December CFSAC Part 2: Touchdowns Will Win the Game

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 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 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 they know more than a primary care doctor about a segment of diseases.…

December CFSAC Commentary (Part 1)

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 was…

Introducing Victor Darley-Usmar, PhD, an Alabama Researcher Now Helping in a SEID Study

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 patients …

IOM Implementation: What's Missing (besides the name change)

In early 2015, the Institute of Medicine put out their long feared report on ME/CFS. They searched through the research, and a committee made of experts (both in the disease and in other pertinent fields) made some suggestions that are intended to influence US health agencies.
They recommended a new clinical criteria.They recommended a new name.They recommended a new diagnostic code with the new name.They recommended more research funding.They recommended a health provider education/dissemination campaign.They recommended the government set up a screen/diagnostic toolkit for clinicians.They recommended that the criteria be reviewed again in 5 years for any changes science my dictate are needed.The CDC and NIH have started work on implementing many of these recommendations. The CDC website is expected to be changed soon to have the new criteria. They have a workgroup to help them in the implementation. This workgroup includes patients, SEID experts and people from medical professional o…

It's the Name, the NAME, THE NAME!

So it's been a bit frustrating and disheartening for me due to personal circumstances, lately. I was looking to the January Chronic Fatigue Syndrome Advisory Committee meeting to be a justified distraction for a couple of days. But, it brought on more frustration, I hate to say. So, I must purge. And this is the place for me to do so.

On Friday, they revisited a previous recommendation because the committee did not get the response they had hoped for from the secretary/government agency. They were discussing what to do, reword? resend as is? don't sent again?

The recommendation is:
The IOM has acknowledged and identified a distinct medical condition involving systemic exertion intolerance with PEM and universal core criteria.  CFSAC recommends that the disease identified by the IOM be clearly distinguished from other causes of chronic fatigue, such as conditions described by Fukuda et al, 2005 Reeves, Oxford and other forms of chronic fatigue which include patients that do not …

Walitt Invited Shorter and Nath Approved Him

On November 9, Dr. Edward Shorter of Toronto gave a presentation to NIH officials on the history of ME/CFS. The fact this was going to occur was not shared in the NIH conference call with patients just 7 days before. It was quite a surprise considering the other NIH activities related to ME/CFS that was shared.

Dr. Avindra Nath, the NIH official leading the new clinical study on ME/CFS, was there on that patient conference call, coming in late. In fact, you can listen to it or read the transcript here.

When patients found out about this from someone not at the NIH, advocates sent out the alarm. One of them was Jennie Spotila. She wrote a blog and sent a letter to the leader of the National Institute of Neurological Diseases and Strokes (Dr. Walter Koroshetz) because Shorter's 2015 comments about ME/CFS were disparaging of the patients and discredited the biological basis for the disease (along with a book he wrote about it in the '90s).

I too wrote a letter. My letter focused on…

Be Careful; But SEID Will Still Make You Pay for that Vacation

Leading up to the trip, I couldn't know just how it would be. Would I be debilitated and have a headache and nausea right on the day of the flight? And would I end up with days in the bed, while my husband saw the sights of the tropical island?

Life with systemic exertion intolerance disease (SEID) means you never know just how much function, how much health, you'll have. Yet, do we just do nothing at home? Never travel? Live nothing of a life year after year?

Most, if they have a mild or moderate case, know that they must find any morsel of experience they can tolerate, as things may never get better and possibly will get worse.

So, my husband and I scheduled and saved for our once-a-year vacation, this time to Key West. Knowing my limitations, I tried to add some strategies to lessen the "exertion intolerance" effects:
I added a couple days to the trip so I would not be trying to see it all and doing too muchI arranged for wheelchair transport in connecting to the s…