Submission Regarding DSM-V and ME/CFS

Purpose: This document, compiled by Professor Malcolm Hooper and Margaret Williams on behalf of The 25% ME Group for the Severely Affected, outlines concerns about the inclusion of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in the proposed new category of “Complex Somatic Symptom Disorder” (CSSD) in the DSM-V. It seeks to prevent the reclassification of ME/CFS as a psychiatric disorder, arguing for its recognition as a neurological illness per World Health Organization (WHO) guidelines.

Key Points:

1. Background of ME/CFS and WHO Classification
   • ME/CFS has been classified as a neurological disorder by the WHO since 1969 under ICD-10 G93.3.
   • The document highlights repeated confirmations from the WHO that ME/CFS is not a psychiatric disorder.
2. Concerns with Proposed CSSD Category
   • The authors argue that the diagnostic criteria for CSSD are overly broad and lack clinical specificity, posing a risk of misdiagnosing ME/CFS as a psychiatric disorder.
   • They highlight that members of the DSM-V Work Group, including British psychiatrists such as Professors Michael Sharpe, Peter White, and Simon Wessely, have historically described ME/CFS as a somatoform disorder rather than a neurological condition.
3. Evidence of Organic Pathology in ME/CFS
   • The document presents extensive biomedical evidence demonstrating ME/CFS as a serious neuro-immune disease, including research on immune dysfunction, neurological abnormalities, and endocrine dysregulation.
   • It criticizes the dismissal of this evidence by proponents of the biopsychosocial model.
4. Critique of Psychiatric Reclassification Efforts
   • Details concerns about the agenda of the “Wessely School” psychiatrists, who advocate for the reclassification of ME/CFS as a functional somatic syndrome or psychiatric disorder.
   • Highlights the potential harm of inappropriate treatments such as Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET) for ME/CFS patients, noting the lack of evidence for their effectiveness in addressing the underlying condition.
5. Recommendations to the APA
   • Urges the American Psychiatric Association to explicitly exclude ME/CFS from the CSSD category to align with WHO standards and avoid undermining medical science.
   • Emphasizes the need for diagnostic accuracy and the recognition of ME/CFS as a distinct neurological illness.
6. Broader Implications
   • Warns of the dangers of misclassification, including inappropriate treatment, denial of social support, and stigmatization of ME/CFS patients.
   • Advocates for continued biomedical research and patient-centered approaches to care.

Target Audience:

• Healthcare Professionals: Neurologists, immunologists, and clinicians invested in accurate diagnosis and treatment of ME/CFS.
• Researchers and Advocates: Stakeholders committed to preserving the distinction between biomedical and psychiatric disorders.
• Policymakers: Decision-makers tasked with ensuring ethical and evidence-based classifications in healthcare systems.

Overall Outcome: The submission serves as a strong appeal to prevent the misclassification of ME/CFS as a psychiatric disorder under DSM-V. It highlights the critical need for recognizing ME/CFS as a neurological illness, respecting the established evidence, and avoiding regressive developments in its classification and management.