Health rising blog post, by Cort Johnson, 30 June 2016: Bateman-Horne Center Tells NIH to Create Building Blocks For Success For Chronic Fatigue Syndrome
“The Bateman Horne Center – a clinic specializing in ME/CFS, with a large number of patients who have been carefully and accurately diagnosed and continue to be treated effectively- is committed to bringing ME/CFS into the mainstream of clinical and medical science.” BHC
Every group brings their own particular slant to chronic fatigue syndrome (ME/CFS). The Bateman-Horne Center of Excellence (BHC) lead by Dr. Lucinda Bateman and Suzanne Vernon PhD brought it’s unique mix to the NIH’s request for what’s next for ME/CFS. It was heavy on developing the building blocks the entire field needs to be successful. That was no surprise given the Center’s leaders.
Dr. Bateman has a reputation as one of the most skilled diagnosticians in the chronic fatigue syndrome (ME/CFS) field and has participated in numerous clinical trials and research studies. Dr. Vernon is a long time ME/CFS researcher who brought the Solve ME/CFS Initiative’s research effort into the modern age. She was one of the first to call for the standards in research in ME/CFS. Both have thought deeply about what is missing in the ME/CFS field that is keeping it from moving forward.
The emphasis from the BHC was on “mainstreaming” ME/CFS; in other words, developing the field so that it’s researchers and doctors will have full access to the possibilities that our modern medical system provides. They called on the NIH to create the building blocks needed for the ME/CFS field to be respected, self-sustaining and growing.
With different subsets probably littering every study of ME/CFS, it could be argued that the key problem in ME/CFS is that nobody really knows who they are studying yet knowing that is a critical aspect of medical research. The BHC called for the NIH to resolve that issue.
This smart, pragmatic approach to the future is one of the reasons I hope the BHC is successful in its expansion plans. We need creative researchers who also have their feet on the ground; organizations who can produce the kinds of studies that will make the research and pharmaceutical world take notice. Well intended but poorly designed studies aren’t going to cut it anymore. We’re in a new age and the BHC is helping to usher in that age.
•See their full response here.
The BHC Recommendations (paraphrased)
1. Complete the IOM report: determine how to objectively measure the diagnostic criteria put forth by the IOM. Find ways to measure, for example, that determine how much fatigue or postexertional malaise a person is experiencing, or how unrefreshing their sleep is and use them in doctor’s offices, research studies and clinical trials.
2. Expand both the research and clinical side at the same time – In order for researcher to be effective they must have well- characterized patients to study. With few ME/CFS experts available and funding low too many studies now feature a hodgepodge of patients of uncertain origin. The NIH, therefore, needs to help build the clinical capacity for ME/CFS at the same time it builds research capacity.
3. Activity stressor needed in every study – Every study should assess the participants before, during and after an activity/exertion and should continue testing them until the post-exertional symptoms in all patients disappear (no more 24 hour testing protocols).
4. Find new ways to measure sleep that reflect the sleep issues found in ME/CFS – Current testing protocols simply don’t pick up all the problems with sleep people with ME/CFS have.
5. Subset patients with orthostatic intolerance using simple OI tests – Every patient in every study should be tested for orthostatic intolerance. Doctors can use the 10 min stand/lean test of blood pressure, pulse and symptoms to do this.
6. Cognitive testing – investigate altered cerebral perfusion and engage in innovative cognitive testing Do, for example, a 5-minute cognitive test before and after a 10 minute lean test.
- Translate FM research results into ME/CFS research studies to help understand central sensitivity, increased pain responses, etc. present in ME/CFS. (It’s crazy how little effort is made to understand ME/CFS in light of the findings from FM, and vice versa.)
- Focus more on neuroendocrine functioning – the HPA axis problems, high rates of thyroid disease, the high rates of gynecological disorders and low testosterone all suggest that hypothalamic and pituitary functioning should be better studied.
- Immune System – growing evidence of autoimmunity involving the central and peripheral nervous system (high prevalence of thyroid disease, high rate of celiac disease, B12 deficiency) suggests that bigger and better immune studies are needed.
The BHC’s Center of Excellence Project – Above all the ME/CFS field needs respect and trust in order to thrive as it begins to expand. The NIH, the FDA, academic centers and pharmaceutical companies need to know that the time and resources they’ve committed to spend on a disease will be fruitfully spent. The BHC brings the kind of rigor to ME/CFS that these entities trust.
It’s timing is also impeccable. The BHC is seeking to expand just as the field is being reinvigorated. This is an opportunity not to be missed. With the decades of experience Dr. Bateman and Dr. Vernon bring, the BHC should be a key cog in our expanded effort to understand and treat ME/CFS. Currently it can only see a small portion of the patients that want to be there. Support the BHC in its efforts to build an expanded treatment/research center serving the western United States. Find out more here.
“BHC is a unique example of an independent non-profit integrative health center where medical care informs research, and research informs medical care. Efforts should be made to encourage the development of additional centers of excellence for ME/CFS in order to create collaborations between well-qualified patients and research partners.”