Dr. Susan Levine’s Responses to Follow-Up Webinar Questions—Part II

Dr. Susan LevineIn Part Two of her follow-up to our March 17 webinar, Dr. Susan Levine, founder of the Medical Office of Susan M. Levine, M.D., responds to a wide range of patient questions that time did not was not able to field during the webinar. Dr. Levine will provide answers to additional questions in subsequent installments in this blog series. To sign up for the blog, go to SolveCFs.org/blog. To view the webinar recording, go here.

 Q: Many severe ME patients have continuous malaise 100 percent of the time—not post-exertional malaise, but 100 percent malaise. These must be included since they are most severe. How much does MTHFR or other methylation genetic defects correlate with a risk of ME? Any opinions on dextromethorphan, loratadine, glutathione for severe ME?

A: I understand about having continuous malaise all the time, and I agree these patients who have this ongoing symptom and that are homebound should definitely be studied.  Hopefully, there will be more funding to accomplish this. Although interesting, I think the MHTFR defect is just one of probably many genetic abnormalities related to ME/CFS that will be uncovered in the near future. I have used glutathione with some success.

Q: I live in the Philadelphia area and do not have access to a specialist. This is a common problem I see online. What is being done to expand medical access to ME/CFS specialists or to educate more doctors on this disease? I would like to try LDN but my doctor will not prescribe, and I have to educate him about anything I want to try. We are very sick and have to be our own doctors and then try to convince our actual doctors to treat us.

A: We are trying to expand educational efforts through the Solve ME/CFS Initiative and other organizations. It takes time, but I want to alert young doctors—and older doctors—to the tools available that may help patients and to get them involved in clinical research.  LDN can be helpful, but it’s important to be aware of interactions with other medications/supplements.

Q: Would you be able to elaborate on the criteria used to develop the five or six general hypotheses formed by your scientific advisory board? To what extent has the Epstein Barr Virus been studied? Where can a patient find and read these studies?

A: The advisory board has not actually formulated a hypothesis, but I think different biological pathways, including infectious, toxic exposure and other triggers are being studied with respect to ME/CFS; they are also trying to determine a common pathway.  Epstein Barr Virus is likely involved in some patients as a cause of ME/CFS, which then sets off a cascade of other processes in the body. Some studies on HHV-6 (Human Herpes Virus 6), a related virus, can be found posted on the HHV-6 Foundation’s website.

Q: Can you comment on the role of diet, specifically the role of probiotics with respect to CFS?

A: Diet may or may not play a major role in helping to improve symptoms in ME/CFS.  We are currently studying infectious agents and other products in the gut and hopefully we will find differences between patients and normal controls that will educate us as to what diet to recommend (we suspect that this may be customized per individual patient). We also want to determine whether certain pre- or probiotics may be helpful.

Q: How do those of us in early phase get access to experts with long wait lists so we can receive treatment at this critical time?

A: I agree that it’s best if you can “catch” this disease in the early phases. We are obviously working to find the best venues to educate poorly informed physicians and other health care professionals about this disease. I work with some primary care doctors of patients who see me from out of state, and many of them have been receptive to learning about ME/CFS.

Q: I have been back in the Boston area for four years and cannot find appropriate physicians. Do you have any ideas?

A: I do see a few patients from Boston. I believe Dr. Felsenstein at Massachusetts General is seeing patients, but don’t know what her wait list is like.

Q: Francis Collins addressed the House Appropriations Committee and said that the NIH will address neuro diseases. He never mentioned ME/CFS. What are your thoughts on this?

A: I know that Francis Collins is committed to helping our community, and I know it never seems like enough is being done. Having been involved with ME/CFS care of patients as well as in clinical research, I do feel that there’s been a definite growth in the level of commitment to trying to understand the disease better and improve quality of care for ME/CFS. We are trying to get a Center of Excellence funded here in New York, and we are in the process of collecting samples for an NIH-funded study to help determine biomarkers for this disease.

Q: I am an Incline Village survivor and original prototype for CFS, selected by Drs. Cheney and Peterson. Not a single CFS researcher ever looked into the incident that started this syndrome. Do you have any intention of ever doing so?

A: I find the Incline Village incident interesting and will have to talk to Dan Peterson about what, if anything, was done to evaluate possible exposures or triggering factors. I know the community he worked in was not very supportive in terms of “publicizing” the outbreak since it would deter the tourism trade at the time, but I’m not sure that’s the reason it wasn’t further investigated.

Q: Dr. Ellen Clayton, the IOM Committee Chair, said that she felt it was important to leave exclusions out of the definition because it was conceivable that ME could well co-exist with them. How do you see this aspect vs. the need for criteria to not be too wide of a net? During the webinar, you had said there is currently no blood test for mold exposure. Are you aware of the RealTimeLab (run by Dr. Hooper in Texas) urine test for mycotoxins?

A: I do know about mold exposure and ways to test for it, but didn’t particularly want to endorse a lab because it’s hard to know—which I find in the case of other lab tests I do—whether elevated mold levels through RealTime may also be found in “normal” people, who wouldn’t have symptoms because they may harbor a protective mechanism to help them detoxify the mold exposure or somehow mitigate its effects.

But I want to reassure everyone that I do believe that in many patients mold or other types of environmental exposures may contribute to the onset and ongoing nature of ME/CFS either alone or together with other infectious or environmental agents. In the right clinical context, I do take that exposure into account and may elect to treat for it over a period of time. Yes, I know your point about Dr. Clayton’s argument. In actual practice, I do realize that patients may have co-morbidities, but one has to be careful about the timing of the onset of those co-morbidities with respect to ME/CFS. I think we are still in the “testing” phase with a lot of these definitions and that it will continue to be a work in progress as more biomarkers are elucidated.

Q: Has the recent upsurge in research resulted in any new approaches for immediate treatment? For example, two-day exercise testing and exercise?

A: I think the ME/CFS community has become aware that a lot of the immune changes we see in the blood, as well as other abnormal findings, are triggered by exercise and that it makes sense to conduct research using these tools. I think awareness of this fact will help support possible therapies that improve energy output in individuals.

Q: What is your opinion of the recent announcement by Griffith University that they have discovered and ME/CFS biomarker?

A: I’m glad that Griffith has come out with a potential biomarker, though it will need to be tested in larger groups of patients and in those with other illnesses. But it’s very exciting!

Q: What are your thoughts on ME/CFS and mold toxins even in high positive titers of EBV? Low NK cell function, Low CD4 count

A: I believe that mold exposure is an important factor in ME/CFS, as well as the other commonly found biomarkers, like low NK function. I’m not sure they are related, but it’s conceivable that patients with low NK function to begin with would be more vulnerable to the negative effects of mold and other exposures.


Tags: , , , April 8, 2016
  • Maschelle Mashburn

    I am seriously frightened by the degree if debilitation I now have because I am a single mother of a child with high-functiining autism. This family dynamic forced me to advocate and care for my child. It was a lifestyle of push-crash for me.. even though I could tell that I was becoming more limited because of the lack of a support system. ME-CFS has taken every part of who I am from me, and landed me in a bed. I can’t read a book for pleasure or knowledge while I lay here. Writing is such a strenous mental activity for me now that I do experience post exertional malaise when interacting with people via Social Media, email or commenting on an article as I am here. I just came off a week long inability to write and remain conscious while doing so. It isn’t sleep that I experience, it’s more like suddenly coming to awareness choking on the sip of coffee you just took.. because you “went out” that fast. I cannot count how many times I’ve “woken” to choking on a bite of food, hot or cold liquid spilling into my lap from the cup I’m still holding but has tipped when I went out before I could lift it to my lips. It is frightening.
    My child is now 15, and has no memories of holiday traditions, favorite meals, vacations Anything a mother normally does in their child’s childhood. Her mother was taken from her, in all practicality, at the age of 5. My pain is horrible on a daily basis. I’m too weak to be upright any longer than a trip to the potty (even though I am totally incontinent because of paralyzed muscles needed to control bladder and bowel. I’m 54 now. I’m invisible. I’m angry and in mourning for what my daughter has been put through, and her entire stolen childhood. It seems dire to help us, the severely ill, too! We are dangerously ill and have been suffering with no break for years. It’s inhumane to give us no thought or hope. It’s criminal and outrages all of us to see an animal being allowed to suffer and be neglected. Trust me, the current stigma surrounding ME-CFS results in abandonment, suffering, isolatiin, fear and despair. We are being treated less humanely than dogs and cats by our loved ones, medical personnel, neighbors (oh, they can be so cruel), and can’t advocate for ourselves. We desperately need researchers to change this by including us in the studies too! But we’re being left behind by the advocacy we have put our trust in. I never thought our advocates would join the group of those who’ve abandoned us.
    I would NEVER do this, but I can understand, after what has and is happening to me, why the suicide rate is so tragically high among ME-CFS sufferers. In light of the IOM report, I truly thought change would happen for the severely ill too. I can’t bear the emotional pain of discovering that it will not. We’re being left out. Where should we pin our hopes now?

    • Jane

      I am largely stuck at home and feel for you, Michelle! Check out the End ME/CFS Project out of Open Med Institute…they are doing a homebound, severely ill patient study. It’s a start. I also saw Dr. Nath or one of the NIH investigators replying about being open to doing this somehow through the NIH clinical center…it was on MEAction I believe.

      • Maschelle Mashburn

        Oh boy! I am grateful for this information! I will look into it! I’m sorry you’re so limited as well. I know you understand through living it yourself.
        Thank you again! Good news indeed! But I will cut this short so you don’t tire reading it, and I don’t tire writing it.
        I wish you a remission or any improvement in your current level of illness. You are not alone in your struggle either.
        Thank you for your reply!

    • Tamara mathews

      I know it is not enough but I have compassion for you and relate entirely to your feeling of invisibility. To know who you once were as if it was another life does leave you mourning. I have had very similar experience and nowhere to turn for help or answers. But on a hopeful note the last 4 months I have been masss dosing pro biotics and miraculously have had a considerable improvement with the chronic fatigue and malaise. My hopes that you are able to find something to give you the same glimmer of hope.

      • Maschelle Mashburn

        I will try that! I hope to have some extra $after bills due to revently being approved by HUD for housing. I will be in an apartment complex that I can use my power chair when I feel better, plus have a balcony with trees, one evergreen, not quute enough to touch, but fully grown and beautiful and healing. I’ll be on the 3rd floor, so my balcony space can’t be invaded by well meaning neighbors wanting to chat. I desperately need to be outside and be alone. I’m sure you understand the sensory overload from interacting with people. Even with those I love wuth my very being. And, the cincher, there is an elevator accessed from the outdoor courtyard on every floor if this gated community. My rent will be cut by 50% by being on the program. That money is desperately needed for over the counter things I need fir my health. Probiotics have been on my list since 2008.
        I’m glad, so very glad, that they’ve helped you! That’s fabulous!
        I appreciate your replying to my post! It helps tremendously when one feels invisible and frightened.
        I hope you heal even more! Best of wishes!

        • MarkC

          Can you place yourself with shortened name, not exact location, but near, on http://WWW.diseasemaps.org under “Chronic Fatigue Syndrome/ME”. The more ME become visible, the more we can be funded for R&D for biomarkers and clinical trials. Do e-mail your congressional rep and senators what you said above, and join with MEACTION.NET online to ask for $250M R&D per year to NIH vs $6M in 2015. My 22 year old son is bedridden and we all need to work for a cure

  • Jane

    I am wondering the problem of interactions w/ LDN. What interacts? I’ve been on it about a year. The only thing I have heard of is that it can block affects of narcotic pain relievers. And possibly affects hypo or hyper thyroid. I’ve heard of good effects for autoimmune patients. I always ask the pharmacist when on antibiotics or anything else besides Florinef…but idk if they really know b/c it’s more commonly used in a high dose to counteract addictions and ODs.

  • Erik Johnson

    Another year went by.. with no CFS researchers “responding” to “Mold at Ground Zero for CFS”
    I guess it’s more fun to talk about research than actually doing it.

    Q: I am an Incline Village survivor and original prototype for CFS, selected by Drs. Cheney and Peterson. Not a single CFS researcher ever looked into the incident that started this syndrome. Do you have any intention of ever doing so?

    A: I find the Incline Village incident interesting and will have to talk to Dan Peterson about what, if anything, was done to evaluate possible exposures or triggering factors. I know the community he worked in was not very supportive in terms of “publicizing” the outbreak since it would deter the tourism trade at the time, but I’m not sure that’s the reason it wasn’t further investigated.