The UK government’s Department for Health and Social Care (DHSC) has published its interim plan for ME/CFS, which is open for consultation until 4 October. Our response refers only to the ‘Attitudes and Education of Medical Professionals’ section of the plan. ME Research UK has published a fantastic response to the ‘Research’ section of the plan:
The ‘Attitudes and Education of Professionals’ section of the DHSC’s interim plan for ME/CFS:
⚬Recognizes the dismissive attitudes to ME/CFS held by many medical professionals, which is welcome.
⚬Seems to recognize that knowledge of ME/CFS should be required for every doctor, in every specialty and in every healthcare setting, which is very welcome.
⚬Under ‘Agreed Actions’, there is a plan for NHS England to develop an e-learning module on ME/CFS, but it is not clear that this training will be mandatory for all doctors. It absolutely must be.
⚬People with ME/CFS want the opportunity to speak with a doctor who specialises in their illness, and the NICE guidelines require this, yet few such doctors exist in the UK. This plan fails to include the creation of a training pathway to produce more of them.
⚬This plan fails to recognize medical harm which results from medical professionals’ poor knowledge of ME/CFS. This harm includes:
- Delayed diagnosis and missed diagnosis.
- Patients are still being advised to exercise, leading to relapse and worsened illness severity.
- Harm to children and young people: when a paediatrician fails to diagnose ME/CFS, the school believes the child has no good reason to be absent, and contacts social services, sometimes with the result that a very sick child is inappropriately taken from their family.
- Inappropriate sectioning of people with severe ME/CFS whose inability to care for themselves is misinterpreted as mental illness.
- Malnutrition: healthcare professionals lacking knowledge of ME/CFS fail to provide tube-feeding to patients who have become too ill to eat (either because of gastrointestinal problems or because they have become too weak to chew or swallow food.)
- Death following severe medical neglect, as in the case of Maeve Boothby-O’Neil.
⚬Problem Statement 2, ‘There is limited objective evidence for what current attitudes are towards ME/CFS among most health, social care and other professionals’ may be technically true, but fails to give sufficient weight to patients’ experiences. The ME community knows from long experience, and surveys of doctors and of medical students confirm, that many doctors believe that ME/CFS is:
- Minor.
- Likely to resolve on its own.
- Psychological or partly psychological, and possibly related to anxiety, depression or hypochondria.
- Caused by or exacerbated by deconditioning.
- Perhaps not ‘real’.
Doctors want to help their patients, but to do so they need proper training. It is true that many doctors hold dismissive attitudes towards ME/CFS, but the root problem isn’t their attitudes, it’s their lack of medical knowledge. They need proper training on ME/CFS to enable them to provide a reasonable standard of care to patients.
ME/CFS Medical Education Campaign 