A thread on what people with ME/CFS need in the way of service

[Lou B Lou]

It's implicit in what you've written, but I wonder if we could specifically mention access to routine care such as vaccinations and preventive screening programmes? Even some moderately affected people miss out on these.

One of the things it's difficult for primary care professionals to grasp is that moderate ME/CFS is a broad and very variable category. There are times when exacerbations / other illnesses push people who'd usually manage to attend a clinic into the severe category, meaning they can't.

The categories of Mild/Moderate/Severe/Very Severe should, in my view, not be seen as definite groupings, but rather as a spectrum range. For example 'Moderate' can range from the Mild end of Moderate to the near Severe end of Moderate.

 

[Robert 1973]

Withholding medicines already prescribed is always something to be very cautious about.

I think it would be helpful to add something to this effect to the document.

[Edit to clarify: whether or not any off-label drug is having a therapeutic effect, if the patient believes it is helping them, withdrawing it against their wishes may be detrimental to their wellbeing, as I know from experience.]

 

[rvallee]

It still amazes me that JE can write a far, far better «guideline» for care with 24 hrs of input from S4ME, than what the Norwegian Health Department managed in two years.

Same reason why a group of lifelong chain smokers with lung cancer have a better handle on the danger of smoking than tobacco industry-funded physicians. Funny how things work.