Dr. Cheney Goes His Own Way: the Virginia 2009 Lecture

May 2, 2009

Posted by Cort Johnson

Dr. Cheney gave a lecture on ME/CFS (chronic fatigue syndrome) on April 25th, courtesy of the Northern Virginia CFS/ME/FM and OI Support group. According to a report of the talk posted by Chris on CFSFMExperimental Yahoogroup on April 27th, Dr. Cheney, a creative physician and provocative speaker, did not disappoint. In a three hour non-stop, often extemporaneous lecture, populated with power-point slides, Dr. Cheney continued to plow new ground.

Still the Heart of the Matter – Dr. Cheney shocked the patient community five years ago when, shortly after his own heart transplant operation, he announced that ME/CFS patients were in ‘heart failure’ and that energetic problems with the heart were at the core of this disease. His two abstracts at the recent IACFS/ME conference asserted that ‘oxygen toxicity’ problems in the heart were fundamental and that cell signaling factors may be helpful.

Chris reported that Dr. Cheney believes oxygen toxicity is the ‘control point’ around which this disease revolves. (Interestingly according to his IACFS/ME abstract ‘oxygen toxicity’ is not uncommon with 65% of his healthy controls (and 100% of his ME/CFS patients) testing positive for it.  (This suggests that it’s the degree rather than the presence of oxygen toxicity that Dr. Cheney believes is unique to ME/CFS).

A New Direction –  Dr. Cheney is using something he calls ECHO Terrain mapping to assess the effectiveness of his treatments. This appears to involve placing a substance on the patients skin and then measuring their IVRT (speed with which the heart expands during diastole). Substances which increase IVRT are believed to have negative effects. This has lead him to some surprising findings.

  • Glutathione, a key aspect of his treatment protocol for many years, is not helpful and can even be harmful for some patients. Dr. Cheney pioneered the use of whey powder to increase glutathione levels in this disease about 10 years ago and glutathione depletion has long played a core role in his model of chronic fatigue syndrome (and still does).In 1999, declaring that glutathione had potent antiviral effects he reported that of eight patients taking undenatured whey five improved and one had so much energy that he had to lower his dose. He stated that denatured whey powder supplementation resulted in increased well-being, reduced free radical activity, increased immune functioning and reduced viral load. The ME/CFS community took note and the soon everyone was buying expensive cans of this designer whey protein product. Not long after that the specialty whey protein field took off with brand after brand hitting the market.As of 2005 Dr. Cheney was still referring to ‘the power of undenatured whey’ and glutathione. Dr. Cheney’s statements are still used by several whey manufacturers to advertise their products. But that is over. Dr. Cheney now believes that glutathione - far from being helpful – can be harmful. So interestingly enough, so is COQ10 – another important leg of his 2005 treatment protocol.
  • Methyl B12 and folapro – two features of Rich Van Konynenburg’s Simple Methylation protocol – are, as well, at least according to the ECHO terrain maps - are both either not useful or can be harmful to the heart as well. (Rich Van Konynenburg reported that his Simple Methylation Treatment plan use hydroxy B-12 not methyl B-12.)
  • Vitamin D3 is toxic.
  • D-Ribose, a product used by congestive heart failure patients, falls into the same category. 

ECHO Terrain Mapping – A Dissenting Viewpoint - Rich Van Konynenburg argues that short-term ECHO terrain tests – which measure IVRT’s immediately following exposure to a substance may not reflect longer term results. S

Current Treatment Protocol: With his high hourly rates and at times enormous protocols Dr. Cheney has been known as the Cadillac of ME/CFS physicians. The ECHO Terrain mapping procedure, appears, however, to have put a real dent in the size of his protocol. Dr Cheney now advises patients to back off supplements if they’re not bringing noticeable benefits.

Much of Dr. Cheney’s base protocol is still intact; Klonopin, Isoprinosine, Nexavir, hydroxycobalamine (B-12) are still being used but it looks like he’s pulling back on all energy enhancing  substances (glutathione,  COQ10,  D-Ribose).

Chris reported that once one gets past the base protocol Dr. Cheney is focusing on four treatment types now;

1. Artesunate – an anti-malarial drug
2. Cell signaling factors
3. Gut dysbiosis – probiotics, digestive enzymes, diet
4. Stem cell infusion
.

Interestingly while Dr. Cheney remains focused on heart he’s also convinced – in line with several other physicians – that the gut plays a critical role in this disorder – stating that unless the gut is fixed nothing else will be.

Artesunate - an antiviral and redox factor used to treat malaria – is reportedly a key factor which has allowed Dr. Cheney to double his cure rate. (Malaria medication! – a testament to Dr. Cheney’s seemingly ceaseless search to find treatments that fit his model of ME/CFS).

      Dig Deeper: For more on Artesunate

Cell-Signaling Factors – Dr. Cheney has pioneered the use of ‘cell-signaling factors’ in this disease. Interestingly he reports that adrenal and thymus cell-signaling factors reduce patients energy and heart while brain and liver CSF’s increase energy levels and cited the significant improvements patient experienced on them.

Dr Cheney’s IACFS/ME abstract does report significant improvement but it was hardly earth-shattering; patients improved an average of 10 points on the Karnofsky scale of functioning (0-100 range). Their stroke volume and IVRT (a measurement of diastolic functioning) also improved.

Stem Cell Infusions - are used in non-responders which tend to be people over 40. In order to reduce costs they’re been done in Costa Rica and Panama. They take six months to evaluate but Chris reports that Dr. Cheney says that they ‘obliterate oxygen toxicity’ and patients have been ‘transformed’.

Dr. Cheney is may be our most creative physician. He is constantly scouring the medical field for new treatment possibilities and regularly introducing new treatment options. Whether he’s on the right track, is of course, unclear. The fact that he now believes that significant portions of his former protocol are not only not helpful but actually harmful is eye-brow raising to be sure – one wonders why that wasn’t evident before. The ‘significant’ but still quite limited progress of his recent patients indicates that ME/CFS treatment under Dr. Cheney – and every physician – is still, after 25 years on the job - a work in progress.

Dr. Cheney is opening two websites; one devoted to the clinic and one to his research. You can sign up for newsletters at cheneyclinic. com, and cheneyresearch. com. Video’s of the talk will be available at some point on the CFS and FM Support Group of Dallas http://www.dfwcfids.org/index.shtml

(Check out the comments below for more from Chris and other patients)

47 comments

{ 46 comments… read them below or add one }

John May 2, 2009 at 7:56 pm

It’s all about the subtypes.

Dr. Dan Peterson, who gave this presentation at the 2008 HHV-6 Conference on Viruses in CFS as well as a slightly longer one at the 2004 OFFER Conference appears to have found a subgroup of patients with subacute HHV-6A encephalitis, ie HHV-6A infection of the spinal fluid, quite a few of whom respond to antiviral treatments such as Vistide(cedofovir) if I’m not mistaken.

Dirk Lassner, who made the following presentation at the main 2008 HHV-6 Conference, has found a lot of people who appear to be suffering from infection of the heart by various viruses including HHV-6, enterovirus, adenovirus, etc. The enterovirus and adenovirus patients are reported to respond to 6 months of interferon beta treatment, while the HHV-6 patients do not.

It’s almost a running joke how CFS patients will compare notes and what helps one will make another worse, what helps some will not help others, etc. The identification of subtypes and the specific aetiologies and pathogenesis comprising each of them would be a major step forward for ‘CFS’ patients worldwide.

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cort May 4, 2009 at 7:05 am

I agree completely John. We’re really in the dark ages here and it’s tough on the CFS patients – we’re all scrambling around trying everything in hopes that something will work. It’s a complete mess. The WPI has made a big (BIG) step forward in the subset direction – there’s more news on that front from the IACFS/ME conference. That’s as you say, thanks to Dr. Peterson, who thought he say a viral subset early and has stuck with that group.

Dr. Cheney, though, says oxygen toxicity is found in 100% of his CFS patients and most of them have diastolic dysfunction. I was rather chagrined to find out that diastolic dysfunction is a real grey area in medicine (unfortunately). (Of all the things the one he finds is hard to define – that just our luck.) I believe he does find it but is it the key in ME/CFS or is it a secondary problem? As a laymen speculator I would guess it’s secondary but I’m only a laymen outside looking in. No one does very well in treating this disease though. All of them seem to be able to help and occasionally cure but we’re still waiting for someone to get at the core of this.

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Brown-eyed Girl May 4, 2009 at 6:43 am

I am in a state of total exasperation, and apparently, too, a walking toxic waste dump. What happened to diastolic dysfunction (which I have — grade 1, mild) and the heart healthy supplements of di-ribose and CoQ10? They’re now BAD? Also, Methyl B12, is that in my compounded B12 shots?? Fructose is a no-no, glucose gets a thumbs up. Foget the thyroid medicine, too. D3 is toxic? I will quickly check which vitamin D is in my cupboard. Magnesium is still OK. It’s a good thing I let the hole in the heart thing go in one ear and out the other. I remember the months I went on oxygen following Dr. Cheney’s directions exactly, although he did change his mind about the mask vs. the nose things. One wonders what I did to myself by actually giving myself oxyen?! And now we’re back to leaky gut and probiotics? Let’s shuffle the cards a bit and bring out the old and make it new again. By the way, see you all in Panama for the stem cell infusion. YIKES! I’ve always had the greatest respect for Dr. Cheney, felt he was “right-on!” Perhaps this self-inflicted toxicity has gone to my brain, but now he seems a trifle (what is the word?) strange. I’d like to stay around and write more, but I have to get busy and make a clean sweep of a cupboard shelf and get on GNC or Prohealth websites and START OVER. Better yet, I’ll save my money for the malaria medication and trip to Panama or Costa Rica.

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jack May 4, 2009 at 8:12 am

how can ribose be bad if its used by heart patients?! im so confused!
also is cheney saying now NOT to use whey?
how can glutathione be bad when its a natural body substance? I thought glutathione was the bodies way of helping repairing itself!!! now im soooo confused
it is a nightmare to know whats right and whats wrong now!
cheney needs to give us sufferers clarification if he is going to shake things up so dramatically!

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cort May 4, 2009 at 2:41 pm

It is a rather startling turnaround. In Dr. Cheney’s defense he believes something different is happening in ME/CFS patients than in patients with congestive heart failure. (When he announced ME/CFS patients were in ‘heart failure’ he didn’t mean that kind of heart failure. Still that statement spread a chill up my spine.)

One would think, nevertheless, that D-Ribose would work in ME/CFS since it is, I believe, a mitochondrial booster – and Dr. Cheney believes the cardiac problems in the disease have an ‘energetic’ basis. In fact there are quite a few positive reviews of D-ribose in ME/CFS on the internet (as well as COQ10, Glutathione, etc.).

But energy production and the redox state are two very complex arena’s. If Dr. Cheney believes the ECHO mapping test is correct he has to go by it’s results and it is showing that when these substances are applied to the skin that the diastolic phase of the heart slows down a bit. As the blog notes Rich Van Konynenburg thinks he can explain why a substance that helps patients could cause this to occur but his explanation is quite technical and is beyond me.

One thing to remember; Dr. Cheney used these substances for years and didn’t kill any of his patients. In fact he’s reported that while cures are not common that his protocols, even when they included these substances, helped the average patient – so it’s hard to imagine that they’re really harming patients. If we knew his patients were declining over time then we’d have some evidence that they seemed to help in the short term but were in harmful in the long term but we don’t know that. I’m left with the feeling that they neither helped nor hurt that much – otherwise one would think their effects would have been obvious.

We should also remember this blog was based off a report and we’ll have to wait to see the transcript for the full report to see if there are some subtleties that have been missed.

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chris May 5, 2009 at 6:59 pm

Cort,
From what I heard at this lecture Dr. Cheney still uses many of his previous treatments: Klonopin, low-dose doxepin, isoprinosine, nexavir, essential fatty acids, hydroxycobalamine. His comment about essential fatty acids was that he wonders the same thing about these supplements that he does about co-Q-10, d-ribose, NADH, glutathione and D3. He believes that some of these neutraceuticals should not be used in a corrupted redox state. In some cases, he says they might actually be counterproductive, in others that they might just not do what the patient might be expecting they should do. Cheney uses his ECHO terrain map in a series of “interrogations” that help him determine the energy capacity of these substances in the oxygen toxic patient. He finds that his testing is remarkably consistent.

To me the big news is what he calls treatment 2:

  • Attack redox state with artesuant
  • Attack phenotypic dimension with cell signaling factors
  • Attack gut bacterials with gut modication.

later he repeated it:

  • Redox shift with artesunate
  • Gut modification with herbal antimicrobials, glutamic sources, probiotics
  • Pretreat with glucose , DHEA and inosine and application of cell signaling factors.
  • I am surprised that there is no current Cheney patient who might suggest further details.

    Chris

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CFS Since 1998 May 5, 2009 at 11:57 pm

When Cheney said not to supplement with glutathione I thought he was talking about glutathione injections. Whether undenatured whey is good or not was not specified. A lot of people have had positive experiences with it so I don’t understand why it would be a bad thing.

Artesunate is not just for malaria. It has been shown to be “highly effective” against cytomegalovirus (http://www.ncbi.nlm.nih.gov/pubmed/18419454; addittionally http://www.ncbi.nlm.nih.gov/pubmed/16325931). It is also reportedly effective against other herpes viruses, like Epstein-Barr (http://www.ncbi.nlm.nih.gov/pubmed/18699744), as well as other viruses. I guess Cheney said he uses it not only for its antiviral effects but also because it’s a redox inhibitor.

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Lynn May 6, 2009 at 9:56 am

Thanks for the report. I find myself feeling quite frustrated about Cheney’s recent announcements. I don’t understand why people feel that Cheney is such a great physician when a) he charges an insane amount b) none of his patients report any improvement. I know people who have seen Dr. Peterson and have had signif icant improvement. Also, many people have reported improvement on Rich’s Methylation Protocol.

Why do we continue to give Cheney such great power?

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cort May 6, 2009 at 11:55 am

Thanks Chris, I amended the original post to reflect your comments – and thanks again for reporting on the event. Chris’s daughter has FM and he’s done a great service with his articulate reports on the conferences over the years; his daughter is lucky to have such and understanding Father.

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Rob May 6, 2009 at 6:04 pm

I have to wonder how many of these doctors and trials have taken into account the tendency for some CFS patients to get better slowly over time (or at least until they plateau, in many cases). Are these “treatments” in fact nothing more than placebos or perhaps only slight improvements, and all the improvements are the result of natural improvements in condition on the part of the patient.

Personally, I’m wary of any doctor who makes such a radical shift in recommendations. At the very least, it means they didn’t do enough homework and released their findings to the CFS community without waiting for peer review and to see if others could duplicate their findings. At the very worst…well…the words “snake-oil salesman” come to mind.

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John May 7, 2009 at 3:28 am

I want to know what the hell they did with stem cells. Screw all this other crap, if I can get me a new immune system, sign me up!

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chris May 7, 2009 at 8:26 am

Cheney uses stem cells for those who are “genotypically locked in”. The stem cells are dreived from afterbirth of normal healthy newborns and include both cord blood and cord matrix. These stem cells hone in on abnormal tissue and fix corrupted genotypes.. They are seen by Cheney as a “natural process” and are not rejected. Cheney gave several examples of patients who have successfully received this treatment. The clinics are in Panama and Costa Rico. He gave several websites, which I imagine will be posted on his own research website, once it is up and running. I missed several of thesevwebsites but I did write down one – medisteminc.com

One of the problems with a lecture of this sort is that there is very little one can do to confirm this information. Live cell therapy has been done for a long time, but who knows the risks with CFS? In other words, do the spectacular reactions include negative ones? What are the downsides of this treatment? We are not told this, and patients of Cheney’s tend not to communicate much about this. The same holds true of stem cells. What are the negatives, what are the risks?

Chris

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Arlene May 7, 2009 at 9:41 am

All this just confirms what has been happening to my body for 33 years (please see Phoenix-CFS.org to read my story); sadly I don’t feel hopeful about my future health, or the direction the so-called research is headed. I had great belief in Dr. Cheney, but how do we know what is the right way to handle this horrible illness ~ when no-one can agree on much of anything.

I used to take a lot of supplements, always looking for the “right ones” that would help my symptoms. Now I don’t even take a multivitamin because anything that I take(I have a closet full of supplements) just exacerbates my symptoms. It’s like it overloads my body w/ toxins ~ does that make sense to anyone? It infuriates me that we are still in the dark ages when it comes to CFS. Although I have always been the eternal optimistic, my health the past couple of years has gotten much worse and I honestly believe my life will be shortened by this illness. I just hope for the sake of younger people w/ CFS ~ the CDC, NIH, doctors, researchers and others ~ fast forward research to either be able to treat people effectively or better yet cure them.

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John May 7, 2009 at 3:43 pm

I wish we had more info on the stem cells, because from what little I’ve read stem cells are all over the place in terms of options and effects.

1. Autologus stem cells, which are your own stem cells that they take out and mess with then put them back into you. I’ve read they supposedly can cure diabetes with this one or something similar, although as I say I haven’t done any serious research.

2. Hematopoietic and mesenchymal stem cells, along with umbilical cord stem cells are some of the ones taken from other people but I thought there were graft vs. host disease issues associated with these unless you irradiated your immune system to kill your own immune system and then had these stem cells start a completely new immune system inside you. Problem with this is you can die from viral reactivation as a result of the irradiation if I’m not mistaken.

3. There’s a blog by this girl who had a diagnosis of Chronic Lyme who got embryonic stem cells in India which had no antigens therefore could be infused without irradiation. I don’t think I’d want to do this though.

It just seems to me that unless the cells actually did transfer some sort of dna or antigen or something that had the effect of fixing a patient’s own defective immune response then I don’t see how it would be anything other than a short term, although powerful, fix. I’ve also seen reports of adverse reactions such as thyroiditis and such. There was a great link to a list of Indian universities and centers and such that listed pretty much every place in India that was working with stem cells and specifically what kind of cells and diseases they were working with but I haven’t been able to find it again. That’s kind of my pipe dream, to just go to India or somewhere and have them inject me with something and wake up and feel healthy again. Sigh.

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Jennifer May 8, 2009 at 5:13 am

Thank you for this report. Cheney’s theories are interesting, though I personally want to wait and see how they pan out further. Regardless of whether Cheney is right or not, I hope readers would not consider Van Konynenburg’s thinking at the same level as Cheney’s. Take his opinions with a large heaping of salt.

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jack May 8, 2009 at 10:56 am

an idea has sprung to me, as cheney seems to be one of the major forces coming up with new theories do you think cfs/me sufferers as a whole could perhaps ask him if he wouldnt mind setting up a blog or official website which would give details in black and white of his theories, becuase as far as I am aware cheney doesnt have a book where all this is written down!? we need a central base where we can obtain his info direct from him…what do y’all think of my idea? p.s I have no contact with cheney I wouldnt even know how to get my idea to him…but still wondered if as a whole us CFS/ME sufferers might try to pursuade him

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cort May 8, 2009 at 4:31 pm

I’ve thought for years that Dr. Cheney should write a book or publish scientific papers. His ideas are inevitably disseminated in a sketchy manner when he does these lectures. If he wants to get his ideas out to the research community – he is presenting research material, after all – he needs to provide his ideas in a more rigorous format. Writing papers is not easy – he’s not a researcher with all the rigor that that entails – but it’s the only way to have his ideas have the impact he thinks they should.

Patient’s think Dr. Cheney is central to ME/CFS discourse but he’s really an outlier, right now, on research issues. None of the well-known names in the field (Peterson, Lapp, Bell, Holtorf, Klimas, ???) have taken up his theory of diastolic dysfunction. As a physician I think he’s had a big impact on treatment regimes but his ideas regarding the heart seem to have fallen a little flat in the CFS community.

He needs to present his ideas in a more organized and complete fashion. He doesn’t have to do a placebo controlled double-blinded study to do that; he could simply submit a paper to the journal – who’s name escapes me – that devotes itself to medical theories. Ashok Gupta – not a doctor – and a newcomer on the scene, did that five years ago with his theory of Amygdala activation. So did a parent of a child with ME/CFS on hydrogen sulfide and ME/CFS. She doesn’t have any medical or research degrees! She simply has a coherent, plausible and very well documented theory. It flabbergasts me, really, that Cheney has never taken that simple step.

He is opening up two websites, though; one on his research and one on his clinical work and you can sign up to get e-mails from both. The address is listed in the original blog.

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chris May 8, 2009 at 8:33 pm

It certainly is not clear what Cheney is trying to do with these lectures.

Perhaps they allow him to clarify his concepts to himself in front of a receptive audience. Perhaps they are designed to recruit patients and spread the word at a grass roots level.

The treatment aspects of his theories are tantalizing. One wants to know more, but he is unwilling to provide it. And he doesn’t seem to be overly concerned that others, physicians and researchers, have not tagged onto his ideas.

Perhaps he is just being patient, and feels that things will come his way in time. After all he is extremely busy and how is one supposed to advertise oneself at the same time? Certainly he has been at this effort for a long time, and he must have his own set of rearranged priorities since he almost died a few years back.

He seems wonderfully detached when he gives these lectures – and remarkably involved at the same time.

I think he is concerned that if he gives out too much information, patients will try these treatments in an unguided fashion – and he knows this will cause problems. I think he asks his patients not to discuss his treatments outside of his office.

This conundrum with Cheney has been going on for the seven years that I have known of him.

Chris

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cort May 10, 2009 at 5:52 am

It is not an easy situation. Dr. Peterson bemoans the fact that he didn’t step into the research arena more fully – but he was always taking care of patients – and of course Dr. Cheney has that health problem to deal with. Still this is his life’s work – as he says – and doing papers or writing a book could expand his impact greatly. I’d be surprised if he does at this point – he hasn’t for 25 years – but he is starting up those websites so it sounds like he’ll be presenting information in a more organized fashion.

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miguel May 19, 2009 at 3:49 pm

I find it very interesting that Dr. Cheney has converged on a treatment plan that is fundamentally antimicrobial in nature and that mirrors components of the treatment for Babesia used by some Lyme MD’s. Could it be that he is inadvertently treating a subset of Lyme disease associated co-infections?

Artesunate – used to treat malaria and the common Lyme co-infection, Babesia.
Probiotics and herbal antimicrobials – also used by LLMDs to maintain or normalize gut flora as well as to strengthen immunity.
Glucose – used by folks at Cpn.com, which includes some Lymies, to reduce cellular secondary porphyria resulting from Jarisch-Herxheimer reactions.
DHEA – used by many Lyme MDs to assist with deficiencies in this hormone as well as to strengthen immune response.

If you find this connection intriguing you may want to listen to a recent interview with Dr. Samuel Shor on the Diane Rehms show. Apparently, he believes that a significant proportion of his CFS patients are actually suffering from Lyme disease (or associated co-infections) and that 80% (if I remember correctly) improve significantly after a year of appropriate treatment (sometimes longer). I am personally not invested in any single explanation of CFS as I suspect this is a multifactorial disease (with infection at it’s core), but the practical/clinical similarity between the two approaches (LLMD’s and Cheney) really makes me wonder.

I am also intrigued by the seemingly negative effects of nutrients such as CoQ10 and glutathione, as noted by Dr. Cheney. If one embraces the theory that obligate intracellular pathogens can hamper mitochondrial function by depleting the cell of essential nutrients (methylation?), and can overwhelm cellular detoxification by the release of toxins, is it then not possible that the initial seemingly negative response to nutrients such as CoQ10 or glutathione might in essence be a Jarish-Herxheimer reaction stemming from improved immunity and concomitant pathogen response? I certainly don’t have any answers but I would be curious to know if there are any thoughts on this out there. Perhaps Cheney has considered this possibility.

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Rich Van Konynenburg May 20, 2009 at 5:52 pm

I have a very high regard for Dr. Cheney, have enjoyed our interactions, and have learned a great deal from him.

Ironically, my interest in glutathione depletion in CFS, which is now part of the Glutathione Depletion–Methylation Cycle Block hypothesis that I have proposed to explain the pathogenesis of CFS, was initially stimulated by Dr. Cheney’s public talks in 1999, in which he reported that glutathione depletion was nearly universal in his patients. His views about glutathione in CFS today are quite different from what they were 10 years ago. My opinion is that he was closer to the truth about glutathione back then than he is today, and I have expressed this to him.

I would like to clarify one point in your writeup, Cort, and that is that the methyl form of B12 (methylcobalamin) is not part of the simplified treatment approach that I have proposed for lifting the methylation cycle block in CFS. Rather, I have suggested that hydroxocobalamin be used. I will note, though, that methylcobalamin is part of the treatment that Dr. Amy Yasko recommends for some people with CFS, depending on their particular genetic makeup. Methylcobalamin is also used by many of the DAN! doctors, who treat autistic patients. I have been cautious about suggesting methylcobalamin, particularly at high dosages, because of its chemical ability to convert inorganic mercury into methyl mercury, which can readily cross the blood-brain barrier. Many PWCs have significant amounts of inorganic mercury in their bodies, which originated from evaporation of metallic mercury from amalgam fillings in their teeth and inhalation of it. While glutathione is depleted, this mercury builds up in the body, because glutathione is necessary to take it out.

I would also like to comment on Dr. Cheney’s current use of the echocardiograph to determine which substances are beneficial and which are harmful to CFS patients.

As I understand it, Dr. Cheney applies substances to the skin of patients using
a transdermal gel, while monitoring the IVRT (isovolumetric relaxation time, the
time between the closing of the aortic valve and the opening of the mitral valve
of the heart). In the case of oxygen, I think he uses a mask to apply it. He
observes changes in the IVRT within a minute or a few minutes after applying
each substance. The IVRT is a measure of the degree of diastolic dysfunction of the patient. If the IVRT decreases, he interprets that to mean that the
substance is beneficial, and vice versa.

I think these are interesting measurements, but I disagree with his
interpretation of them. Diastolic dysfunction is caused by a low rate of supply of ATP to the heart muscle fibers, which slows their relaxation during the blood filling part of the heart’s cycle. I believe that his measurements actually reflect the
rate of supply of ATP to the heart muscle fibers. When the ATP is available at a
faster rate, the heart muscle can relax faster, and that allows it to fill with
more blood, which decreases the diastolic dysfunction in these patients, and
vice versa. In my opinion, it is not valid to conclude on the basis of the ATP
response in a minute or a few minutes what the longer term effect of a substance
will be, because the biochemistry can undergo many changes between the time of a
minute and a treatment of a few months. In fact, we want it to change, because it is operating abnormally in CFS.

For example, Dr. Cheney has concluded that the simultaneous application of
methyl B12 and FolaPro is deleterious, on the basis of the early response of
IVRT to them. However, these treatments have been found to be beneficial over
longer times, in both CFS and autism. What is the explanation for this?

I suspect that when they are both given to a person who has a partial block in their methylation cycle, as most PWCs appear to have, based on testing so far, they give a boost to the activity of methionine synthase, which then converts homocysteine to methionine at a faster rate. That in turn probably causes more methionine to react with ATP to produce SAMe. That would lower the supply of ATP, and that is likely what causes the worsened diastolic dysfunction on the time scale of minutes.

However, over longer times, these substances lift the methylation cycle block
and restore the levels of glutathione. That in turn can be expected to lower the
concentrations of reactive oxygen species in the mitochondria, and lift the
partial block of aconitase in the Krebs cycle as well as the partial block in
the respiratory chain. The result will be a higher rate of production of ATP,
which will actually improve the function of the heart muscle and will lower the
diastolic dysfunction. So the timescale over which he is measuring is very
important.

I haven’t looked into the biochemistry of the other substances Dr. Cheney has
tested, but I would venture to say that looking at the earliest events and their
initial effects on ATP would explain the results he observes. However, the
long-term effects of the substances would be another matter. I have expressed
this view to Dr. Cheney, and we continue to interact in a common effort to try to understand CFS and how best to treat it.

Rich Van Konynenburg, Ph.D.

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Hugh May 21, 2009 at 4:23 pm

As a long time sufferer of CIFIDS/fibro, I agree that Cheney’s prior stabce on whey protein, and glutathione seem much more accurate.
I myself was completely disabled by the illness for a number of years, and the opnly thing that restored my health was increasing my intr-cellular glutathione levels with whet protein.
I have recovered to at least 95% of my former functioning, and have been able to return to a full life including work, running 10Ks. lifting weights, and all of the other things I was unable to do for many years.
The only modality I used was the glutathione restoration after many years of trying everything anyone told me would help, with little to show.
I do think that many folks who initailly react poorly to whey are experiencing a Herxheimers type reaction, or some detox of residue, and will eventually come through if they reduce their dose, and perservere.

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cort June 2, 2009 at 6:52 pm

Congratulations Hugh on your amazing recovery. I hope to open a treatment assessment program on the website and hope you’ll chime in with your experiences. Alot of people have tried whey, of course. Do you think you did anything differently? Was there a certain type of whey that worked for you? Anything you want to pass on? It’s great to hear of such a thorough recovery. It gives one hope.

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Maey Jane June 2, 2009 at 3:47 pm

Hi All,
Well, I have the “real” scoop on the stem cell treatment that Cheneys patients went through. The first of 2 patients was my best friend.
I sent her to Cheney, as I was a patient of his prior to his transplant. Im telling you it worked! If I didnt use my life savings on Cheney when he was still screwing around on his other protocals I would do it myself. The transfusion of cells cost 17k, soes not include Cheneys bill or travel.

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cort June 2, 2009 at 6:55 pm

Interesting – Do tell more…..How much did it work? How well is she/he? How long since they got the transfusions. (Why are these esoteric treatments always so frigging expensive?).

I went bankrupt after seeing Cheney. I’m sure I’m not the only one altho I must say he merely hurried on a process that was inevitable anyway.

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Beady June 4, 2009 at 3:30 am

Is Cheney still using Oxygen therapy or not? If no – does anybody know the reason why he stopped using it?

The transdermal gel he is using… Does anybody know what kind of gel this is? Name?

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christine June 7, 2009 at 9:55 am

I too was rather shocked to read that Dr. Cheney now is discouraging the use of Co Q10, methyl B12 and d-ribose, although my own experience was that d-ribose seemed almost to act as a neuro-toxin. However, I took fairly high doses of CoQ10 for years — until about three years ago, my nervous system suddenly could not tolerate it. Even tiny doses now make me too edgy, so I have had to give it up totally. I am now almost totally bedridden, and have alot of heart pain and shortness of breath on any exertion. I know that Co Q10 was definitely helping my heart in past years, and I think my heart has really suffered for the lack of it.

I think it is a very individual decision whether to stay on it or not. If it seems to be helping you, it makes sense (to me, anyway), to continue it.

Has anyone tried low dose oxygen, and has it helped with cardiac symptoms?

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christine June 10, 2009 at 9:46 am

Cort, do you know whether Artesunate is effective against EBV? I have chronic active EBV and HHV6, and recently started to take this.

Thanks,
Christine

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kw7590 June 16, 2009 at 6:30 am

It is strange to me that Cheney talks about how great Artesunate works and yet I have not found one person who has tried it and had any success. If there was one, I would love to give it a try as I have nothing to lose, except more $$.

Are there so few patients and/or do they not post on any of the cfs sites? I don’t think Cheney realizes how frustrating it is to read all his protocols and then find no patients that got any help to correspond with (notwithstanding the very interesting post here about stem cells).

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Susan July 12, 2009 at 2:09 pm

Have spent the past two hours , reading online with a pillow behind my neck, catching up since P. Cheney, MD’s lecture in VA.
I, too was a longterm former patient at his various clinic locations in NC thru the years. As a medical professional, I had gradual onset in early 1990′s. Before he diagnosed me in 1995. I tried with some benefit, a nutritionist for two years and acupuncture and Chinese herbs. This approach gave me increased stamina; strength to work part time til the final big crash. I faithfully followed his clinic protocols for many years, without improvement physically, but maintaining hope, which was an expensive commodity. All those visits before his heart surgery, took its toll, having to claim bankruptcy. Of course, I could not continue at the clinic when he started back up. My respect for him has not changed, but having my medical background and living in a patient role , chronically weak and in pain: Any new treatments, unless available through a local MD, without medical insurance, is not an option for me. My energy is in living or ‘being’ as stress -reduced lifestyle as possible and take basic nutrition and supplements, as one blogger wrote, from the education previously learned during the earlier clinic days. And in my case of cfids/me, I believe it is neuro/endocrine basic dysfunction or HPA axis as his earlier pyramid indicated. I just have been sick and tired for too long to attempt to learn or understand his new strategies. One day at a time, striving for quality in the moment and be grateful for what function remains. Susan

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Carolyn July 16, 2009 at 7:38 am

Artesunate is being used by some doctors to treat babesia [in the malaria family]. My own Lyme disease doctor in UK also told me that it may have some activity against the cyst form of borrelia: I have some and am due to start it after I have used up my Artemisia.

Given that many people with an ME/CFS diagnosis are going on to find much later that they have Lyme disease [and often babesia, bartonella, ehrlichia or other tick-borne infections], it is no surprise to me that Artesunate may have some activity.

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christine July 17, 2009 at 7:01 am

In February I tested positive for HHV6 and EBV (my illness began with mono 9 years ago), and my sed. rate (in Feb. 09) was 13. I’ve been on the artesunate now since early June, and just got lab results back: my sed rate is now 2 (the range is 0 – 20). I can’t say for sure, but my feeling is that the artesunate is responsible for this positive change. I am also feeling a bit stronger, able to do a bit more.

Christine

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rob July 17, 2009 at 1:57 pm

Cheney just seems to be a money man. I cannot understand how he gets all the respect he does

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Dale July 20, 2009 at 6:28 pm

What thoughts does anyone have regarding Dr. Cheney’s comments:
“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 the way.

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 CSF’s 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

The question is: What about all these different supplements and treatments that most have taken for long periods. Do we have to take a treatment protocol for 10 years until our body “gets it” and moves to a new gene expression? How can anyone really know if what they are doing is working, or maybe it’s working, but the body hasn’t understood it?

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Emmie Gorrell July 21, 2009 at 1:39 am

Hi- It’s almost 5:30 am here in South Carolina, but, without meds, I don’t sleep at night. I’ll put on my C-PAP mask in order to get more oxygen into my system. Before that, I’ll take my Klonopin, Seroquel, Magnesium, Calcium, and Fish Oil.
I am very impressed by the information that I’ve read here at the site. I can’t take anything more in at this point, but I really feel that the “sub-types” theory makes a whole lot of sense to me. I’ve always felt that the HPA axis was going to be proven to be involved, and I feel sure that mitochondria is, as well, which is really interesting to me, because my maternal grandfather’s mother had mitochondrial disease(they always thought she died of Typhus- now, I wonder) and passed it on to different daughters, then they to granddaughters, etc. In other words, there’s a WHOLE lot of mitochondrial disease in that part of my family. The only thing is that it can supposedly only be passed down by the mother, which would rule out my mother having had it passed on to her, since it was her paternal gmother who had it, and from what is known, he could not have passed it along. But a neurologist who was terrific and treated me until he decided to leave here and go to Tennessee to start his own practice, thought that there was a possibility that I had mitochondrial disease. He tested my muscles-I forget the name of that test- I’m sure that y’all know it- and decided that I didn’t have it. I have pretty well lost faith in a marker and any kind of real “cure” happening in my lifetime, but I surely do hope that it does for this upcoming generation. It would be tragic if it weren’t. I do know that I was born without an immune system, as I was born very, very sick, couldn’t keep anything down, had a rash inside and outside my body, couldn’t even wear a diaper or be held. The same neurologist who I greatly respect and miss, told me that an infant develops their immune system in those first six weeks of life, the same six weeks that I was so very ill. He told me that I never developed an immune system.
I have an illness, “Empty Cella Syndrome” in my pituitary area. They discovered that years ago, when they x-rayed me, etc., after a car accident. That intrigues me because of the HPA axis theory. I do know that there have been times, not a lot, but a few, when I’ve had to have antibiotic treatments, and felt like that helped my whole system, including the CFS/ME, for at least a little while. I know that Kim Snyder, who has CFS/ME herself and created the award winning documentary, “The Me That Used To Be,” feels that our CNS have what basically constitutes an infarction. And that taking only “baby steps” when able, is the way to treat oneself, rather than the pushing, exercise, etc., that only puts me back in bed for an extended period of time. Anyway, I wanted to thank all of you. This has been a very interesting night, reading what I could of your posts and some articles. I, too, thought that Dr. Cheney was THE doctor and had just told my sister, who always wants to know more about this disease, that if she saw anything that was done by or written by Dr. Cheney, she could believe it. Now, I am of a completely different opinion, which actually makes me very sad. I think I believed that he was going to be the one to solve this labyrinth and help us all before it was too late. Take good care and I am so very glad that I found this site and your intelligent posts.

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cort July 21, 2009 at 10:37 am

Hi Emmie, Don’t give up hope. Dr Cheney may or may not provide the answer (he does believe his
new

stem cell therapy is something special but that has just gotten going) but keep your eyes on the Whittemore-Peterson Institute and the amazing recovery story using a new treatment procedure that you can find on this blog as well. Good luck with everything!

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CFS/ME97 July 23, 2009 at 2:36 pm

re: Maey Jane posted on 06.02.09 at 3:47 pm

” Hi All,
Well, I have the “real” scoop on the stem cell treatment that Cheneys patients went through. The first of 2 patients was my best friend.
I sent her to Cheney, as I was a patient of his prior to his transplant. Im telling you it worked! If I didnt use my life savings on Cheney when he was still screwing around on his other protocals I would do it myself. The transfusion of cells cost 17k, soes not include Cheneys bill or travel.”

Maey Jane,
Would your best friend be willing to share some details of her treatment, particularly with regard to the Artesunate dosing and the supplements and protocol used for restoring GIT ecology. These are two areas where we could self treat, but as Chris has posted earlier: “I am surprised that there is no current Cheney patient who might suggest further details.”

Cort posted with regard to Cheney ” His ideas are inevitably disseminated in a sketchy manner when he does these lectures. If he wants to get his ideas out to the research community – he is presenting research material, after all – he needs to provide his ideas in a more rigorous format.”

chris 05.08.09 at 8:33 pm posted

“It certainly is not clear what Cheney is trying to do with these lectures.

Perhaps they allow him to clarify his concepts to himself in front of a receptive audience. Perhaps they are designed to recruit patients and spread the word at a grass roots level.

The treatment aspects of his theories are tantalizing. One wants to know more, but he is unwilling to provide it.

I have Cheney’s 2009 DVD lecture and while he gives you all this impressive information to support his hypothesis, he omits the the all important information about the dosing and exact protocols followed, which in effect leads one to feel that it’s a case of ” I have the answer but you have to come and see me if you want the cure!” Just enough information to tantalize one, but not enough to be of any practical use. He knows full well that the great majority of CFS/ME patients have exhausted their funds trying out every treatment that they could lay their hands on, and now cannot afford to see him. All research articles in credible journals give you ALL the details of the study, not just selective parts. Thats the basis of peer review. If the research is scientific anyone should be able to replicate the results. I am not going to say that Cheney is a snake oil salesman because he isn’t, but his presentation sure follows the same lines as one. Why does he even bother to give a presentation which is absolutely of no use to anyone unless they go to see him?”

Chris also posted this: ” I think he is concerned that if he gives out too much information, patients will try these treatments in an unguided fashion – and he knows this will cause problems. I think he asks his patients not to discuss his treatments outside of his office.”

The truth is that CFS/ME patients grasp at every straw that they think might help them to restore their health and resume a normal life, and Cheney actually increases the risk of improper treatment by not disclosing all the facts.
In his lecture he says the Artesunate is the central feature of his therapeutic program today, with great tolerance and safety: he also says that you cannot have a chronic illness without a gut bacterial problem. So if he is giving these presentations to help us why does he not actually help us by giving us the information that we need to use his findings? You don’t need echocardiography to correct gut ecology and if the Artesunate is as useful as he says, with little danger, you don’t need an echocardiogram for that either.

Comments from others on previous postings on this topic echo my sentiments, so I know that my frustration with with Cheney’s presentation is shared by others.

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Orpaix July 26, 2009 at 3:37 pm

I just want to thank everyone who has posted the very interesting comments and reflections above! It is so nice to have found this site this evening! I was myself very influenced by Dr Cheney’s theories. He influenced me to try Whey-protein, which I always find to improve my health a little bit. On the other hand I want to warn others about klonopin (clonazepam), which I started to take because of being convinced by Cheneys theories on it’s beneficiary effect on pwc’s – along with his affirmations that if one only took what made one stronger and more energetic there was no risk of developing tolerance. Slowly I did develop tolerance though and it took me several years before I was finally able to go of it. After having taken the last bit of pill it took me another 10 months before feeling recovered from the bad withdraval symptoms. It would be interesting to know if Dr Cheney has discussed the tolerance problems of the benzodiazepines lately, since I reacted on the information that he warns against the, in my view and experience, mild and positive whey-protein, while he is still promoting the use of an, in my eyes and experience, very dangerous and sinister benzodiazepine.

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Dan August 16, 2009 at 5:49 pm

Thanks for bringing up the Klonopin issue Orpaix. I too went on klonopin, reluctantly, but it did help, and after reading Cheney’s endorsement of it, and especially his claim that it’s not addictive (which I think is just semantics…habituating/addictive…to me is the same difference).

I didn’t find out until 3 years later (from a non-doctor friend) that klonopin is the only benzo with the possibility of causing anemia, neutropenia (low white blood cell counts) and leukopenia.

I just wonder if this magical drug has actually made thousands of us stay sicker longer?

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Harry September 21, 2009 at 1:31 am

I am a current Cheney patient,following his protocols and feeling much more human after a bout w/ cancer and chemo.

He is not changing his mind as to what nutracuitical/vitamin/whatever he has used in the past. He is using IRVT results so that patients determine what works and what doesn’t. We make those decisions for him!

I admire him for having the guts to admit certain types of things have not worked. Backed up by his reasearch, and his large mental abilities, he doesn’t mind saying he was wrong. Not many doctors are intelligent or brave enough to go that route.

As well, he is a kind and thoughtful person whom I personally like very much.

I quit Klonopin for 2 years during my cancer illness,and had no bad effects from it. Now back on a small dose. So, the tales of it being seriously addictive may be seriously over-blown.

I’ve had CFIDS for 27 years, recall when it wasn’t even an illness per se, and since that time,due to one life process after another, have added a phone book’s worth of MDs to my ‘to see’ list. Of all of them, he is the one on whom I depend because,quite frankly,he’s the brightest of the lot.

Yes, he’s expensive. He does a lot of testing. He gives a yearly comprhensive physical. Goes over your list of meds, often explaining why or why not they are good for a PWC. With most docs, a good half hour is the time limit on an appointment. His are longer so he can explain what your tests show, and how bad results can be treated. He answers any and all questions. A PWC does well to have a recorder with them, all that info doesn’t sink in to a CFIDS brain.

I understand why he doesn’t give long lists of his treatments. Most docs don’t want to follow what other docs proscribe. In fact, many won’t even do the magnesium and B-12 shots. If anyone can find a co-operative doc,grab them and do some web research. But his regular patients now get weekly updates on research,often tweaking our various protocols. No, we are not cured. But we have great faith and great hopes from our association with this man.

And so, to bed.

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SamG October 14, 2009 at 12:18 pm

I’ve been/am a patient also of Cheney’s for years and he does give specific practical suggestions to each patient. Not a cure, for there is none as we all know, but better sleep, better functioning, fewer crashes/relapses if things work. The stem cell approach is interesting for those who are interested in that venture. And who are appropriate for it, too.
The protocols have similarities but vary from patient to patient. So other than the list you have above which seems pretty exhaustive, I don’t know how you’d come up with any given protocol for mass use. It wouldn’t work that I see. For example, with me, essential is a beta-blocker because I have POTS–but not all patients take a beta-blocker by any means and Cheney wasn’t the one who started me on that anyway, nor has he ever written a script for that for me, but is aware that I take it—my PCP started me with the beta-bloker when I first got sick—and after a variety of cardiac tests (I take less than I used to take thanks to the mag/taurine injections) and I know that the beta-blocker kicks out CoQ10 so I still take that. B12, yeah. Klonopin at night, yes, same low dose I started with. I’m under no illusion that I could just stop that or stop it easily nor would I try. That is a med that one must over time wean off of. Sometimes, it’s more difficult for some people than others. Depends on person and dose.
Re: the cost—it’s up to the patient (and patient advocate)—I always have a family member with me. Upfront the time can be set, etc. so that it is affordable. I try to streamline what works best for me or what might work or what I would be willing to try or what seems to address my most pressing problems. Never been for having a cabinet full of stuff to take. Keep it simple, pace myself, consider what Cheney says (and others) and take it from there.
If so inclined re: specific protocols (for yourself, for example) a consult with Cheney is possible as far as I know. But a consultation makes sense from any medical doctor in terms of bio-ethics. Especially in an illness in which a novel retrovirus is involved somehow, where a doctor first wants to do no harm, and where, really, the treatments are experimental (with any physician at this point.) It’s just sad that our gov’t turned away from this illness and left it in the hands of patients alone and researcher/practitioners who have gone it alone (and together) at much personal cost. My gosh, though, look what has happened with CFS/ME in Britain in general. Awful. We’re not in that situation here.
Research should move on this fast now that CFIDS has connection to a retrovirus that has connection to an aggressive form of prostate cancer. If anything should shove the research forward that would be it. That and concern for the blood supply, etc.
Otherwise, be smart—stay away from fruited yogurt; go with the plain stuff (Oikos–a Greek yogurt) is one my dad’s PCP recommended to him and is similar to the goat’s milk Kefir (PLAIN) that I drink that Whole Foods carries. Green drinks–dark green– ( juicing is back it seems) only take care with fruits (many have too much sugar.) Oprah even has a good green drink recipe on her site. I’ve read much on Mercola’s site re: green drinks, coconut oil use for cooking. I wouldn’t/couldn’t go as raw as Mercola advocates on his site, but with juicing, I can manage the foods I’d miss otherwise.
Hey, a consultation with Cheney is open to folks as far as I know and the time is set by you. I’ve never seen him insensitive to money concerns if he’s told about them especially. Which I’ve done a number of times and get respect on that.

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jake November 13, 2009 at 12:53 pm

CFS is a viral infection of the brain which infects the mitachondria disrupting the way the body metabolizes oxygen which in turn puts the body in a state of continual oxidative stress.All of the symptoms associated with CFS can be caused by the body`s inability to metabolize oxygen.Not convinced.Go to Google then look up the following:Viral brain infection,Mitachondrial dysfunction,Oxidative stress,Krebs cycle. Good Luck!

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Erik Johnson November 16, 2009 at 12:14 pm

I was a patient of Dr Cheney’s in 1984 before the Truckee teacher cohort and the Incline Village girls basketball team became ill with the “Tahoe mystery illness”.
I had seen about ten doctors, and Dr Cheney was virtually the only one who DIDN’T tell me, “It’s All In Your Head”.
He had no idea what was wrong with me, and told me he had never seen anything like this before, but unlike all other doctors, Dr Cheney always made it very clear that he was taking my illnesss extremely seriously and was determined to find out what it was.

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Renee November 27, 2009 at 3:10 pm

Does anyone know exactly what Dr. Cheney uses for herbal antimicrobials for the gut?

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Lisa Schicht November 27, 2009 at 5:22 pm

I have been seeing Dr. Cheney for the past 2/1/2 years, and although I am far from well, I am much stronger, and have made progress on his protocols of the Cell Signaling factors, b12 taurine magnesium shots, and am able to be vertical much more than I ever was. I take the artesunate, and I do feel I am doing better on it. I am really glad I went to see him, because I have had the CFIDS for 19 years now, and I wasn’t turning around. I am not sure I can afford the stem cell therapy, but I do admire Dr. Cheney for trying new things, and its hard to know whether he is right or wrong about everything, but he does keep trying. I do wish the CSF’s were more available for more patients, I think they do help. However, I do think that if we have a retrovirus, like the xmrv we may need something much stronger than all the natural therapies. When I first saw Dr. Cheney he told me he really did believe some virus was involved, that was mutated possibly from a retrovirus, and I know he was disappointed at how the research turned out at that time. I am sure he is ecstatic about this new research, on xmrv and many of his patients are getting tested, I am awaiting the results. I think he is focused as much on treatment as research, and doing as much as he can now…for us with so little understanding of the real cause of this illness. When I have had my echocardiogram its amazing to see the oxygen toxicity disappear after the exposure to the artesunate protocol, so I think its creating an environment less conducive to many viruses, and hopefully also xmrv.

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MARY September 15, 2010 at 11:13 am

i have had cfs since 2000. i have discovered that if i eat a lot of sugar, processed foods, i have a flare up. having my teeth cleaned will cause a flare up. i do not consume caffeine, that helps with sleep. i do take a calcium, magnesium , zinc supplement. i also sometimes take black cohash to aid sleep. the sleep seems to e a key factor. and the magnesium seems to be key. and eating a lot of fresh fruits and vegetables seems tohelp a lot..i grow a lot of my own organically, and believe that cfs has a huge chemical component due to pesticides ……

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