Laughing and crying, you know it's the same release. Joni Mitchell

Laughing and crying, you know it's the same release. Joni Mitchell

Wednesday, April 20, 2011

Dr. David Bell Lectures on Chronic Fatigue Syndrome

Dr. David Bell at the Massachusetts
Department of Public Health's state laboratory
April 16, 2011

Dr. David S. Bell is one of the premier clinicians (retired) and researchers of chronic fatigue syndrome. He was the pediatrician in a small rural community in upstate New York during the "Lyndonville Outbreak" twenty-five years ago, and he has doggedly pursued treatment and research of CFIDS/CFS ever since. Dr. Bell was scheduled to present the latest research into XMRV, a retrovirus suspected of being linked to chronic fatigue, but he felt that the results were too preliminary and confusing. He said he was waiting for "someone smarter" than he to figure it out and had faith in the scientific community to do just that. Instead he reported on the twenty-five year follow up of his original patients in Lyndonville.

However, Dr. Bell did address XMRV during the question and answer period, so I'll present that first: One year ago in October, Dr. Judy Mikovits, Ph.D., director of research for the Whittemore Peterson Institute, published a paper linking XMRV to CFS. Dr. Bell continues to be involved in research regarding CFS even though he is retired from practice. He is currently working with Dr. Maureen Hanson at Cornell University to study Lyndonville patients in relation to XMRV. The results have not been published, but they presented the data from the research at the NIH conference in April.

Here is an excerpt from the CFIDS Association of America:
Research on XMRV in CFS continues at other institutions as well. An NIH grant was awarded in May 2010 to a group at Cornell University led by Dr. Maureen Hanson that will study patients who became ill in Lyndonville, New York in the mid-1980s as children. Dr. Hanson presented preliminary results of a pilot study at the 1st International XMRV Workshop and at a meeting of the FDA's Blood Products Advisory Committee in Dec. 2010. She found sequences of polytropic MLVs in 11 of 20 CFS patients tested, but only 1 of 10 healthy control subjects. 3 of the 11 positive results were obtained from patients who reported having recovered from CFS; the other 8 met Fukuda criteria for CFS. Dr. Hanson’s laboratory is the third independent group to report these sequences in samples from CFS patient and healthy controls, although these results have not yet been published.

"There is something going on here that has eluded detection all these years, but it's very important." ~ Dr. David Bell

The main issue with the results revolves around the "contamination theory" in which skeptics question whether or not the lab samples had been contaminated with mouse cells or if there is actually an infection in human DNA by a retrovirus that has crossed species lines. Dr. Bell called it a "daunting" subject and he has decided to wait until the "smart people figure it out." Because of the complexity of the issue he said, "We're not completely sure what we're looking for." He is convinced that something caused the illness because of what appeared to be a "cluster" even though the CDC claims that clusters don't exist. In his view, retroviruses make an ideal candidate for causing this illness. In fact, Dr. Bell started studying retroviruses in the 1990's but his research was abruptly cut off. It is known that retroviruses in animals can "recombine" and that may be what's happening in humans. If CFS is caused by a retrovirus, there are potential treatments that could improve the illness. The answers are far from a conclusion, but Dr. Bell thinks there will eventually be a resolution to the questions posed about the link between retroviruses and CFS.

Dr. Bell speaks to an attendee at his lecture
25 Year Follow-up in Chronic Fatigue Syndrome Rising Incapacity:
Dr. David S. Bell, MD, Clinical Assistant Professor, University of New York at Buffalo

The twenty-five year follow up of his original pediatric patients in Lyndonville was the meat of Dr. Bell's lecture. He called the results "worrisome" because of "rising incapacity" which means that symptoms are worsening over time. Also, it's difficult to determine who is "doing well" by coping with the illness and who is actually recovered.

History: In 1985 over 200 people, both adults and children, became ill in Lyndonville, NY, a small rural area between Buffalo and Rochester. It was not an obvious outbreak because the illness presented in different ways and was often misdiagnosed as MS or mono. Some were sick for three months with a complete recovery while others were sick for six months or longer. Dr. Bell conducted a 13-year follow up study of the children who were affected by the original outbreak. The patients fell into two groups: 80% were doing well and 20% were doing badly. The study has been quoted quite extensively and, Dr. Bell wishes he could take the study back because the results are misleading. Half of the 80% that were "doing well" were completely recovered and could stay out all night partying without post-exertional malaise or modifying their behavior the next day. The other half of the 80% "doing well" were leading normal lives but had to rest the next day after exercise or exertion. In other words they were "getting on with their lives" by coping with the symptoms of the illness.

How should recovery in CFS be defined? Is it a) absence of symptoms and return to normal levels of function or b) adaption to symptoms and abnormal levels of activity? The secondary question is: if "recovery" is adaptation and not symptom resolution, does this coping lead to confusion and false perceptions of health? Dr. Bell answered his own question with a resounding "YES!" He recalled patients who insisted they were fine even in the face of real health conditions because they had been told by so many doctors that there was nothing wrong with them. These patients stopped going to doctors or didn't tell their doctors that they have CFS because they didn't want to be told to go see a psychiatrist.

Health Identity Confusion is very common because:
  • patients look normal despite symptoms
  • the prevailing perception in society and in the medical profession is that CFS doesn't exist
  • "normal" lab tests
  • "no diagnosis" from specialty evaluations
  • no evolution into MS or cancer
 25 Year Follow-up (not same patients as 13-year follow up, but results are representative): Dr. Bell looked at three groups: a control group with no history of fatigue, a group with persistent CFS and a remitting group (functioning well but with persistent symptoms). He applied the following instruments to each group:
  • SF-36 (measures an illness' impact)
  • Symptom Severity Scale
  • Bell Ability Score
  • Activity hours
  • McGill Pain
  • Pittsburgh Sleep
  • Fisk Fatigue impact scale
Athough the remitting group characterized their health as good/very good, they had much lower scores than the control group. The group with chronic CFS had only 5 hours of upright activity a day, which was often an accumulation of 15 minute intervals of activity at a time. The control group had 15.25 hours of activity and the remitting group had 13 hours. The remitting group considered themselves "getting better" because of near normal activity levels which enabled them to go to school and to work, but they continued to have symptoms of fatigue, headaches, sleep disturbances, post-exertional malaise, cognitive issues, sore throats, etc.

Reinterpretation of the 13-year results after 25 years:

80% Doing Well
  • 1/2  with no symptoms and normal activity remained well but not as well as controls
  • 1/2 with on-going symptoms but near normal activity had steady, progressive increase in symptoms and reduction of activity
20% Continued illness
  • all disabled with increased disability
  • avoided health care

Is Oxidative Stress a Cause of CFS? Free radicals are destructive and considered a cause of aging. Patients with ME/CFS have high oxidative stress because they don't have the enzymes to cope with free radicals. The decline in Dr. Bell's patients after 25 years could be excessive oxidative stress compounded by aging. It is not known if anti-oxidants have an effect on relieving symptoms and should be intensively studied  to see if high doses of anti-oxidants get to the mitochondrial membrane.

In conclusion, if patients don't recover from CFS then they gradually get worse. Instead of hitting their prime at 40 years old, CFS patients are declining, which is worrisome. Dr. Bell's hope is that doctors will look at a wider perspective than just the "yuppie flu" or a few outbreaks.

Dr. David Bell's Books and Website:

Order Cellular Hypoxia and Neuro-immune Fatigue from Amazon or download his free e-book, Faces of CFS from his website.

Visit Dr. Bell's website and sign up for the Lyndonville News or read back-issues of the newsletter

Interesting website:  
Functional medicine is personalized medicine that deals with primary prevention and underlying causes instead of symptoms for serious chronic disease.

Dr. Bell's lecture was sponsored by The Massachusetts CFIDS/ME & FM Association and the Massachusetts Department of Public Health


  1. Thanks so much for posting this detailed summary on Bell's talk.

    But I was a little dismayed by your conclusion where you said that "if patients don't recover 100% then they gradually get worse."

    This contradicts the figures you mentioned earlier where approximately 40% (1/2 of the 80%) had no symptoms and normal activity and remained well -- but not as well as controls.

    They didn't recover "100%", but had no CFS symptoms, but weren't as well as controls.

  2. I forgot to add: Nevertheless, they didn't "gradually get worse".

  3. Thanks for your observation. I was actually paraphrasing what Dr. Bell said at the end of his talk. I think Dr. Bell's main concern was that patients still suffering the symptoms of CFS were worsening over time.

    I'll delete "100%" and leave it at "if patients don't recover then they gradually get worse."

  4. Having first been diagnosed with ME/CFS in 1989, I have been struggling to understand why I have "failed" to get better as most of the research (and medical staff I have spoken to) suggest that I should. Dr Bell has very helpfully identified those of us who appear to lead normal lives but are dealing with ongoing and worsening symptoms.

  5. Let's also NOT forget to say....
    that there IS still the possibility and HOPE that some of his long term patients that have tested XMRV+ may yet get some treatment that supresses the retrovirus just like Magic Johnson taking his HIV meds..

    Once that's not hampering your immune system, you stand a better chance of fighting off the other co-infections also.. so NEVER GIVE up Hope, OK>
    The answer is coming SOON I can feel it ♥

  6. You're so right - never give up hope! Dr. Bell pointed out that there are powerful drug companies that can profit from treating chronic fatigue patients if XMRV is proven to be linked to CFS, so they have a vested interest in finding the answers. It always helps to have companies with money to spend on research!

  7. I just read a brochure that mentioned some of Dr Bell's research on antioxidants and inflammation (that's how I happened across this page). If you are interested in eating a healthy, high antioxidant diet, you should know about this line of high antioxidant, healthy chocolate products: and
    It's definitely worth looking into and sharing with others.

  8. My acupuncturist recommended those chocolate products and gave me a free sample - delicious! Pretty pricey, though.