NICE guideline in the UK
In the UK, the last National Institute for Health and Care Excellence (NICE) guideline for ME/CFSS was released in 2007. In November 2020, NICE released an updated draft guideline for consultation. The symptom criteria for diagnosis they identified are pretty much the same as the CDC’s.
I found this bit from the principles of care particularly interesting:
“Recognise that people with ME/CFS may have experienced prejudice and disbelief and feel stigmatised by people who do not understand their illness. Take into account:
- how this could affect the person with ME/CFS
- that they may have lost trust in health and social services and be hesitant about involving them.”
In the section on access to care, the guideline tells providers “Do not discharge someone who misses appointments because their symptoms have worsened.” It adds that providers should “Be aware that people with ME/CFS are unlikely to be seen at their worst.”
The unspoken but implied message is “haul your head out of your arse.”
Cognitive behavioural therapy (CBT) is sometimes recommended for ME/CFS, but the authors of a rather delightful strongly worded paper in the journal Neuro Endocrinology Letters called bullshit on that. They wrote that not only does CBT not work for these patients, it makes things worse. They wrote, “We conclude that it is unethical to treat patients with ME/CFS with ineffective, non-evidence-based and potentially harmful ‘rehabilitation therapies’, such as CBT/[Graded Exercise Therapy].”
ME/CFS is a prime example of the harm that comes from doctors deciding that things are all in patients’ heads.
