Possible Treatments for GDD: All hands on deck
At the present time there is no money for research into GDD. As I have written in prior blogs this means that we have to pay attention to other diseases that are similar, such as Long Haul Covid and Long Haul COVID Vaccine, treatments that work for them may also work for GDD. Many drugs for other entities would be directed to reducing host immune response, or detoxification, which would be potentially of great help. Fewer drugs are developed for removal, and these would be generally for other heavy metal toxicities.
This present blog was inspired by seeing in the Lancet an article was published on a drug, investigational name Q-122 undergoing regulatory approval for hot flashes and vasomotor symptoms in women with breast cancer taking hormone therapy for breast cancer. Vasomotor symptoms: sweating, hot flashes, are also similar to what happens in some individuals with GDD. That is not to say that it will help GDD, but if a GDD sufferer, has breast cancer, and is receiving this drug, and it shows benefit for the vasomotor symptoms of the hormone therapy for breast cancer AND the symptoms of GDD, then that would be an important insight and advance.
On the other hand, not everything negative, in a positive way, the story of GDD, in many respects is also the story of new diseases (many iatrogenic) where sufferers actually take a lead role in understanding the nature of the disease and treatments. The internet has facilitated communication among individuals all over the world, which facilitates knowledge. Ofcourse this has to have organization and thoughtful leadership, as too many voices without careful thought into events can lead to chaos, and be destructive to knowledge advance rather than beneficial... This is probably true of everything though.
From my perspective, as the current foremost authority on GDD diagnosis and therapy, my principal teachers about GDD are the sufferers themselves. These are the individuals who have taught me the most, not other physicians/ scientists. So will sufferers tell me things that I don't know, even though I have written something like 16 peer-reviewed papers on the subject... absolutely.
So as I see it, rare or uncommon diseases in the modern era, especially those that are iatrogenic (caused by medical care) will be best advanced in knowledge and understanding by close cooperation between sufferers and investigators, both physicians, other health care workers, and the full range of scientists. Who knows more about the symptoms, but the sufferers themselves? and who would know more about the results of therapy, but the sufferers themselves. One caveat to this latter point is that the sufferers have to be taking optimal treatment, optimally performed, and not interrupt treatment because they don't like what is happening early on. Most treatments for most serious diseases is awful, especially early on in the course of treatment.
Iatrogenic disease is also another word in the modern era for : organized medicine does not want to recognize it, tries to suppress it, and as a result no funding to pay for research or treatment. But unfortunately early on, we just have to accept that reality, until findings becomes absolutely 99.99% irrefutable. Then things change.
For now, we pay attention to treatments for other diseases, and hope that by serendipity some great treatments get discovered for other diseases that have lots of money for research, that will benefit GDD as well. Serendipity has played a great role in many discoveries in medicine, like penicillin, the first of the effective antibiotics, from whose discovery all others have stemmed.
Serendipity though requires thoughtful observation and reflection, and that for now is our present status.
Richard Semelka, MD.