Dr. David Bell Talks - In Seattle

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Dr. Bell has not popped up (to my knowledge) much since he retired but he's giving a talk in Seattle in June

Dr. David Bell, noted researcher and clinician, will be speaking in Glaser Auditorium at the Swedish Medical Center, 747 Broadway, Seattle, WA at 2:00 p.m. on Saturday, June 6th. This presentation is titled "Chronic Fatigue Syndrome: What Doctors and Patients Should Know."

Dr Bell will address: (1) making an accurate diagnosis, (2) the nature of activity limitation in the disease, (3) how low blood volume contributes to the disease, including orthostatic intolerance, low cardiac output and increased venous resistance, (4) the nature of cognitive and neurological symptoms and (5) contributions of immune dysfunction.

Dr. Bell's expertise on chronic fatigue syndrome derives from extensive clinical practice and research. In addition to numerous medical articles on CFS, his related books include A Doctor's Guide to Chronic Fatigue Syndrome, The Disease of a Thousand Names, and Cellular Hypoxia and Neuro-Immune Fatigue.

Dr. Bell has served on the board of directors of the International Association of Chronic Fatigue Syndrome and was appointed chairperson of the Chronic Fatigue Syndrome Advisory Committee of the U.S. Department of Health and Human Services.

His address, sponsored by the Seattle CFS Support Group, is a free event and no registration is required. A question and answer opportunity will be included.
 

Mary Anne

Member
Dr. Bell's book 'The Doctor's Guide to CFS' was the most helpful book I read when I was first diagnosed. I wish I could travel. I would love to hear his presentation.
 

TigerLilea

Well-Known Member
The thing I remember about Dr. Bell's book was him stating that anyone who had CFS for five years or longer had no hope of ever getting better. Not what I wanted to hear then, or now. I felt that when so little is known about CFS, especially back then, that he was very irresponsible making that claim and leaving us with absolutely no hope for the future. :eek:
 

TigerLilea

Well-Known Member
and yet he was right, about me anyway. I'd rather have someone be honest than blow smoke up my ass.
We don't know though that there is no hope. I haven't given up on medical science finding the answers, and for all of us, not just the ones that have been sick for less than five years.
 

Who Me?

Well-Known Member
I haven't thrown in the towel. But after 20 plus years I don't think there will be anything soon enough that will make that much if a difference and by then I'll be too old and sick for it to matter.

If you're young and haven't been sick that long then fine. It's good to be hopeful. I prefer to be a realist. Then I'm not disappointed.
 

TigerLilea

Well-Known Member
I haven't thrown in the towel. But after 20 plus years I don't think there will be anything soon enough that will make that much if a difference and by then I'll be too old and sick for it to matter.

I prefer to be a realist. Then I'm not disappointed.
I like to think of myself as realistically optimistic! :)
 

Who Me?

Well-Known Member
I had a therapist years ago who said you have to know the difference between hopes and expectations.

I can hope something will happen in my life but I don't expect it.

If I expect nothing then I won't be disappointed when nothing happens. And if it does, great.
 
I had a therapist years ago who said you have to know the difference between hopes and expectations.

I can hope something will happen in my life but I don't expect it.

If I expect nothing then I won't be disappointed when nothing happens. And if it does, great.
Well hope is the ONLY thing that gives me a reason to get up in the morning. Without hope, I'd give in to the depression.

It is absolutely irresponsible to say that those sick for a duration longer than 5 years have no hope. It may be right or wrong, but irresponsible to make such a claim with no evidence.

Lipkin/Hornig found immune exhaustion to occur in patients sick for 3 years or more, suggesting there was still hope for those sick for less than 3 years to intervene and alter course of disease. Now they would have scientific backing to make a similar claim to the one Bell made and would be more acceptable.

But then you have other researchers, such as Fluge/Mella, Pridgen and even as far back as Goldstein who had patients I'll for durations of 20+ years and still managed to achieve remission.

What can you say about that?

Only that there is ALWAYS hope and one mustn't give up.
 

Who Me?

Well-Known Member
I'm not hopeless. If I was I wouldn't spend so much money on things to help myself. I wouldn't get up and get dressed every morning and keep plugging away. I just don't spend what little energy I have railing against the system and waiting for what could be years for someone to come up with something. I do what I can now and don't worry about 10 yrs from now.

I feel, and I said I not anyone else, that by the time something happens that could help me I'll be too old or already dead.

Flüge an Mella, IMO are in the infancy of their Rutuximab study. As far as I know only a handful of people have tried it, the results not all that positive and people are thinking it only works for certain subsets.

Goldstein never had one thing that specifically worked and in the 20+ years that I have been sick, although there are new treatments and theories, I'm still sick and getting worse. in spite of what I do.

The first Ampligen trials were over 20 years ago and look what happened to that?

I don't begrudge anyone their hope, that is just not how I operate so don't blast me all because we disagree.
 

Merry

Well-Known Member
Leela Play posted on Facebook Katrina Berne's notes on David Bell's talk in Seattle.

Dr Bell Seattle June 2015
June 14, 2015 at 9:30pm
Katrina has graciously shared her notes of Dr Bell's lecture.

David Bell, M.D.
June 6, 2015
Swedish Hospital, Seattle, WA
drdsbmd@gmail.com

Lyndonville, NY 1985: 202 became ill within a 2-year period in this small rural town
Dr Bell is retired from his medical practice and does speaking engagements and
consulting for SSDI cases
Please contact him if you know of places that might want him to lecture.

World Health Organization (WHO) uses the name ME.

Exertion Intolerance (the EI in SEID) – hallmark of this illness
exercise: increase of oxygen uptake; oxygen is used up crash
greater degree of EI indicates one's illness severity
evolution of chronic illnesses: CFS, FM, Lyme, chronic mono, FM, many others may
result from this process

Possible triggers:
1. Infection: post-infectious onset – maybe 75% of patients
2. neurologic injury, e.g., trauma
3. stress

Dubbo study – Australia
n = 101 patients with EBV mono
88 Ross River virus (RNA virus)
65 Q fever (rickettsial infection)
All were enrolled at the very beginning of illness.
94% of patients recovered.
after 1 year, 6% of each group met CFS criteria
conclusion: 6% of general population has underlying predisposition to
develop ME/CFS
Emotional and pre-morbid psychiatric status were NOT correlated with those who
became ill.

Infections that can initiate ME/CFS:
herpes mycoplasma
enterovirus parvovirus
hepatitis C Lyme disease
borreliosis others

Hepatitis C is treated with gamma interferon.
Gamma interferon can create the symptoms of ME/CFS.

IL-2 is used to treat cancer.
initiates symptoms suggestive of ME/CFS
cytokine response
getting over flu, other illness: cytokines decrease
ME/CFS: after initial infection, cytokine production continues

Mady Hornig studied 650 pts, measuring 51 immune factors including leptin.
Her findings suggest a hit and run virus.

"Fatigue is not present in CFS."
fatigue implies recovery
Inuits have 50 words for snow. We need better terms for what we call fatigue. The term fatigue is nonspecific.

OI: intolerance of being in an upright position
Decrease in blood flow to brain presyncope.
There is no test for blood flow to the brain.

POTS orthostatic hypotension
orthostatic narrowing of BP (difference between systolic and diastolic)
diastolic hypertension
delayed orthostatic hypotension

This test is "more accurate than tilt table test":
take blood pressure & pulse every 3-5 minutes
then stand upright and measure bp & pulse every 3-5 minutes
Pulse pressure decreases (difference between systolic & diastolic numbers at
40 minutes. "No patients are normal on this test."

SPECT scan slides
abnormal: decreased perfusion but changes from one time to the next
decreased blood flow in vertebral arteries doesn't show up on scans

Vasculopathy: something is wrong with blood vessels
reduced circulating blood volume*
reduced venous return to heart
reduced cardiac output
increased peripheral resistance
* reduced red blood cell mass
blood volume typically 80% of normal (normal = 5 liters; ME/CFS patients are "down one quart." Blood volume may be as low as 60% of normal in ME/CFS.
narrowing of blood vessels
hyperreactive in brain and gut [?}
heart, lungs, kidneys automatically get the most blood flow: . brain does not.
similar to septic shock, but chronic

IV saline helps but can decrease iron
If IV saline is given within 6 weeks of illness onset, Dr Bell thinks this can be reversed. After 6 months, it's irreversible.

Treatment Principles
1. comprehensive care
2. coping/packing – different for each patient
3. symptom discrimination: which Sx are most important to treat
4. sleep hygiene/sleep meds
5. "learn the tricks" of managing the illness

"Don't feel sorry for yourself."
sign in Dr. Bell's waiting room "Whining is permitted for 10 minutes only."

Problem with doctor visits: Patients don't get across to doctor how limited they are. Normal: 12 hours of activity per day
ME/CFS: far lower number of hours

Mitochondrial Energy Production
mitochondria convert oxygen to ATP
exercise: aerobic metabolism (good functioning) quickly converts to anaerobic
metabolism (not functioning well)
Staci Stevens' work: pts reached anaerobic threshold significantly sooner on day 2
of treadmill test – very significant
This is unheard of in normals or those with other illnesses.

The key to understanding this illness:
What causes PEM? Probably mitochondrial deficit. Reversal after rest.
Mitochondrial oxygen maintains aerobic metabolism

Treatment of sleep disorder: 20 mg melatonin 1 hour before bedtime to initiate sleep.
Melatonin can be used along with benzodiazepines or ambien.
Benzos are not addicting in ME/CFS.
occasional Benadryl (diphenhydramine) is okay.

Increased oxygen uptake
excess free radicals (SOD, catalase, glutathione
impaired mitochondrial function
impaired immune response
vasoconstriction/vasculopathy; orthostatic intolerance,
pre-syncope, pain, poor sleep

Q&A
There is abnormal release of oxygen from red blood cells.

Cognitive impairment is caused by OI, not loss of brain cells.
White punctate lesions often found on MRI may be meaningless.

Treatment of low blood volume
fludracortisone – somewhat effective
increase salt
increasing fluids not helpful
IV saline can be helpful but few docs will prescribe it.

Chronic pain differs among patients.

LDN can be helpful.

Fecal implants will be studied in the Ithaca studies.

Rituximab looks promising. Some very sick patients responded dramatically in initial study. Follow-up study is underway.

Pain may be related to reduced blood flow.

Mast trousers (body suit that is inflated, used in military) help circulate blood.

Mold allergy (as well as other allergies) increase cytokines and worsen OI. So does sensitivity to "dirty electricity."

Big overlap between Ehlers Danlos Syndrome (EDS) and ME/CFS. ~17% of ME/CFS pts have EDS as opposed to 4-5% of the general population. The problem is elasticity of tissues surrounding blood vessels.
 

JennyJenny

Well-Known Member
"Fatigue is not present in CFS."
fatigue implies recovery
Inuits have 50 words for snow. We need better terms for what we call fatigue. The term fatigue is nonspecific.
I have to say, I really like this quote. Did Mady Hornig state this? I want to quote it and put her name next to it or whomever it should be attributed to.
 

JennyJenny

Well-Known Member
Fecal implants will be studied in the Ithaca studies.
Are these being done by Dr. Lipkin or Dr. Hornig? Do you know where I can find more information on them. I am checking Columbia's site and articles on them now but if you know could you please steer me in the right direction.

Thanks.
 

JennyJenny

Well-Known Member
I don't begrudge anyone their hope, that is just not how I operate so don't blast me all because we disagree.
I have had Fibro for 40 years and ME/CFS for over 35. I do believe it is too late for me and any treatment would give me maybe 5-10% better (which I would take) but it won't bring me to an 80-90% functioning again. It has been too long and I think what has happened is my body and its functions and the cardiovascular system and so on is too degraded to come back.

I think about Lupus, ALS, MS, Lyme and so many other diseases that have been funded and researchers working on for years and are basically nowhere so I really don't put much faith in treatments let alone a cure coming along.

I do believe they could, if funded, have a blood test in 2 years just as Dr. Hornig has stated and then people could get some sort of treatment plan within those first crucial weeks or months.

Maybe all they will be able to tell them right now is decrease your work/schooling/physical output and maybe stop all together for a time and saline IV's but that is more than no treatment or wrong treatments do to none or wrong diagnosis.
 

Laura

New Member
Dr. Bell was my doctor for many years. He was/is very passionate about treating CFS/ME and a compassionate person. He told me that since I had been sick so long my chances of full remission or cure were low. Then he offered me many treatments over the years to improve my symptoms and quality of life as much as possible. I got better but have a long way to go. Who knows, maybe I will get tons better. I don't hold my breath waiting, but am hopeful each time I try a new treatment. Even something that helps e.g. 20-30% would-be huge for me.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Leela Play posted on Facebook Katrina Berne's notes on David Bell's talk in Seattle.

Dr Bell Seattle June 2015
June 14, 2015 at 9:30pm
Katrina has graciously shared her notes of Dr Bell's lecture.

David Bell, M.D.
June 6, 2015
Swedish Hospital, Seattle, WA
drdsbmd@gmail.com

Lyndonville, NY 1985: 202 became ill within a 2-year period in this small rural town
Dr Bell is retired from his medical practice and does speaking engagements and
consulting for SSDI cases
Please contact him if you know of places that might want him to lecture.

World Health Organization (WHO) uses the name ME.

Exertion Intolerance (the EI in SEID) – hallmark of this illness
exercise: increase of oxygen uptake; oxygen is used up crash
greater degree of EI indicates one's illness severity
evolution of chronic illnesses: CFS, FM, Lyme, chronic mono, FM, many others may
result from this process

Possible triggers:
1. Infection: post-infectious onset – maybe 75% of patients
2. neurologic injury, e.g., trauma
3. stress

Dubbo study – Australia
n = 101 patients with EBV mono
88 Ross River virus (RNA virus)
65 Q fever (rickettsial infection)
All were enrolled at the very beginning of illness.
94% of patients recovered.
after 1 year, 6% of each group met CFS criteria
conclusion: 6% of general population has underlying predisposition to
develop ME/CFS
Emotional and pre-morbid psychiatric status were NOT correlated with those who
became ill.

Infections that can initiate ME/CFS:
herpes mycoplasma
enterovirus parvovirus
hepatitis C Lyme disease
borreliosis others

Hepatitis C is treated with gamma interferon.
Gamma interferon can create the symptoms of ME/CFS.

IL-2 is used to treat cancer.
initiates symptoms suggestive of ME/CFS
cytokine response
getting over flu, other illness: cytokines decrease
ME/CFS: after initial infection, cytokine production continues

Mady Hornig studied 650 pts, measuring 51 immune factors including leptin.
Her findings suggest a hit and run virus.

"Fatigue is not present in CFS."
fatigue implies recovery
Inuits have 50 words for snow. We need better terms for what we call fatigue. The term fatigue is nonspecific.

OI: intolerance of being in an upright position
Decrease in blood flow to brain presyncope.
There is no test for blood flow to the brain.

POTS orthostatic hypotension
orthostatic narrowing of BP (difference between systolic and diastolic)
diastolic hypertension
delayed orthostatic hypotension

This test is "more accurate than tilt table test":
take blood pressure & pulse every 3-5 minutes
then stand upright and measure bp & pulse every 3-5 minutes
Pulse pressure decreases (difference between systolic & diastolic numbers at
40 minutes. "No patients are normal on this test."

SPECT scan slides
abnormal: decreased perfusion but changes from one time to the next
decreased blood flow in vertebral arteries doesn't show up on scans

Vasculopathy: something is wrong with blood vessels
reduced circulating blood volume*
reduced venous return to heart
reduced cardiac output
increased peripheral resistance
* reduced red blood cell mass
blood volume typically 80% of normal (normal = 5 liters; ME/CFS patients are "down one quart." Blood volume may be as low as 60% of normal in ME/CFS.
narrowing of blood vessels
hyperreactive in brain and gut [?}
heart, lungs, kidneys automatically get the most blood flow: . brain does not.
similar to septic shock, but chronic

IV saline helps but can decrease iron
If IV saline is given within 6 weeks of illness onset, Dr Bell thinks this can be reversed. After 6 months, it's irreversible.

Treatment Principles
1. comprehensive care
2. coping/packing – different for each patient
3. symptom discrimination: which Sx are most important to treat
4. sleep hygiene/sleep meds
5. "learn the tricks" of managing the illness

"Don't feel sorry for yourself."
sign in Dr. Bell's waiting room "Whining is permitted for 10 minutes only."

Problem with doctor visits: Patients don't get across to doctor how limited they are. Normal: 12 hours of activity per day
ME/CFS: far lower number of hours

Mitochondrial Energy Production
mitochondria convert oxygen to ATP
exercise: aerobic metabolism (good functioning) quickly converts to anaerobic
metabolism (not functioning well)
Staci Stevens' work: pts reached anaerobic threshold significantly sooner on day 2
of treadmill test – very significant
This is unheard of in normals or those with other illnesses.

The key to understanding this illness:
What causes PEM? Probably mitochondrial deficit. Reversal after rest.
Mitochondrial oxygen maintains aerobic metabolism

Treatment of sleep disorder: 20 mg melatonin 1 hour before bedtime to initiate sleep.
Melatonin can be used along with benzodiazepines or ambien.
Benzos are not addicting in ME/CFS.
occasional Benadryl (diphenhydramine) is okay.

Increased oxygen uptake
excess free radicals (SOD, catalase, glutathione
impaired mitochondrial function
impaired immune response
vasoconstriction/vasculopathy; orthostatic intolerance,
pre-syncope, pain, poor sleep

Q&A
There is abnormal release of oxygen from red blood cells.

Cognitive impairment is caused by OI, not loss of brain cells.
White punctate lesions often found on MRI may be meaningless.

Treatment of low blood volume
fludracortisone – somewhat effective
increase salt
increasing fluids not helpful
IV saline can be helpful but few docs will prescribe it.

Chronic pain differs among patients.

LDN can be helpful.

Fecal implants will be studied in the Ithaca studies.

Rituximab looks promising. Some very sick patients responded dramatically in initial study. Follow-up study is underway.

Pain may be related to reduced blood flow.

Mast trousers (body suit that is inflated, used in military) help circulate blood.

Mold allergy (as well as other allergies) increase cytokines and worsen OI. So does sensitivity to "dirty electricity."

Big overlap between Ehlers Danlos Syndrome (EDS) and ME/CFS. ~17% of ME/CFS pts have EDS as opposed to 4-5% of the general population. The problem is elasticity of tissues surrounding blood vessels.
What a great lecture! He's still so engaged...that's great.

He's really focused on the blood vessels - that makes sense to me. Check out the Fluge and Mella patent - http://www.cortjohnson.org/forums/threads/fluge-mella-take-out-patent-on-nitric-oxide-treatment-for-me-cfs.2829/

They are all about that as well.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Dr. Bell was my doctor for many years. He was/is very passionate about treating CFS/ME and a compassionate person. He told me that since I had been sick so long my chances of full remission or cure were low. Then he offered me many treatments over the years to improve my symptoms and quality of life as much as possible. I got better but have a long way to go. Who knows, maybe I will get tons better. I don't hold my breath waiting, but am hopeful each time I try a new treatment. Even something that helps e.g. 20-30% would-be huge for me.
Twenty to thirty percent is huge for quality of life. Good luck!
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Are these being done by Dr. Lipkin or Dr. Hornig? Do you know where I can find more information on them. I am checking Columbia's site and articles on them now but if you know could you please steer me in the right direction

Thanks.
I didn't know they had gotten to that stage; if so - that's great. I think Ithaca is Hanson though.


" Many individuals with ME/CFS describe digestive disturbances. These symptoms might result from altered composition of the gut microbiome, as is known in intestinal inflammatory diseases. We are currently characterizing the gut bacterial microbiome in a cohort of ME/CFS patients vs. healthy controls, using 16S rRNA sequencing with an Illumina MiSeq. We are determining the bacterial diversity within and between groups as well as the taxonomic composition of individuals and of the two populations. These studies are in collaboration with Dr. Ruth Ley (Cornell Dept. of Microbiology/Molecular Biology and Genetics) and Dr. Susan Levine (Manhattan, NY)."
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I have had Fibro for 40 years and ME/CFS for over 35. I do believe it is too late for me and any treatment would give me maybe 5-10% better (which I would take) but it won't bring me to an 80-90% functioning again. It has been too long and I think what has happened is my body and its functions and the cardiovascular system and so on is too degraded to come back.

I think about Lupus, ALS, MS, Lyme and so many other diseases that have been funded and researchers working on for years and are basically nowhere so I really don't put much faith in treatments let alone a cure coming along.

I do believe they could, if funded, have a blood test in 2 years just as Dr. Hornig has stated and then people could get some sort of treatment plan within those first crucial weeks or months.

Maybe all they will be able to tell them right now is decrease your work/schooling/physical output and maybe stop all together for a time and saline IV's but that is more than no treatment or wrong treatments do to none or wrong diagnosis.
We shall see!

It's just a guess but I'll bet your body could repair significantly if the right treatment was found. it is a long time but some of the Fluge/Mella patients were in horrible shape prior to Rituximab. They were the lucky ones, for sure..but check out this link about one of the patients in the original study..
I imagine most of us would be happy with 50% increase....That would be something.
 

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