Reports from the 2 day ME/CFS Clinician Summit 2018 held in Salt Lake City Utah.
1. Bateman Horne Center blog post, by Stephanie Griffin, 12 March 2018: A consensus-driven ME/CFS clinician coalition takes shape
The primary outcomes are two-fold.
First, an evidence-based paper on diagnostic and treatment methods to be published in a peer-reviewed medical journal and
Secondly, to produce a paper for the research community focused on clinician guided treatment trials, identification of possible illness subsets, and observations of illness presentation.
There are many other goals to accomplish through this effort. Most notably, encouraging clinicians and researchers into the field and the most efficient and effective ways to mainstream the illness within the medical community.
Consensus was reached among this group of expert ME/CFS clinicians to collaborate on the denouncement of the PACE trial and the importance of language. A dialogue ensued resulting in the consensus to always use ME/CFS and not only “Chronic Fatigue Syndrome” alone which has allowed for disbelief, misconceptions and stigmas to persist.
Read the full article for more about the goals, outcomes and participants
2. Medscape blog post, by Miriam E Tucker: Much can be done to ease ‘Chronic Fatigue Syndrome’ symptoms
The article covers: Assessment; Tests; Treatments; Help with additional needs such as disability verification and aids; and the importance of Validating the illness.
Extracts:
“One of the messages I’d like to send to physicians is not to have an all-or-nothing approach to this illness, but to break it down into its parts, and see what you can get hold of with the history, objective markers, and clinical intuition. And then, it’s not unreasonable to try some things that are not harmful or expensive,” Bateman told Medscape Medical News…
Assessing functional capacity is key, Bateman said.
“It’s an illness that impairs people’s ability to function in their daily lives. Clinicians need to ask about function, and what happens when people exert themselves both physically and cognitively.”
One revealing question is, “What would you be doing now if you weren’t ill?” Typically, as opposed to depressed patients, those with ME/CFS will have a laundry list. “Our patients are trapped in bodies that don’t work,” Bateman said. “They’re desperate to do more.”
Medications that were endorsed by a majority of the panel include low-dose naltrexone for patients with pain and cognitive dysfunction, low-dose beta blockers or fludrocortisone for those exhibiting orthostatic intolerance, and intravenous Ig for patients with a variety of immune dysfunction indications including low IgG or IgA or recurrent infections.
Also universally viewed as critical for primary management of ME/CFS is the concept of adaptive pacing. With it, patients learn to conserve their limited energy by carefully adapting their activity so as not to exceed their anaerobic thresholds and thereby precipitate a “crash.” One helpful website to offer patients is the CFIDS & Fibromyalgia Self-Help Program website.
In general, much of the approach involves thinking outside the box, and sometimes borrowing from other fields, Bateman said. For example, she points to data suggesting that amantadine may improve fatigue and cognition in multiple sclerosis. “There’s no reason we can’t give [patients with ME/CFS] a trial of amantadine. Just making these cross-connections is very helpful.”…
3. Video: Dr. Bateman’s Summary of Clinicians’ Summit March 2-3, 2018
