Trial By Error: This Year’s US Clinician Summit

By David Tuller, DrPH

The PACE trial and other unacceptable studies from the CBT/GET ideological brigades have had an enormous impact around the world. Luckily, in the US at least, momentum seems to have finally shifted away from this bogus treatment paradigm. The shift, while welcome and long overdue, does not automatically mean more effective treatments are immediately at hand. The field’s obsession with psycho-behavioral models has held back biomedical research for decades, and patients have borne the harms of these misplaced pursuits.

Last year, advocate Mary Dimmock, whose son has ME/CFS, and Dr Lucinda Bateman, founder and medical director of the Bateman Horne Center in Salt Lake City, gathered together several of the leading specialists from around the country for a pow-wow. Among the goals was to clarify and focus on the many clinical care needs of ME/CFS patients and strategize about how best to move forward.

Here’s a link to Miriam Tucker’s excellent coverage of that meeting for Medscape: https://www.medscape.com/viewarticle/893766

Here’s an excerpt from Tucker’s article about the clinicians’ discussion of treatment options at last year’s summit:

Notably missing from the recommended treatment list are cognitive behavioral therapy aimed at overcoming “false illness beliefs” and “graded exercise.” (A trial published in 2011 suggested those interventions were helpful, but it has since been faulted by the ME/CFS community because of its patient selection criteria and methodological issues.) The summit panel voted unanimously to include a statement rejecting those modalities as inappropriate and potentially harmful.

Last month, the group met for a second time. Below is a report about the meeting from the Bateman Horne Center’s website.

I am told I should also remind folks of my current Berkeley crowdfunding in every post, so here it is: https://crowdfund.berkeley.edu/project/14941

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What’s Next for the ME/CFS Clinician Coalition?
by Stephanie Griffin

On March 15-16, leading ME/CFS clinicians from across the United States gathered in Salt Lake City for the second annual ME/CFS Expert Clinician Summit. The goal of this summit was to grow the collaborative network of disease experts, identify ways to expand their ranks and improve the clinical care of patients with ME/CFS, and accelerate the ME/CFS research agenda, with a particular focus on drug trials and sub-typing strategies.

“The ME/CFS Clinicians Summit is a historic opportunity to distill decades of knowledge into consensus documents that will help millions of patients, providers, and researchers to further understand ME/CFS and, finally, be able to see the disease in its entirety,” said Dr. Jose Montoya, one of the Summit attendees.

ME/CFS affects an estimated 1 to 2.5 million Americans and yet an estimated 85-90% remain undiagnosed. Even once they are diagnosed, patients struggle to get appropriate clinical care and are sometimes harmed by treatment recommendations because their doctors don’t understand the disease or its clinical management.

To address this gap in understanding, the summit attendees focused on driving consensus across the group on clinical practices so these could be mainstreamed across the broader medical community. They agreed to implement a website as one vehicle to share this information. Publishing expert consensus on laboratory tests and procedures useful in diagnosis and management as well as guidance of use of medications in peer-reviewed medical journals used by healthcare providers is also planned.

Compounding the lack of accurate clinical management guidelines, there are less than two dozen ME/CFS expert clinicians in the entire country and the majority of them are nearing retirement age. This negatively impacts both the ability of patients to access clinical care and also our ability to ramp up research. To address this clinical crisis, the summit attendees discussed ways to advance education of all clinicians but especially ways to grow the ranks of clinicians who specialize in ME/CFS by providing tele-mentoring to those clinicians, starting with those who have already begun to develop expertise in the disease.

Further complicating the clinical management of ME/CFS is the lack of FDA approved drugs for this disease. And yet, ME/CFS expert clinicians are successfully using drugs to help improve the quality of life of people with ME/CFS. The ME/CFS Clinician Coalition agreed that the time is ripe for clinical drug trials and agreed to the following statement:

The field of ME/CFS needs evidence-based treatments. The combined clinical experience of ME/CFS clinicians supports efficacy of several treatments that have potential and warrant testing. Appropriate funding mechanisms are warranted. In addition, funding should support a clinical trials consortium. The ME/CFS Clinician Coalition agrees that our first priority is a trial of LDN (low dose naltrexone).

As a first step, the ME/CFS Clinician Coalition agreed that a first priority is a trial of LDN.

The physicians in this strategic group include:

Dr. Lucinda Bateman – Internal Medicine, Salt Lake City, Utah
Dr. Alison Bested – Hematological Pathologist, Miami, Florida
Dr. John Chia – Torrance, California.
Dr. Theresa Dowell – Family Nurse Practitioner, Flagstaff, Arizona
Dr. Susan Levine – Infectious Disease, New York, New York
Dr. Anthony Komaroff – Internal Medicine, Boston, Massachusetts
Dr. David Kaufman – Internal Medicine, Mountain View, California
Dr. Nancy Klimas – Immunologist, Miami, Florida
Dr. Charles Lapp – Charlotte, North Carolina
Dr. Jose Montoya – Infectious Diseases, Stanford University California
Dr. Ben Natelson – Neurologist, New York
Dr. Morris Papernik – Internal Medicine, Hartford, Connecticut
Dr. Dan Peterson – Internal Medicine, Incline Village, Nevada
Dr. Richard Podell – Internal Medicine, Summit, New Jersey
Dr. Irma Rey – Environmental Medicine, Miami, Florida
Dr. Andy Selinger – Family Medicine, Hamden Connecticut

This collaborative effort is being led by Dr. Lucinda Bateman of the Bateman Horne Center and Mary Dimmock, parent of a son with ME/CFS. After decades without clinical guidance, Cindy and Mary proposed an opportunity for the leading ME/CFS physicians to collect their clinical experience and intuition about ME/CFS. This work has expanded into a strategic effort to bridge the gap between science and medical practice and improve the clinical outcomes for patients everywhere.

If you are a US clinician and interested in additional information or to be contacted directly please submit this form.

Comments on this entry are closed.

  • Rivka 2 April 2019, 4:00 pm

    I am so grateful to all who worked on this summit — so grateful! Thank you thank you thank you. (Unfortunately I can’t tolerate LDN.)

  • jimells 2 April 2019, 4:03 pm

    What’s up with the IACFS/ME organization? Is it defunct or maybe they gave up on their website? Their “Primer for Clinical Practitioners” [1] was a useful publication, but their 2016 revision is now three years late. It seems like they were doing the same things that this new group is now trying to set up.

    Why does it feel like once again we are witnessing another re-invention of the wheel? Will this effort, like the CFS Advisory Committee, also peter out in a few years, leaving behind little more than a static website?

    I’m ready for this real-life Groundhog Day movie to end any decade now, but I’ll probably be dead before that happens.

    [1] http://iacfsme.org/ME-CFS-Primer-Education/News/News-Related-Docs/2014/ME-CFS-Primer-for-Clinical-Practitioners-(2014-rev.aspx

  • Lori 2 April 2019, 7:05 pm

    LDN doesn’t work. I tried it for months. I am pretty sure Younger did research on it and the word is it didn’t work.

  • Alicia Butcher Ehrhardt 2 April 2019, 7:20 pm

    I got a doctor to prescribe the LDN, but haven’t tried it – and he’s in NJ, while I’m in California now. I would need help, support, information on titrating to the right dosage, and knowing when to quit and how to tell it’s not (or is) working for me.

    Many of us react badly to even small amounts of many meds, and it is scary to be on our own – because of the ignorance of those who would help us.

    I’d love to have someone other than Facebook groups figure this out.

  • Sambista 3 April 2019, 11:31 am

    I second the comment that LDN does not work. I was given LDN way back in 1997, to no avail. After so many, many years, I do wish we could move beyond utilization of drugs that do not work.