Countrygirl
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Why this petition matters
Started by Catherine Ashenfelter
Dear Elsevier (publisher),
Petition to request updating of the description of ME/CFS in Kumar and Clark’s Clinical Medicine textbook.
We the undersigned, request that the next edition of Kumar and Clark’s Clinical Medicine, due in 2025, addresses the following 5 points:
1) PLACEMENT: That ME/CFS is taken out from Liaison Psychiatry and Functional Somatic Syndromes and placed elsewhere, e.g. in the neurology section and/or the immunity section.
Since 1969, the World Health Organisation has classified ME as a neurological illness (ICD-11 8E-49). In relation to this classification, ME is fully accepted by the Department of Health and NICE. The NHS mandates ME as a neurological illness. NHS Digital
Previous editions of Kumar and Clark’s book have used CFS synonymously with ME (Myalgic Encephalomyelitis). The 2020 edition only uses the term CFS. Since the NICE Guidelines use both terms, we ascertain that CFS in Kumar and Clark also refers to ME.
2) AUTHORING: That the section is re-written by a physician and not a psychiatrist. The description of ME/CFS in Kumar and Clark was publicly criticised by a parliamentary working group, November 2006. This Inquiry stated ‘While CFS/M.E. remains only in the Psychological section of medical discourse, there can be little chance of progress.’ Gibson Inquiry Section 2.5
3) COVERAGE: That the promotion of Graded Exercise and CBT is withdrawn as a treatment for ME/CFS, reflecting the updated NICE Guidelines NG206 (2021). These guidelines demote CBT and state that GET must not be offered for ME/CFS patients. NG206 continues to state that CBT should not be offered based on the assumption that people have ‘abnormal’ illness beliefs and behaviours as an underlying cause of their ME/CFS. CBT is not a cure for ME/CFS and should not be offered as such. [NICE 1.12.28; Box 5; 1.12.32;]
4) REFERENCES: That the section should include up-to-date references including NICE NG206 (2021). That the statement declaring no obvious pathology has been found, to be withdrawn, as some ME specialists have confirmed pathology in ME/CFS. Komaroff JAMA 2019
Medical educator Dr. Nina Muirhead states: ‘…there has been an exponential increase in biomedical research and an international paradigm shift in the literature, which defines ME/CFS as a multisystem disease, replacing the psychogenic narrative.’ Medical School Education on M.E. ; APPG 2022; Bateman 2021
The PACE trial (2011) which recommended GET and CBT has been shown to be unreliable. Wilshire et al. 2018
Thousands of studies have documented underlying biological abnormalities involving many organ systems in patients with ME/CFS. Komaroff
The U.S. National Institute of Health Pathways to Prevention, along with The Institute of Medicine, have concluded through 9,000 peer reviewed papers that ME/CFS is a serious physical disease, not psychological. NIH ; Institute of Medicine 2015
5) PATIENT SAFETY: That the derogatory character descriptions and inappropriate personality accusations are removed, describing ME/CFS sufferers. These are not supported by evidence. The psychosomatic view has contributed to disbelief and neglect of ME/CFS sufferers. Geraghty 2017 Kumar and Clark wrongly insinuate that a sufferer’s health will improve if they believe their illness is psychological in part. Additionally, Graded Exercise Therapy has been shown to harm sufferers. Kindlon 2011
We look forward to working with you to update this section.
Yours sincerely,
The Grace Charity for M.E. (registered charity 1117058)
https://www.change.org/p/me-cfs-changing-the-definition