ME/CFS... Breakthrough Physiological Tests

[Guest guest]

Quotes from below:

 

*....The Pacific Fatigue Labs results suggest that the Canadian Consensus

group is correct; during either the first or second exercise test a large

subset of patients demonstrates significant physiological abnormalities in

their

ability to produce energy. Another subset of patients does not. The Labs

findings suggest that these two groups should be separated in research

studies....*

 

*....Whether in Stockton, Stanford, Incline Village or Ithaca, New York they

see the same general pattern again and again, a unique metabolic dysfunction

that characterizes and objectifies the most mystifying symptom in the

disease, post exertional malaise.... *

 

~jvr

 

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Via: _CO-CURE_ (CO-CURE)

 

 

**Cracking the Foundations - The Pacific Fatigue Lab and Chronic fatigue

Syndrome (ME/CFS)**

 

Phoenix Rising: An ME/CFS/FM Newsletter (Jan 09) by Cort Johnson

_http://aboutmecfs.org/News/PRJan09Pacific.aspx_

(http://aboutmecfs.org/News/PRJan09Pacific.aspx)

 

Could a small lab in the Central Valley of California shake the CFS research

field with a quake of epic proportions? Change how the disease is viewed?

How its defined? Legitimize the disease once and for all? Its possible that

given enough resources the Pacific Fatigue Lab at the University of the

Pacific in Stockton, California may do all of these.

 

Run by three exercise physiologists, Dr. Christopher. Snell (Ph.D), Dr.

MarkVan Ness (Ph.D) and Staci Stevens (M.A.), a former grad student and now a

researcher with chronic fatigue syndrome (ME/CFS), the lab focuses on a very

basic and still very misunderstood aspect of CFS why patients have so much

trouble with exercise.

 

Staci Stevens, the founding Executive Director of the Pacific Fatigue Lab

explained. Many researchers look at ME/CFS patients when theyre at rest- at

baseline. But as any ME/CFS patient knows, the real problems occur when their

systems are under stress due to too much activity. Were taking a close look

the physiology of CFS patients as they undertake the most stressful activity of

all exercise.

 

Since oxygen plays a key role in energy production, exercise physiologists

use oxygen consumption during exercise to tell how much energy a persons body

is capable of producing. Having people pedal a stationary bicycle until they

can pedal no more tells researchers how much air their lungs can take in

(Ventilation Max) and therefore how much oxygen they use to produce energy

(VO2 Max) at their peak level of effort. Since oxygen plays a key role in the

energy production process this test effectively tells researchers how much

energy is being produced.

 

Given the fatigue and post-exertional problems often noted in ME/CFS one

would think aerobic exercise tests would have played a key role in

legitimizing

this disease, but instead theyve given rise to further skepticism. The

ability of many patients to pass them has added to confusion about a disease

characterized by the word fatigue. How could CFS patients be so fatigued if

theyre able to generate normal amounts of energy?

 

A New Approach

- The Pacific Fatigue Lab researchers realized, however, that while

researchers may have been asking the right questions they were asking them in

the

wrong way.

 

Many ME/CFS patients can, after all, get through a single workout or a

single day or single afternoon at work okay only to crash afterwords.

 

Until now, though, no ones taken a close look at the ME/CFS patients

ability to produce energy when theyre in a crash an odd oversight in a disease

whose symptoms are so tied to activity. (Indeed, study after study is showing

that many variables which test out normal or near normal when ME/CFS patients

are at rest are abnormal when their systems are put under stress).

 

With the Pacific Fatigue Lab doing a new exercise testing regime, two

exercise tests two days in a row and other tests (now known as the Stevens

Protocol) theyve given the post-exertional problems ME/CFS patients have

reported for

so many years a chance to show up and they have.

 

Their results are both profound and disturbing. About half of the ME/CFS

patients they've tested do, in fact, fail or significantly under perform in the

first single exercise test they cannot generate normal amounts of energy even

when theyre rested.

 

Its the rest of the patients that are so intriguing, though. When you give

these patients a second test a day later many of them will fail as well-- and

fail spectacularly.

 

The amount of impairment the Lab sees can be astonishing - some patients

suffer as much as a 50% drop in their ability to produce energy the next day.

 

Ms. Stevens spoke of a twenty-something man whose next day exercise tests

were worse that those of a normal 85 year old. In a hospital setting his

cardiopulmonary exercise profile would suggest he had heart failure.

 

Revolutionary Findings

- According to modern medical science this should'nt occur. For decades

researchers have shown that human beings, under virtually all conditions and

in

a variety of disease states, can take an exercise test to exhaustion,

recover and return the next day and score the same the next day.

 

It does*nt matter if she/he has heart failure or end-stage kidney disease

again and again researchers have shown that the human body even in extremely

poor health - has an amazing ability to quickly return to a baseline level of

energy. That is until now.

 

But its not just that chronic fatigue syndrome (ME/CFS) patients are failing

these tests, its also the unique way they*re failing them thats raising

eyebrows. Decades of research have shown if you a take a female of W age and

have her do X amount of exercise at Y heart rate she will exhibit Z levels of

oxygen consumption. Researchers have believed these algorithms are set in

stone but they're not holding up in chronic fatigue syndrome (ME/CFS) patients.

That they*re not suggests that something has gone awry in the basic

physiological processes the body uses to produce energy in this disease.

 

Even after 20 years in the field Staci Stevens excitement was palpable. The

implications of her findings are profound not just for ME/CFS patients but

for the field of exercise physiology. She said We are charting waters that have

never been charted before. Its an exciting time to be involved in CFS

research!

 

The labs findings are so unusual that their peers sometimes cant believe

what theyre hearing. Since decades of research have indicated theres no need

to

do repeat exercise tests, they are simply not done.

 

Until recently the Pacific Fatigue Lab may be the only lab in the world that

regularly does them. I asked Staci Stevens how her colleagues across the

country were reacting to this data were they excited? She said some of them

say,

Its just not possible, they think we must have imputed the data wrong but

others are enthralled. She said one colleague on the east coast whos doing the

tests said that after 30 years in the field, Id never seen anything like

this.

 

A Quick Road To Legitimacy?

- Their findings undermine long held beliefs not only about chronic fatigue

syndrome (ME/CFS) but about exercise physiology as well. Overturning

paradigms is not easy but the Pacific Fatigue Lab has an ace in the hole in

this

regard. Many ME/CFS researchers and patients have looked to the future for

technological breakthroughs that will legitimize the disease once and for all.

The new technologies coming to bear on ME/CFS are exciting but new technologies

take time, sometimes long periods of time, to be assimilated and accepted.

 

Theres nothing new, however, about the technology the Lab is using; in fact

its boringly well established.

 

The aerobic exercise tests they do form an essential part of every

cardiologists and pulmonologists tool kit. Once the Pacific Fatigue Labs test

results

are replicated and make it into the broader research community acceptance

should come relatively quickly. In fact if one were to chart the quickest road

to legitimacy for this disease it would very much look like the path the

Pacific Fatigue Lab has embarked on - charting gross abnormalities in well

accepted, well established tests. If the Pacific Fatigue Labs findings hold

up, the

news couldnt be better for chronic fatigue syndrome (ME/CFS) patients.

 

Redefining Chronic Fatigue Syndrome (ME/CFS)

- The Pacific Fatigue Labs results should also clarify one of the key

questions concerning the disease: whether researchers have been mixing apples

and

oranges in their studies. For decades researchers have worried that the

diseases vague definition allows people with different illnesses to

participate

in research studies. The most pressing question concerns whether

post-exertional malaise (PEM), which signifies dramatically worsening symptoms

after

physical or mental exertion, uniquely identifies this disorder or is simply one

symptom among many.

 

One side, lead by the producers of the Canadian Consensus Definition of

ME/CFS, believes that post-exertional malaise (PEM) is a hallmark symptom that

reflects unique physiological processes. They believe that allowing people

without this problem to participate in chronic fatigue syndrome (ME/CFS)

studies

may have greatly hampered efforts to understand this disease.

 

The other side, exemplified in the Center for Disease Controls (CDC)

empirical definition of 2005, believes that post-exertional malaise (PEM) is

one of

many symptoms present in the disease. They argue that the most important

feature of the disease is unexplained degrees of unwellness that interfere

significantly with peoples work, personal, social, etc. activities. They

believe

some different process is at work.

 

The Pacific Fatigue Labs results suggest that the Canadian Consensus group

is correct; during either the first or second exercise test a large subset of

patients demonstrates significant physiological abnormalities in their

ability to produce energy. Another subset of patients does not. The Labs

findings

suggest that these two groups should be separated in research studies.

 

Ms. Stevens could not say, however, how big the PEM subset is. The Lab has

derived most of its data from three groups of patients research subjects in

the test/ re-test studies, those attempting to get disability and

participants in the Ampligen trials. Many of the people they screen do exhibit

PEM on

the exercise tests but others do not. It will take statistically rigorous

studies to determine how prevalent the post-exertional malaise group is.

 

Demonstrating that this subset does exist and can be differentiated by

standard physiological tests would go a long way toward breaking up the CFS

label,

revamping the definition of the disease, focusing researchers in on key

abnormalities, and, of course, creating a new name.

 

Answering the subset question would be tremendously valuable but the Stevens

Protocol could also have an enormous impact on another very bread and butter

issue: disability.

 

A Comprehensive Disability Evaluation

- CDC studies indicate that the average annual financial costs of CFS

(@$25,000/year) impose an economic burden that many families cannot sustain for

long. Getting disability can be the difference between absolute poverty and at

least a minimum amount of financial comfort and medical attention. Without

clear diagnostic or functional tests, however, getting disability has been a

challenge.

 

 

-----------------------

 

To schedule a disability evaluation contact Staci Stevens at (209) 946-7649

or email: _sstevens_ (sstevens)

 

-----------------------

 

Chronic fatigue syndrome (ME/CFS) patients don*t win their disability cases

because they have ME/CFS, they win when they can demonstrate they cannot

function well enough to work.

 

Fortunately, measuring functioning is what the Pacific Fatigue Lab is all

about. The simplicity of the exercise tests is their grace; patients who cannot

produce sufficient amounts of energy cannot be expected to function its as

simple as that. Aerobic exercise tests have the added advantage of a long

history; they've been used to demonstrate disability in heart patients and

others for decades. The Stevens Protocol has the potential to produce a clarity

that has been strikingly missing in this arena.

 

The Pacific Fatigue Lab offers perhaps the most extensive disability

evaluation in the country. The exercise tests dont take long 8-10 minutes with

a

slow windup period. and they can have brutal after-effects but, if successful,

they are time well spent. (The Pacific Fatigue Lab will not allow severely

disabled patients or those with moderate to high cardiovascular risk to take

the tests. If the first test shows disability the next test is not needed).

 

Theyre not cheap, but even at $2,000 a pop, they present a good value for

those who can afford it. (Single exercise tests typically run from $800-$1200

at a hospital. Some insurance companies will reimburse for the testing

though billing insurance is the responsibility of the client).

 

The Stevens Protocol 8-12 minute aerobic exercise tests, resting pulmonary

function tests measuring lung function, bioelectrical impedance exams

measuring hydration, acoustic nasal rhinometry measuring sympathetic nervous

system

functioning, reaction time testing evaluating cognitive processing time, and

a seven page written evaluation. Not every patient who does the disability

evaluation gets a diagnosis of disabled, but for those who do it can be

financial lifesaver.

 

The Stevens Protocol has the potential to rewrite the disability rules for

ME/CFS. The CFIDS Association of America has already asked the Social Security

Administration to take them into account but they're behind the game; the

Fatigue Lab has already notched its first of several wins in the long term

disability field. In fact, their first win holds a place of honor in a frame on

the wall of their office.

 

Education

- With all the many ramifications of the Labs work, its the day to day

process of educating students about ME/CFS that may be the most fulfilling for

Staci. She, Dr. VanNess and Dr. Snell all incorporate their latest findings

into their classes; Here is a normal exercise stress test they say and here is

a

CFS patients test.

 

The students are enthralled and they should be; they are being exposed to

cutting edge data that the textbooks say shouldnt be happening. Its exciting

to be a young (or old) student on the cusp of research that has the

possibility of overturning accepted paradigms. Ms. Stevens laughed and said They

love

working with CFS patients. Theyre always asking to see the results on the

last patient.

 

When these students leave the University of the Pacific theyll be

ambassadors for this disease and spread the word about the unusual findings.

Currently

the PFL has four graduate students and a handful of undergraduates working

with them.

 

They also provide hope for a field that is not attracting many new faces. In

fact, the lack of young researchers may be the biggest long-term problem

the research field faces. The researchers that got engaged in the field when

it was new and not subject to so much controversy will be retiring in the not

so distant future. Ms. Stevens lamented the lack of young faces at the

Symposium on Viruses in CFS in Baltimore in May, 2008.

 

The chronic fatigue syndrome (ME/CFS) research world is catching onto the

implications of the Pacific Fatigue Labs work. A repeat exercise study by Ellie

Stein in Canada recently opened and one is reportedly underway in Europe.

Ms. Stevens readily acknowledged that replicating results has been difficult in

ME/CFS, but shes confident that their results will hold up. Shes done 1,000s

of single cardiopulmonary exercise tests on chronic fatigue syndrome

(ME/CFS) over the years and close to a hundred with the Stevens Protocol at the

Pacific Fatigue Lab.

 

Whether in Stockton, Stanford, Incline Village or Ithaca, New York they see

the same general pattern again and again, a unique metabolic dysfunction that

characterizes and objectifies the most mystifying symptom in the disease,

post exertional malaise.

 

(Research, education, treatmentdoes this sound familiar? Advocates have been

asking for the federal government to produce Centers of Excellence that

combine research, treatment and education. The Pacific Fatigue Lab is a COE in

miniature. )

 

Opportunity

- The Pacific Fatigue Lab is a remarkable accomplishment a testament to one

grad students persistence and a small coterie of advisors and mentors who

made her passion their own. University affiliated chronic fatigue syndrome

facilities are almost non-existent.

 

Aside from the Whittemore-Peterson Neuro-Immune Institute in Reno, Nevada

(which wont open its doors on the university campus for another two years)

there may be no other University sponsored Chronic Fatigue Syndrome lab in the

country. Special thanks must go to the Sport Sciences Department Chair Dr.

Christopher Snell and to the University of the Pacific for having the vision to

recognize the opportunity the Lab presents and backing it despite of the

controversy still surrounding this disease.

 

The opportunities the Lab presents for this disease are staggering. Yet the

contrast between the opportunity present and the resources available is a

little heartbreaking.

 

The Pacific Fatigue Lab is entirely volunteer run by three people who are

trying to analyze their data, get grants and publish on their off-time.

Somehow, theyve managed to create a beautiful lab but theyre still missing key

ingredients. Their papers have mostly been published in less well known

journals, they dont have a website to get the word out, and they dont have a

strong

funding base. Indeed the theme of overworked (and unpaid) researchers trying

to make do on a shoestring is a constant one in the ME/CFS research

community.

 

I asked Staci Stevens about doing heart rate variability (HRV) studies.

Given their ability to provide data on how the autonomic nervous system is

functioning which appears to be a key player in the disease HRV studies seem

like a

perfect fit for the lab.

 

She said Id love to do HRV but we don't have the funding. Staci noted that

this doesn't need to be rocket science. We could go a long way just by

focusing on some simple areas that the research community has basically

ignored One

gets the idea that there are many things the Pacific Fatigue Lab could do

to advance the science of ME/CFS if they just had a bit more money.

 

But theres only so much money and so much time in the day. The Pacific

Fatigue Lab has been able to produce what it has through two private grants

from

the CFIDS Association of America and from funds it gathers from doing its

comprehensive disability studies and firefighter fitness testing on the side.

 

Currently the Labs researchers are focused on analyzing the results from the

Stanford Montoya Valcyte study and the data from their latest repeat

exercise study plus a new study, all while they're teaching full loads.

 

 

The Next Level

- One wonders what these researchers could achieve if they had more time

and money to focus on a subject that theyre obviously so passionate about.

 

I asked Staci how much money would it take to move the Lab to next level?

She said For sixty thousand dollars we could hire a Ph.D in exercise

physiology to write grants, run the studies and write up the data. There are

plenty

of people who would love to get a job to do that. Hiring a full time clinical

testing supervisor who could take over the grunt work of data input would

allow them to focus more on the big picture. Monetarily speaking this is

chicken feed in the medical world; theyre not far at all from creating a lab

that could start turning out study after study.

 

Ms. Stevens was reluctant to delve into the thorny issue of federal

financing for CFS research but it was clear that she felt that whatever

semblance of

a spigot that had once been turned on has been mostly turned off. The loss

of the Cooperative Research Centers at the NIH in 2002 was a severe blow. The

Pacific Fatigue Labs efforts to get an NIH grant failed. When I asked if

the Centers for Disease Control had shown an interest in her work she said

Interest and funding are two different matters and they are struggling with

funding as well. One would think that somewhere in a community of 1,000,000

patients a way could be found to assist them in their work.

 

 

Advocacy

- When the federal system fails to assist people in need one must turn to

advocates to put pressure on the government. Ms. Stevens agreed that advocacy

was critical but noted that the problems with exhaustion chronic fatigue

syndrome (ME/CFS) patients faced made them ill-equipped for advocacy. Still

she

noted that when she served on the federal advisory committee for CFS (CFSAC)

they typically had less than 5 patients show up for the meetings and they

tended to be the same five patients - not a strong signal to the government to

move on these issues.

 

-----------------------

 

Having a University support an ME/CFS laboratory is a rare thing. In fact,

aside from the Whittemore-Peterson Institute there doesn't appear to be

another University laboratory devoted to ME/CFS in the U.S. The University of

the

Pacific deserves our heartfelt thanks for their leadership in this area. Let's

help out the PFL in their work. Please e-mail the people below and say Thank

You!

 

# Thomas W. Krise, Ph.D., Dean of the College of the Pacific: email:

_tkrise_ (tkrise)

 

# Edith Sparks, Ph.D., Senior Associate Dean: email: _esparks_

(esparks)

 

# Jin Gong, Ph.D., Dean of Graduate Studies: email: _jgong_

(jgong)

 

-----------------------

 

The Future

- The Pacific Fatigue Lab is creating a body of work that has the potential

to revolutionize the medical community’s understanding of this disease. The

possibilities are impressive; legitimize ME/CFS, rewrite the diseases

disability rules, create viable subsets, focus the attention of the research

community on the post-exertional period to determine how this disease is

defined

and guide both non-pharmacological and pharmacological treatment to improve

quality of life for patients.

 

How well it will be able to achieve these goals will in good part depend on

the resources it has and how well it can get the word out about its

findings. Indeed the Lab is still mostly a secret in the ME/CFS community. Ms.

Stevens said that as theyve been accumulating data and analyzing it that Weve

been kind of underground but she also felt it was about time for them to come

out. Chronic fatigue syndrome (ME/CFS) patients can only hope they come out

in a big way indeed.

 

 

----------------

 

 

Pacific Fatigue Lab at the University of the Pacific:

3601 Pacific Avenue, Stockton, CA 95211; (209)

946-7649. email: _sstevens_ (sstevens)

 

Contribute to the Pacific Fatigue Lab through the Workwell Foundation; a

non-profit foundation created by Staci Stevens to advance research into chronic

fatigue syndrome (ME/CFS). Phone: (209)599-7194. email:

_staci_ (staci)

 

 

 

 

~~~~~~~~~~

Send an Email for free membership

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>>>> 16 February 2009 <<<<

Editorship : j.van.roijen

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