Just My Honest Opinion

In this Part 2 of my review of the December 2017 Chronic Fatigue Syndrome Advisory Committee meeting, I'll address a question discussed there: Should we target specialists or primary care doctors in a physician education project? Dr. Jose Montoya said in the meeting that the best place for the type of clinical care SEID (systemic exertion intolerance disease) patients need is in the specialist setting. I absolutely agree. Those who are our experts now give a long time to each patient, an amount of time that is not profitable for each patient in a primary care setting. Our medical care system is still set as a pay for service. "It's not unusual for primary care doctors' appointments to be scheduled at 15-minute intervals," says a 2014 USA Today article . This is not a match for our multi-system, multi-symptom, multi-treatment disease. Setting aside the time element, there is also the level of knowledge needed. Specialists are specialists because the...

The December Chronic Fatigue Syndrome Advisory Committee meeting reflected much progress. It's refreshing to see some new faces taking up the advocacy. As one group let's go or moves on or dies, another takes hold of pushing the government forward, giving voice to the patient experience. And they do so with such credibility, bringing passion and reasonableness, and real-world patient and professional experience. Our patient and patient organization advocates are themselves experts. They are impressive in what they bring to the discussion. And I just can't get over the difference in attitude and effort and knowledge of our current ex-officios (except a few, of which I'll address later). I remember when the FDA ex-officio slept during the meetings--and when he had to participate, showed himself to be a real prick. I just can't get over how knowledgeable the current FDA rep Dr. Keith Hull is about our disease. And I've not seen him before. Very impressive. He...

Day after day, from my bed, I watch my social media newsfeeds for some news on my disease, especially for anything happening locally in Alabama. But news, by nature, often comes when not expected. And this happened in October, while I was watching a video from Open Medicine Foundation of a presentation at the International Association of CFS/ME conference . Dr. Jon Kaiser was speaking, and he said: “There’s a researcher named Victor Darley-Usmar at the University of Alabama, who works with the Seahorse company—and I think he’s a genius. He is developing an equation to take all the data that the Seahorse test provides and distill it down into a single number called the—he calls it the ‘BHI,’ the bioenergetic health index. So, you know, it would be like getting a PSA or [inaudible]. You get a bioenergetic health index from a blood sample, looking at white blood cell mitochondrial energy production. So I think that’s the cutting edge of this field, and once we start sending our patient...

Those who follow my blog know I was disheartened at the negative reaction to the Institute of Medicine's report suggesting "systemic exertion intolerance disease" be the new label for "ME/CFS." I predicted that insisting on "myalgic encephalomyelitis" will leave us with the status quo, which means the disease will continue to most commonly be known as "chronic fatigue syndrome." My prediction, thus far, has proved true. I have spoken to others who share my view and actually prefer "SEID." I said, "Shouldn't we also be advocating for what we think is best?" I was told, "Give it up. The ship has sailed. It's over. Move on. Science will solve it." This greatly disturbs me to the point of tears. We have this opportunity, and we are squandering it. How many more years must we be stuck with harmful disease names? The reason the name wasn't changed in 2003, our last opportunity, was because science would...

The date is July 21, 2006. It's the day I realized my gradual decline of function over three years into complete debilitation is from an incurable disease with no fix. I realized, thanks to the Internet, that I likely have the illness misnamed as "chronic fatigue syndrome." The prognosis described on multiple websites made me face a tremendous loss: I'll likely never go hiking or canoeing again in my life. I was only 40. While there were other day-to-day limitations and losses, those two were my great joys. As the grieving process began with tears rolling down, past words of wisdom came back to me. Some were words I had spoken to others; while others were words I had read or heard: "If you focus on what you can't do, then you will miss joys of what you still can do." "Everyone has limitations, some financial, others physical, others family situations. But life can still be full and fulfilling and joyful, despite those limitations." "None...

It’s been a tough week in ME/CFS land. Researcher / institute divorce and allegations of researcher fraud have left many patients disillusioned. I’ve seen many of my ME/CFS peers ask, “What do we do now?” Others have said they are staying away from social media, can’t take any more bad news. For me, the WPI / Mikovitz fall out was not shocking as the signs were on the wall, along with rumors passed in private conversations.  Allegations of fraud were surprising to me, but are far from confirmed at this point. I hope two things: that the Ian Lipkin study into XMRV survives and comes to completion and that patients who thought they had a savior do not lose hope and make decisions which cannot be reversed.  I have always advocated that all biomedical research is worthy of support and the demands of loyalty to one researcher are harmful. Now, I hope recent developments will win more patients over to this thinking.  The researchers must compete for government funding and...

ME/CFS patients find themselves in a deep hole of darkness and despair. Trying to crawl out of that hole requires great courage in the face of ignorance, bias and worst, apathy. Imagine decades of spooning away the dirt to make progress while people pass over the hole concerned only with their own schedules and recreation. Oh, occasionally, a passersby will say, "So sorry to see you in that hole." And then to add insult to injury, literally, a person will say, "How did you get in that hole? What did you do? Why can't you get out?" It's even worse when someone says, "Maybe if I pour some dirt on you, you will get out of the hole." The frustration, the fear, the anger builds and builds. And there the ME/CFS person is, still digging away at the hole, trying to get out. Many children who suffer from neglect and abuse will channel that anger into destructive, unproductive behavior. They do things that hurt themselves as much as the object of their a...