I agree
@Trish, pwME can slip from mild to moderate or severe. To pigeon hole pwME at a certain level, and assume this will never change is narrow minded, and uneducated.
PwMS can go from mild to moderate to severe.
Forcing pwME to participate in GET can potentially cause ME to worsen.
Deterioration can also occur for no apparent reason.
ME and MS are both spectrum diseases. When you think about it, so are many diseases, and maybe all diseases; some people can have a mild flu, others may die from it, even young, strong, healthy people can die from the flu.
It's an interesting but important one to workshop isn't it. You can have severe tonsilitis (assuming that they go by look of the tonsils) and/or be 'very ill with tonsilitis' (where it might be about systemic aspects of symptoms and/or whether someone was already under the weather when they got it). A coldsore can get into someone's immune system and become life-threatening level of illness. People sort of know that running a marathon when they have flu is a bad idea but don't get as far as quantifying what happens - but really that is what ME basically is. They know (even before covid) that if someone has another serious illness or is old or ill then giving them a cold or flu (and a long list of other things) isn't a great idea.
What Laypersons don't get it that very severe ME is unbelieveable level of ill health you don't know how people get out of. Severe level is extreme limitations - to the point it is on a good week you can have 2hrs to plan 'something you need or want to do' with,
if you are lucky (noone else creates noise or problems, no bugs,injuries), don't have PEM from a previous week, and cut-back the energy to do the essential to life/must-dos to a minimum/well-oiled machine. People could not imagine the lack of lee-way you have. But a lot of the time you are only one incident from the ever declining to very severe.
Moderate is debilitation they might begin to understand as severe illness and disability - ie near the severe illness they've never had but can sort of imagine and less 'crisis' mode and more 'disability' level, rather than 'what on earth are you doing out of bed'. It should be cross-matched to another illness + its level to give people a benchmark. This is the one they might encounter in adjustments and people 'outside the home' (the idea people should exercise is hilarious) and needs to be mapped to certain other serious illnesses that might or might not be able to do a tiny bit of the right sort of part-time work if under the right circumstances, flexible and very adjusted for. These are the typeof adjustments most people would only encounter or think needed for 'time-limited' e.g. when x is in the acute stage before good treatment is completed and recovered from.
Mild is think of your worst illness you've ever had as long as you 'had flu properly once' or 'glandular fever' and had to shower once when you weren't well enough and went white and thought uh oh, or were forced to attend an obligation 'to show your face' and how you felt afterwards. Or someone who has had something significant e.g. cancer and 'recovered' but been left with the hit of the illness+treatment on their body. It's a 'normal disability' level ie like having a
serious illness or disability with normal-type (ie familiar) adjustments of the type they might be used to for other conditions that are long-term. But
significant ones. Not a kid just being let off sport (or worse 'the most sporty of the sport') but needing adjustments round their envelope.
BUT it's all 'illness' where anything, done by yourself, others or nothing can make it go downhill through these stages - which is the difference between the 'rehab' or 'debility-only' one-dimensional framing that BPS wants to keep it in. It isn't 'chronic fatigue' but has PEM, crashes and relapses and progressions - to things that people can't avoid and should assume a medical profession would see as serious and not minimise being unable to do without risk and harm as not a problem. It should be reasonably to complain if you can no longer hoover or go round a supermarket or do a birthday party without being ill for a fortnight.
The continue wish to 'frame' as rehab stage rather than an illness that for some reason no treatment has been looked into that is 'just one x away from getting worse', actually really ill but people start to try and do things because it has been so long they have to, is a real problem. It should be described as 'permanent flu' (instead of the silly 'flu-like' or 'malaise') and described as those severities so that people get some sort of better gist and give their head a wobble when they start suggesting a severe person just motivates themselves or tries exercise or whatever.
