I note that the MS parliamentary debate speeches and questions seem to be underlining the importance of things like support and adjustments being individual in the workplace. I'm sure other conditions have similar points
It has struck me how good
@Trish approach with the 3 lists pointing out clearly that this BACME doc/therapy is just the same old thing dressed up (so will surely change nothing) vs what is needed/being asked for is neither rocket science nor should it be beyond the capabilities of people who have similar professional qualifications (albeit we've found out there are some whose specialism is just the psych side, which isn't helpful) ie nurses, OTs in the area of things like adjustments in the home and the workplace. There are potentially some skilled individuals in those professions outside of the more niche behavioural focus who are also good at hearing and really getting themselves up to speed with reading the science and what the condition actually is.
And that the old days of 'promising outsiders the fake unicorn' (and then focusing their measures only on short-term to try and prove claims before the actual impact of a big crash happens 6months later) is what the new Nice guidelines was trying to move people on from.
To be honest this just comes across as so so dated. Cat's out of the bag it doesn't work and there is no
new evidence, and if any of this were evidence from what I can see so far these individuals haven't based any of their 'therapy' or 'one-liners' on it, none of these new references are suggesting trials of desensitisation suddenly make it work or that their suggestion of that counterproductive approach is either logical or an idea for any of the models suggested. This is just a load of debunked and not further tested ideologies with a link to a few papers that don't suggest anything of the sort.
A bit more awkward is adding in concerns about seeming to be avoiding the 'real job', which is less glamorous in claims but by being realistic is more impactful and could make a big difference to pwme who are in work and struggling right now. And worse providing misinformation (the suggested ideas aren't even suggested in or connected to the references they provide, even if those were 'evidence of the science') that will directly undermine workplace conversations from being useful and relationships with employers.
Simply because noone is navigating a not unusual conversation with employers for other illnesses that certain quite standard adjustments are common sense and are an important part of making things sustainable ie that their employee isn't 'trying it on' and will still need anti-migraine lighting in 6months time, and in fact with it being delayed that is likely to get worse (as the desensitisation is BS).
I worry when some advocates are focusing on the un-nuanced 'find a cure so we can all get back to work' when so many and in fact probably the common situation is that for ME/CFS there are lots who are in the position right now of still trying to work and struggling to actually get what they need due to being undermined by misinformation and stigma. Help should help, not make relationships worse. And those who left battled on through until they can't even look after themselves (this is perhaps where long covid is different politically, as they roll 'covid more than x weeks' into that).
My gut says
maybe by using terms like pragmatic, sustainability-focused and medium-long term focused,
keeping people in the workplace for as long as possible by supporting adjustments and tweaks to hours, homeworking (and some blather about preserving skills and experience) is what we have always asked for. ie realistic support. instead of short-termism that historically has lead to - what a shame this same old approach caused so many of us to be unnecessarily worked without adjustments until our health could no longer sustain any work
And obviously being able to have some medical connection (minimal often after the few initial consultations because there may only be a few things that might be helpful to some that might be delivered in primary care ) that is on a long-term basis because we might get other things and when our health does change then timely, and often minor in comparison to long-term deterioration, intervention with adjustments and medical support as relevant from someone who has experience in seeing that full spectrum and so has a sense of what is realistic and understands that long-term outcome is really important
I also think that as this document is claiming 'experts' ( when I'm sure they mean themselves) should train (providing misinformation by this) those others in professions that are needed to support pwme, we need to be underlining that yes due to past misinformation this would be very important - but that it needs to be people who actually know what they are talking about providing stuff that isn't misinformation and actually probably once they've got the penny-drop many of the things needed. And there are people like
@PhysiosforME who have 'got it' and others, so I think it might be useful for us to suggest other documents and genuinely trustworthy alternatives for such training?
