Jared Younger CDC Talk Tomorrow To Bring Good News?

Cort

Founder of Health Rising and Phoenix Rising
Staff member
This could be good! Younger recently posted this on his Facebook site.

I've been traveling over the past few weeks in the northeast for a string of meetings. There are many things happening now! I can't give details, but I was encouraged to see many new groups working on fibormyalgia and chronic fatigue syndrome. Pharmaceutical companies are showing growing interest in developing better treatments for these conditions, which is matching the greater attention we are seeing from federal health organizations. It has been a very long time coming, but I believe we are finally seeing a shift in emphasis that will lead to quicker discoveries and better treatments. More info coming soon!
Maybe soon is tomorrow ???

The Conference Call

Thursday, June 23, 2016
3:00 pm - 4:00 pm EDT
CDC CFS PATIENT-CENTERED OUTREACH AND COMMUNICATION ACTIVITY (PCOCA) CONFERENCE CALL
Call number: 1-800-369-2100
Participant Code: 7673924
 

bobby

Well-Known Member
@Cort I know! but I'm also apprehensive to have hope and see it been crushed for the umpteenth time... what this guy is doing is so interesting though, I really hope he finds some clues. I also love how he keeps in touch with the patient community, that is the way all researchers should work!
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Darn - it is :)

Another good example of Brain Fog!
 

Horizon

Active Member
Was an excellent call. He said he would release some notes of it and medications he referenced. Id love to get that.
 

Remy

Administrator
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.
 

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