This information was posted on a political discussion group and is reposted here with permission.
'Would you say that dr cheney is working with m.e. clients/illness and knows it, or something else?"
I think your question also brings up a wider issue which all people with ME have to grapple with (and which we've discussed before in this group): what attitude should we take to the 'CFS' world?
'Would you say that dr cheney is working with m.e. clients/illness and knows it, or something else?"
Short answer: my view is that Dr. Cheney is a good man, a good doctor and a good researcher. However, he does not address ME, but talks about 'CFS' or 'CFIDS' (from here on I'll just say 'CFS' as shorthand for that & 'CFIDS'.) Does this invalidate his work for us? I would say that we should neither wholly accept nor wholly reject Cheney's work, but rather look at it carefully, and make use of what applies to us. It would be so much better if we could trust Cheney unreservedly, if he did study and discuss ME - but we can't. Nonetheless, he has a lot to offer, and I feel we can't afford to throw the baby out with the bathwater.
Longer answer: (apologies if you know all this - I'll give the history in case it's useful.) There were outbreaks of the illness we call ME in the US in the 80s. US doctors didn't know what to make of these outbreaks. A particularly severe outbreak occurred in Incline Village on Lake Tahoe in Nevada, where Dr. Daniel Peterson was a local family doctor. Dr. Paul Cheney joined Peterson's practice, and together they tried to understand and treat their seriously ill patients.
Dr. Peterson was aware that this was something important, and called in the authorities. The Center for Disease Control (CDC) sent researchers to Incline Village. At first they said there was no serious illness. Later, in response to growing evidence of serious illness in Incline and in other locations around the US (e.g. Lydonville, upstate New York), the CDC established a committee to identify this illness.
In 1988 the CDC committee, headed by Gary Holmes, named the illness 'Chronic Fatigue Syndrome' and issued a definition (the 1988 CDC
Holmes definition of CFS). Even though this was the decision of the committee, and has defined the illness in the US and around the world ever since, it was controversial at the time. Two committee members, Parrish and Shelokov, recognised the illness as ME and fought for the illness to be identified as such. They were overruled, and walked out of the committee in protest.
So the CDC naming of 'CFS' originally defined a patient group in Incline village. Peterson and Cheney were the doctors caring these patients at the time. The fact that the name and definition that the Holmes Committe came up with were controversial, and that some committee members said that the illness was the same as the illness already known in the UK and Australia as ME, was known to Peterson and Cheney.
[It should also be noted that none of the CFS definitions ever defined M.E. They were none of them M.E. definition in any way.].
To answer your question, is Cheney 'working with m.e. clients/illness and knows it, or something else?,' I would say that at the time when
'CFS' was defined in relation to Peterson & Cheney's patients, the illness was ME. Did Cheney know it? Well, Cheney (and Peterson) certainly knew that some experts (Parrish, Shelokov, and also Hyde) identified the illness as ME.
However, my impression is that Peterson and Cheney chose not to engage with the vexed question of name and definition. They were not politicians or primarily researchers (though Cheney has since done much research), but practising doctors. My impression is that they tried to survive the storm of controversy and appalling persecution that surrounded the issue, and continued trying to understand the illness and treat their patients.
So Peterson and Cheney called the illness 'CFS' as is official policy in the US. More recently they call it 'CFIDS.'
I wish it were otherwise. I really wish that P & C had decided to follow Parrish, Shelokov & Hyde and call the illness ME etc. - but they didn't.
However, I'm not saying that Peterson & Cheney showed cowardice on this issue - I think they were both very brave, and stood up for their patients against ghastly abuse, and suffered the consequences. For their support of patients, and for taking the illness seriously, they were persecuted on many levels. Cheney had to leave Incline to protect himself and his family, and moved to the other side of the US. He suffered a heart attack, I believe largely attributable to the stress he endured.
So that's the history part, the fact that 'CFS' was defined in relation to P & C's patients, and that they knew that other experts called the illness ME - but nonetheless they followed the official line and called the illness 'CFS.'
As for the current situation, my belief is that Cheney does work with many ME patients. My belief is that he recognises the illness (issue
of name apart) and treats it accordingly. However, the trouble is that probably not all of his patients have ME, and he doesn't clearly distinguish between the ME patients and those who have fatigue illnesses. Arrrgggghhh! So near and yet so far!
So what are MEites to do with Cheney? As I said above, my approach is to read what he writes with interest but also with caution. My guess would be that many/most(?) of his patients have ME - but not all, and there's the rub. It means that we can't trust that everything he said applies to us.
But at the same time, he does some great research, which I feel can be of use to us. I think he's the best doctor/researcher on the way the illness affects heart function. Also good on immune function, and recently interesting work on cell signaling factor.
Your question about Cheney raisees the general issue, what attitude should MEites take to the CFS world? This applies to us when trying to understand the illness, as patients seeking treatment, and as advocates trying to change the medical/political situation.
It seems tempting to be ME separatists, and have nothing to do with 'CFS' at all (apart from criticising the concept). The trouble is that the ME world is so small and the 'CFS' world is so big. Much of what we need is in the 'CFS' world. For example, most of us will never meet an ME doctor and will have to deal with doctors who believe we have 'CFS' (we can try to educate them - but we may or may not succeed). Many of us have to accept an inaccurate diagnosis for the purpose of qualifying for welfare or insurance benefits. Similarly, there has been almost no ME science since 1988 (when 'CFS' was defined), so if we want to look at research that might be relevant, we have to look at 'CFS' research.
My personal answer is to try to be as clear as possible that ME is not 'CFS' or 'CFIDS' or 'PVCFS' etc. I try to be clear about this when communicating with others. I try to spread the word. When dealing with doctors I try to be clear about this also, but accept that I will not always succeed in changing a doctor's view, and may have to accept care from a doctor whose views are wrong. For this reason, I feel that we have to be selective about which parts of our doctors' advice we trust, if we know our doctors don't understand ME.
In terms of research, I want to be able to take from the 'CFS' world what seems relevant to ME. It's not ideal. It's often difficult to judge what does and doesn't apply to ME.
So, to return to the question of Cheney, I feel that he's one of many doctors/researchers whose work is important and certainly worth considering. Much of it is great. Some of it doesn't apply to us. Sometimes these people blur the issues and make misleading statements.
Another name that comes to mind in this context is Dr. Sarah Myhill - much of her work is great and she has some useful advice. I like many things about her approach, e.g. her focus on mitochondrial dysfunction. But MEites have to be selective, and remain aware that she's a 'CFS' doctor, and some of what she says is not right for ME.
If only the world was black and white. It seems to be a nastly shade of grey.
Lesley Ben, M.E. patient and advocate
Before reading this research/advocacy information given in the links below, please be aware of the following facts: 2. The research referred to on this website varies considerably in quality. Some is of a high scientific standard and relates wholly to M.E. and uses the correct terminology. Other studies are included which may only have partial or minor possible relevance to M.E., use unscientific terms/concepts such as ‘CFS,’ ‘ME/CFS,’ ‘CFS/ME,’ ‘CFIDS’ or Myalgic ‘Encephalopathy’ and also include a significant amount of misinformation. Before reading this research it is also essential that the reader be aware of the most commonly used ‘CFS’ propaganda, as explained in A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy and in more detail in Putting research and articles on Myalgic Encephalomyelitis into context. Unfortunately the author featured on this page (Dr Cheney) mixes together many of the facts of M.E. and 'CFS' and uses the terminology incorrectly. It is important that readers are aware that the HFME not only does not support referring to M.E. as 'CFS' or 'CFIDS' or the mixing of facts relating to M.E. and 'CFS' etc. but is in fact actively involved in campaigning against such problematic concepts, for the benefit of all patient groups involved.
1. Myalgic Encephalomyelitis and ‘Chronic Fatigue Syndrome’ are not synonymous terms. The overwhelming majority of research on ‘CFS’ or ‘CFIDS’ or ‘ME/CFS’ or ‘CFS/ME’ or ‘ICD-CFS’ does not involve M.E. patients and is not relevant in any way to M.E. patients. If the M.E. community were to reject all ‘CFS’ labelled research as ‘only relating to ‘CFS’ patients’ (including research which describes those abnormalities/characteristics unique to M.E. patients), however, this would seem to support the myth that ‘CFS’ is just a ‘watered down’ definition of M.E. and that M.E. and ‘CFS’ are virtually the same thing and share many characteristics.
A very small number of ‘CFS’ studies refer in part to people with M.E. but it may not always be clear which parts refer to M.E. The A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy paper is recommended reading and includes a checklist to help readers assess the relevance of individual ‘CFS’ studies to M.E. (if any) and explains some of the problems with this heterogeneous and skewed research.
In future, it is essential that M.E. research again be conducted using only M.E. defined patients and using only the term M.E. The bogus, financially-motivated disease category of ‘CFS’ must be abandoned.
2. The research referred to on this website varies considerably in quality. Some is of a high scientific standard and relates wholly to M.E. and uses the correct terminology. Other studies are included which may only have partial or minor possible relevance to M.E., use unscientific terms/concepts such as ‘CFS,’ ‘ME/CFS,’ ‘CFS/ME,’ ‘CFIDS’ or Myalgic ‘Encephalopathy’ and also include a significant amount of misinformation. Before reading this research it is also essential that the reader be aware of the most commonly used ‘CFS’ propaganda, as explained in A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy and in more detail in Putting research and articles on Myalgic Encephalomyelitis into context.
Unfortunately the author featured on this page (Dr Cheney) mixes together many of the facts of M.E. and 'CFS' and uses the terminology incorrectly.
It is important that readers are aware that the HFME not only does not support referring to M.E. as 'CFS' or 'CFIDS' or the mixing of facts relating to M.E. and 'CFS' etc. but is in fact actively involved in campaigning against such problematic concepts, for the benefit of all patient groups involved.
New Cheney video available
The new Cheney DVD is now available in both NTSC format (USA, Canada, etc.) and PAL format (UK, Europe, Australia, etc).
Those in the US and Canada, order the two "purple" discs. All others, I think either format will work for you but the "blue" discs are in PAL.
There are two discs, but they must be ordered separately (but as part of the same order so there is just one shipping charge, if that makes sense). Orders within the US should total $17 for both discs, and orders outside the US are $20.
If the link below does not work, try cutting and pasting it into your browser and make sure there are no spaces or asterisks. http://kunaki.com/MSales.asp?PublisherId=119572
Topics covered in the April 25th seminar Dr. Cheney presented in Fairfax, VA:
DISC ONE (1:17)
case definition; symptom triad; neuropsych phenomena; symptoms vs
dynamic dysfunction; four phases of CFS; key scientific literature; four
phases graph; recovery phase graph; exercise and oxygen consumption;
lactic acid and anxiety disorders; magnetic resonance spectroscopy;
fingerprint loss; RNase-L; HHV6 A&B
symptoms; cardiac output; stoke volume; difference in FM and CFS on
echo; venous blood gas; two types of heart failure – systolic vs
diastolic; how to diagnose diastolic dysfunction on echo; E/A issues;
tissue doppler; D/S ratio; left atrial collapse; Orthostatic
Intolerance; Echo Case / Control Study; summary of diastolic parameters
in CFS; what to tell a cardiologist; other echo parameters
* Oxygen & CFS
Everest III study; IVRT as energy;
* Oxygen Toxicity
PFO’s, migraines, strokes; oxygen toxicity controls treatment outcomes;
conclusion of concepts; fetal physiology; key enzymes SOD, CAT, GPX;
* Emerging Hypothesis
left shifted on oxyhemoglobin disassociation curve; pulse oximetry and
desaturation; oxygen metabolism and toxicity
* Four Adaptations to Oxygen Toxicity
HPA axis, cortisol (push/crash); methylation block (brain, sleep); P450
(EI); microcirculatory left shift (fatigue); glucose metabolism; P450
decoupling; methylation block – neuropsych issues, sleep, gene regulation
DISC TWO (1:27)
symptoms; etiology (pathogen, biotoxin, genes, etc)
*Oxygen Toxicity as Control Point
oxygen toxicity generators; energy conundrum; P450 system; NADPH;
anabolically blocked; superoxide; Environmental Illness (EI); enzymes
CAT, GPx, SOD
*Cell Signaling Factor (CSF) Therapy
heart organ use in history; messages to stem cells; phenotypic shift;
*Echo Terrain Maps (ETM)
substances tested on echo (typical results given) - oxygen (neg/bad),
heart CSF (pos/good), porcine liver (neg), adrenal (neg), thymus (neg),
pancreas (pos except in diabetes and insulin resistance), liver + oxygen
(neg); echo terrain maps (ETM’s); ETM’s show response to therapy; ETM’s
of CFS cures; ETM’s of controls; testing other treatments on echo –
fructose (neg), glucose (pos), Methyl B-12 plus Folate (neg),
glutathione (neg in most), Provigil (neg), T3 (neg), Vit D3 (neg), CoQ10
(neg in most, but Idebenone always pos); [Methyl B-12 alone (neg)]
* Metabolome / Humans as Symbiotes
Metabolome; gut bacteria as powerful symbiote and influence on health
*Redox and Artesunate
energy and redox; viral replication and redox; Artesunate – “most
powerful drug”, shifts redox, inhibits NF kappaB, antiviral; Artesunate
wipes out oxygen toxicity on echo; DHEA; Inosine [Inosine has replaced
*Treatment Protocol & Stem Cells
treatment protocol; effectiveness of protocol; stem cell therapy
[most answers given below have exceptions]
repair a PFO (no); Klonopin (yes); Doxepin (yes); Neurontin (no); Rich
V.K. and methylation and glutathione; pancreas CSF, glucose, and
diabetes; CFS and MCS relationship; use of oxygen in surgery; supplement
NADPH, D-Ribose (no!); location & contact info for stem cell clinics;
[believes you must shift phenotype with CSF’s before receiving stem
cells, or new genetic code from stem cells will eventually be corrupted
and illness will return]
Please feel free to repost this info.
All the best,
[Note that this page features a summary of this new talk, BUT also a large amount of poor quality 'CFS' misinformation.
Note too that Chney now has how own website: www.cheneyclinic.com ]
*CFS and Stem Cells: A Warning* by Carol Sieverling
Paul Cheney, MD, PhD has accompanied two groups of CFS/ME patients to stem cells clinics in Costa Rica and Panama this year, and many more will be going to Panama this fall. The stem cells come from the afterbirth (placenta and umbilical cord) of healthy new born infants and are thus considered adult stem cells, not fetal. Future patients will also be given their own stem cells derived from belly fat in addition to the afterbirth stem cells.
Though it's early yet to know the full benefit of the stem cell transfusions or how long such benefits will last, initial results range from good to spectacular. This has prompted several CFS/ME patients to seek out stem cell therapy on their own.
Dr. Cheney has three concerns regarding CFS/ME patients undergoing stem cell therapy.
*1) Re-Boot Gene Expression with Cell Signaling Factors*
Dr. Cheney believes that better and longer lasting results will be
obtained from stem cell therapy if patients first shift or "re-boot"
their gene expression to a more normal genetic expression. "Gene
expression" may not make sense to some, so here's a simple explanation.
Individual genes are either "on" or "off". If they are off, something
may trigger them into turning on, such as diet, environmental exposures,
pathogens, toxins, stress, etc. Once on, it’s a matter of degree, like a
dimmer switch. They can be on just a little, on moderately, or on all
In all chronic illnesses, the body attempts to compensate or adapt to
the illness. Doing so shifts the gene expression. The gene expression of
a person with CFS/ME is far from normal - it reflects the illness. The
overall gene expression is difficult to change. Even if you address the
underlying cause(s) of an illness, it can take months or even years for
the body to realize the illness is gone and allow the gene expression to
gradually shift back to normal.
A great example of this is Dr. Cheney’s own heart transplant made
necessary by a diagnosis of idiopathic cardiomyopathy. After two years
of increasingly severe symptoms, the underlying problem of heart failure
was corrected surgically in a matter of hours. However, even after an
outstandingly successful transplant, a resulting cardiac output of
someone in their 20’s, and time to recover from the surgery itself, Dr.
Cheney’s functional capacity was still very much what it had been before
the transplant. He asked his doctors why he still felt so incapacitated.
One doctor told him, “Well, your body adapted to the reality of a
failing heart in order to survive and now that your heart is fixed, it
will take a year or two for your body to re-adapt back to the reality of
your new heart.”
In other words, all chronic illness always has two problems to solve:
the problem at the core of the illness and the adaptation the body makes
to survive. The first can sometimes be fixed very quickly (hours to
weeks) but the latter takes time. There is no “hours to weeks fix” to
the second problem of adaptation because it becomes programmed into
one’s gene expression, also known as phenotype.
Since his surgery and adaptive cure from heart failure, Dr. Cheney has
found that certain low molecular weight peptides called Cell Signaling
Factors (CSF's) have the ability to more quickly shift gene expression
towards normal as measured by echocardiography. CSF’s can often improve
function within 90 days, though tests results show progress well before
the patient actually experiences it. For instance, measurements of
cardiac diastolic function typically improve months before patients
report feeling better and doing more. There is also the problem of
genotype corruption which can only be addressed by stem cells.
Over the last three or four years he has determined which CSFs are most
beneficial to CFS/ME patients. He does not order them from a company,
but has arranged for his own private production of heart, pancreas,
liver and kidney from the respective organs of bison. The brain CSF,
also privately produced, is of porcine (pig) origin. The CSF's are in a
cream-like form and are typically rubbed into the forearms three times
per week to daily.
The use of bison as the primary source for the CSF's stems from several
factors. Bison are incredibly aerobic animals with vast aerobic
energetic potential. They are significantly more organic than virtually
any other meat source. Finally, they are only one of two known animals
who never get cancer, the other being shark. They also live three to
four times longer than beef cattle and they do not have "mad-cow"
disease, though skin cream makes this a non-issue. Finally, bison CSF’s
are 50-100% more potent than comparable porcine or bovine CSF’s, as
measured on echo.
Dr. Cheney uses adrenal and thymus CSF's for testing purposes only -
never for treatment. CFS/ME patients respond very negatively to them,
usually with a major drop in energy on echo. Adrenal and thymus CSF's
should never be taken by CFS/ME patients. Porcine Liver also has a very
negative effect in CFS patients and should not be used either for therapy.
Dr. Cheney is the only source of CSF's made from bison because at this
time he feels that they need to be used only under the care of a medical
professional familiar with their use. For this reason, he only sells
them to his own patients. He plans to also sell them to a few other
physicians who are currently learning about their use, how to
incorporate appropriate pretreatments, and how to individualize the CSF
protocol for their patients. Information about the physicians who have
access to the CSF’s and know how to use them will soon be posted on the
Cheney Clinic web site (cheneyclinic.com).
There is anecdotal evidence that the use of CSF's can significantly
improve the benefits of stem cells. An 80-year-old man with Parkinson's
Disease as well as Coronary Artery Heart Disease (history of two heart
attacks) was part of the group that received four consecutive daily
transfusions totaling 45 million stem cells the last week of May. (He
does not have CFS/ME but is related to one of the CFS/ME patients.) He’d
been using four of the CSF's for 18 months. While still in Panama
receiving the stem cells, the tremors began disappearing and he was able
to hold a fork and eat peas for the first time in two years.
One week after his last transfusion, an echo revealed that an area of
his left ventricle (a chamber of the heart) that prior to the stem cell
transfusions was dead and not moving, was now alive and moving. At that
time he also had much less hand tremor, was walking more upright with
much less shuffle and swinging his legs much better when he walked. He
threw away his cane. The allergic bags under his eyes disappeared. He
looks, acts and talks as if he were 10 years younger. His face is pink
now rather than pale and gray. He is more alert and doesn't slur his
words. He feels much better and has much less foot edema. He even went
back to work part-time.
The doctors at the Stem Cell Institute, who are familiar with
Parkinson's cases, were astonished at the degree of benefit he
experienced, and so quickly. They are very intrigued by the potential of
CSF’s to increase the benefits of stem cells.
Three studies* of patients who received stem cell transplants in the
90’s revealed that despite initial success, about ten years later the
stem cells had been corrupted and the patients’ disease returned. Though
the stem cells worked as expected and lasted 10 years, they were
eventually corrupted by the same disease process that damaged the very
cells they were replacing.
Dr. Cheney believes that CSF’s are necessary both before and after the
transfusions to increase both effectiveness and durability of the stem
cells. According to Dr. Cheney, “Putting stem cells into a corrupted
environment will eventually corrupt the stem cells and blunt their
otherwise potentially impressive benefits.” To use another of Dr.
Cheney’s analogies, if you correct the “software” problem first (shift
phenotype with CSF’s) and then address the “hardware” issue (shift
genotype with stem cells), you’ll get much better results. You don’t
expose a new hard drive to corrupted software programs, or the system
will crash again! This is why he recommends that his patients continue
to use the CSF’s even after the stem cell transfusions. Doing so is
designed to prevent the gene expression from shifting back to the
configuration of the original illness and corrupting the stem cells.
*2) **Care must be given to a corrupted gut ecology before receiving
Recent publications, especially by Kenny DeMeirleir out of Belgium, as
well as others, suggest that corrupted gut ecology is playing a very
large role in a subset of the sickest CFS/ME patients. This corruption
must be addressed or it may thwart the effects of stem cells or degrade
their benefits over time. The gut ecology must be measured by
appropriate tests (such as the GI  panel from Diagnos-Techs,
diagnostechs.com) and an integrated effort made to reduce the effects of
this corrupted gut ecology on CFS/ME physiology. Stem cells can help
attack the root causes of this corruption but the gut corruption and its
consequences need to be minimized ahead of the stem cell transfusions.
The core approach to improving the gut ecology is a modified elimination
diet, copious use of digestive enzymes, immune support using bovine
derived antibodies and immune factors (colostrum) and the judicious and
careful use of probiotics with special attention to support of commensal
E.Coli (a beneficial form of E.Coli marketed as Mutaflor).
*3) Go to a high quality stem cell clinic affiliated with a US company.*
Dr. Cheney’s third concern is the quality of the stem cell laboratory
and clinic doing the stem cell transfusions. Dr. Cheney chose MediStem,
Inc (medisteminc.com), only after careful research and consideration of
quality control issues. Medistem Inc. is a US-based company that assists
in the operation of two clinics in Central America (cellmedicine.com)
because those locations allow them to offer the treatment at a quarter
of the cost of the same treatment in a clinic in the United States.
Dr. Cheney met with Neil Riordan PhD, the laboratory director and CEO of
both clinics, and toured their facilities in Costa Rica and Panama
before taking patients there. The clinic in Panama is located near, and
its doctors associated with, the newest and best hospital in that
country. The Punta Pacifica Hospital (hospitalpuntapacifica.com) is
located in downtown Panama City and is professionally tied to the
Johns-Hopkins University Medical Center. There is, however, no direct
association of the stem cell clinic to Johns-Hopkins.
The clinic stem cell laboratory, which produces the afterbirth derived
stem cells used in treatment, is located in The City of Knowledge in the
former US Canal Zone. Before a company can be established in this
prestigious high technology development site, a thorough vetting process
and due diligence approval from the Panamanian government is required.
The fact that the laboratory is located here signifies its high
standards and excellent quality control.
Touring a stem cell clinic and meeting its clinical staff is not the way
to judge the level of treatment one will receive. The key to evaluating
the quality of stem cells used and the effectiveness of the treatment
received is to be found in the laboratory and its quality control
operations, as well as the expertise of the laboratory personnel. Bear
in mind that the laboratory and the clinic may be located in separate
buildings, perhaps even very separate areas of a city.
There are serious concerns about stem cell clinics operating in Mexico
and elsewhere. There are many bad actors and poor actors. Some actually
transfuse patients with saline and claim that it’s stem cells. Others
have no quality control and do not test the viability of their stem
cells, which means they may have little power to effect healing. Poor
quality control could also lead to lack of sterile procedures and at
worst patients could end up with no stem cells and an infection!
Dr. Cheney strongly recommends that clinics and their laboratories in
Mexico and elsewhere be carefully scrutinized, especially their quality
control procedures, personnel and capitalization. Good stem cell
laboratories require millions of dollars to capitalize and cost over a
hundred thousand dollars per month to run just for laboratory expenses.
They require deep pockets and a decade or more of expertise in the area
of quality stem cell production and propagation from afterbirth.
Significant capitalization acts to ensure quality control to protect the
investment of millions of dollars.
Adult stem cell therapy holds immense hope and possibilities for CFS/ME,
but requires a significant investment. Prospective patients should
consider such a major investment very carefully and make decisions that
ensure the safest, most effective, and longest lasting treatment possible.
For more information about the Cheney Clinic and Dr. Cheney’s research,
see cheneyclinic.com and cheneyresearch.com
* Kordower JH et al. Mov Disord 2008 Dec 15; 23:2303 Nat Med 2008; 14:501 and 504 (two separate articles)
[This article is available as Word document. Email firstname.lastname@example.org for a copy.]
Please distribute to other groups, lists and organizations.
[Note, Dr Myhill is a 'fatigue' or 'CFS' expert and only a small amount of her comments relate to M.E. The entirety of this website is also not recommended.]
Dr. Paul Cheney's theory of CFS was inaccurately described in a post on December 13th.
[See http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0612B&L=CO-CURE&P=R3801 ]
I spoke with Dr. Cheney today, and he asked me to post a clarification.
The incorrect statement read, "Dr. Cheney is known as a proponent of the "cardio" theory that describes CFS symptoms as the body's compensatory response to heart damage."
Here is the clarification from Dr. Cheney:
A heart problem is not the initiating event in CFS. A cellular energy
problem lies at the core of this illness. Like all other body systems,
the heart is affected. Key enzyme sytems that neutralize the potentially
harmful byproducts of energy production are not functioning properly.
Thus CFS patients protect themselves from these highly damaging free
radicals by lowering energy production. Fatigue is thus a protective,
compensatory response to the severe damage that would otherwise result
from normal energy production.
Dr. Cheney also stated that the disability experienced by many CFS
patients is not simply a result of the energy deficits in the heart, but
also the energy deficits in the brain, the liver/gut, etc.
He further stated that given the nature of the underlying problem, the
heart responds to energetic treatments - not the usual cardiac
I would like to add that when it comes to the heart problem in CFS, it
is very difficult to get adequate testing and diagnosis because this
involves diastolic dysfunction, not systolic dysfunction. In other
words, our hearts can pump just fine but they do not fill properly.
Though it's very counterintuitive, it takes energy for the ventricle to
expand and fill, but no energy for it to contract and pump. (Think of it
as a rubberband.)
This is a rather new area of cardiology, and most cardiologists are
familar with the diagnosis and treatment of systolic problems, not
Dr. Cheney spoke for over three hours on this subject (and CFS in
general) in September. He gave a many details on his latest treatment
protocol and the early exciting results of his current study which
utilizes this treatment. A two-disc DVD of this seminar is available.
For more information on the DVD set and how to order it see the second
paragraph of the homepage at www.dfwcfids.org .
Dr Paul Cheney 'The Heart of the Matter': cardiac and vascular abnormalities and cardiomyopathy) 2005
"Now, do CFIDS patients prefer to stand up or lie down? Of course, they prefer to lie down. Do you know why? "Do you know what your cardiac output does when you stand up? It drops 30%. In all humans, without exception. So very critical to this technology is that it's the only one that could be done upright [again, four positions on the tilt table are best; standing up and laying down at a minimum]. And what they found is absolutely astonishing, truly astonishing. When [disabled CFIDS patients] stand up, [they're] on the edge of organ failure due to low cardiac output."
CFS Compensates for Idiopathic Cardiomyopathy "Let me first of all define heart failure. There are two kinds of heart failure. There's the kind that any cardiologist can diagnose in about a minute. That you do NOT have. Which is why cardiologists missed this. What you have is Compensated Idiopathic Cardiomyopathy." [Idiopathic: cause unknown; Cardiomyopathy: structural or functional disease of heart muscle] "And your primary means of compensation—now this is the big twist—are you ready? Have you got your seat belt on? The primary methodology for compensation for this disorder is in fact CFS itself."
The Peckerman article Dr. Cheney refers to is available free online.
"Peckerman's research team at the VA Medical Center in East Orange, N.J., used a sophisticated test to measure how well the heart pumps blood. They gave the test to 16 chronic fatigue syndrome patients, both before and after they exercised. They also tested four non-athletic volunteers. All of the patients' and volunteers' hearts' pumped normally during rest. After exercise, however, 13 of the 16 chronic fatigue [syndrome] patients' hearts pumped less blood than they did at rest.
"Basically we are talking about heart failure," Peckerman tells WebMD. "But chronic fatigue syndrome is a progressive disease. If we were able to detect this in its early stages, it is quite possible there might be a way to treat it."
September 9th, 2006
During his three-hour presentation, Dr. Cheney discussed his latest research and treatment findings. These include (but are not limited to):
**Diastolic Dysfunction in CFS
Due to a lack of energy at the cellular level the hearts of CFS patients don't fill properly with blood; this is further complicated when patients stand. Ninety-nine percent of Dr. Cheney's CFS patients test positive for diastolic dysfunction via echocardiograms (sonograms of the heart).
**Patent Foramen Ovales in CFS
A PFO is a flap-valve that allows blood to flow between the two upper chambers of the heart. Present in babies before they are born, it usually seals shut after birth but remains in up to 20% of normal adults in whom it can open under certain rare conditions. PFO's are unusually common in CFS, with up to 80% of patients testing positive. The presence of a PFO in CFS can be very problematic. The underlying reason for the increase in PFO's in CFS may be the underlying energy deficits at the cellular level. Dr. Cheney believes that PFO closure in CFS poses certain risks and there are indications that his treatment protocol may make such a procedure unnecessary for most patients.
**Therapeutic Responses to Cellular Energy Therapy as Measured by Echocardiography
Dr. Cheney's current research treatment protocol is designed to increase cellular energy production by restoring the function of energy systems inside cells. The pre-treatment phase of the study improves certain enzyme functions that are necessary for the safe production of energy. The pre-treatment phase also protects vital organs and modulates the immune system. One way Dr. Cheney is measuring the effectiveness of the treatment protocol is by doing sonograms of the heart before and after
**Oxygen therapy in CFS
Oxygen appears to be a blessing and a curse, depending upon the dose. Low dose oxygen appears to improve cardiac function, which has been
demonstrated by echocardiographic parameters sensitive to cellular energetics. However, higher doses of oxygen appear to cause significant toxicity to the heart in general and to the main pumping chamber in particular. This unusual sensitivity to oxygen toxicity appears related to the nature of the underlying defects responsible for reduced cellular energy.
Dr. Cheney was one of the doctors who recognized an outbreak of "something" in Incline Village at Lake Tahoe in 1984 and called in the CDC. He has treated approx. 5000 patients with CFIDS from at least 48 states and 15 countries. He has published numerous articles in peer reviewed medical journals and lectured around the world on the subject of CFS. Dr. Cheney has authored or co-authored publications and scientific presentations in many fields relevant to CFS, including immunology, virology, clinical epidemiology, metabolism, neuropsychology, neuroendocrinology, and exercise physiology. He currently practices in Asheville, NC.
DVD 2-disc set
The event was taped and we are now selling a DVD 2-disc set. Click here for purchasing information.
A talk by Dr Cheney; CFS and Diastolic Cardiomyopathy
FREE ONLINE 2005 VERSION (Note that this is NOT the far more advanced 2006 version and does not contain the treatment section as seen in the 2006 version)
A three-hour talk in streaming video for viewing on the Web [with a broadband connection only, not a dial-up connection.] From the ME society of America.
Click on this link to view/download the 2005 video "CFS and Diastolic Cardiomyopathy"
To purchase a video cassette or DVD of the updated 2006 seminar by Dr. Cheney from the Dallas-Fort Worth group, Click here
Note: See the Cardiac Insufficiency Hypothesis page on the ME Society of America website for more information and links relevant to this topic.
A Summary of the Cheney DVD 'The Heart of the Matter' by Maraget Williams, 10th November 2006
'Magnetic Resonance Imaging
· 78% of patients have punctate lesions which are most consistent with small strokes and there is evidence to support this (ie. they are not caused by a virus or by inflammation).
Mixed venous blood gas picture
· PvO2 is 25 (it should be 40)
· PvCO2 is 55 (it should be 45)
This is a differential hypoxia with hypercarbia. There are only two diseases where this is seen: one is pulmonary hypertension; the other is (ME)CFS.
The arterial side is normal.
Where does the oxygen go? It’s being transported somewhere, but not to the mitochondria. (ME)CFS patients have been shown to have increased pooling of extra-cellular fluid in the belly, pelvis and legs which might contain this dissolved oxygen, but it is more likely being consumed by the oxidative pathway to create superoxide in massive amounts. Superoxide is the progenitor of all free radicals. The consequences are increased intra-cellular oxdidative stress.
If you intervene and give Prozac, you up-regulate superoxide, which is why serotinergic drugs kill neurons.
Intervening with drugs in situations not fully understood breeds chaos and kills patients.
(ME)CFS as cellular metabolic dysfunction
There are problems at cell level in energy production, and because of this degraded energy problem, patients suffer a defect in the ability to detoxify toxins, especially in the portal circulation (giving rise to gut toxicity as seen in phase 2). Gene alterations (seen in phase 4) generate a massive disturbance in the development of energy at the cell level. If you lose energy, you lose glutathione, but the more glutathione you give, the more you just create oxidised glutathione, which generates loss of citrate, causing a left shift on oxyhaemoglobin desaturation. Citrate also binds to magnesium, so over time the patient will develop a severe magnesium depletion syndrome. When that happens, you’ve had your last good night’s sleep: when you lose magnesium, you can’t sleep any more.
How and why would a low energy state lead to an inability to transfer oxygen? Cheney concludes that it’s part of a bigger picture that uses low oxygen transport to stablise the system.
In (ME)CFS, these serious issues are a big problem, especially in the brain, the heart and in muscle. (ME)CFS is a compensatory response to down-regulate energy production and oxygen transport in order to reduce tissue damage.
Attempts to push beyond energy limits will cause injury.'
[This summary is taken from the full-length article: Klimas, Wessely and NICE: Redefining CBT?]
CFS, Heart Problems, and a Risky Procedure: A Warning from Dr. Cheney by Carol Sieverling, reviewed and edited by Paul R. Cheney, M.D., Ph.D.
I had a relatively brief appointment with Dr. Cheney at the end of June. He is very concerned that the CFS community will hear that he has detected a heart problem called Patent Foramen Ovale (PFO) in a significant number of his patients, and that as a result, many CFS patients will pursue a corrective procedure that is potentially very dangerous. He asked me to write an article informing CFS patients about the risks of undergoing a catheterization procedure to close a PFO or Atrial Septal Defect (ASD).
Oxygen Toxicity as a Locus of Control for Chronic Fatigue Syndrome Paul R. Cheney MD, PhD 2008
Cell Associated Therapy for Chronic Fatigue Syndrome: Is this the Next Frontier? Paul R. Cheney MD, PhD 2008
From: DFW CFIDS <dfwcfids58@TX.RR.COM> Paul Cheney's Presentation at IFM conference 2008
Paul Cheney, MD, PhD was the opening speaker at the 15th International Symposium of Functional Medicine in Carlsbad, CA on Thursday, May 22. He spoke for almost three hours.
His presentation, "Chronic Fatigue Syndrome, Oxidative Stress, and Pain: A Physician's Personal and Professional Journey Through the Functional
Medicine Model" received a five-minute standing ovation from the over 600 physicians and researchers in attendance from 14 countries.
The Institute of Functional Medicine will be offering a DVD for sale of Dr. Cheney's voice synchronized to his PowerPoint presentation. This should be ready within 30 to 60 days through the IFM. (www.functionalmedicine.org.) I want to emphasize that this DVD will only be available through the Institute of Functional Medicine at the above website. The cost is unknown at this time.
His presentation included two research astracts that will be posted separately. One is "Cell Associated Therapy for CFS" and the other is "Oxygen Toxicity as the Locus of Control in CFS".
CFS ‘a mitochondrial disease’
I asked Cheney about mitochrondrial myopathy and CFS. He confirmed what I suspected: in CFS there is so much injury to the mitochondria that CFS could be called a mitochrondrial disease.
I recall seeing a photo Cheney showed me at my first visit in '96. A study of mitochondria in CFS patients was done at UNC. The photo showed a mitochondria from a healthy person. It was lit up like a thunderstorm on a radar screen - some blues and greens, but a lot of yellow and red – high energy production. The mitochondria from the CFS patients was such a contrast: mostly blues and green with a tiny bit of yellow in it. No where near the energy being produced.
What does Phase III sound like? "Within my boundaries, I don't feel too bad. I'm pretty comfortable. My problem is that every time I try to exceed those boundaries, I crash. I get worse. So I haul back within my boundaries, and I'm now comfortable again." With the loss of dynamic hormone response, patients cannot cross boundaries. Crossing boundaries requires dynamic response capability, and they no longer have it. In addition to the problems with dynamic hormone response, Phase III may also involve damage to the DNA of energy producing mitochondria. The loss of a portion of mitochondria puts an energy ceiling on patients.The extent of the boundaries can vary among patients, depending on the amount of injury done during the first two phases. By no means is everyone home-bound or bedridden. And there is hope. Dr. Cheney does not believe the endpoint of Phase III is totally fixed. There is a good deal of plasticity to the central nervous system, and there can be significant resuscitation of brain function, and perhaps even the mitochondria may not be completely lost.
The Clinical Management of Chronic Fatigue Syndrome (CFS) and HIV Infection by Dr. Paul Cheney (PDF)
Major Conference Will Focus on Mitochondria - Defects Key to Understanding Chronic Fatigue Syndrome (CFS) (comments by Cheney included)
According to CFS expert doctor, Paul Cheney, "in CFS there is so much injury to the mitochondria that CFS could be called a mitochrondrial disease." It is good news for CFS research then, that a major conference is slated to look at mitochondria and diseases linked to mitochondrial defects. Although CFS is not specifically mentioned in the conference agenda, any developments in the field have great potential to assist CFS experts in their treatment efforts.
Balance the Immune System (Th1/Th2) by Dr Cheney, M.D., Ph.D. Basic Protocol/Treatment Plan (2003) by Dr Cheney, M.D., Ph.D. Basic Protocol/Treatment Plan (2002) by Dr Cheney, M.D., Ph.D. Betaine: Aids Digestion, Kills Bacteria, Prevents “Acid Reflux” by Dr Cheney, M.D., Ph.D. Breathing to Increase Your Oxygen Intake This replaces the Oxygen (rebreather) Treatment listed below. From the article, "Why Kenyans Always Win," DFW Lighthouse, April 2001 newsletter. (04/01) by Dr Cheney, M.D., Ph.D. Diagnostic Marker for CFS? by Dr Cheney, M.D., Ph.D. Dr. Cheney Speaks on CFS Radio by Dr Cheney, M.D., Ph.D. Drink Gookinaid to Increase Blood Volume by Dr Cheney, M.D., Ph.D. Growth Hormone and Bovine Growth Factor by Dr Cheney, M.D., Ph.D. Interview by Roger Burns (02/99) by Dr Cheney, M.D., Ph.D. Klonopin: Protecting the Brain by Dr Cheney, M.D., Ph.D. Memorandum on Mold Exposure Testing by Dr Cheney, M.D., Ph.D. MSM: Pain Relief, Detox, Anti-Yeast, Allergy Relief by Dr Cheney, M.D., Ph.D. Neurally-Mediated Hypotension Treatment by Dr Cheney, M.D., Ph.D. Oxygen Treatment by Dr Cheney, M.D., Ph.D. Philadelphia: GPCA CFIDS Symposium, November 1998: Cheney and Suhdolnik Keynote—Summary or Video Available (11/98) by Dr Cheney, M.D., Ph.D. Response to the Chronic Neurotoxin Test and Treatment (Oct '01 DFW Lighthouse) (10/01) by Dr Cheney, M.D., Ph.D. SSRI and Stimulants: Frying the Brain by Dr Cheney, M.D., Ph.D. Treatment of Bacteria, Fungus and Parasites by Dr Cheney, M.D., Ph.D. Undenatured Whey by Dr Cheney, M.D., Ph.D.
Basic Protocol/Treatment Plan (2003) by Dr Cheney, M.D., Ph.D.
Basic Protocol/Treatment Plan (2002) by Dr Cheney, M.D., Ph.D.
Betaine: Aids Digestion, Kills Bacteria, Prevents “Acid Reflux” by Dr Cheney, M.D., Ph.D.
Breathing to Increase Your Oxygen Intake This replaces the Oxygen (rebreather) Treatment listed below. From the article, "Why Kenyans Always Win," DFW Lighthouse, April 2001 newsletter. (04/01) by Dr Cheney, M.D., Ph.D.
Diagnostic Marker for CFS? by Dr Cheney, M.D., Ph.D.
Dr. Cheney Speaks on CFS Radio by Dr Cheney, M.D., Ph.D.
Drink Gookinaid to Increase Blood Volume by Dr Cheney, M.D., Ph.D.
Growth Hormone and Bovine Growth Factor by Dr Cheney, M.D., Ph.D.
Interview by Roger Burns (02/99) by Dr Cheney, M.D., Ph.D.
Klonopin: Protecting the Brain by Dr Cheney, M.D., Ph.D.
Memorandum on Mold Exposure Testing by Dr Cheney, M.D., Ph.D.
MSM: Pain Relief, Detox, Anti-Yeast, Allergy Relief by Dr Cheney, M.D., Ph.D.
Neurally-Mediated Hypotension Treatment by Dr Cheney, M.D., Ph.D.
Oxygen Treatment by Dr Cheney, M.D., Ph.D.
Philadelphia: GPCA CFIDS Symposium, November 1998: Cheney and Suhdolnik Keynote—Summary or Video Available (11/98) by Dr Cheney, M.D., Ph.D.
Response to the Chronic Neurotoxin Test and Treatment (Oct '01 DFW Lighthouse) (10/01) by Dr Cheney, M.D., Ph.D.
SSRI and Stimulants: Frying the Brain by Dr Cheney, M.D., Ph.D.
Treatment of Bacteria, Fungus and Parasites by Dr Cheney, M.D., Ph.D.
Undenatured Whey by Dr Cheney, M.D., Ph.D.
Balance the Immune System (Th1/Th2) by Dr Paul Cheney
The Diagnosis of Chronic Fatigue Syndrome - An Assertive Approach by Paul Cheney, MD, AHD and W. Charles Lapp, MD, FAA
Bits & Pieces: (ongoing) by Dr Cheney, M.D., Ph.D.
Further articles, taken directly from patients appointments with Dr. Cheney, are available at: http://www.dfwcfids.org/medical/cheney.html