Was an excellent call. He said he would release some notes of it and medications he referenced. Id love to get that.
Here is a recap that was posted on FB by someone who listened to the call:
Work done up to now
No FDA approved Meds, not many large clinical trials that can lead to FDA approval. Doctors have no recommendations in the handbook, must create their own program, prescribe off label. They take on risk and become for liable for problems.
Bad recovery rate, 5% get back to where they were, specialist greater than 5%, maybe only 10 specialist in this county.
Insurance will not cover drug until FDA approvals made.
Time to start looking at the importance of what happens to an individual not just focus on groups.
Stimulants
Classic Western Approach: stimulate the brain to wake up (dopamine, anphedamine; risk keep up for a long time, addiction potential.
Antidepressants
not strong evidence, some moderate support,
may not want to risk manipulating regulating hormones unless major depression
Anti Viral
does not help the majority of CFS, unless high loads of viral titers
** Immune Modulators: Look potentially promising class of medications (over active Immune system).
Suppress immune system globally or targeted areas.
Antihistamines not really working
Hydro Cortisone does work for some people.
***Ampligen; biggest problem expensive, can not find it, no FDA approval for anything. Must get exemption directly Doc to FDA for patient, not covered by insurance.
***Rutuxan depletes B-cell, MS, arthritis, suppresses that part of the immune system. FDA approval for some uses.
Rare infection of the brain that are fatal. Not practical for CFS until FDA approval (less risk to Doc).
Neuro Transmitters
Block seratonan, did not work
Sedative, lower BP
Mental Functioning, speed up processing, not really helpful in CFS
Cell Metabolism booster, provide the body with more building blocks (do not need prescriptions. Not great evidence so far.
lack amino acids
not producing cells and energy like it should
L-carnotine might be
multiple vit
Vit D
D-Ribose
CoQ10
clinical
trials.gov
no active enrolling trials for CFS
scary to see
every study, stopped, investigator moved to other institution, finished but results are not out yet. enrolling by invitation only.
Past Studies stopped problems, support withdrawn,
Netherlands is the only recruiting study.
No active studies in the US.
