Addressing The Diagnostic Void Faced By Patients With Deteriorative Symptoms

[DigitalDrifter]

What can we do to get deterioraters such as myself a suitable diagnosis that fully reflects their symptoms? It's become clear to me that there's no room for permanent damage being believed under an ME diagnosis, not even our own fact sheet says this exists. It all makes me feel very invalidated.

If you suffer from deteriorative exertion intolerance or deteriorative auditory intolerance please let me know your experience, stories of suffering LTSE - Long Term Symptom Exacerbation (including permanent deterioration), were you believed by medical professionals you met? What do you think is the correct label for such patients? Which organisations (For example: The WHO) are responsible for giving us the correct label?

 

[Trish]

My understanding is that what you describe is included in the category of very severe ME/CFS.

I am very sorry that you are suffering so severely.

 

[Utsikt]

I fully emphasize with your experience of not being believed in terms of the severity of the symtoms, the level of disability, how low my limits are, and the duration of everything. I’m at the lower end of severe and my GP does not understand the scale if my current experience. I’ve only gotten worse the past year.

I still can’t imagine how it is to be fully very severe and not just temporary as I’ve experienced for a month or two.

But what I don’t understand is how what you’re describing is different from PEM as ‘very severe’.

I don’t believe there’s a lower bound to the exertion required for something to be labeled PEM. Neither is there an upper limit to how long PEM can last, so ‘permanent’ PEM is included.

 

[Utsikt]

Just to add that I fully agree that the knowledge about the most severe end of ME/CFS is poorly understood in healthcare, even worse than ME/CFS in general.

In terms of what we could do to address this, I can’t think of anything other than trying to spread awareness. ‘Very severe’ is probably a suitable topic for a future fact sheet.

If we don’t have one already, we could also create a thread to compile resources specifically aimed at the very severe or their carers and health professionals.

 

[Yann04]

Most resources aimed at very severe people are useless for the most severe of them.

They assume very severe ME to be a roughly homogeneous thing, but there’s so much space for different capacities within it. Life was super different for me when I could spend the day watching movies, videocalling, sitting up in bed to chat with nurses or family and having a meal, occasionally using my wheelchair to go to the doctor etc.

Vs, being unable to lift your head up more than a pillow, nearly losing the ability to communicate or being communicated to at all. (No speaking or texting, noise makes you crash etc). Due to super low PEM threasholds you have to become functionally blind and deaf lest you crash. All your food is liquid. All you do all day is daydream if your brain even has enough energy to generate cohernt thoughts… You cannot leave your bed at all. Even basic bathroom functions become a nightmare that creates PEM.

There are basically ZERO resources that acknowledge the second, except people like Whitney Dafoe’s n=1 experiences.

And it is absolutely crucial there is something to explain it, because these are the people who can barely communicate at all, who are at the biggest risk of dying, who seriously need legitimacy and explanation so bad. Even the vast majority of ME charities, including the “progressive” ones, ie. #MEACTION completely avoid the second.

 

[Utsikt]

Thank you for this description, @Yann04
And thank you for raising awareness about this, @DigitalDrifter

I hope the community will be able to address this in the future, especially the lower end of very severe

 

[Trish]

This is a valuable discussion.

I think it would be good to have a factsheet on very severe ME/CFS, written with the help of members who are the most severely affected. That's not likely to happen immediately, but we can encourage members with experience to share what their experience is like. This would provide valuable input for factsheet writers.

We also need to include very severe sufferers in input for all relevant factsheets, not just a specific one on very severe ME/CFS. I will be inviting feedback from all severities for the PEM factsheet I hope to start soon.

@DigitalDrifter, as the starter of this thread, how do you feel about your experience being included in the very severe ME/CFS category?

 

[bobbler]

My understanding is that what you describe is included in the category of very severe ME/CFS.

I am very sorry that you are suffering so severely.

I get the point that for some reason at whatever level we seem , just as most others writing descriptions do too, to be ducking the core feature of how the illness works / needs to be described

which is that overexertion does lead to deterioration, not just PEM or fatiguability meaning our arm shakes at that point (but that threshold at which our arm shakes reduces)

true in some their threshold + situation means that this can be imperceptibly slow ie I was pretty sure I was getting 10-15% more disabled a year when having to work full time and certain things not being adjusted snd EVERYONE around me just ignoring that trajectory as if it would change for the better (for no reason) if my struggle and warnings were just ignored rather than accelerate , which is the LOGIC of the illness tgat needs to be understood.

and that 10-15% git hidden by me having to work out new ways of being tenacious with the impossible and of course if people don’t see you there are less occasions you have to fake it with a smile on your face.

Most onlookers defy that logic as having to do twice as much as your threshold isn’t just a horrific life but reduces that threshold so that then ‘twice as much’ is less exertion than it was before . They defy logic because they watch year on year someone saying unless they believe that action—> consequences and others start behaving more kindly to the pwme they’ll get worse, then they watch that person get worse - say 8 years/times in a row. And then still choose to change nothing and the next time the same person explains please can people hear them and bring what they have to do daily to survive or noise thrown at them under their threshold, else they will get worse , they again don’t - or manana manana it until that persons threshold is reduced again and they then need even more adjustments

this disbelief that many end up as severe as they are due to the thousands of papercuts adding up as reductions in thresholds (as consequences) each time , which are then even less believed is what. Is destroying lives and meaning people die

it’s also why mild isn’t taken seriously and why unless someone can be in the very rare position to control everything in their life and environment we get people not having their jobs reduced to part time or different hours due to disability- because people aren’t made to understand that will lead to longevity if done fast enough when some takes a downturn ‘getting ahead of the threshold’

if I could underline where the ME community has massively failed it is on this point being put across - the point of what the illness actually is, the ‘in good time/stitch in time’ otherwise any adjustment done six months too late is done after someone deteriorated and now needs a new level of adjustment

but vitally we are watching those more severe getting invalidated but also harmed because we are not - and I put this very clearly in the fact sheet project discussion- noting this. So we have in hospital people saying ‘it can’t be ME because it doesn’t get this severe’ to poor souls who got put thru GET, put thru desensitisation, put thru anything other than tears of proper care bringing their environment under threshold and then blaming the patient for ‘being worse’ rather than taking responsibility that those continued assaults on their threshold- which those things are defined by/as ARE what have done that

 

[Jonathan Edwards]

I agree with Trish that very severe ME/CFS is the appropriate label. There does not appear to be any structural or permanent damage to tissue but the fact that the condition leads to people dying if they do not have adequate support would surely be validation?

What I see as the current problem in the medical profession is a deliberate policy of pretending this problem does not exist - that people will not die if they are given 'psychological support'. So lack of validation is a very real problem, but not because we do not have the right terminology.

 

[bobbler]

This is a valuable discussion.

I think it would be good to have a factsheet on very severe ME/CFS, written with the help of members who are the most severely affected. That's not likely to happen immediately, but we can encourage members with experience to share what their experience is like. This would provide valuable input for factsheet writers.

We also need to include very severe sufferers in input for all relevant factsheets, not just a specific one on very severe ME/CFS. I will be inviting feedback from all severities for the PEM factsheet I hope to start soon.

@DigitalDrifter, as the starter of this thread, how do you feel about your experience being included in the very severe ME/CFS category?

Yes

but I’m getting quite fed up of it just being siloed

As if that underlying mechanism only exists once someone has become that ill rather than many being that ill due to it

that silo is what I think is contributing to what I see and watch as a terrifying misinterpretation of the illness and how it feels those most severe are now the ones being treated worse than ever in the recent years

ME isn’t an illness of mild-moderate people being a bit slow and getting some payback from the odd big day + the odd migraine type issue from some noise . ‘Oh and some are really ill and in a dark room and have feeding issues but we can’t confirm why’

but I don’t think some people realise that is how their descriptions come across.

@PhysiosforME seem to be one of the few over the years who seemed to get the penny drop and start to bring out that the ‘threshold’ is the fundamental ‘descriptor’ of disability and illness for pwme, so really needs to be understood as ‘a moving feast’ (that is reactive to whether someone is stuck in an environment that allows them to be below it or have a life, not just ‘random’ and certainly not ‘someone is responsible for their own level of severity due to how they behaved or thought’)

and not just ‘of how sad that if I carry on with my noise that poor severe person doesn’t like it’ or ‘well that moderate person seems to still be turning up to work doing their four days so me taking my seeet time over reducing their hours means they might change their mind about needing just 3 days a week in a year, mind over matter n all’

we are maybe getting across ‘hurt’ but not the harm/mechanism/deterioration

and it’s hard because we live in a world where most want to force interpretation into a ‘no harm no foul’ and then pretend it was ‘hurt not harm’ by using coercion to refuse to measure harm and then be frankly abusive to any pwme who ‘mentions the past’ by which they mean ‘harm being reported will be punished and silenced’ - sorry but this is factual observation/words of what they are actually doing in objective terms.

it isn’t a no harm no foul illness. And bowing to that hegemony being enforced leaves those most harmed by that acceleration of threshold deteriorating so that even less causes deterioration leaves them - as often the ones who were the most enthusiastic to give things a try and least foot stomping to their needs being ignored - then the most abandoned and gaslighted as if they ended up as ill as they are for no reason still .

I can’t think of anything more unjust and horrifying than the fact that those most injured by ignoring this and now the most disbelieved ‘because no one gets that injured’ or all sorts of other silly, vile Pat phrases of denial.

 

[Yann04]

Yes

but I’m getting quite fed up of it just being siloed

As if that underlying mechanism only exists once someone has become that ill rather than many being that ill due to it

that silo is what I think is contributing to what I see and watch as a terrifying misinterpretation of the illness and how it feels those most severe are now the ones being treated worse than ever in the recent years

ME isn’t an illness of mild-moderate people being a bit slow and getting some payback from the odd big day + the odd migraine type issue from some noise . ‘Oh and some are really ill and in a dark room and have feeding issues but we can’t confirm why’

but I don’t think some people realise that is how their descriptions come across.

Agreed. I really don’t see myself in any of those “official descriptions”. It always sucks to read, because it feels like my suffering is never acknowledged, only that of those less severe than me.

As if we don’t have “evidence” of that suffering. We do have evidence of it. But it hasn’t been acknowledged by people in power or published in journals. So somehow it’s less real.

I have read absolutely no description of the illness except things written by fellow very severe people, that seems to be able to describe the illness without feeling like it subtly denies my experience (not on purpose). Of course, some descriptions are better than others, and some are pretty good. But I don’t feel comfortable sending any to friends family or doctors, because the resources will automatically make them assume I can do things I cannot do.

 

[Peter T]

Trying to establish a level of input from the very severe to any fact sheet on the very severe is essential.

Even as someone with ME for thirty years, it was only twenty years in when I had a number of years housebound and largely bedbound that I realised how little I understood of the very severe end of the spectrum, and even now I recognise that there are large gaps in my knowledge and understanding of those more severe than I have been.

It is so important that we highlight how little we understand and how important given that ignorance that we find ways to listen to those least able to speak for themselves. It can not be emphasised enough how much suffering and harm arises from treatment from those who have no understanding of how limited their knowledge is on this topic.

 

[Utsikt]

I believe that one of the issues are that it’s extremely difficult to describe the whole range of experiences in a simple, yet inclusive manner.

The upper end of mild can work and live on their own. The lower end of very severe are practically living dead, functionally blind, mute, deaf and paralyzed, and they are some of the illest patients across all known diseases.

And the only known difference between these groups are the ‘threshold’ for what causes symptom and/or illness exacerbation. (Not including complications)

I usually tell mild/moderate patients that wonder if X caused them PEM, that they should look at the very severe and see what they can’t tolerate. If it can harm someone that’s very severe, it can harm you if you cross your individual threshold.

A lot of patients seem to believe that certain parts of their existence are exempt from PEM. I believe they are wrong. As far as I can tell, anything can trigger PEM in the right dose.

 

[Yann04]

I believe that one of the issues are that it’s extremely difficult to describe the whole range of experiences in a simple, yet inclusive manner.

The upper end of mild can work and live on their own. The lower end of very severe are practically living dead, functionally blind, mute, deaf and paralyzed, and they are some of the illest patients across all known diseases.

And the only known difference between these groups are the ‘threshold’ for what causes symptom and/or illness exacerbation. (Not including complications)

I usually tell mild/moderate patients that wonder if X caused them PEM, that they should look at the very severe and see what they can’t tolerate. If it can harm someone that’s very severe, it can harm you if you cross your individual threshold.

A lot of patients seem to believe that certain parts of their existence are exempt from PEM. I believe they are wrong. As far as I can tell, anything can trigger PEM in the right dose.

I think it can be not too difficult.

Ie. if I take the CDC page. A couple example rephrasings to make it more inclusive.

People with ME/CFS often report their symptoms get worse when they are standing or sitting upright.

Can become
People with ME/CFS often report their symptoms get worse when they are standing or sitting upright. Some people with [very] severe ME/CFS cannot stand or sit at all.

• Professional counseling. Talking about how to cope with the illness and its impact on daily life may help.

Can become

• Professional counseling. Talking about how to cope with the illness and its impact on daily life may help some people. Some patients may not have the energy to do this, and very severe patients may not be able to communicate at all.

 

[bobbler]

Agreed. I really don’t see myself in any of those “official descriptions”. It always sucks to read, because it feels like my suffering is never acknowledged, only that of those less severe than me.

As if we don’t have “evidence” of that suffering. We do have evidence of it. But it hasn’t been acknowledged by people in power or published in journals. So somehow it’s less real.

I have read absolutely no description of the illness except things written by fellow very severe people, that seems to be able to describe the illness without feeling like it subtly denies my experience (not on purpose). Of course, some descriptions are better than others, and some are pretty good. But I don’t feel comfortable sending any to friends family or doctors, because the resources will automatically make them assume I can do things I cannot do.

I can’t put my finger on getting the words right but I think partly underlying it is the invisibleish (it isn’t invisible but pwme can hide it and onlooker choose not to acknowledge) vs can’t hide/not invisible of being iller and more severe , except that we become ‘disappeared’ because we can’t get out + most won’t let us out and be kind when we might be in that interim where we could if we had wheelchairs and consideration and our lives were easier so we had the odd bit of space to eg spend time chatting to a friend vs being stuck on a phone system being given the run around for something we essentially need.

I know this idea of being honest makes us all squeamish because of how unforgivably too many healthy people (I hate that term because most are lucky not to be unwell but aren’t ’behaving well’ which healthy infers) react to what is just stating fact. Because I’ve been there thousands of times. It’s terrible. Our reaction to that bigotry should (in theory and if the world was good) be to tackle those problem children who are so brutal in said reaction because 1. They get away with it by intimidation working 2. Their brushing off disabled people asking them to not put themselves above them when it harms then/have consideration works for them

but then we have our own situation to contend with so don’t choose the argument and if not all of us are standing arm in arm at the same time wanting to admit this then the risk is they ask another pwme who at that point just says whatever not realising they are undermining someone who has either had to or been brave enough to say it.

. A lot can understand, and then choose that ideology later when something crops up that leaves them with a moral dilemma, I’ve watched it as the most common pattern for friends and staff - ‘get it’ and then slowly choose to not. And of course it’s that ‘getting bored if that person refuses to recover after eg six months’ like there is a limit on how long people are allowed to be disabled.

anyway, certain ‘concepts’ are more understood readily and those who can live and have a path with those being understood giving enough leeway vs their threshold don’t need to feel like bringing up the real mechanism vs those who are being eaten alive by this repeated imposing of the exact opposite to what we need.

we almost have to pretend we are ‘a bit tired’ to be allowed to stop rather than that reality of our illness where if we work just as well as anyone else for half a day (or whatever working pattern) then more rest we can survive, but turn up noise from building work or force us to to the extra half day and we are in bed for a week, and repeat that for a year and we are 15% more disabled and with a new, lower threshold turning that half day into now can’t do that half day etc

it doesn’t seem important until it is important on managing your own life. But when it is about advice and getting ‘what it is’ understood and bigger policies on how to manage it’s fundamental, as well as it being a clue for getting to the bottom of what’s going on research-wise

 

[Utsikt]

There’s also the issue of not being aware of all of the things that automatically happens. My dad once asked me if a short conversation could cause me PEM. I had to tell him that at my worst, simply being aware that someone was in my room (with earplugs and a sleeping mask), was enough to cause PEM.

He asked why, and I had to explain that as social animals, the presence of other social animals cause a lot of things to happen in our brain. My brain did not have the capacity to handle that at the time.

It’s not normal to think about these things. I even had to explain it to my doctor. When you say that ‘everything’ can cause PEM, people simply don’t understand what ‘everything’ actually means.

@Yann04 good examples. I believe you’re right that it might be less complicated than I originally thought.

 

[bobbler]

I believe that one of the issues are that it’s extremely difficult to describe the whole range of experiences in a simple, yet inclusive manner.

The upper end of mild can work and live on their own. The lower end of very severe are practically living dead, functionally blind, mute, deaf and paralyzed, and they are some of the illest patients across all known diseases.

And the only known difference between these groups are the ‘threshold’ for what causes symptom and/or illness exacerbation. (Not including complications)

I usually tell mild/moderate patients that wonder if X caused them PEM, that they should look at the very severe and see what they can’t tolerate. If it can harm someone that’s very severe, it can harm you if you cross your individual threshold.

A lot of patients seem to believe that certain parts of their existence are exempt from PEM. I believe they are wrong. As far as I can tell, anything can trigger PEM in the right dose.

But no they have the same thing and often the difference is just how battered they’ve been over a long period of time

to me the difference between mild and very severe reminds me of what we used to get taught as kids in the old days about homeless people on the street

that everyone is only x unlucky steps away + those who could have supported and made a difference stepped away from being there themselves

you take someone mild and they have a support network that is a family believing in bps, bad friends taking advantage and the only employment they can keep a roof over their head with is crazy hours and physical and I think in ten years they will be severely disabled

if someone can’t move jobs because the alternatives are a commute their body can’t make and they can’t interview anyway because they don’t have time off when they aren’t in bed and looking wrecked. And if asking for adjustments or employment rights just involves work the size of another full time job, stress, and their employer deciding they now don’t like them so managing them out whilst they try and cling on in unkind conditions - another norm - that Erodes their envelope.

moving house costs money and requires energy on a continual basis in the spare time someone doesn’t have as they are in bed to recover enough to get thru their working week

The ‘supporters’ who they didn’t have anyway get more frustrated with them and read more bps etc.

and tear on year that gets worse because their threshold reduces.

it’s a condition of ‘moments of truth’ in too many and at the moment when those come is when we are the most badly served

 

[bobbler]

There’s also the issue of not being aware of all of the things that automatically happens. My dad once asked me if a short conversation could cause me PEM. I had to tell him that at my worst, simply being aware that someone was in my room (with earplugs and a sleeping mask), was enough to cause PEM.

He asked why, and I had to explain that as social animals, the presence of other social animals cause a lot of things to happen in our brain. My brain did not have the capacity to handle that at the time.

It’s not normal to think about these things. I even had to explain it to my doctor. When you say that ‘everything’ can cause PEM, people simply don’t understand what ‘everything’ actually means.

@Yann04 good examples. I believe you’re right that it might be less complicated than I originally thought.

Spot on. This conversation is basically to different extents on different things with different reactions something that for decades I’ve had to either have or choose to duck as the energy of it isn’t going to yield enough/any gain probably 20-100 times a day for 25yrs.

no one who is on the other side of the coin wants it to stick because they want to behave as they like despite the consequences on others - so they just watch or ignore the consequences, deny them, argue

so yes if I had that conversation once there have been maybe 1 out of 100 who would be remembering it for the next time . Most I could tell them 400 times and they’d keep doing it and/or pretend they were surprised and just get joy out of exhausting me by stringing the conversation along or think they were doing the right thing by half listening thinking I just wanted to get those words out, that that I needed them to take it on board (and am not talking gif no reason or because’ I want a counsellor’ but because im trying to gently say I need them to understand and change their behaviour and this is the reason why) as I tried desperately for them to care about the impact

 

[Trish]

Trying to establish a level of input from the very severe to any fact sheet on the very severe is essential.

I'm working on it. The next factsheet consultation will include a way for people with very severe ME/CFS to input their feedback without having to negotiate the bunfight of a busy forum thread. I can't promise it will be perfect, but we are aware and doing our best.

 

[DigitalDrifter]

I can’t think of anything other than trying to spread awareness. ‘Very severe’ is probably a suitable topic for a future fact sheet.

this disbelief that many end up as severe as they are due to the thousands of papercuts adding up as reductions in thresholds (as consequences) each time

I had a very gradual deterioration over many years, slowly getting worse with pushing past my deterioration threshold, although there were some more sudden worsenings by more major over exertions. My sensory symptoms and sleep issues were particularly gradual.

I agree with Trish that very severe ME/CFS is the appropriate label.

Deteriorative doesn't necessarily mean very severe, you can be very mild but deteriorate very easily by just exerting beyond your deterioration threshold, and the consequences can in some cases be permanent, not denying that some/many recover to some extent.

@DigitalDrifter, as the starter of this thread, how do you feel about your experience being included in the very severe ME/CFS category?

I want my experience to be counted.

Due to super low PEM threasholds you have to become functionally blind and deaf lest you crash. All your food is liquid.

I would consider that profound ME, 1 step past very severe.

PS: ME is not the only illness with deteriorative symptoms, Autism for example can cause deteriorative sensory intolerance as in my case, however I've never seen this acknowledged in published research, only in patient communities.