Management of severe and very severe ME/CFS fact sheet
It (the factsheet) estimates that around 1/1000 people have severe ME/CFS and that these patients need aids such as wheelchairs, lifts, adjustable daybeds, and, in some cases, tube feeding.
They also require help with assessments for work or education capacity and financial support.
The factsheet highlights the importance of reducing stimuli in hospital environments.
Examples include having a single room, blinds to reduce light, no intrusive noise, and
no use of perfumes or scented cleaning products.
It explains that these measures are not optional: "the need for reduction in stimulation from exertion and environment for people with ME/CFS is a unique situation, being a medical necessity rather than a matter of kindness."
The factsheet is critical of "Multidisciplinary teams of professionals assigned to different aspects of care", saying these "are likely to be counterproductive."
There should be a clear contact point (one person), such as a specialist nurse with deep understanding of ME/CFS.
It also states that "Rehabilitation-based approaches have produced no significant benefits or impact on prevalence and have no place in management."
But it's also critical of off-label treatments such as antihistamines, naltrexone, fludrocortisone, and ivabradine.
The factsheet argues that "We do not know what ought to be the best way to manage ME/CFS."
So speculative theories, whether on brain blood flow, mast cell sensitivity, energy metabolism, HPA axis dysregulation, deconditioning or psychosomatic influences should be avoided.
It also has an important section on why enteral or parental feeding can sometimes be necessary in ME/CFS. These should not be delayed on the grounds that the problem is ‘functional’ or that the reasons for failure are not well-defined.