Dr. Ken Friedman On Chronic Fatigue SYndrome (ME/CFS)Research: Roadblocks and opportunities
Dr. Ken Friedman has had experience at the research, federal and state
levels and is the father of a daughter with FM/CFS.
In this second part of a
three part Interview Dr. Ken Friedman digs deep into the question why
chronic fatigue syndrome funding at the federal level is so low and what
needs to be done to increase it. The Tom Hennessy Interview
A dynamic in-your-face advocate Tom Hennessy cut a wide swath in the late
1980's and 1990's as he demanded that the medical establishment
respond to the needs of ME/CFS patients. Originator of International CFIDS
Awareness Day and founder of RESCIND Tom's activities were curtailed were by
worsening illness. In this interview he talks about the heady days of the
past and the issues CFS patients confront today.
THE FEDS AND CHRONIC FATIGUE SYNDROME: A REPORT FROM THE FEDERAL ADVISORY COMMITTEE MEETING
At the CFS federal advisory committee (CFSAC) meetings we get to watch CFS professionals and advocates as they attempt to push, cajole, prod, etc. the federal government to take chronic fatigue syndrome (ME/CFS) seriously. We also get a fascinating shot at what the CDC and NIH are (and are not doing).Some of the issues discussed at the last meeting include:
● Why more women than men have chronic fatigue syndrome (ME/CFS).
● Which kind of community does CDC data suggest puts women at a higher risk of chronic fatigue syndrome (ME/CFS)?
● In what kinds of communities does CDC data suggest men are at a higher risk of chronic fatigue syndrome (ME/CFS) than women?
● Where do the short-term attention problems possibly originate?
● Does child abuse play a big role in chronic fatigue syndrome (ME/CFS)?
● Is there a hormone/female connection?
● How might the Surgeon General get involved in this disease?
Check out the overview of the last meeting.
The Centers For Disease Control and Chronic Fatigue Syndrome
The CDC's CFS research program is easily the most prominent in the world. For the first time in memory a senior CDC researcher has laid out his thoughts on CFS in a theory paper. In the February edition of Phoenix Rising we take a look at that paper and at the latest federal advisory committee meeting and try and figure where the biggest and most controversial CFS program on the planet is going.Check Out the CHAT!
I just did a chat on Prohealth's Chronic Fatigue Syndrome (ME/CFS)
monthly Question and Answer session. If anything we set a record for length, talking about everything from the latest hot research to how the stress response may impact ME/CFS patients to the immune findings, the CDC's new approach, the role the CAA plays, hope for the future, advocacy and more.
So check out the Chat, and while you're doing that, sign up for the newsletter!
A Chronic Fatigue Syndrome Patient Returns: The Martha Kilcoyne Interview
Ten years after she came down with chronic fatigue syndrome (ME/CFS) and
seven years after she recovered from it Martha Kilcoyne returned to
tell her story in her book "Defeat Chronic Fatigue Syndrome: You Don't Have to Live
With It." In this interview Martha talks about
the techniques she and her husband pioneered to beat ME/CFS, many
of which are becoming standard practice amongst forward thinking doctors.For a review of her book click here.
The Infection Connection: Dumbfounded in Dubbo!
No area in chronic fatigue syndrome (ME/CFS) has generated more interest or more controversy than the 'infection connection'. Since chronic fatigue syndrome is often triggered by an infection researchers first thought a chronic infection was surely involved. After most studies suggested that was the not the case they thought the disease must be a case of immune activation. After all, when the immune system is turned on to it produces symptoms very similar to those found in chronic fatigue syndrome. After studies of immune activation turned out to be inconclusive, an Australian researcher, Dr. Andrew Lloyd, came to the scene.He proposed the problem was the type of patients they were studying. If they restricted their studies to people who came down with ME/CFS after an infection they would likely get positive results.
That's exactly what Dr. Lloyd and the 'Dubbo team' have done. Over the past four years they've been examining people as they come down with CFS following an infection. Thus far they've rejected the chronic infection idea. Recently they looked at the activity of every gene in the body in an attempt to figure out what was going on...and the results dumbfounded them. For more on the infection connection in chronic fatigue syndrome read 'Dumbfounded in Dubbo' in the latest edition of Phoenix Rising, this sites chronic fatigue syndrome (ME/CFS) newsletter.
'The Pain Down There'
Chronic fatigue syndrome and fibromyalgia patients are not the only ones suffering from high levels of fatigue and pain. A subset of recovered cancer, multiple sclerosis and liver disease patients also suffer from CFS-like symptoms and the symptoms that irritable bowel syndrome and institial cytisus patients experience are very similar to those of fibromyalgia patients. Now vulvodynia - a condition characterized by searing or shooting pain in a women's vulva - is being called 'a kind of vulvar fibromyalgia'.Despite their inability to have intercourse, ride a bicycle or sometimes even sit without pain vulvodynia patients (like ME/CFS and FM patients) are commonly told there's nothing the matter with them. Some are in such pain that they've had to resort to narcotic painkillers to function at all. The condition is slowly revealing its secrets, however, and the findings are fascinating for FM and chronic fatigue syndrome (ME/CFS) patients.
One study suggests an unusual response to an infection plays a role; two genes that block inflammatory cytokines and respond to yeast/bacterial infections appears to be under functioning. That's double trouble; that means vulvodynia patients appear to have trouble mounting the right immune response to yeasts or bacteria and in turning off the inflammatory response once it occurs. Several researchers believe the later is exactly what's happening in chronic fatigue syndrome. Is vulvodynia really a genitala fibromyalgia? Only time will tell.
To find more about 'The Pain Down There' read a recent New York Times article and visit the NIH's vulvodynia website.
New Study Finds Increased Evidence of Infection in Chronic Fatigue Syndrome (ME/CFS) Patients
Many people get chronic fatigue syndrome (ME/CFS) or fibromyalgia after an infection but inconsistent test results have left researchers divided on whether an active infection is still present. Now longtime Michigan chronic fatigue syndrome (ME/CFS) researcher Dr. Lerner has evidence suggesting physicians may be using the wrong tests to look for an infection in some of their patients.Dr. Lerner reported that the most commonly used test for human cytomegaloviruses (HMCV) missed evidence of HMCV infection in a significant subset of ME/CFS patients. While a traditional test suggested only 1% of ME/CFS patients had an active HMCV infection a newer more sophisticated test using genomic recombinant technology suggested about 6% of all ME/CFS patients did. In contrast to traditional tests that look for proteins produced when a virus is reproducing the newer test looked for proteins produced early in HCMV's life cycle.
Dr. Lerner's theory is but one of several 'partial abortion' theories that have been proposed for chronic fatigue syndrome (ME/CFS). Dr. Glaser - now funded by the CFIDS Association of America - is looking at this issue with regards to Epstein-barr virus and Dr. Chia has proposed a somewhat similar theory regarding enteroviruses.
These theories suggest the immune systems of CFS patients are only partly effective at combating pathogens; that while they are able to stop viruses from replicating their inability to to kill them off completely leaves the pathogens still partially active - and pumping out proteins or antigens that the CFS patients immune systems are reacting negatively to. It is this immune reaction that is causing chronic fatigue syndrome. Look for a discussion of this paper in an upcoming newsletter.
Fibromyalgia and the New York Times: One Step Forward, Two Steps Back
Getting on the front page of the venerable New York Times constitutes a real breakthrough in visibility but the article FM sufferers woke to this week ('A Real Disease?") was not all good news. In its efforts to provide a 'for' and 'against' viewpoint the NYT's ended up leaving FM patients with a bad taste in their mouth as they saw one expert state, despite an enormous amount of evidence to the contrary, that they didn't have a real disease at all. After setting the discussion back at least fifteen years the NYT did at least give the National Fibromyalgia Association its say . You can read the original article by clicking here.The Phoenix Rising Research Group of the Year plus the Paper of the Year and the Top Ten!
2006 "The Year of Innovation", was a extraordinarily interesting year in
ME/Chronic Fatigue Syndrome as researchers again and again applied cutting edge
technology in their efforts to understand ME/CFS. These efforts resulted
important advances in gene expression, heredity, brain research, the search
for a biomarker and more. 2006 also produced the most clear cut (but surprising?)
winner of the Research Group of the Year award. Check these
papers out - they give one hope for the future.
●
The Phoenix Rising Research Group of the Year
● The Research Paper of the Year and the Top Ten
Interview with the CFIDS Association of America's New Scientific Director, Dr. Suzanne Vernon
The CFID's Association of America has embarked on a bold new course in the research arena. A complete revamp of their program culminated in early November with the hiring of their first Scientific Director, Dr. Suzanne Vernon. Dr Vernon was a pioneer in gene expression research and worked on the CDC's chronic fatigue syndrome research team for over 10 years. In this extensive interview she talks about her time at the CDC, about CFS research and her new job at the CFIDS Association of America.
Interview with Author and Vermont CFIDS Association Founder Rik Carlson
Rik Carlson grew up with the ideals of the sixties and busted his chops
in the
harsh reality of the small business world. In 1995 he came down with the flu, worked
through it and then was hit by an illness whose severity he could hardly
have imagined. Two years later his business was gone, he was on disability
and he had founded the Vermont CFIDS Association. After years of
effort he published an autobiography "We're Not in Kansas Anymore" in 2005.
In this interview we talk about his experiences with ME/Chronic
fatigue syndrome, his monumental
fights with the insurance industry, the support/advocacy group he founded and more.
Autonomic Nervous System Problems in ME/CFS and Fibromyalgia
The autonomic nervous system (
If you’re interested in this subject be sure to check
out the latest issue of the
Back to the Future? Enteroviruses Re-Emerge in ME/CFS
Several studies over the past year have re-stimulated
interest in the idea that an undiagnosed chronic infection is contributing
to ME/
The enteroviral connection is intriguingly given its
long history in ME/
Dr. Chia’s study provides
the strongest evidence yet that enteroviral infection is common in ME/
Whether Dr. Chia will get the money to do
more research is another matter as the NIH has recently turned away from
funding ME/
More Info: Check Out Dr. Chia's Presentation at the 2007 IACFS/ME Conference
Canadian Researcher Uncovers Three Distinct Fatigue States in Disease
CFS/ME patients have long noted that the kind of 'fatigue' they experience is hardly similar to the garden variety fatigue healthy people occasionally experience. Now a Canadian cancer researcher, Karin Olson, has presented evidence that different types of fatigue exist. When she took a close look at the fatigue in fatiguing diseases like cancer, CFS, depression, and overtraining syndrome she found three different types.
Tiredness is the type of fatigue most people experience. Tired people may not be happy and full of energy but they sleep well and aside from some forgetfulness they are able to function normally. Once they withdraw from whatever activity is causing their tiredness it quickly disappears; their stress response is intact.
Fatigued people, on the other hand, do not experience restful sleep and awaken often. They experience system overload with increased sensitivities to light, noise, sounds and odors. They wear out quickly, feel anxious and have difficulty concentrating. They think of ways to minimize their energy production and must cut back on their activities; their stress response is reeling but is still functional to some degree.
Exhausted people have erratic sleep; they can't sleep well at night and often sleep long periods during the day. Instead of having difficulty concentrating they experience downright confusion, sometimes being unable to carry out even simple tasks. Their level of stamina is essentially zero with even small amounts of activity overwhelming them. They feel an overwhelming need to lie down and say their bodies feel unfamiliar to them. Emotionally numbed they lack the mental energy needed to come up with energy saving strategies and have to withdraw from all social activities. Their stress response has been essentially obliterated - they can handle few of the 'stressors' found in everyday life.
The Next Step: Dr. Olson is next coming up with a screening tool designed to indicate when one is merely tired, had become fatigued or has entered into a state of exhaustion. Breaking CFS patients into fatigued and exhausted subsets could reveal interesting clues about the nature of CFS.
