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 just be impaired psychologically, and the life that that person had enjoyed before the illness totally destroyed, devastated by this disease.
It was not possible that I could put the two things together. But I have felt drawn to that devastation, to that suffering, to the point I feel that we in the medical profession, and I have said this in public,
We owe an apology to you, the patients 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, be at least acknowledged that they have it, and be holding hands and saying ‘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 this has changed, and thanks to patient activism
thanks to organisations like Carols, like Solve MECFS , and Carol and Sadie and Alison, and their stuff, now the disease is viewed by a growing number of physicians and researchers, outstanding, as a real illness with a biological basis. The IOM , the Institute of Medicine now is called National Academy of Medicine recognises the illness as important as medical researchers and that has made a huge impact in many places.
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, why one daughter but not the other. One scenario that is possible is that it has to do with genetics, so that is now possible to be investigated and all the technology now available to see the 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 that we have different glasses with which we are seeing the disease, but also we have all these new technologies that with healthy funding and attitude we can get closer to where we should have been many years ago.
We are closer than ever to really pin down what this illness is. I don’t have a heart to tell you if it was not real what I see happening in many research centres, if it was the case because I couldn’t conceive giving you false hope when you have been betrayed and ignored and humiliated for so long.
Finally, I am 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 treat with anti-inflammatory drugs, and we control the herpes viruses, there is a group of patients, I have to say it because I feel morally irresponsible not saying it, and at the same time I fell morally responsible saying it but there is that group that gets better and I think, what can I do. They go back to normal lives and they don’t come back to the clinics any more. And there is a group of patients that don’t respond.
But even for simple diseases like hypertension, high blood pressure, defined by two numbers, systolic and the diastolic, you have 20 drugs for hypertension, not every patient responds to the same drug, and the rest of the patients that have refractory hypertension never respond to that. So why are we gonna hold ME/CFS to different standards than traditional diseases.
So I’m grateful to Carol for having me here, and to John and Matt and Marcie for posting this but I think that hope is around the corner.
