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Friday, Dec 5: Live Chat with ME/CFS Research Expert Suzanne Vernon, PhD – “Working to Translate Science to a Cure”

  [ 28 votes ]   [ 17 Comments ] • December 5, 2008

ProHealth hosted a Live Chat Friday, Dec. 5 featuring research expert Suzanne Vernon, PhD – Scientific Director of the CFIDS Association of America. See the December 10 issue of our ME/CFS HealthWatch newsletter for an edited transcript of the Q&A.

Dr. Vernon discussed ME/CFS research in general, and the promising projects the Association chose to fund in 2009. For a summary of these projects, see BREAKING NEWS! - CFIDS Association Funds Largest-Ever CFS Research Initiative.

Who is Dr. Suzanne Vernon? One year ago, Dr. Vernon - a noted virologist - left an important post with the CDC’s prolific ME/CFS gene and pathogen research team to join forces with the CFIDS Association – a nonprofit patient advocacy organization dedicated to finding a cure for CFS by funding the most promising science. She's working non-stop to energize a global ME/CFS research initiative - for "groundbreaking results at unprecedented speed."


To understand Suzanne Vernon's full agenda in her first year at the helm – pushing ahead on the most promising science, while also improving government support, medical education, and patient care - see:

• Dr. Vernon's easy-to-understand video presentation for patients on the latest CFS research - "The Science of CFS: Past, Present and Future." Using Dr. Anthony Komaroff's summary of "Ten Discoveries about the Biology of CFS" as a springboard, she steps through findings for each body system, one-by-one.

“Meet Suzanne Vernon – Taking Global CFS Research to a New Level as Scientific Director of the CFIDS Association of America”

• And to appreciate the clout of grassroots fund raising in all this - “CFIDS Association Announces – Research Campaign Reaches $1 Million Goal!"

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New treatment
Posted by: Clarella
Dec 1, 2008
It's refreshing to hear of funding for research. Makes a change from being told it's all in your mind! Could Dr Vernon consider investigating why the Marshall Protocol is giving such big improvements to so many CFS/ME patients?
Reply Reply

Request for Follow-Up on Earlier CDC Research Project
Posted by: LSM
Dec 1, 2008
I concur with Carella's favorable comments about the Marshall Protocol (MP). Our daughter has made a remarkable recovery from 25 years of CFS (which was later diagnosed as late-stage, chronic Lyme disease) by following the MP. Her success story was published on this website two years ago.

Therefore, I request that the CFIDS Association consider the following research project to look for intracellular bacterial pathogens, such as spirochetes and rickettsia, etc.

Dr. Vernon, I asked you about this when we met at the ILADS conference in San Francisco this past Oct. I want to suggest the idea again on this website's forum. You were lead author of a study published in 2002 looking for the association of novel infectious agents in the blood of CFS patients.

The conclusions of that study were negative, but a follow-up study (which was never funded) was promised by the authors: "Future assessment of 16S rDNA sequences in peripheral blood will focus on the granulocyte cell subset."

I suspect that the reason that the first study yielded negative results was that it used cell-free plasma samples, instead of using whole blood, because obligate intracellular bacteria live inside host cells. Therefore, one would not expect to find them in cell-free plasma samples.

When the $1.8M study was first announced by Dr. William Reeves at the big CDC-sponsored CFS conference in Seattle, WA in Jan., 2001, the handout stated: "Bacterial and mycoplasma 16S rRNA detection and characterization in peripheral blood mononuclear cells: DNA coding for small subunit ribosomal RNA (16S) molecules are highly conserved in bacteria/rickettsia and can be detected using broad-range PCR primers and products sequenced for specific identification."

The reason I think it is so very important to follow-up on this earlier incomplete work is that we now know that some (but not all) CFS and Lyme patients are achieving excellent results by using antibiotics according to the Marshall Protocol for occult intracellular bacterial infections.

It would be nice therefore to know which bacterial pathogens they are carrying since we already know that the therapy can be so successful, but we don't yet have any way to know what their uniquely individual intracellular bacterial "pea soup" mixtures consist of.

Thanks for your consideration, and thanks to ProHealth for providing the opportunity for this dialogue.

TX Lyme Mom (aka: Lone Star Mom)


Dr Vernon
Posted by: Eileenmichaels
Dec 1, 2008
I am thrilled to see that she is a noted virologist. I want to ask her about the likelyhood of ever being able to rid my body of the EBV and parvo viruses that are making me so ill. I handled the EBV fairly well for 24 years, but when I picked up parvo in 2004 that just abut did me in. As Dr Dantini said to me, "That Parvo is a real bitch, isn't it?" He also harbors it. I told him there must be a beter word, a more evil word, than bitch, but I haven't come up with it yet :)) These viruses are perfectly adapted to us, they utilize us perfectly without killing us - the host. But surely there must be someway, something we could think of to make our environment so inhospitable for them that they would opt to leave. Killing them isn't possible,but could we simply drive them away? I really want to hear what her thoughts are.
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Eileenmichaels-parvo virus
Posted by: noteworthy
Dec 2, 2008
Please tell me how you found out you have parvo virus. How did the doctor check for it.


What is the Marshall protocol?
Posted by: eliz2f
Dec 1, 2008
My daughter has Fibro maybe? as there are no DR's within 200 miles so local primary DR just says Larica. Pain management DR says no help when its the whole body. So does she just have to keep in bed with pain pills? She is 51 Any help or advice would be appreciated. I forgot to mention she is on medicaid and has depression.
Reply Reply

Posted by: lauranne
Dec 1, 2008
I am also 51yrs and in 02' was diagnosed with fibro/cfs. Come to find out later on these conditions were caused by mercury toxicity from a mouthful of old amalgams, which were leaching mercury into my body for years. A test revealed my mercury level was off the chart. A good place to start is here: I also had 3 yrs of flu shots which contain thimerasol (50 pct mercury), I believe this was the breaking point and from there I went downhill all the way. I believe if I hadn't had the fillings removed, I would be in a wheelchair, as I also had full blown MS symptoms. Yahoo has some very good groups, adult-metal is one.
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Mercury fillings
Posted by: jmkinsey
Dec 3, 2008
To lauranne:

Have you done any chelation to rid your body of its stores of mercury?



I hope this question gets passed to Dr. Vernon.........................
Posted by: Lichu3
Dec 2, 2008
if I am unable to attend. I know it's the start of a new Presidential administration and that there are many things in transition. But: How do the CFIDS Association of America or other CFS plan to deal with the new administration, including the new Secretary of Health, Tom Daschle? If I remember correctly, two House representative from Chicago, John Porter (R) in the past and Jan Schakowsky (D) have been involved in CFS advocacy. Anyway to use these connections to get President-elect Obama's attention? CFS is a Chicago issue, a national issue, a bipartisan issue. I used the little personal connection I had to my local Rep to get her attention.
Reply Reply

Posted by: Eirran
Dec 3, 2008
My girlfriend has ME. Her worst symptom is arrhythmia best described as the sensation that the heart jumps a few beats which then turns into a regular heart rate of over 200. Normally these attacks lasts for 10 to 15 minutes, but the last three attacks lasted from 2 to 4 hours. The last attack even got her hospitalized for observation. The doctors diagnosed this as Paroxysmal Supraventricular Tachycardia (PSVT). Both she and her MD feels that they have missed out on the irregular heartbeats as her heart rate was regular (around 210) when she was at the hospital. Luckily we have come in contact with a doctor who is interested in research into ME and the heart, and have asked us to try to find relevant research. Do you know of any research done on PSVT and ME/CFS? Yours truly Eirran
Reply Reply

Posted by: cinnamon-4
Dec 6, 2008
I read your message on this problem. I have had the psvt for almost 20 years and the doctors in my part of the country don't know why they come on. I have learned that certain food allergies/sensitivites and stress can bring them on. I have very few spells anymore since I have learned this on my own.I ended up inthe Emergency room a few times and was monitored also. Candida overgrowth has a lot to do with this... in my experience. Hope this helps some. It took me many years to figure out why these heart spells came on. They are just as you described.


cfs question
Posted by: konijn
Dec 4, 2008
On the webinar "the science of cfs" from the CFIDS association Dr Vernon said that most tests for the different sub-groups in cfs are still only available on a scientific level. Has she any idea when they will become available in clinical practice? I mean is it something like 5 or maybe 10 years? What were the highlights, the most important and meaningfull studies/papers of the international conference on fatigue science in Japan? Why is it that we here so little of the conference in Japan?
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Q for Dr. Vernon
Posted by: outofstep
Dec 5, 2008
Congratulations on reaching your funding goals and on all of your planned research projects. I am particularly interested in your study of adolescents with EB who develop CFS. I was one of those adolescents 20 years ago, and still have chronic debilitating EB and HHV-6. I'm wondering if this research will help long-term post-viral fatigue syndrome/ viral induced CNS dysfunction patients, or if you will be funding additional research specifically for those patients in the future. Thanks.
Reply Reply

For Eirran - PSVT and ME
Posted by: Poncin
Dec 5, 2008
Reply Reply

Question on Genetic Aspects of CFS
Posted by: MJP123
Dec 5, 2008
  Hello, Dr. Vernon,   We see a lot about the "genetic" component of CFS being bandied around. We see the term gene dysregulation (either up- or down-regulation) used in peer-reviewed articles describing research into CFS pathophysiology and possible biomarkers. Does this mean that specific susceptibility to CFS is inherited? Alternatively, could ME/CFS be triggered in any human if that person endures gene damage due to environmental triggers such as viruses, bacteria, prion particles, organophosphates or other chemicals? In interpreting comments about susceptibility, can susceptibility be measured in terms of relative risk, as it can be for such genetic illnesses as Porphyria? Given the number of genes being studied, I assume risk is multifactorial and would be at best a weak indicator of likelihood of developing CFS. Is this right? If so, why are there so many cases, compared to MS, Parkinson's, Porphyria, Ehlers-Danlos Syndrome, and many kinds of cancer? Thank you for you time, Linda MacDonald Ass't Sci Director National ME-FM Action Network (Canada)
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Your First Year
Posted by: phoenixcfs
Dec 5, 2008
Going from CDC researcher to CFIDS Association Research Director must have been quite a change. In your travels around the world you talked with researchers, physicians and government officials and patients. You must have had some expectations about the job coming in. What didn't fit those expectations - what most surprised you in your first year in your new job?
Reply Reply

Dr. Mishra's Project
Posted by: phoenixcfs
Dec 5, 2008
Dr. Mishra's project that the CFIDS Association recently funded sounds fascinating but its difficult to understand its scope from the brief description. Will he create a web-based database that researchers can freely access? Will he use the database to highlight patterns that have not been highlighted before (or produce new theories?) and if so, how? Is there a model for Dr. Mishra's project? Have similar projects been undertaken before in other fields?
Reply Reply

The Research Situation and the CFIDS Grants
Posted by: phoenixcfs
Dec 5, 2008
One federal official said that a lack of innovation pervades the CFS research field. Another said that if the right projects come up then they will fund them - but they apparently haven't come up since they've not funding many. Now we hear - from the CFIDS Association of America - that Dr. Reeves may have been spending a good deal of his research money on projects that existed on paper only - which could suggest that he may have run out of good ideas. Plus you others have said that its absolutely vital to attract new researchers and new thinking to this field. You've just combed through over 25 grant requests (as I remember). You surely had an idea of what kind of projects you really wanted to fund - grants that had the chance to really thrust this field forward. How did these grant applications stack up? Based on the grants - what is more critical - getting more researchers involved or getting more money to the researchers we have?
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