Evaluating Research and Treatments — Guidance from our Interdisciplinary Advisory Committee

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5 days ago
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People living with ME and Long COVID that meets the diagnostic criteria for ME (Long COVID/ME) are often desperate for answers, and understandably so. The absence of curative treatments and the history of medical dismissal our community has endured means that when something promises relief, people listen. In our community, we live with profound, disabling illness. We are not naïve. We are in need, and our openness to hope can make us vulnerable to unproven treatments and potential exploitation.

Our Interdisciplinary Advisory Committee (IAC) has put together some guidance to help evaluate research studies, programs, and treatments, particularly those that blend scientific language with commercial offerings.

The Established Scientific Understanding of ME and Long COVID/ME

Any treatment or research framework must be evaluated against what is currently known about the biology of ME and Long COVID/ME (LC/ME). The scientific consensus is clear and has grown substantially stronger in recent years:

ME and LC/ME are physiological (not psychological) diseases. ME has been classified as such by the World Health Organization since 1969. Research has consistently identified replicable, measurable biological abnormalities including reduced cerebral blood flow, immune dysfunction, endothelial dysfunction, metabolic disruption, and mitochondrial dysfunction.

ME is most often triggered by infection. The majority of cases (up to 80%) are post-viral or post-infectious in onset. Strong evidence points to viral triggers such as Epstein-Barr virus (EBV or “mono”) and COVID-19. Many patients describe “a flu that never went away.” According to an older study, small minorities reported non-infectious onset triggers: physical trauma such as a car accident (4.5%), pregnancy or surgery (4.5%), or an allergic reaction (2.2%). Less than 2% reported onset from stress or emotional trauma.

Psychological factors do not cause ME or LC/ME. Prospective studies have found that psychological factors do not predict who develops ME. A landmark 2024 study from the National Institutes of Health confirmed clear biological markers of illness, including a sustained immune response that exhausts T cells.
Historical trauma is not a demonstrated cause of ME. The theoretical framework that links historical trauma or adverse childhood experiences to ME lacks scientific support. Most patients have no trauma history, and the majority trace the onset of their illness directly to an infectious event. The framing of ME as a condition caused by or linked to ongoing stress (psychological or neurological) from past trauma is strongly related to the discredited “psychosomatic school” of thought, which has been extensively critiqued in the peer-reviewed literature as empirically unsupported and actively harmful to patients.

We raise these points not to relitigate settled science, but because they are the essential backdrop for evaluating any proposed treatment. An intervention whose mechanism of action depends on the premise that ME is caused or perpetuated by how the brain processes stress or trauma is built on a foundation that contradicts the current scientific evidence.

What We Look for in Credible Research and Treatment Claims

When evaluating any study, treatment, or program promoted within or to our community, the IAC considers the following:

Commercial interests: We take note when research studies or programs have a direct financial relationship with a commercial product or service. This does not automatically disqualify research, but it warrants careful scrutiny.
Potential for harm: We welcome innovative ideas and recognize the urgent need for effective treatments. However, the guiding principle remains: first, do no harm. Harm may be physical, financial, or psychological, including when claims exceed what the evidence can support. Programs that frame recovery as dependent on a patient's effort or mindset risk causing guilt and self-blame when they fail to produce results. This is especially damaging in a community long told that its suffering is self-generated.

Scientific foundation: Is the proposed mechanism grounded in peer-reviewed science? Are claims proportionate to the evidence, or do they overpromise?
Prior evidence: Has this intervention been rigorously studied? Have results been published in peer-reviewed journals and replicated?
Underlying disease model: We are cautious of programs that present themselves as biomedical-adjacent while operating on the premise that ME (or LC/ME) symptoms are perpetuated by the nervous system’s response to stress or trauma — a framing that is inconsistent with the scientific evidence and that has historically been used to minimize the biological reality of these conditions, and sell questionable, unproven treatment programs.

A Current Example: The MILES Study and DNRS

Our committee was recently asked to review the MILES study (Mind-Body in Long COVID and Myalgic Encephalomyelitis Study), a currently underway randomized controlled trial examining the Dynamic Neural Retraining System™ (DNRS) for people with ME and Long COVID.

We acknowledge that this study uses a more rigorous design than previous DNRS-related work, and that the researchers state they recognize ME and Long COVID as serious biomedical conditions. The inclusion of objective measures alongside self-reported outcomes is also noted with some appreciation.

However, we have significant concerns:

No peer-reviewed evidence of efficacy. As of this writing, DNRS has no published, peer-reviewed evidence of effectiveness for ME or Long COVID. A 2021 meta-analysis of mind-body interventions in ME found no peer-reviewed data on DNRS despite explicitly searching for it. We recognize that the MILES study may help address this evidence gap, and we will review any published findings on their merits.
The theoretical framework is problematic. DNRS is premised on the idea that ME (and LC/ME) symptoms stem from a “limbic system impairment” caused by trauma or perceived threat — that the brain is generating or perpetuating symptoms through maladaptive stress responses. As described above, this framing is inconsistent with the current biomedical evidence for ME. The claims about historical or childhood trauma as a cause of ME symptoms lack scientific evidence, and ignore the fact that many patients have no trauma history and that the disease onset in the majority of cases is directly linked to viral infection, not psychological experience.
Commercial entanglement. DNRS is a commercial, for-profit program. A clinical trial testing a product in which the program’s creator has a significant commercial interest requires a higher level of scrutiny than independently funded research.
Risk of harm. Programs built on similar premises have, in documented cases, caused harm — both by encouraging physical over-exertion and by leaving patients who do not improve with a sense of personal failure. A Yale neurologist reviewing such programs noted that whatever limited cognitive benefits they may offer, “the problem is the layer of pseudoscience placed on top of this legitimate but limited intervention.”

We are not in a position to recommend that our members participate in or promote the MILES study at this time. We will monitor it with interest, and if it produces peer-reviewed published findings, we will review and respond to those findings directly and transparently.

This statement reflects the assessment of the ME|FM Society of BC Interdisciplinary Advisory Committee as of the date of issue and may be updated as new peer-reviewed evidence becomes available.

The ME|FM Society of BC’s Commitment to Our Community

The ME|FM Society of BC does not promote, link to, or endorse research studies, programs, or commercial offerings without careful review. When something is brought to us from our community, we take it seriously and apply consistent standards. If it seems there may be contention or a question, we engage our Interdisciplinary Advisory Committee.

We do this because our community has already faced too much harm from well-meaning but poorly evidenced (and often expensive) interventions. People living with ME and Long COVID/ME deserve information filtered through scientific integrity — not through commercial enthusiasm or the false hope that comes from misrepresenting what the science actually says.

We do recognize that, given the paucity of directly helpful ME and Long COVID research, extensive patient experience is often the only “review” of potentially helpful treatments. We do share non-peer-reviewed information coming from the global patient community when the discussion is robust and patient- (not for-pay program) led. We note when this is the case, such as in our newsletter “stories,” and our e-series modules on treatments and medications.

We welcome questions, challenges, and conversation — this work belongs to all of us.

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