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Q&A Session with ME/CFS Research Expert Suzanne Vernon, PhD – December 5, 2008

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Suzanne VernonWelcome to ProHealth’s Live Chat with Suzanne Vernon, PhD, Scientific Director of the CFIDS Association of America.

Formerly a top ME/CFS scientist with the CDC, Dr. Suzanne Vernon is now charting a new global ME/CFS research & funding trajectory with the CFIDS Association. The culmination of her first year on the job – announced just days ago – was the launch of an unprecedented research program to help identify biomarkers that will improve diagnosis and treatment of ME/CFS. [See “Breaking News! CFIDS Association Funds Largest-Ever CFS Research Initiative.”]

Here, Dr. Vernon answers questions about ME/CFS research, funding, & science policy; causes, diagnosis, genetics & subtypes, treatments; and the new crop of research studies for 2009. With questions from scores of participants, she regrets not being able to answer all. But – as these projects get off the ground – she promises to provide more detail, and updates in months to come.

Welcome, Dr. Vernon!

Dr. Vernon: Hello, all. I would like to thank ProHealth for the invitation, and the opportunity to chat about CFS research in general and the exciting studies the CFIDS Association will fund. And thank you for being here.

* * * *

Q: Hello, Dr. Vernon. Congratulations on reaching your funding goals, and on all of your planned research projects! I wonder, can you tell us – CFS was identified more than 20 years ago. What has 20 years of research gotten us?

Dr. Vernon: There are more than 5,000 peer reviewed articles in the biomedical literature that tell us a lot about the epidemiology and the biology of CFS. Epidemiology is the study of the factors that are related to health and disease.

And for CFS, the first step was to define it. Because we have a CFS case definition, we now know that it affects as many as 4 million people in the U.S. We also know that woman are more likely to get CFS than men (although men get it), and the CFS is characterized more frequently in adults (although children get it).

By studying individuals and populations, we’ve learned a lot about the biology of CFS, including what can trigger CFS (e.g., infection) and what happens to the immune and endocrine systems, the autonomic nervous system, and the central nervous system. Not all of these systems are perturbed in a person with CFS and this has helped us realize how heterogeneous CFS really is. However, research and clinical information about the system(s) affected has helped health care providers guide treatment.

* * * *

Q: The 10 important biology discoveries of CFS that Dr. Komaroff and you have summarized seem to explain what is going on in a person. Why isn’t this information used for diagnosis and treatment?

Dr. Vernon: There is no good reason why this information has not been effectively harnessed in order to develop objective diagnostic test(s) and targeted treatment for CFS. The scientific expertise and technology exists. Yet less than $10 million a year is dedicated to a major public health illness that affects at least 4 million people and costs the U.S. economy at least $18 billion a year.

In good or bad economic times, this just doesn’t make good sense no matter how you look at it. So who is responsible for the fact that we don’t have what we need to diagnose and treat CFS? Well … we all are. There must be an investment by the Federal government to conduct the type of research that will lead to objective tests for diagnosis and treatment.

There must be expansion, collaboration and coordination of scientists to conduct high quality research that will lead to objective tests for diagnosis and treatment. There must be the translation of this research to the medical community.

Finally and most importantly, the patient community must come together and demand this investment from the Federal government in their health.

* * * *

Q: Why isn’t there a diagnostic test for CFS?

Dr. Vernon: CFS is a complex, multi system illness that has no known or as yet detected lesion (abnormal or damaged tissue), so researchers have relied on the blood to provide clues for the pathophysiology and diagnosis of CFS.

Unlike a disease such as thyroid disease where measuring one hormone in the blood is diagnostic, there has not been a similar “one” thing found in the blood for CFS. Remember that the 10 important biology discoveries indicate a number of different body systems are affected in people with CFS.

I am hopeful that a combination of blood markers can be used to develop objective diagnostic tests for CFS.

* * * *

Q: Can CFS subtypes be identified?

Dr. Vernon: Yes. The idea of subtypes has been around since 1994 when the international CFS criteria were published. This international group recommended using stratification strategies such as onset type (e.g., sudden or gradual) to identify patient subtypes.

Several studies are published showing that CFS subtypes can be identified – based on symptoms only, based on a combination of symptom & blood markers, and on gene expression markers that delineate subtypes & describe aspects of the illness process.

* * * *

Q: How many different CFS subtypes are there?

Dr. Vernon: Using a subtype identification approach based solely on symptoms, investigators have found at least 4 CFS subtypes (e.g., musculoskeletal, infectious, neurological, and combinations of these).

When symptoms and biologic markers are combined or blood gene expression is used, at least 7 CFS subtypes have been identified. Subtypes can help guide treatment and also provide clues to what caused the CFS.

* * * *

Q: Are there currently tests our Drs. can use for putting us in these subgroups for more efficient treatment?

Dr. Vernon: Not clinically available, but I hope that within a few years these should be. The future is personalized medicine.

* * * *

Q: What continues to amaze me is the variation between the patients, but yet there must be some common disease mechanism. Could you in this point in time pinpoint where the problem lies – autoimmunity, neurological problem or heart, circulation issues etc.?

Dr. Vernon: Several years ago when I was still at CDC, Dr. Francis Collins gave a lecture on the human genome. He told us that if we really wanted to know how well and how long we’d live, just look back at your family medical history. Genes and their activity put in the context of our environment and behavior determine our health.

For CFS, there is evidence for genetic vulnerability particularly in genes that affect the function of the immune system and the HPA (hypothalamic-pituitary-adrenal) axis. Both these systems are essential for maintaining body homeostasis or balance.

Throughout life, our bodies encounter and are loaded up with stressful events (infection, trauma, etc). Genetic vulnerability in CFS could mean the immune system & HPA axis can’t handle as much of these events as someone without the vulnerability.

For some people, it can be an accumulated series of events that results in CFS and for others it can be just one. CFS is ultimately described as immune dysregulation and neuroendocrine disturbance. My bias is that:

• Infection is key to initiating/triggering CFS

• And the immune system is central to sustaining CFS.

* * * *

Q: Any idea on if and when the FDA will approve Ampligen?

Dr. Vernon: No. This is still under review.

* * * *

Q: Drugs like valacyclovir are too expensive to try. Are there options for treatments for those without insurance? [Valacyclovir, brand name Valtrex, is an antiviral drug that is active against the herpesvirus family including Epstein-Barr]

Dr. Vernon: No.

* * * *

Q: Do you think valacyclovir would be worth trying in all patients with long term CFS?

Dr. Vernon: No. Not all CFS is triggered by EBV or viruses that can be treated with Valtrex. As with any antimicrobial drug, there is the possibility of the agent developing resistance. It is possible for EBV to develop resistance to antivirals such as Valtrex.

* * * *

Q: Do you believe gene silencing could have a therapeutic potential in CFS?

Dr. Vernon: RNA interference is very promising – but at this point we would not know what to silence in CFS.

* * * *

Q: Don’t you think hormones play a big factor?

Dr. Vernon: Yes. Hormones are critical in modulating the immune response.

* * * *

Q: Is there any recently published research that you would particularly recommend that we bring to Drs. who are not very knowledgeable about the physiological findings in CFS patients?

Dr. Vernon: It is best to refer them to websites such as the CFIDS Association’s information for health care professionals or the CDC’s Chronic Fatigue Syndrome resources for healthcare professionals.

* * * *

Q: Your thoughts on the new virus that Dr. Mikovits at Whittemore-Peterson says they’ve identified “that may cause CFS?” Is that just for a subset? Or?

Dr. Vernon: There is a research going on now to determine that. But the details on this work have not yet been made publicly available so I cannot comment.

* * * *

Q: I know you work with CFS directly, but do you know if CFS is linked to Fibromyalgia?

Dr. Vernon: Research has demonstrated distinct mechanisms for CFS versus Fibromyalgia – even though some of the symptoms are shared. The exact biologic links are not known.

* * * *

Q: OK, so there is no concrete link yet between the two?

Dr. Vernon: Correct.

* * * *

Q: On the subject of ME/CFS policy, how do the CFIDS Association or other CFS groups plan to deal with the new Administration in Washington, including the new Secretary of Health, Tom Daschle? Any way to use CFS advocate connections in the House to get Obama’s attention? Or?

Dr. Vernon: Advocacy doesn’t depend on the Administration. The Association has advocated for the CFS community for the past 17 years and will continue to do so.

But, since health care is a priority for the new Administration, we intend to have advocacy and CFS research policy as priorities for us in 2009.

* * * *

Q: When 80 of us went to Capitol Hill in DC last spring, we got enough signatures from Congress to renew the CFSAC charter. But some senators blew us off. Is there something simple that patients can get behind to encourage more govt support & funding?

Dr. Vernon: 2008 was the first time in my life that I was on Capitol Hill advocating for the CFS community. Most of the congressional staff and members I met were well aware of how devastating an illness CFS is and were well-informed.

This was only possible because of all those lobby days and the 15 years of advocacy by the CFIDS Association. There were some who were not interested -and CFS may never be an issue that they support.

But despite that, we intend to make regular visits to the Hill and to influence legislation to improve government support and funding of CFS aimed at getting the CFS community the objective diagnostic tests and treatment that is desperately needed.

The CFIDS Association website created the Grassroots Action Center for members. The more organized the CFS patient community is, the more effective we can be – and a simple way to organize is to become a member of the Association.

* * * *

Q: The CFIDS Association has recommended establishing Centers of Excellence where people with CFS can go to get treatment and manage their symptoms. Are there any plans to create these?

Dr. Vernon: The topic of Centers of Excellence has been discussed at the CFS Advisory Committee meetings. While there is support for these Centers among the advisors and the research community, we do not yet have support for these from the federal agencies.

* * * *

Q: On the subject of government funding, is the burgeoning Japanese research program government funded, or what? Suddenly they’re right up there with the US & UK. How have they been able to achieve so much?

Dr. Vernon: Dr. Hirohito Kuratsune has studied CFS since the late 1980’s. About 8 years ago, he and Dr. Watanabe met with the Ministry of Education, Culture, Sports, Science and Technology to discuss the importance and impact of fatigue in Japanese society.

They were awarded funding and were designated one of the 21st Century Centers of Excellence for Fatigue Science. Drs. Watanabe and Kuratsune organized more than 50 investigators from 3 institutions to study fatigue. They’ve made great strides relatively quickly because of these two remarkable leaders, an impressive team of clinical investigators and scientists, the latest and most powerful technology and last but not least, government support.

With strong leadership, other countries should be able to do the same.

* * * *

Q: What were the highlights, the most important and meaningful studies/papers of the international conference on fatigue science in Japan? Why is it that we hear so little of the conference in Japan?

Dr. Vernon: The Japanese consider fatigue as an important bio-alarm; without it we could become chronically ill or die. Yet little is known about the mechanisms of fatigue, so this is the focus of their studies – fatigue science.

I thought all the presentations by the Japanese were important; they are making progress in understanding fatigue mechanisms. The Japanese have their own biomedical Journals, but they are publishing more in international ones. [See “Japanese Research on CFS Treatments” – a brief overview of results with some of the treatments they’ve examined, including high dose vitamin C, vitamin B complex, acetylcarnitine, herbal medicine, SSRI & SNRI drugs, and supportive therapies.]

* * * *

Q: There’s been a call for all CFS research studies to indicate which diagnostic criteria were used to select subjects studied. What is your view on this, and which criteria would be used in the studies the CFIDS Association is funding?

Dr. Vernon: The CDC and other CFS investigators around the world have wrestled with case definition issues and believe that ambiguities in the case definition are the reason we don’t have diagnostic markers and better treatment for CFS.

Because CDC is the internationally recognized public health agency, most studies use the 1988 or 1994 (Fukuda) criteria.

In the 21 proposals we reviewed in response to the CFIDS Association RFA, there were a few proposals that proposed using the Canadian criteria, but most use the 1994 criteria.

* * * *

Q: Is the question of diagnostic criteria likely to become more important as you form international research collaboratives?

Dr. Vernon: I would like to be clear that I am responding to a question of case definition rather than diagnostic criteria. No matter where you are in the world, CFS is diagnosed by excluding any medical and psychiatric condition that can explain the fatigue.

I believe we can move away from subjective case definitions that do nothing more than describe symptoms to objective markers that can be used to personalize diagnosis and treatment.

* * * *

Q: Regardless of what might show positive on tests which don’t seem very reliable overall for anything, is it likely most of us have more than one type of infection and more than one virus or bacteria?

Dr. Vernon: It is possible to have dual infections. We have only begun to characterize the viruses and bacteria that we have in our bodies.

* * * *

Q: In terms of Kerr’s genetic subtypes & CDC’s subtype work, etc., is there any one symptom that seems common to all “ME/CFS” at this point? Any unifying thing(s)?

Dr. Vernon: The subtypes described by these groups are not genetic subtypes. The subtypes that Dr. Kerr described are based on differences in peripheral blood gene expression. [See for example “Gene profiling of patients with chronic fatigue syndrome/myalgic encephalomyelitis,” Dec 2008.]

The subtypes that CDC described are based on symptoms and biologic measures including gene expression and genetic polymorphisms. [See for example “Polymorphisms in genes regulating the HPA axis associated with empirically delineated classes of unexplained chronic fatigue,” and “Gene expression profile of empirically delineated classes of unexplained chronic fatigue.”] A “polymorphism” is a difference in the coding information in a gene. What is common to each subtype is fatigue.

Unfortunately, the marker or markers of fatigue (which can be molecules or chemicals, for example) have been elusive. A unifying theme found by both Dr. Kerr and CDC is disturbed cell signaling and cell metabolism.

* * * *

Q: Are you in collaboration with Dr. Kerr at all? If so, are the two of you coming up with similar results?

Dr. Vernon: Dr. Kerr was one of our peer reviewers. And the results that Dr. Kerr and my group generated were very complementary.

* * * *

Q: How long would you guesstimate it will be until we know at least a few of the alleles [alternative forms of genes] that segregate CFS from normals…if everything goes perfectly? A year, two?

Dr. Vernon: Great question. Preliminary studies have been done but larger studies need to be done to get definitive association results. These studies are expensive, but I hope within a few years.

* * * *

Q: I mean, isn’t the next step from gene expression, naturally sequencing misexpressed genes?

Dr. Vernon: That is certainly a strategy, and one that is the basis for the target genetic studies that have been published.

* * * *

Q: Do you have any news regarding Epstein-Barr virus and a link to CFS?

Dr. Vernon: We know that at least 10% of people who get EBV mono don’t recover and develop CFS.

* * * *

Q: On the webinar “The Science of CFS: Past, Present and Future” you said most tests for the different sub-groups in CFS are still only available on a scientific level. Any idea when they will become available in clinical practice? I mean is it like 5 or 10 years? [Note: The video is available for viewing online at http://www.cfids.org/webinar/sciencecfs-video.asp ]

Dr. Vernon: I would like to see us translate this scientific ability to the clinical realm within a few years.

* * * *

Q: The reports from the Viruses in CFS and Post-Viral Fatigue Conference covered so much ground. Did you fund research going forward on any of those fronts?

Dr. Vernon: The CFIDS Association co-sponsored the Viruses in CFS workshop, which was a satellite conference following the International HHV6 Conference. [See “All Presentations from the 2008 Viruses in CFS Conference Can Be Viewed Free Online.”]

The organizing committee did a great job of covering a wide range of topics dealing with viruses and infection and how these are related to CFS including talks on various viruses, immune response to viruses and genomic/genetic influences on infection.

Some of the studies that the Association is funding for 2009 deal with aspects of viral infection and the corresponding immune response. Each of the six studies the Association is funding is a very strong independent proposal.

But what makes this research initiative so exciting is the synergies that exist among the 6 studies. So each study is strong – and when the investigators and information from these studies are integrated, it will be a remarkable research network.

* * * *

Q: Dr. Vernon, as you know patients in the UK especially are concerned about the focus on psychological treatments & exercise rather than biological research. Is the CFIDS Assoc planning to work with researchers in the UK on biological research avenues?

Dr. Vernon: One of my responsibilities as Scientific Director of the CFIDS Association is to foster partnerships. If there is a research being conducted that promises to impact early detection, objective diagnosis, and effective treatment of CFS, I will do what I can to forge and foster a partnership.

* * * *

Q: What is your take on the touchy subject of cognitive behavioral therapy (CBT), since a number of respected clinical researchers believe it can help symptoms?

Dr. Vernon: A Cochrane Review paper was just published that reviewed CBT for CFS in 15 studies that included 1,043 CFS participants. (“Cognitive behaviour therapy for chronic fatigue syndrome in adults,” by JR Price, et al.)

The conclusion of this review is that CBT is effective in reducing the symptoms of fatigue at post-treatment compared with usual care, and may be more effective in reducing fatigue symptoms compared with other psychological therapies.

However, there was a lack of evidence on how well CBT worked alone or in combination with other treatments and there were only a few studies that looked at how well people were after CBT was stopped.

CBT is clearly not a cure for CFS but there is ample evidence that it can help some people. I know patients who have tried CBT, and it has worked for some while for others it has not. I am a firm believer that we must do what we can to help ourselves while we wait for interventions and treatments that could cure CFS.

* * * *

Q: Related to that, what’s your thinking on the recent report stating “Hypocortisolism in CFS is potentially reversible by CBT”and Cort Johnson & others who’re reporting that therapies such as Ashok Gupta’s are helping them?

Dr. Vernon: I thought this was a very interesting and important study by Roberts, et al. because it demonstrated some of the biology behind CBT. We know that low cortisol occurs in some people with CFS. Cortisol is a critical molecule for regulating the HPA axis to maintain homeostasis and cortisol is essential for modulating the immune response.

I and colleagues at the CDC published a paper demonstrating “bistability” in CFS; that is, the body can be in a low cortisol state rather than the healthy cortisol state – and stay that way. We have another paper soon to be published in PLoS Computational Biology that describes therapeutic approaches to “push” CFS from the low cortisol state to the healthy cortisol state. It may be that CBT is doing something similar.

* * * *

Q: Dr. Vernon – you’ve said you’ll be publishing a paper on therapies for pushing CFS patients to a healthy cortisol level. Would these be drugs, or biofeedback, or…?

Dr. Vernon: This is a theoretical, computational biology paper that proposes a pharmaceutical push.

* * * *

Q: It’s refreshing to hear of funding for research. Makes a change from being told it’s all in your mind! Could you consider investigating why the Marshall Protocol is giving such big improvements to some CFS/ME and Lyme patients? [The MP is an experimental protocol designed to rid the body of tiny cell-wall-free bacteria which Dr. Trevor Marshall proposes may live in the immune cells of those with certain illnesses, subject to specific blood tests.]

Dr. Vernon: The Association issued a request for proposals aimed to “advance the discovery of biomarkers and methods for early detection, objective diagnosis and effective treatment of CFS.” We did not receive any proposals investigating the Marshall Protocol.

* * * *

Q: The CFIDS Association has funded a variety of CFS research studies over the past several years. What were the reasons for the Association’s 2008 $1 million research campaign?

Dr. Vernon: The time was right to position the Association as a research partner for the translation of the accumulated CFS science to impact the CFS patient community. This is a tall task but can be accomplished by supporting research that essentially fills the gap between the basic research studies that are supported by the NIH and the control/intervention studies conducted by the CDC.

Before our 2008 campaign, no one was filling that gap between the basic bench research and the bedside. The CFIDS Association’s leadership, staff and Board of Directors saw this gap, understood why it was there and what needed to be done. The biggest single fundraising campaign ever undertaken by the Association began in 2007 along with hiring me to direct the Association’s expanded research program.

Within a few months, we developed and distributed our Request for Applications (RFA) which aimed to “advance the discovery of biomarkers and methods for early detection, objective diagnosis and effective treatment of CFS.” We purposely created a very broad RFA.

* * * *

Q: Why did you make the Request for Applications so broad, rather than focusing on one specific topic like virus infection, or on treatment studies?

Dr. Vernon: By writing a broad, all encompassing RFA, we hoped that we could attract new investigators to the field as well as veteran CFS researchers, in addition to inviting innovative ideas. After issuing the RFA, I spent several months identifying and recruiting a wide variety of scientists to respond to it.

I think I contacted more than 300 scientists conducting research in areas of infectious disease, physiology, immunology, neurology, bioinformatics, genetics, systems biology, etc, inviting them to direct their expertise towards CFS. The result was 31 letters of intent from investigators all around the world. We invited 24 investigators to submit full proposals and received 21.

These proposals dealt with broad range of topics including genetics, infection, immunology, metabolism, autonomic nervous system, and diagnostic biomarkers. All of these were highly relevant to CFS and responsive to our RFA.

* * * *

Q: 21 proposals is a lot. How did the Association choose the studies to fund?

Dr. Vernon: Each proposal was reviewed by a primary, secondary and ad hoc peer reviewer as well as me. Finding enough peer reviewers was quite a task! I contacted about 150 investigators to find 45 peer review experts. We reviewed and scored proposals based on scientific merit. The top ten scientific scoring proposals were then reviewed and scored for strategic merit by the ad hoc research committee (composed of Association staff and Board members).

So each of the top 10 proposals had a scientific and strategic merit score and it was the Association’s Executive Committee who considered these scores and made final funding decisions.

It was grueling but I am confident that this review process was rigorous and robust. All the studies are described in our press release – issued just two days ago, on December 3. You can read it on ProHealth.com.

* * * *

Q: Is the Association funding any virus studies?

Dr. Vernon: Yes. We are funding a study of young adults who got sick with infectious mononucleosis following acute Epstein-Barr virus (EBV) infection, did not recover and developed CFS. This study (led by Gordon Broderick at the University of Alberta, Canada) will examine blood gene expression and immune and endocrine biomarkers from the time they got sick with mono over a 2 year period.

The investigators will compare these measures in the post-infection CFS subjects to the same number of subjects who recovered from mono.

* * * *

Q: How will your EBV study with adolescents impact treatment for adults with long-term CFS caused by EBV?

Dr. Vernon: Hopefully it will give an indication of what the EBV is doing and direct interventions. This would be important for anyone chronically infected.

* * * *

Q: I have heard the word “biomarker” used quite a lot. Can you explain what is a biomarker and how are these relevant to ME/CFS?

Dr. Vernon: A biomarker is simply a marker that can elucidate cause and cure. There are biomarkers early in disease (for example, a Pap smear detects pre-cancer cells), there are biomarkers that can point to disease cause, and there are biomarkers for treatment.

Biomarkers can be different depending on the disease state.

* * * *

Q: Will this study determine if EBV causes CFS?

Dr. Vernon: The studies the Association is funding should be considered small, pilot studies. But the post-infection CFS is a strong study design so there is a good chance that EBV can be implicated as causing CFS at some level.

* * * *

Q: Is Epstein-Barr a common virus?

Dr. Vernon: Yes, EBV occurs worldwide and as many as 95% of adults in the U.S. have been infected by 40 years of age. EBV is in the herpes virus family, and like the other herpes viruses, once we are infected we are stuck with EBV for life.

* * * *

Q: Is the Association supporting any brain studies?

Dr. Vernon: Yes. We are funding a study (at Cornell University) that examines brain metabolism. These investigators have found elevated lactate in the cerebrospinal fluid of CFS patients.

This funding will allow the investigators to expand the number of CFS subjects and examine possible mechanisms of elevated lactate.

* * * *

Q: What would be some of the possible mechanisms for increased lactate in CFS?

Dr. Vernon: The investigators will use magnetic resonance spectroscopy, which is a brain imaging technique, to examine a number of metabolic processes in CFS subjects. They will also take blood measures to look for increased oxidative stress – an imbalance of oxidants & antioxidants that damages the integrity of cellular structures.

The CFS subjects in this study will also be part of another study funded by the Association which examines orthostatic instability (dysregulated autonomic blood pressure regulation – dizzy when rising, etc.) and blood flow. Transcranial Doppler will be used to assess cerebral blood flow while also monitoring the heart and breathing during a tilt test. So these patients will have both the central and autonomic nervous systems examined.

* * * *

Q: Does this mean that problems with blood flow in people with ME/CFS could be related to elevated lactate in our brain?

Dr. Vernon: Yes it does. Many CFS patients experience orthostatic instability and it is possible that this causes reduced blood flow to the brain.

This reduction would affect brain metabolism and could be one explanation for elevated lactate. There may likely be other reasons too, such as inflammation and oxidative stress.

* * * *

Q: Many people with CFS also have stomach problems like pain, irritable bowel and diarrhea. Is the Association funding studies to investigate these common symptoms?

Dr. Vernon: Yes. We will fund a study (by a team at the Marshfield Research Foundation in Wisconsin) that will look at the ratio of good to bad intestinal bacteria in CFS patients.

An imbalance of good and bad bacteria may result in enhanced intestinal permeability – called leaky gut – allowing bacteria to move across the protective intestinal barrier and causing chronic inflammation and immune activation in CFS patients.

This study would also look at whether exercise might worsen any bacterial leakage, causing post-exertional problems.

* * * *

Q: I didn’t realize that there was such a thing as “good” bacteria. Do our bodies need bacteria?

Dr. Vernon: It turns out that our bodies are a mix all kinds of microorganisms and we are now using the term “metagenome” to describe the fact that humans not only have their own genome but also harbor the genomes of thousands of microorganisms.

We are just beginning to explore what kind, how many, and what these microorganisms are doing in our bodies. But we do know that certain bacteria in the gut are critical for healthy metabolism of nutrients.

* * * *

Q: Is there a way to fix the balance between good and bad bacteria?

Dr. Vernon: If there is evidence of an imbalance of good to bad bacteria in CFS, there are treatment options, including the use of probiotics – that is, supplementation with helpful bacteria.

* * * *

Q: Will there be an opportunity for us patients to volunteer for any of the studies you’re funding?

Dr. Vernon: Only the study being conducted in New York City will be enrolling new subjects. That project, directed by Dr. Marvin Medow, PhD, at New York Medical College, will investigate whether increased pooling of blood in the abdomen of CFS patients results in reduced blood flow in the brain.

* * * *

Q: The project to develop “Google for CFS” – how would it work?

Dr. Vernon: Google is based on information that is available on the Net and works to retrieve requested information. First we create the CFS knowledgebase based on published literature. Then tools are developed to use it in ways that address CFS questions.

* * * *

Q: The studies you’re funding seem to look at two different possible reasons for post-exertion relapse – leaky gut & “overactive blood receptors.” Can you comment?

Dr. Vernon: The metagenome project will study if leaky gut is associated with more bad than good gut microbes. More bad to good microbes could cause inflammation and post-exertion fatigue.

The other study examines receptors found on blood cells as well as within the nervous system. These function to detect the sensory signals for muscle fatigue and pain. The activity of these receptors will be examined before and after exercise.

* * * *

Q: One of the studies you’re funding, on pain sensitivity after exercise, directed by Kathleen Light, seems to be at the Whittemore-Peterson center. A newscast on the center said a blood test to diagnose CFS “could be ready within a year.” Is this the same work?

Dr. Vernon: No, it is not.

* * * *

Q: There is a mountain of peer-reviewed research that parvovirus infections can be successfully treated with IVIg (and even B-interferon) – as long as the dose is high enough. Will the CFIDS Association be identifying practice guidelines?

Dr. Vernon: No, we’re focused on research. Clinical guidelines are not in our purview.

* * * *

Q: Dr. Vernon, I attended the phone/internet seminar that you did earlier this year through CFIDS.org (http://www.cfids.org/webinar/sciencecfs-video.asp ) and I am still using all the wonderful information that you shared during that 1-1/2 hours or so. Will you be doing any of those again?

Dr. Vernon: Yes. I hope to do about 2 or 3 in 2009. We will announce these to the community as they come together, and you’ll find our press releases on ProHealth.com as well.


The Live Chat Event is about to come to a close. The ProHealth team gratefully thanks Dr. Vernon for her dedication to patients, and for being with us here today! And thank you, everyone, for your enthusiastic participation.

Thanks for the great questions, thanks participants, thanks ProHealth for hosting the chat, and thanks Dr. Vernon, one last time!

I’ll be watching out in 2009 for more webinar news!

Dr. Vernon: Thank you all for coming!
Note: This information has not been evaluated by the FDA. It is generic and is not meant to diagnose, prevent, treat or cure any illness, condition, or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

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6 thoughts on “Q&A Session with ME/CFS Research Expert Suzanne Vernon, PhD – December 5, 2008”

  1. BeiYin says:

    Q&A on ME/CFS Research with Suzanne Vernon – Dec 5

    As scientific director of the CFIDS Association and the architect of their targeted investment in new research for 2009, Dr. Vernon fielded questions from close to 100 research trackers on the new studies, genetic subtypes, cortisol regulation, viruses, orthostatic problems,leaky gut, and much, much more.

    My comment:
    “Isn’t there something missing?”
    This research report is another disappointing writing that with many words say nothing. There’s no sign of a creative solution. Not with even one word there is mentioned that the root cause for this specific disease and consequently for all other, might lay on another than the physical level. ‘Healing’ is seen from the established medical view and that is eliminating the symptoms, using mostly drugs provided by the pharmaceutical industry. How a research coming from this position of a totally materialistic world view can give a creative answer in healing a condition in that the reason is unknown? This is not a scientific attitude. There are enough scientists who have given information about the connection between the material level and others going beyond. Who is investigating about this especially using this to understand disease? Is the power of moneymaker so strong that only the materialistic view is pushed on people?
    There are no signs that the situation will change. The position of the established health system is extremely strong, manipulated and influenced from the most powerful corporations. People as long they are healthy what means being without disturbing symptoms or only with symptoms that can easily eliminated with medication, don’t see the need for any change. Those people who are seriously sick and had their disappointing experience with doctors and chemical treatments, becoming more and more sick, these people are mostly to weak and suffering so much that they are not able to express themselves. They very few who express themselves are ignored.
    I healed myself some years ago from Fibromyalgia, after I was told that there is no cure and that I would have to live with this… I also healed myself from an inguinal hernia, even though I was told that I need surgery and that would be the only way. So I am talking
    out of my own experience and sometimes like now I feel the need to express myself, even though knowing that it will not change anything about the established view. It is so easy to discard what I express because I’m not a health professional. Often enough I was called crazy
    or a liar. I can understand this defence reaction, it is part of human nature to hold on an established position. Right? That’s the position of humanity in an evolution that still is in a very primitive state.
    Recognizing this we might be able to do a step forward and a few might even do a step beyond…

    1. MattieJane says:

      I have had CFS for 16 years and fibro for 5. My 7 year old has suffered with CFS for 5 years and any advice on how you healed yourself would be appreiciated

    2. outofstep says:

      Dr. Vernon made the very good point that ME/CFS patients need to let the govt. etc. know that we want funding for research, and that CFIDS.org has templates set up so that you can easily email letters to officials, media, etc. You can also sign up to be notified via email when a letter needs to be sent. Just click on the “advocacy alerts” link to get to the info page. Yes, it’s not fair that sick people are expected to advocate for themselves, and it’s also frustrating that after 25+ years we are still begging for funding and that the CDC’s case definition does not even describe the disease that many of us have. However, it seems that the squeaky wheel gets the oil. And there are a lot of us: if every ME/CFS patient went to CFIDS.org and sent just one letter, that would potentially be between 1-4 million letters! It is also empowering to fight for change. It’s very easy to feel frustrated, or even defeated at times by ME/CFS, and those are very good times to send a letter to your Congressperson etc., tell them how this disease is affecting your life, and ask for more funding. They need to understand that this disease is devastating and that their constituents are suffering and need their help. We can all play a part in furthering our cause by becoming activists for ME/CFS.

    3. groupie says:

      Thank you, Dr. Vernon. Despite the usual frustration with the format, I gained a lot from your comments and especially appreciate the transcript. CFS/ME is a mental chew toy for life. Your work and sharing brings me closer to solving my personal mysteries with this disease.

  2. CWB says:

    Why no mention of the name change issue? The association’s silence on this undermines trust for that agency among us PWC’s. In fact, let’s just right now change that designation to PWM’s–People With Myalgic Encephalopathy.

  3. springrose22 says:

    Dr. Vernon seems to be focused on CFS and uses the word “fatigue” a lot. Is she not aware that the disease is actually called Myalgic Encephalomyelitis (ME)??? And, the definition created by the CDC for CFS is absolutely ridiculous. Where else can you be “diagnosed” with a disease by completely eliminating every other disease process known to man, and then, voila! Here’s what you have: CFS! That means essentially, that you have NOTHING!

    She should look up Dr. Byron Hyde’s definitions of both ME and CFS, and maybe she would learn something. I suppose her heart is in the right place, but she is focusing way too much on information from the CDC. That information is weak and old. Marie

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