I am beginning to get a clearer picture of just how badly people with ME/CFS will fall between all the stools laid out in the RCP guidance. The guidance rightly indicates that both enteral and parenteral support can always be justified if failure of nutrition is life-threatening, but it also brings in confusion about functional gut problems.
What seems to be missing from the accounts given in guidance documents is that there is a third type of problem in addition to structural gut failure and the disordered thinking of anorexia nervosa. The more I hear the more it seems to me that it is the symptoms of intolerance that are the both the beginning and the end of what matters. For people with very severe ME/CFS feeding may become intolerable, for reasons unknown and several of them. I have had pushback against this wording - being asked to talk of difficulty feeding rather than intolerance but I think intolerance is what needs focusing on.
When I say intolerance I am thinking of something impossible to overcome, rather like the intolerable hunger people can get after surviving craniopharyngeoma (hypothalamic damage). These people if left to themselves cannot avoid becoming grossly obese. No human can resist the hunger. In ME/CFS I think what health professionals do not understand is that there is an equally impossible to resist need to avoid certain stimuli. Another example of such impossibility is standing up if you have sever knee pain. It is not simply that you cannot stand the pain. Neurological signalling that you have no control of, or even awareness of, blocks the muscle contraction and prevents standing.
I think maybe the needs of people with ME/CFS need to be explained much more in terms of the actual experience of the patient. The problem IS the symptoms, which include both feeling terrible and blocks to function at a reflex level.
And the management has to pivot on management of the symptoms. Quiet side rooms are not just a kindness to sensitive souls. They are a physiologic necessity. So in emphasising just following good nutritional practice in my Qeios article I think I have missed something crucial. Standard policy as written out at present steers past what is needed for ME/CFS.
There are a few issues with this.
Firstly exhaustion is the big factor it seems for many. Which leads to a 'can't' - and things like the ridiculousness of someone taking ability to swallow water from a sponge once as if it meant they 'can eat' both sufficiently to survive (and digest) , but whilst this is harder to word in a way that doesn't sound incredulous, doesn't take up more energy than they have to not go further downhill the next day etc. Of course eventually they've gone downhill so much they are there anyway.
And there are probably things to do with not having enough energy in the body to digest whilst other things are exerting or to do it in one go at the same speed as would be normal when people get that ill. Just like doesn't digestion stop when someone ends up in eg a crisis and the theoretical body needs to divert all resources to getting out of an emergency first.
I'm no medic but from what I've heard it sounds like things just start to fail and get hard to fix without support because there isn't some magic energy coming from somewhere, so the source mightn't (but they aren't looking are they) be specifically in the gut 'structural' (whatever that is limited to) but once someone is that poorly the pathway back is starting to relieve what depends on that same battery and doing what is possible to preserve vital functions without it causing more exertion.
There might also be things to do with the horrible hypersensitivities the illness has and are worse the more severe they are, but also the more over-exerted they are, so if stuck in an environment like a hospital these will already be being antagonised continually which makes everything worse particularly regarding that. Just like someone might get diahorrea and more sensitive to touch etc if they had a migraine and had to sit in a strobe lighted rock concert for 4 days.
I just don't think that the system is capable of the nuances you are trying to describe as a half-way house. It feels like it has been too manipulated over the years with fake terms for people to be able to hear things clearly like they might have a few decades ago, or just see someone was ill and the light was really hurting them (instead of 'seeing' that as 'oh they need to be trained because its a phobia').
It literally has been so strongly sold that it seems like the philosophy cliche of 'when two different people look at the same colour blue do they see the same thing'
They will hear it as what they think 'functional' is. The whole system has designed mental health to cover aspects it was never qualified for. But to blag claiming it can. This would/could just be heard as 'need to up the intensity' or 'change flavour' [or my personal non-favourite: 'personalise'] by people who don't investigate cause and don't change their 'what' they offer and check it works; just tweak the how often and the sales pitch (when CBT doesn't work, 'must have been done wrong').
And there are people who do still force people onto knees that scream with pain and just generally call the person screaming names and a wimp for over-reacting/not putting up with it vs those who see it as part of the diagnostics.
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