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Solve webinar 17 March: Dr Susan Levine - “The Future of ME/CFS”

Sasha

Fine, thank you
Messages
17,863
Location
UK
https://www.facebook.com/SolveMECFSInitiative/posts/10153445609352108

Solve said:
We’re excited to announce our first webinar of 2016 on March 17. Dr. Susan Levine will be addressing “The Future of ME/CFS.” We’ll be announcing our schedule for the first half of the year in the March edition of Research 1st, which will publish next week.

To register for Dr. Levine’s webinar, go here: http://bit.ly/1TbXSme.

To sign up for Research 1st, go here: http://bit.ly/1TbXR1I

https://attendee.gotowebinar.com/re...l&utm_source=facebook.com&utm_campaign=buffer

Solve said:
Susan M. Levine, M.D., graduated from Albert Einstein School of Medicine in 1981 and completed a residency in Internal Medicine at Montefiore Hospital in the Bronx followed by two fellowships in Infectious Diseases and Allergy and Immunology at Memorial Sloan Kettering Cancer Center and Mount Sinai Hospital, respectively.

During her second fellowship while working with Dr. Charlotte Cunningham-Rundles—one of the co-authors of the original case definition of ME/CFS—Dr. Levine became intrigued with seeing her first few ME/CFS patients who sought a diagnosis. She examined natural killer cell function and abnormalities in catecholamine response in these patients and then opened a private practice to provide medical support to a growing ME/CFS population in the New York and New Jersey area.

Over the last two decades, Dr. Levine has collaborated with other clinicians and researchers, co-authored a “Manual for Physicians,” a primer for internists about the care of ME/CFS patients, and is currently serving on the U.S. Department of Health and Human Services’ Chronic Fatigue Syndrome Advisory Committee. She remains committed to seeking better treatments for ME/CFS patients and to collaborating with like-minded scientists to gain a better understanding of this illness.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
A little bump for this to remind people that when they register, they get to send an email with a question for the speaker, if they want - so worth registering early and getting your question in. :)
 

cph13

Senior Member
Messages
221
Location
USA
A little bump for this to remind people that when they register, they get to send an email with a question for the speaker, if they want - so worth registering early and getting your question in. :)
Sasha, Thank you so much for posting this. Dr. Levine is my dr. How did I not know this. Talk about being low key, Dr. Levine, LOL
 

Kati

Patient in training
Messages
5,497
Here are slides screenshots
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image.jpg
 

Kati

Patient in training
Messages
5,497
Qustions and answers:

How do you rule out chronic lyme?

- she does thorough assessment.
- chronic Lyme have deeper neurological component, joint swelling, tingling and numbness.
- she refers to Lyme dr
- no easy answer.

Can one have autoimmune disease and still have Me/cfs and how to differentiate?

- tough question.
- Joint pain/swelling, other symptoms like cold sore hair loss, Raynauds, RF, lupus ANA would differentiate.
- would refer out to rheum
- believes pts could have co-morbid conditions.
- some will come with positive serologies causing false positive- it's not easy.

What is being done to increase access to specialists and train them

- it's a big issue that Dr Levine takes at heart
- this illness takes an enquiring mind from the drs
- tremendous lack of knowledge from clinicians and perhaps a lack of desire from med school teach about ME/cfs
- difficult to break the barrieres

Mycotoxin theories have been disproven in ME/cfs?

- nothing has been disproven
- looking at gut bacteria encouraging growths of fungi/yeast
- secondary effects of main cause?
- pts exposed to mold environment- difficult to measure. No accurate blood test to determine what we're looking at

What are your thoughts on use and efficacy of Ampligen, Valcyte, Vistide on IgG + viruses?

- use Valtrex, Valcyte but not VIstide and just 2 pts on Ampligen
- likes to use Valtrex and Valcyte early on during viral phase, uses Lerner protocol
- had only 1 person with IgM+
- Never had PCR + on EBV
- we still don't have a clue what the cause of this illness is. Many triggers.

Interested in NK cells for a long time. What are your toughts on NK cell as dx marker?

- look at cellular microRNa for NKcells. This maybe a clue as why NK cells may not work as well in ME/cfs
- suggestion that microRNA may be hindering cytoxicity of NK cells.
- fascinating. Furher testing on other diseases needed.

Rituximab trial- how much longer do we have to wait for treatment?

- has been a bit involved
- pts sensitive to medication, many RX intolerable for pts .
- couple of her pts have had Rituxan, it may work she is not optimistic due to toxicity
- should be tried, but concerns about toxicity, this and other drugs.

Partial remission?

-has pts who stop coming to her
Either they don't like her anymore (!) or either they got better
There needs to be follow up to see what happened to these pts.

What can pts do about brain fog?

Tough one.
Trial using Ritalin paired with vitamins. Some could not tolerate it. The milder pts (those working) may get too wired.
B vitamins may be more helpful
Maintaining some kind of schedule during the day may help. Interacting iwth people.
Learning something new. (Language, for instance, new instrument) can help cognitive ability.