1) New article on severe ME/CFS by the researchers who manage the UK ME/CFS Biobank. They visited a cohort of nearly 100 patients housebound by ME/CFS and wrote down their knowledge and experience.

Some interesting quotes in the thread below https://www.mdpi.com/2227-9032/8/3/197

2) “Some people with severe ME/CFS may lie in a darkened room with earplugs in and may exhibit increased sensitivity to light, sound and touch, struggle to share information or be so wary of PEM that they are fearful of articulating the things that they want or need to share”

3) “People with severe ME/CFS may only be able to stand for a few moments, if at all, and signs of weakness may be obvious. Handgrip measures are markedly reduced in the severely affected and rapidly decline when repeated.”

4) "Apart from frailty, physical examination generally reveals little, and blood work, important to exclude other diagnoses, is often normal."

5) “Some severely affected individuals may appear undernourished; this often follows food intolerance and allergies and is rarely a manifestation of anorexia nervosa.”

6) “When planning the visit to the person with severe ME/CFS, the HCP should avoid smoking or the use of perfumes or fragranced lotions, as sensitivities to chemicals or odours are common”

7) “PWME are often better informed about the disease than the visiting practitioner” […] This can challenge the practitioner used to steering the therapeutic relationship who may need to acknowledge their limitations”

8) “Taking a proactive stance with their own health differentiates PWME from people with clinical depression, and HCPs [healthcare practitioners], need to understand that it is the disease that inhibits activity rather than lack of motivation.”

9) The therapies and alternative treatments that people with severe ME/CFS sometimes embrace can seem unscientific to the HCP [healthcare practitioner], but are sometimes turned to out of desperation;

10) "Living with severe ME/CFS requires enormous courage. The inevitable reduction or loss of a societal role means that people with ME/CFS are unable fully to engage with family and friends."

11) “Not only do people with severe ME/CFS have to come to terms with a long-term, disabling illness, but they may also have to cope with doubts about its authenticity.”

12) “Paradoxically, it is often the most seriously ill and needy who are the most neglected by those responsible for their healthcare”