Tristan Loscha
Member
- Joined
- Dec 18, 2018
- Messages
- 2,206
The ME/CFS as well as Gulf War Syndrome people are doing privately funded open studies collaborating their findings across research groups around the world. They are making significant headway. They have been forced into this position due to lack of funding from the NIH.
I see this as a blessing - they are working for the patient. I have listened to dozens if not hundreds of hours of their medical symposiums for the last two years and have been greatly impressed with their headway (with the exception of a study on LDN). However, sadly, the scientists are working frantically to prove a hypothesis to get the attention of big pharma to develop a drug rather than either looking for a cure or a biohack. In one way they are being very open minded in their research and in another way so closed minded because once they have pharma's attention all research goes behind closed doors. (BTW - they have proven all types of hypothesis, far more than most any other disease, but their funding continues to be denied - thank God.) It goes without saying that getting funding is difficult, but I think it's due to the model they are using. I think there is great room for education and improvement in the marketing of fundraising for crowdsourcing/patient funded studies.
Being well aware of the corruption within universities, pharma, the cdc and fda, patients would do much better to provide funding for what ails them. I think you would be in an amazing position with support from patients. But your battle with the big guys..... IDK.
On another note, I know a doctor who does nothing but fill LDN prescriptions all day long. He is licensed in all 50 states. He might be a possibility. I also know a PA who specializes in in BHRT and does telehealth in all 50 states - both of these were in business prior to CoVid and the new relaxed rules. I think more and more doctors who are desperately trying to remain independent are looking for ways to help their patients and stay in business. We currently have a wave of doctors whose eyes are being opened - the time is now.
Recently I had an appointment with an out of state doctor (6 hours away and I'm not driving more than down the street right now) and they were certain they couldn't do telehealth with me. I pushed them to look into it further. One option we discussed was for me to drive to my doc in their state (30 minutes) and have a three way conference appointment. In the end they found out that they could indeed do telehealth with me. They said it was because there wasn't such a specialist in my state but I'm not sure that was the real reason. Maybe.
If the rules aren't relaxed enough for all 50 states, then I would add WA and CA to your list.
regarding Gulf War Syndrome,one of the causes is iatrogenic.The prophylactic Malarial Mefloquine causes in subsets of consuments (Soldiers) severe Damage:
Adverse effects
Common side effects include vomiting, diarrhea, headaches, and a rash.[1] Severe side effects requiring hospitalization are rare,[10] but include mental health problems such as depression, hallucinations, anxiety and neurological side effects such as poor balance, seizures, and ringing in the ears.[1] Mefloquine is therefore not recommended in people with a history of psychiatric disorders or epilepsy.[1]
Neurologic and psychiatric
In 2013 the United States Food and Drug Administration added a boxed warning to the U.S. label of mefloquine regarding the potential for neuropsychiatric side effects that may persist even after discontinuing administration of the drug.[19][20] In 2013 the FDA stated "Neurologic side effects can occur at any time during drug use, and can last for months to years after the drug is stopped or can be permanent."[21] Neurologic effects include dizziness, loss of balance, seizures, and tinnitus. Psychiatric effects include nightmares, visual hallucinations, auditory hallucinations, anxiety, depression, unusual behavior, and suicidal ideations.
Central nervous system events requiring hospitalization occur in about one in 10,000 people taking mefloquine for malaria prevention, with milder events (e.g., dizziness, headache, insomnia, and vivid dreams) in up to 25%.[22] When some measure of subjective severity is applied to the rating of adverse events, about 11-17% of travelers are incapacitated to some degree.[13]
Furthermore:
Mefloquine was formulated at Walter Reed Army Institute of Research (WRAIR) in the 1970s shortly after the end of the Vietnam war. Mefloquine was number 142,490 of a total of 250,000 antimalarial compounds screened during the study.[3]
Mefloquine was the first Public-Private Venture (PPV) between the US Department of Defense and a pharmaceutical company. WRAIR transferred all its phase I and phase II clinical trial data to Hoffman-LaRoche and Smith Kline. FDA approval as a treatment for malaria was swift. Most notably, phase III safety and tolerability trials were skipped.[3]
The drug was first approved in Switzerland in 1984 by Hoffmann-LaRoche,[31] who brought it to market with the name Lariam.[32]
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