Jeannette Burmeister Tweets: #MECFS
HillaryJohnson question for Ruscetti. Are ppl at NCI still showing interest in connection btw ME and cancer? Ruscetti: Fauci, Collins, Varmus have NO interest in this disease!!! Sequestration will make things worse. Unpopular diseases will have an even harder time to get money. Private foundations is where it's at. #MECFS
Gupta talking about location effect. Extreme stress/trauma: some conditioning happens in brain. Limbic system/brain makes mistake and over responds and keeps creating immune response even after insult is over. Keeps battling insult that does no longer exist. Gives opportunistic viruses a chance to take hold. When shift environment, brain has no frame of reference and immune system can reset. (Not sure I got that right) #MECFS
Dr. K: it's all about studies. If there is only $3 mill per year in research money, who will do validation studies? W/o that, study won't catch on. Grant money not given for validation studies, typically. Also need business partners who will market biomarkers.
Dr P: several abx = cytokine blockers. That's why sometimes patients feel better on abx.
# MECFS Questions: Any other doctors (besides Enlander) prescribing MAF? Klimas: no. Peterson: no.
dr. P: interferon made everybody really sick. Tried years ago. ... Concept of flogging immune system w/ current treatments (cont……cont) --> viruses go into remission --> immune system turns off. Simplistic explanation.
Dr. E: MAF normalized the immune system. It doesn't stimulate it.
CPET 4 hours: BP, pain, oxidative gene expression. Not so much immune gene expression at that point.
CPET 15 minutes: ten top genes are signaling for inflammation, which does not happen in healthy controls. Happening (cont…
…cont) very fast. Therefore, second trial measured at 3 min (earlier)
CPET 15 minutes: failure to up regulate cortisol. Of course, patients can't exercise.
CPET: in ME, not a lot differences in gene expression at time 0 (unlike in GWI).
It's not just that cytokines are abnormally expressed. It's also about how they talk to each other.
IL 5 mediates abx production. Affects autoimmunity.
Neuropeptide Y is a strong biomarker.
NK cell function correlates well with cognitive dysfunction.
When ppl are asking when we will have biomarkers, we should answer, when will our existing biomarkers accepted?! We (cont…
…cont) have plenty of biomarkers.
NK cell function is a much better biomarker than PSA for prostate cancer.
Dr. Klimas: Clinically you can't tell GWI and ME apart. Gov't giving $60 mill to GWI. Only $3 mill to ME.
Jay Spero asking brilliant q. about 1-day vs 2-day test. Dr. Becker's reply: 24, 48, 72-hour time points for blood draws. Dr. E: (cont…
…cont) study designed 2 years ago. Didn't know then that two days of testing was key. (My comment: frustrating!)
Dr. E: GET can produce adverse results. Enlander study of PEM trying to disprove PACE and NICE.
Dr. E: SPECT scan abnormal area = limbic system. Effects on cognition, emotional life, sleep, memory formation.
Dr. E: Judy's research helped tremendously even though disproven later b/c of media coverage for disease.
Dr. E: Kerr (who dropped out of field and he hasn't heard from him I a while. Kerr lost his position at London hospital.) started (cont…
…cont) abnormal-gene-expression research in ME. Was hoping to develop diagnostic test.
Dr. E: tx for methylation-cycle issues: BetaMax, Lectelyte, Catapult, immunoprop, immunoplus
Dr. E: hepapressin derived from kutapressin. Initially used against shingles virus.
Dr. E: HHV-6 discovered in '86 by Ablashi. Two types. A and B. Very potent virus. Can go places that other viruses can't. E.g., heart.
Dr. E: every major chronic illness comes with secondary depression. But nobody would suggest that lymphoma, e.g.,is a psychological (cont…
…cont) disease even if accompanied by depression.
Dr. E: Some ppl in England have made a career in claiming that it's psychological.
Dr. E: This is a physical disease. It is NOT a psychological disease!!!
Dr. P: likes Vistide because easily controlled (b/c given via IV) and toxicity easily monitored. Valcyte often not well tolerated. (cont…
…cont) Valtrex for herpes simplex.
Dr. P: 15% of his patients have active herpes infections. He treats with Valcyte, Vistide, Valtrex.
Dr. P: aggressive tx has the most chances of success.
Dr. P: priorities: urgent health issues, co-morbid condition s, disruptive and disabling symptoms.
Dr. P: Lipkin cytokine findings: cytokines are amenable to tx.
Dr. P: Rituxan response in Norwegian trial relatively moderate. Re-tx required. 4/15 patients had lasting effects. Very expensive drug.
Dr. P: Synergy trial: Ritalin. 120 participants at 4 sites.
Dr. P: Valcyte often not tolerated. Needs to be taken over long time. For ppl who tolerate it, moderate efficacy. If no side (cont…
…cont) effects, it probably has no effect.
Dr. P: 70% of patients had partial or full response to Vistide.
Dr. P: retroactive Vistide "study" (analysis). Dramatic improvement on VO2 max and NK cell function.
Dr. P: CMX001 broad-spectrum AV. Very safe and effective. Oral form of Vistide.
Dr. P: Ampligen open-label, compassionate program. Patients require prolonged tx (2 years) and ret-reatment. About 70% of ppl return (cont…
…cont) to pre morbid state.
Dr. P: Immunovir not licensed in US, but some ppl find ways to import
Dr. P: Ampligen is the only drug that has potential of returning ppl back to work.
Dr. P: most common finding is immune dysfunction.
Dr. P: Ampligen approved in Canada, but not US.
Dr. P: Almost all patients have unrefreshing sleep.
Dr. P: always starts with low dose of drugs because patients are more sensitive to drugs.
Dr. P: higher percentage of brain tumors and lymphomas in long-term patients.
Dr. P: always starts tx with what's most troubling. Then co-morbid conditions (e.g. hypothyroidism).
Dr. P: he's tired of talking about disease criteria. We need to move on.
Dr. P: drug trials need to be large, need endpoints and need well-defined patient groups.
Dr. P: Well documented, validated endpoints needed for drug approval.
Dr. P.: high degree of disability. average income $15k. Food insecurity.
Dr. P: drug development takes 8-15 years.
Dr. P: biomarkers not necessary for drug approval.
Dr. Peterson @ Enlander conference: evidence-based medicine is a problem b/c there is little of that in ME/CFS.