Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Great idea Jimbob. I think this is a special project. I don't think you'll be able to get in yet - they're limiting the participation to four doctors - Dr. Klimas, Dr. Lapp and ........:innocent1::innocent1::innocent1: I can't remember. But get in there and support the project.
I just think we REALLY need to maximize our resources. I was just looking at the list of ME/CFS research studies on PubMed---there are hardly any! There's lots of papers but very few research studies trying to figure out the physiology - what's actually happening to CFS! Its been that way for as long as I can remember. Its a damn shame but this project will make our dollars go much further so I'm all for it :victory::victory:
And why did the CFIDS Association of America send out a notice of a study which has no IRB approval?
Generally speaking, researchers are not prohibited from discussing a potential study with participants before IRB approval, but they cannot enroll patients without IRB approval.
I'm seeking more info on questions raised in the other thread - including the status of approvals needed for this study - and will post there when I can.
Jenny:
On a personal level i really appreciate that you as a sick person donate so much of your time and energy to the disease....but looking at this from a professional point of view and as a suffering patient.....i just wish you and other caa supporters cld admit that the organization has been very ineffective over the past 20 years. there has not been 1 clinical trial of a drug to treat the disease.
we are saddled with a ridiculous name that does not accurately describe the suffering many of us experience on a daily basis. when sick ppl feel embarrassed to say they have chronic fatigue syndrome because they know they will just be belittled or considered to be not seriously ill....we have a problem.
the other day someone posted on facebook an article from 20 YEARS AGO. when i first started reading it i thought it was a recent article...EVERYTHING was the same...talking abt a potential retro-virus causing the disease, claims of contamination and calls for additional scientific/medical studies of the disease and drug trials.
i know the US govt is a behemoth to fight...and they have not been on our side...but the CAA's job was to budge that monster and they have been unsuccessful.
i worked for a large corp for 15 years. i was in charge of an $8 billion dollar business. I made $160K/year....if my business was not profitable, I would have been fired. CAA has different measures of success (not profit or loss), but they have failed....the leader of the failing organization needs to be fired or resign and someone who can make change happen needs to replace her.
The things that need to happen are:
Drug trials for treatment
Biomedical markers
A New Name for the disease
you can list all the different things the CAA has done over the past 20 years until the cows come home, but the truth is:
the patients have not seen improved care...
nothing, nothing, nothing has changed in 20 years.
If I were the president of the CAA I would be embarrassed by this lackluster scorecard and apologize to the patient base, hang-up my hat and resign....hand the reigns over to a change maker.
Have some respect and compassion for the sufferers of this disease.....CAA CEO: stop taking $178K/year for producing no tangible results...it's really a crime!!!!