I spotted that this had been released. I've been particularly unwell recently so haven't been able to review it thoroughly; however, based on a quick skim, there is a lot of good in this. Briefly - it includes:
- acknowledgement that there are no evidence-based treatments;
- a realistic story of very severe ME/CFS written from the perspective of a father with a daughter with vsME;
- realistic delineation of mild/moderate/severe/v severe, & frankly acknowledges the extremity of vsME;
- goes through possible adjustments re. lighting, sound, touch & movement sensitivity, chemicals & smells; adjustable hospital beds & cradles, tilt-in-space wheelchairs, adaptive communication aids, emotional support, medication hypersensitivities - very attuned to the needs of the most severe patients at the most severe end of the scale
- recommends the use of GP home visits, community nursing and even palliative care where necessary; recommends development of ME/CFS community-based services, avoidance of unnecessary hospital admissions due to sensory issues, exertion, etc worsening symptoms;
- sections on nutritional support, including the need for enteral & even parenteral support where nutritional needs not met;
- goes through reasonable adjustments for e.g. surgery for other conditions
- suggests possibilities for medications to treat chronic pain & insomnia
It does indulge some unevidenced theories about immune dysfunction, viral reactivations, POTS, MCAS, SIBO etc that will undoubtedly cause more knowledgeable physicians to take the advice with a grain of salt, or to disregard it entirely. There are a few things that are wrong (e.g. the suggestion that "seizure-like episodes" can be a symptom of ME/CFS; that one will cause confusion). The sections on methylphenidate, LDN, fludrocortisone etc probably should have been relegated to a research-avenues section. Despite this, in terms of the recommendations for practical management, it is a very significant improvement on the advice that is currently out there for NHS clinicians (e.g. BACME's guide).
learninghub.nhs.uk
