Dr. Jose Montoya On Believing ME/CFS Patients
Dr. Jose Montoya of …… spoke at a 2018 *Solve M.E. event.
“Dr. Jose Montoya, a clinician who has fought for people with ME/CFS for nearly two decades, addressed those who suffer from ME/CFS on behalf of all clinicians. Dr. Montoya is a powerful and caring ally, and we were moved by his wisdom and empathy.”
Full transcript:
Dr. Montoya: “You know, I was drawn to ME/CFS when I saw my first patient with the full-blown disease. And I could not believe that that person could be making it up, that they could be impaired psychologically, and the life that that person had enjoy before the illness? Totally destroyed, devastated by this disease. It was not possible that I can put the two things together.”
“But I have felt drawn to that devastation, to that suffering, to the point that I feel that we in the medical profession, and I have said this in public, we owe an apology to you, to the patient, for what you have gone through, and not only the suffering from the illness, but having been ignored, that’s the part that I think is tougher. We don’t wish illness to anyone, but if someone has it, at least being acknowledged that they have it, and at least be hold their hands and being told, ‘I’m sorry you have this disease, and we will try to do our best for that.’”
“And for three decades it has gone like that, but things has changed.
“And thanks to patient activism, thanks to organizations like Carol’s Solve ME/CFS, and Carol and Sadie and Allison, and the entire staff, now the disease is viewed by a growing number of physicians and researchers understanding this is a real illness with a biological basis. The IOM, the Institute of Medicine now is called National Academy of Medicine, recognizes the illness as important, as needed to be researched. And that has made a huge impact in many places.”
“The Genetics: why some patients get the disease and others don’t. That’s the mystery. Why is the husband, but not the wife? Or vice versa? Or why one daughter, but not the other, or one son, and not the other? It’s possible that has to do with genetics. So that is now possible to be investigated. And all the technology now available to see brain and see the activity of the brain, that was not possible a few years ago. And now it is there. So I want to relate to you, not only we have different glasses with which we are seeing that disease, but also we have all this new technology that with the healthy funding and attitude, we can get closer to where we should’ve been many years ago.we are closer than ever to really pin down what this illness it is.”
“And I wouldn’t have a heart to tell you that, if it was an idea of what I see happening in many different centers. If it was the case, I couldn’t conceived giving you false hope when you have been betrayed and ignored and humiliated for so long.Finally, I’m sharing this news with mixed feelings because we do have a group of patients that when we treat with anti-inflammatory drugs, the immune system is overactive, we give them anti-inflammatory drugs, and we controlled the herpes viruses. There is a group of patients, I have to say it because I feel morally irresponsible not saying it, and so I feel morally irresponsible staying, but there is that group that gets better. What can I do? They go back to normal lives and they don’t come back to the clinics anymore. And there is also a group that will not respond. But even for simple diseases like hypertension, hyper pressure defined by two numbers, the systolic and the diastolic, you have 20 drugs for hypertension. Not every patient respond to the same drug. And there are some patients that have refractory hypertension, and they response to that. So why are we going to hold ME/CFS to a different standard than traditional diseases?”
“So, I’m grateful to Carol for having me here, and to John, and Matt, and Marcie for hosting this, but I think that hope is around the corner.”
*”Solve M.E. is a non-profit organization that serves as a catalyst for critical research into diagnostics, treatments, and cures for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Long Covid and other post-infection diseases.
Our work with the scientific, medical, and pharmaceutical communities, advocacy with government agencies, and alliances with patient groups around the world are laying the foundation for breakthroughs that can improve the lives of millions who suffer from various “long haul” diseases.”
There website is: https://solvecfs.org
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