A Unique Biobank – and Its Work
The Solve ME/CFS Initative’s webinar series is back. Their research director, Suzanne Vernon, Ph.D, will s
tart the series off with an update on the SolveCFS research efforts and the SolveCFS’s ‘unique’ Biobank.
The SolveCFS Biobank was one of the first biobanks created for ME/CFS. Suzanne Vernon predicted the SolveCFS Biobank would lower costs, speed up studies, enhance collaboration, and most of all, attract outside researchers. Has it? We’ll find out as Suzanne goes over the research emanating from one of the more comprehensive Biobanks created for Chronic Fatigue Syndrome.
Thursday, July 31, 2014
2-3:00pm Eastern (1pm Central/Noon Mountain/11am Pacific)
Do Your Genes Have it?
Methylation is a huge topic in ME/CFS treatment circles, but few studies have assessed it. The epigenetics study funded by SolveCFS
is the first in-depth study I know of that has looked at methylation in this disorder, and it’s focused on the immune system to boot.
Could epigenetic changes – changes that occurred to our genes after we were born – contribute to ME/CFS? As someone with an identical twin who is disgustingly healthy, my guess is they very well might have, and, in fact, the blurb for this webinar promises they “will help explain the immune dysfunction of ME/CFS.”
That’s strong stuff . Find out how Patrick McGowan is going to help explain ME/CFS in this:
Investigator Report: Epigenetics of ME/CFS
Thursday, August 21, 2014: 2-3:00pm Eastern (1pm Central/Noon Mountain/11am Pacific).
Deciphering Postexertional Malaise
The first person to decipher postexertional malaise in Chronic Fatigue Syndrome will deserve a medal in my book. Dane Cook has definitely been working on it. He’s done work on exercise 
and sleep, exercise and cytokines, exercise and ME/CFS and Fibromyalgia, exercise and oxygen consumption … and probably a few more.
He’s had enough of this exercise...and ‘X’ stuff, though. In his SolveME/CFS study combining exercise, the brain and the immune system, he’s trying to put all the pieces together. This one should be interesting. Check out his systems biology approach to PEM in the
Investigator Report: Deciphering Post-Exertional Malaise
Thursday, September 18, 2014
2-3:00pm Eastern (1pm Central/Noon Mountain/11am Pacific)
Decoding the Immune Response
Dr. 
Unutmaz hypothesizes that a disproportionate immune response causes damage in ME/CFS. That makes sense given that the worse an infection is the more likely someone is to come down with with ME/CFS, but are we talking inflammation or autoimmunity or under-activation or what? What is this disproportionate response? Hopefully we’ll get some answers regarding this oh so complex but obviously vital system in ME/CFS in
Investigator Report: Decoding the Human Immune Response
Wednesday, October 1, 2014
2-3:00pm Eastern (1pm Central/Noon Mountain/11am Pacific)
- Click HERE to Reserve Your Spot
November and December Webinars – To Be Announced
I’m hoping that Lasker award winner, Dr. Houghton, and his search for a biomarker in ME/CFS shows up in one of them, the Biovista project that identified a double-drug combo that may work in ME/CFS shows up on another, and that the Logosomix project to gather and analyze ALL the knowledge present on ME/CFS shows up on one more.
The webinars will be available for viewing on the internet about a week after each is shown…
Dr. James Baraniuk, Georgetown University, will speak at our next meeting at Arlington Central Library regarding recruiting patients and healthy controls for his current research study: Exertional Exhaustion in Chronic Fatigue Syndrome (CFS). This research is being done because Dr. Baraniuk has found changes in the brains of people with Gulf War Illness in a previous study.* It is possible that there are similarities between GWI and CFS that are related to problems in the brain.
Saturday, August 16th at 2 pm
Arlington Central Library near Virginia Square Metro
1015 N Quincy St, Arlington, VA 22201
http://fibrofightclub.tumblr.
http://www.meetup.com/
He writes:
Read about his previous study :
http://www.georgetown.edu/
http://www.usatoday.com/story/
We will be in the 2nd Floor Meeting room. There is an elevator. Parking is available in the outdoor lot and in the parking garage (free). The Central Library is a .3 mile walk from Virginia Square Metro stop.
Hi Cort
I really appreciate the information on your website. Will you be posting these webinars online after they’re broadcast, for those of us in different parts of the world? Otherwise it will mean getting up at 4 or 5 AM, for those of us on the east coast of Australia ☺
I should have mentioned that they’ll be up on SolveMECFS’s Youtube channel about a week after each one has been shown – no early mornings needed down under 🙂
That’s great, Cort – many thanks ☺
I’m with Fiona on this, the series sound great
🙂
“The first person to decipher postexertional malaise in Chronic Fatigue Syndrome will deserve a medal in my book”. Why sell them short, – the Nobel Prize!
I almost put that in there Christian 🙂
Hmmmm, all on the same day at the same time…. And we can only choose one. Decisions, decisions, decisions………. 🙂
Issie
Actually they’re split up – thank goodness :).
If I had to chose one I think I would choose the epigenetics one – that’s a new field and it’ll be interesting to see what he’s found. Then I would go for PEM – one of my all time favorite subjects :)…and then the immune one – and then finally Suzanne’s – except she is going to talk on a variety of research findings – which means it could be the most interesting of all…
Decisions, decisions….luckily they will all be available for viewing later.
“Could epigenetic changes – changes that occurred to our genes after we were born
Read more…./”
Just a quick point. As far as I understand it – epigenetics is about gene expression – genes being turned on and off – as opposed to changes to our genes or DNA.
Yes, that’s how I understand it too. We could have the genetics for a certain illness but depending whether or not it activates is whether or not we get sick from it. We inherit a tendency toward certain things and it depends on how we live life and feed and support our bodies as to whether or not there is an expression or we get sick from it. The idea is we maybe can affect that with certain things. If it has activated, maybe we can deactivate. Sort of like a toggle switch yet far more complex. Methylation may be a key factor in this. I follow Dr Amy’s research on this. It’s very interesting and has seemed to make a difference for me.
Issie
Is Patrick McGowan’s seminar focusing on mutations in the MTHFR gene (which impacts methylation)? I have been learning about this and found a good overview with signs and sympoms:
http://mthfr.webs.com
On the other hand, Garrett Smith (whom I am not familiar with) has an opposing point of view:
https://m.facebook.com/story.php?story_fbid=10203326818185068&id=1048986488
I just read what Garrett Smith wrote, he said MTHFR isn’t the only thing to address. He is right about that statement, from what I’ve read. When you are looking at methylation there is more than MTHFR that needs to be fixed in the methylation pathway. That’s one of lots. You can’t address just one aspect of the pathway. Dr Amy is teaching others how to fix these pathways and in the proper order. If you make the loop in the wrong direction at the wrong time and place in the healing, it can make you worse. It’s fascinating but very complex.
Issie
I believe McGowan looked at methylation patterns across broad areas of the genome – focusing on the immune system – so no it’s not specifically on the MTHFR gene.
Good. It will be interesting to hear what he has to say.
Cort I love love love all the great info Learn something everytime My dilemma is Oct1 is a long way off for my CFS brain I can barely remember where my shoes are sometimes much less remember a webinair in October : (
:). I have the same problem. It’s good they’re being recorded for posterity. 🙂
It’s real. I’m ME sufferer since 5.5 years, severe disease (vital prognostic committed from the 6th year). I am suffering so neuro, endocrine, and immune (and much more, but I have 3 main criteria. For me, the answer lymph due to any physical or intelectuel this effort from the very beginning of the disease. I’m not EM post vaccination, or SFC, I have ME natural form. I think having had scratches domestic iguanas not disinfected for 3 years (read my immune system be subjected to aggressive agents and repeatedly) was a major trigger of my ME. Sorry for my English, im French ( and ME 😉 … )
Yes, at this point in time I would suggest being extremely careful with any methylation protocol. I started very simply with a multi vitamin and I thought I was literally going to die . I have since realized it was the multi vitamin and I seem to be improving. What I am learning from this experience, despite consulting with two methylation practitioners prior to taking this supplement, is that no one understands the immune system in CFS and ME. I caution everyone to be very careful. It must be an immune or autoimmune defect and adding yet another layer onto an already broken system can be dangerous. I will be writing a letter to the Dr who makes these. There are many citrates in the multi which may have triggered a severe histamine intolerance. It is so disappointing to take something as simple as a multi vitamin that results in dangerous reactions. And, even worse, the very people who are promoting the methylation protocols really don’t seem to have much knowledge. It seems like another dead end. And, lots of wasted CASH for very poor advice. Buyer Beware, AGAIN ! And so it goes with CFS………
I wonder if others attempting to work with methylation have had very adverse reactions.
Yes! You have to take it very slow and go low. Some that seem to know what they are doing – are telling people to use way too much and are addressing only one aspect of the methylation pathways. For sure, this could make one very sick. It has to be done in the proper order with complete knowledge of what YOUR mutations are. What works for one could be so wrong for someone else. We are all unique and have different genes. I cringe every time I hear some make blanket, matter of fact statements as if it would work for anyone with a certain known mutation. It’s so complex and requires alot of study and knowing what you are doing.
You can have a herx reaction with this too. So a reaction could be because you are trying to go too fast and using too much of a product.
Issie
Issie, those were the very reasons that I consulted with two practitioners who had my 23andme interpretation. And, one cannot go much slower than an HH mult vitamin. Truly, it appears that this is too early for anyone to have enough knowledge to advise chronically ill people to attempt this treatment. I will wait for much more information and studies before I attempt this again. After speaking with the very people who are guiding others and paying them a considerable amount of money, it indicates to me that few know what they are talking about in this treatment protocol and those of us hoping for solutions or only a bit of improvement find just the opposite. The body is so very complex especially with many genetic defects!
I so agree. Many of the “experts” on this I wonder about. BTW, I can’t take any kind of multi. Tried so many different ones over the years. No go for me. What I’m doing with my own methylation routine is making a difference. But I attribute much oft success to a diet change.
Issie
Methylation issues are extremely complex but still essential and vital to learn, for each person’s unique genetic responses to immune challenges (however they are labeled) are key to discovering remedies for individual healing needs. Yasko’s approach to healing is the “Nutrigenomic bypass” for substances that at any given time are blocking a methylation detox liver pathway — thereby blocking all of the others downstream. On her weekly phone calls, M.D. Dr. Nancy Mullan (Dr. Yasko colleague) always advises that a person start out with no more than a fork tine’s worth of one HH multivitamin capsule and then watch carefully for possible over- or under-methylation responses. Dr. Mullan has many free easy-to-understand free PDF methylation guides on her website; she also has the free weekly live call since few can afford to see her. Low quantities of the SNP-appropriate foods or supplements added in very slowly are key to avoiding Herxes. Supplements for the very broad-reaching and troublesome broken MTHFRs must be taken in context with clear knowledge of all the other broken SNPs one may have, or the results can be terrible, such as the extreme discomfort experienced with prescription “medicinal food” Deplin; this was akin to nuking a half-inch meteorite. For me, slow detox is essential in healing NID/ME, and the healing approaches must be very gentle. A nurse-practitioner has been recommending Modified Citrus Pectin from Allergy Research, NOW or Swanson since it absorbs all kinds of toxins even through the blood-brain barrier and leaves the good stuff. A generally organic lifestyle has helped here, at least buying time. Also, avoiding all GMO substances in food/supplements; neuro excitotoxins (all petrochemical additives, citrates, glutamates in anything, glutamine/glutamates, all thirty or more MSG-related food additives); wheat, dairy except grass-fed butter; and pesticides and household chemicals (the usual suspects) and even 24/7 microwave reception WIFI devices, especially utility company Smart water and electric Meters (see http://www.ElectricSense.com). Methylation correction is a marathon, not a sprint, and requires patience, not easy for people who already have been waiting for decades to recover. Seeing progress gradually build is worth the effort. Yay for Dr. Klimas and team for another great study supporting us all.
Issie , I am happy to hear that you have found something to be effective. Part of my frustration is that I have made a diet change over 4 yrs ago, totally GF, Dairy free, now no sugar, no processed foods at all and I eat organic. This is difficult and I am doing it yet I am still waiting for more positive results. I wonder if all the years on gluten did a lot of damage already..my genes indicate bordering on celiac. So many homozygous genes I suppose it is a miracle that I am alive at all !!! I am much better than I was but I imagine I will be working on this for my lifetime. As I watch people routinely eating junk food and functioning while I was always very health conscious and then ill it is very curious. More Mysteries of the body and genetics. -:)
My diet change has gone a step further. I didnt get results until I did this. Im low fat, whole food, vegan. Take a look at Dr. McDougal and Forks over Knives. Im not perfect with it, but more on than off. Its been my changing point.
Issie
So excited to see that Dane Cook will be speaking!
Was a participant in a recent research project that he ran…can’t wait to hear
what he has found!!!