Submission Regarding DSM-V and ME/CFS

Purpose: This document is a joint submission from the 25% ME Group for the Severely Affected and Stonebird. It raises concerns about the inclusion of Myalgic Encephalomyelitis (ME) in the proposed categories of Complex Somatic Symptom Disorder (CSSD) and Simple Somatic Symptom Disorder (SSSD) in the DSM-V. The authors argue that these categorizations would misrepresent ME as a psychiatric condition rather than a neurological disease, causing significant harm to patients.

Key Points:

1. The Role of Psychiatry in Misrepresentation of ME
   • Critiques the Wessely School psychiatrists for promoting the view that ME is a mental health condition rather than a neurological disease.
   • Raises concerns about the misapplication of the term “chronic fatigue syndrome” (CFS), which the Wessely School has equated with mental health disorders rather than its intended use as a synonym for ME under WHO guidelines.
2. Impact of CSSD/SSSD Categorization
   • Warns that including ME under CSSD/SSSD in the DSM-V would further entrench the psychiatric misclassification of ME, legitimizing inappropriate treatments such as Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET).
   • Highlights the dangers of misdiagnosis and mistreatment, which already affect patients due to the ambiguous use of the term “CFS” in the UK.
3. Critique of the PACE Trial and Its Implications
   • Discusses the shortcomings of the PACE trial, including its failure to operationally define “CFS/ME,” effectively excluding ME as a neurological disease.
   • Suggests that the trial served to validate psychiatric models rather than address the complex biomedical realities of ME.
4. Biomedical Evidence for ME
   • Emphasizes extensive biomedical research showing ME as a serious neuro-immune disorder involving immune dysfunction, neurological abnormalities, and other systemic impacts.
   • Argues that the Wessely School’s approach ignores and undermines this evidence, perpetuating harm to patients.
5. Calls for Protection and Clarity
   • Advocates for separating ME from psychiatric fatigue conditions and creating appropriate biomedical diagnostic criteria, such as the Canadian Consensus Criteria, to ensure accurate diagnosis and care.
   • Urges the DSM-V Work Group to exclude ME from CSSD/SSSD to prevent further misclassification and mistreatment.

Target Audience:

• Healthcare Professionals and Researchers: Clinicians and scientists dedicated to accurate diagnosis and evidence-based care for ME patients.
• Advocacy Groups and Patients: Individuals working to prevent the psychiatric misrepresentation of ME.
• Policymakers and DSM-V Decision Makers: Stakeholders responsible for safeguarding the integrity of diagnostic classifications.

Overall Outcome: The submission warns against the dangers of including ME in CSSD/SSSD categories within the DSM-V. It calls for recognition of ME as a neurological disease and an end to its misrepresentation as a psychiatric disorder, advocating for research, policy, and practices that reflect the biomedical realities of this debilitating condition.