I don’t see why the causes and treatments for severe and very severe are singled out. Any research into ME/CFS should ideally account for all severities. Unless there is a specific reason to believe that severe+ is a distinct pathological entity?
I agree that there is a separate issue elsewhere where it seems some seem to talk about those who are more severe as if they have a different illness. It is particularly concerning when you hear some grim remarks like 'it can't be ME/CFS as it doesn't get that bad' etc.
I absolutely agree that I'd want reassurance people understand that it really is a continuous spectrum.
On the other hand I can see from my own experience and the fact that without having this those most severe are those most excluded and spoken for and least prioritised and heard that doing this is actually required. At the end of the day 'getting worse' is often what those who are milder warn about happenning to them, but it is only those who it has happenned to who can confirm and evidence that. And if the set-up of research and funding (because I imagine it is harder and more costly to design things to be careful and recruit those who are more severe and do things remotely etc) isn't designed to be accessible to the illest it can't include them, so that part of the spectrum stays invisible and unevidenced.
I'd be really worried that there is particular safeguards being taken however on protecting this group though. And the ethical side of things absolutely needs a group of highly expert patients working with a small trusted group of staff to be put together. There is so much room for harm here. And coercion, sometimes inadvertent, has been such a problem in general with ME/CFS, but would be at a desperate level for those who are severe and very severe.
The mere threat of being sent into maltreatment is immediately life-threatening and completely present, and yet currently those who would in normal illness protect from such absolutely believe those suggesting it. So how on earth can we put something together that is a charter making sure that researchers know and are aware of what they need to do transparently to be able to confirm their research was done under conditions where people did not feel any perceived threats (like I'd imagine those in clinics where reports might be sent off to GPs would be possible).
Those who themselves have experienced different levels of this can indeed I think be the only ones who can speak to this, and I'd say it feels very obvious when you are in it. In fact you don't notice you are now 'at a new level' other than by hindsight that you aren't coming out of that crash given it has been a year, or two, it is so 'the same thing'.
But there sometimes do seem to be other things that 'drop off' or deteriorate which might just be because as whatever ME/CFS is and the bits it involves (which might be different things getting worse at different rates or combining with other different weaknesses in their system in other peopel) as things get worse too. Things that can be helped by good clinical care. Things that might be clues.
That naughty phrase of turning no biomarker that is consistent across everyone bucketed into CFS to infer that noone with ME/CFS has anything flagging on blood tests as not normal is something that has always got to me from the bps. like as soon as they put a label on someone these facts disappeared in them.
And even if not these people are more ill, and currently excluded from being seen by anyone - so are cut out of the spectrum that way. And yet research can't possibly be inclusive if it is based around the cost-base and normal set-up of researchers or even other illnesses (which don't have the same sensory issues and 'envelope' - I can't help remark on the mindset of an HCP eg an OT who tries to get PEM and that the disability is this cage of 'this is how much energy you can use cumulatively' but is then flummoxed by the 'but you could walk up the stairs if you needed to'... although by that
we mean probably by resting for several days in order to) unless it is focusing on being inclusive and accessible to the
most ill then it won't be including them. It's like a friend sending a severe person an invite to their wedding. vs a relative designing what they can do with their wedding to make the important parts involve the severe person.
So I think it probably is necessary. I also hope that the PPI will be ensuring that it is very differently done in order that those who are severe are probably getting a voice and heard and not just having others speaking for them or interpreting them (it seems like DecodeME did this well, it really isn't as good a case with other things as those involved often think they are offering). Because again just leaving the odd place for someone severe or their carer without checking that carer actually could consult with the severe person, or being able to shift the timing of a meeting if that person had been ill for the fortnight and couldn't provide said input, and putting that one person on their own round a table of people with more power to out-energy and no experience of severe (whilst severe has experience of milder) isn't that - it's a stitch up.
For a start how is it appropriate that you've only one or two people to cover the entire workload of the whole world that the rest of the table have no lived experience of whatsoever. And that is incredibly hard to remember and then work out how to communicate to potentially credulous individuals? Who have exponentially smaller non-spare energy. Moderate being maybe 4 good hrs a
day, but bottom end of severe 4 a
month - except those are just 'better ones' that people time for must-do like appointments, eating, teeth. So why aren't people backed up by being able to be a team of 20 to answer the bigger workload of question, given they'll have more symptoms, impact and experience to report on anyway? And because they have far less control of when they will have anything spare so need a pool of people anyway. But also it is the feeling of being outnumbered given the experiences they are going to need to communicate.
What methods might work for the rest as more convenient can exclude those severe. And who wants to be the one person vs a whole table of people who are all stronger and can war of attrition so if the conversation keeps going it's no issue to them, and they can speak louder for longer etc. People might want to get something done faster rather than making sure it is right and includes people being able to contribute on their best days. Where there is disagreement noone is yielding to it being because the other person perhaps hasn't had the experience yet so actually isn't qualified to be sure x doesn't happen or isn't a problem.
The experience of being more severe is sometimes not even sought to be believe by other pwme who are milder (that seems to be a common assumption both laypersons and pwme have that 'because we all have the same thing'), ie the disbelief can often be the same or the source of where they have differences in experience being misattributed eg so disagreeing rather than seeking to understand if they don't get something said 'because it doesn't fit their experience', or thinking because someone whose illness isn't invisible and is more extreme is now more obviously badly treated by others can't be true because those said others have been perfectly nice to the milder person.
