Vis-NIR
spectroscopy for sera combined with chemometrics analysis could provide a
promising tool to objectively diagnose CFS." The team was able to determine
through blood, a "complete separation"  of 77 CFS patients from 71 healthy
controls


You knew you were sick!

New methods in viral studies using refined technology show further
abnormalities in subsets of CFS patients. I missed an entire session on
Sunday afternoon devoted to this, but smaller sessions from Wednesday
through Sunday, highlighted the work. With the support of the HHV6
Foundation, the founders, Kristin Loomis and Annette Whittemore and their
scientific advisor, Dr. Dharam Ablashi who discovered HHV6, interest is
renewed and generated in viral CFS investigations.


Case Definition and Epidemiology. Several sessions were devoted to the
various research and clinical case definitions of CFS. As with new medical
equipment that enables researchers to look more carefully at donor samples
to find a biological marker for CFS, establishing a criteria that works in
the doctors office is a much needed diagnostic tool. Unless MD's use  the
Canadian ME/CFS criteria or use their own gleaned from years of clinical
practice, they have no standard to use when trying to discover if a patient
has CFS. So, with much lively discussion about including this or that
symptom, scientists are trying to find something practical, so we do not
have to go to 10 MD's before finding a diagnosis.


A new Pediatric case definition was introduced by a panel of international
researchers. This is in the development stages, but it looked very good to
me. The longer document includes the definition and a preliminary
questionairre that can be used for parents and for a child who might have
CFS. My thought was THANKS to Dr. Leonard Jason who spearheaded this effort
and to all the MD's who have been seeing kids for 20 years. AND...IT IS
ABOUT TIME. How can we begin to look at how common CFS is in kids unless we
have a way to define what the beast looks like in this population?


Brain Function. Seven investigators presented in this 2 hour session. (I
missed the entire session.) As I look at abstracts, I see that increased
use of instruments like MRI, SPECT, PET and fMRI, and use of these in an
innovative way, show some of the abnormalities in functioning that patients
experience on a daily basis. These may not have practical application if a
patient cannot have this testing done, but there are other ways to find
loss of functional abilities.


In one study, the Van Hoof Elke (Belgium), patients performed a
standardized exercised stress test, neurocognitive tests and filled out a
questionnaire on their functional abilities. The results showed that
functional status could be predicted by both the exercise stress test and
by testing cognitive abilities. This Belgium team concluded that use of
these very common tools to define occupational disability seems valid.


Years ago, a Deluca study showed that CFS patients have deficiencies in
speed of information processing. At the time, it was one of a few studies
confirming what patients say about their loss of thinking skills. At this
2007 conference, several studies furthered our understanding . The Japanese
and Swedish research teams collaborated on comprehensive look at a
neuro-molecular mechanism leading to chronic fatigue. They conclude that
CFS is not only a functional disorder, but also an organic disorder.


Now that I am looking at the abstract book, I find many interesting
studies. Perhaps I will write a second summary. I did not even mention
advocacy issues that were addressed for 2 days and simmered for 5 days. You
know, after I returned from the first Ft. Lauderdale conference in 1994, I
devoted a 90 minute support group meeting to summarizing the research. We
had 40 people attending! Now, I could not do that because there is far more
research in many more areas and we no longer have a Madison support group.
The dynamics are so different.....


I know I will post about NIH funding. I have 2 new FOIA's. The bottom line
on these is... YES, we have 7 new CFS grants = the possibility of renewing
7 grants, so the situation is better. The down side is that The NIH
budgeted 6 million dollars, the "new money" offered the possibility of 4
million dollars, so one would think that we would have 9  to 10 million
dollars spent on CFS in 2006. I would take 8 million. However, it appears
to be the same 6 million dollars we have had for years. The FOIA documents
are on the WI website at www.wicfs-me.org.


The conference was delightful and perplexing. PANDORA people worked many
long hours and far into the morning the night before the patient conference
which had about 300 attendees. For me, meeting patients cements my
commitment to work on CFS issues a long as I am able. What a joy!!!


The scientists and MD's (about 300?) are committed to CFS research. It's
neither a high profile career in science, nor do they gain great wealth
from researching an underfunded, misunderstood, cutting edge illness. When
the MD's go home, they do not have support circles of colleagues that
admire their work and share stories. The ICONS in our community show wear
and tear and holes in their shoes just like us. I am pleased to have been a
part of the 8th IACFS conference and I am looking forward to the next event.


Dietary supplements/prescriptions. We still have few treatment studies for
CFS. Several companies exhibited products and their studies showed the
positive effects of supplements in CFS and FM patients.

 

After all these studies showing major compromise of bodily systems, it should be clear that if anyone needs their heads examined, it's the doctors who continue to deny CFS is real, and not the patients.

One of my doctors claimed he didn't take me seriously because "nothing she said made sense".  In fact, everything I told him made perfect sense in the context of CFS.  He just couldn't make it fit his desired diagnosis of depression, and rather than considering that his diagnosis might be wrong, it was easier to put the blame on me for confusing him.

Wednesday, January 17, 2007

Perception vs. Reality

My ex’s work schedule had him working on Saturdays. We lived in a tiny apartment (the whole place was the size of my aunt’s living room), therefore, it was best if I stayed out of his way while he was getting ready for work. That meant I couldn’t be in the bedroom, kitchen or bathroom, or anywhere along the path between them, where I’d be underfoot during his preparations, so I would retreat to the couch in the far corner of the apartment and knit until he left. When he came home Saturday night, I’d be on the couch knitting. Therefore, it was his perception that I had spent the whole day on the couch knitting and hadn’t done a thing all day.

The reality was, once he left for work, I’d wash his breakfast dishes (something he should’ve been able to see had been done), fix my own breakfast, clean the rest of the apartment, and cook a nice dinner from scratch (something that I know he knew had been done, since he sat down to eat it when he got home). But because he didn’t see me doing any of those things, it was his perception that he "did all the housework" and I did absolutely nothing. He saw the little things that he did (about every six months, he would swish a brush through the toilet and demand praise accordant with having single-handedly cleaned Buckingham Palace), but he never saw me doing the cleaning, therefore, I "obviously" wasn’t doing any.

The same perception-versus-reality exists with CFS. People see that you spend most of your day resting, but they never acknowledge the things you do when you’re not in bed. Someone who was truly "lazy" would not spend most of her good hours cleaning her house or spend all his good hours working for pay; they’d spend the good part of their day at the beach or the mall, having fun.

I had a doctor who was convinced that I was applying for Disability because I didn’t want to work, and this perception blinded (or rather "deafened") him to any reports that I was trying to work (e.g., I accepted an 8-hour research/writing project and it took me 3 weeks to finish because I could not understand the books that I had to read – after the second or third sentence, they could just as well have been printed in Russian).

His perception was that I didn’t want to work, when the reality was that I wanted very badly to work, but I simply could not do it – getting to the library to do research left me so exhausted that my eyes and brain wouldn’t focus on the book in front of me. It was the same experience that my roommate had after pulling a three-day all-nighter, so why should it be so unfathomable that physical fatigue would cause mental dysfunction? Moreover, when I was complaining that I had been sleeping 2 hours a night for months, why wouldn’t he recognize these symptoms of sleep deprivation? Perhaps he might have, if his mind hadn’t been clouded by the perception that women lack the work ethic men have, and therefore I was just looking for an excuse to stop working.

The reality is that most of the CFS patients I know continued to drag themselves into work, getting sicker by the day, until either they were told by their boss not to come in any more or became so sick that they couldn’t get out of bed without collapsing to the floor. That shoots down any assertion that the real problem is that patients are slackers. But, the perception is so ingrained that it’s hard for the reality to batter down the wall to peek through.

There’s also the notion that because there is no test specifically for CFS, that the symptoms are "medically unexplained" or that there is no test which shows any abnormalities. There are many tests which will be abnormal, but they are not the blood tests which are commonly performed: they are unusual or expensive high tech tests that are not part of the standard series performed by most general practitioners. There are 4000+ studies worldwide showing objective abnormalities, with obscure tests of immune function or brain scans or neurological testing. If someone comes in with the mumps and you give them a blood test for measles, that test will indicate they’re perfectly healthy, because it’s testing the wrong thing, and it’s the same with the basic blood tests done by most doctors – they aren’t testing for brain lesions or central nervous system dysfunction or NK cells – they test for diabetes (which I don’t have), lupus (which I don’t have), hypothyroid (which I don’t have)... Of course, they’re negative. It took years before anyone did any test that would reveal an infection/immune problem, and when I had it, it was described to me as "off the charts".

It doesn’t help that psychologists have exploited the name similarity between Chronic Fatigue Syndrome and the symptom of chronic fatigue and the psychological condition Fatigue Syndrome, and have persuaded the media that CFS and CF and FS are really all the same thing, and are all psychological. That may be the perception, but, in reality, CFS has a diagnostic code number that places it in the neurological category (which is logical, given its previous name of Myalgic Encephalomyelitis: inflammation of the brain) while FS has a diagnostic code number in the psychological classification.

Other doctors have the perception that CFS is another name for depression, one which avoids the stigma of mental illness. The reality is that CFS has many symptoms not present in depression, and test results for the two are vastly different, e.g., cortisol tests are out of whack in opposite directions. Someone who has true CFS (as opposed to a misdiagnosis) will have absolutely no benefit from anti-depressants. (In fact, most of them make me even sicker.) However, researchers have seen dramatic improvement with anti-viral drugs, which would have no effect on depression.

Unfortunately, anti-viral drugs, whether for AIDS or for CFS, are prohibitively expensive, costing tens of thousands of dollars a year. Ampligen, which was first tested on CFS patients in the 1980s, still is not FDA-approved, and, as an experimental medication, is not covered by health insurance. Very few patients are in a position to spend $20,000 a year for the rest of their life on Ampligen (when patients stopped taking it, they relapsed). For someone who contracts CFS at a relatively young age and has 50 years to live, that’s a million dollars out of their own pocket. For the average patient surviving on about $800 a month in Disability benefits, it might as well cost a million dollars a year.

Yet, assuming that it worked for me, enough to get me back to work full-time – I just saw a job comparable to the one I left advertised at $55,000. The government would easily get back in taxes more than the cost of providing a trial period of Ampligen to get me back on my feet so I could go back to work and start covering the cost myself. But, for all the arguments that disabled people should get off our lazy butts and go back to work, the government refuses to approve Ampligen for sale outside limited clinical trials, or to pay for therapies that would get millions of disabled people back to work. You’re expected to pull yourself up by your bootstraps, even if you cannot afford boots.

If you don’t, the perception is that you’re too lazy to work, rather than that you’re too poor to pay yourself for the therapy that might help.

 

 

Dr. Mark Loveless, an infectious disease specialist and head of the CFS and AIDS Clinic at Oregon Health Sciences University, proclaimed that a CFIDS patient "feels every day significantly the same as an AIDS patient feels two months before death."

 

Tuesday, January 16, 2007

Good News, Bad News

The good news coming out of last week's IACFS conference is that a professor at Stanford has had promising results giving patients anti-viral medication.  Which proves, unequivocally, that the problem is a virus and not something that can be fixed with an anti-depressant.

The other good news is that this medication is significantly less expensive than Ampligen, which costs $20,000 a year (... if you can get it, because it's not yet FDA approved).  This one is already FDA approved.

The bad news is that the medication costs over $1000 a month, and he starts with a six-month trial.  That means that anyone who is so sick that they are surviving on Disability benefits would have to pay every cent of their income (and then some) for the medication, meaning that only those who are independently wealthy or who have an employed spouse with dependant health coverage can benefit from this new treatment.

Since something like 3/4 of marriages affected by chronic illness break up, and those of us who had a nest egg before we got sick have long since spent it trying to stay alive for years until we were finally approved for Disability benefits, you can figure out for yourself what a very small number of the million American CFS patients will actually be able to afford the pills.

Without a job, you can't get a second mortgage (assuming you still own a house, or that you have any equity left after years of living off it while waiting for your benefits).  No one is going to loan a disabled person money on the promise that you'll be back to work in 6 months -- they've heard that snake-oil-fueled promise too many times before.  If you don't have that spare $12,000 a year in cash to pay for the anti-viral pills, you may as well resign yourself to the fact that you are going to remain too sick to work even though a treatment has been found. 

As for me, I found a dollar and bought a Lotto ticket for this week.  Wish me luck!