Would you say that you suffer from debilitating fatigue or extreme fatigue?

[NelliePledge]

I’m another who tends to avoid fatigue as a description for how I’m affected. I rarely feel sleepy during my waking hours. I rarely nap. I do feel debilitated like you do when you have a flu like bug especially during PEM and extra especially if it’s a bad insomnia one. As moderate level ME I have quite a variation.

I can also relate to Abgeschlagen/abattu/beaten up - as a good description of flu type body aching

 

[PageofME]

Coming from a slightly different angle,
I’ve always said sick, not tired. It's one of the reasons I reject the Chronic Fatigue syndrome framing. I didn’t go to my doctor after a 2 weeks nasty illness saying I’m really tired, even if some do, I went to him after I’d failed to recover as a 16 year old and still felt ill, including of course the weakness and fatiguability (but as you say on good days, you don’t have overwhelming sense of exhaustion if you are mild to moderate). At the immediate time, the most strong symptom had been neck pain /migraines, and i was diagnosed with a neck injury.

If we are using the term extreme fatigue for mild-moderate cases, the severe cases are also left with no language, so debilitating fatigue would be better as that allows a spectrum. It’s not necessarily a suitable term for more mild cases, for the reasons &patterns of illness described . As you get to very severe ME where people have crippling weakness AFFECTING SELF CARE and normal cognitive function, sensory sensitivity & pain, bordering on paralysis in all domains & being extremely unwell ON EXERTION, then the framing of “fatigue”, whether with the adjective extreme or not, is problematic because it is too weak/ reductionist/ benign. I therefore have a contrary view to the post above that says the focus on fatigue/ tiredness is coming *from* the severely affected - when the severely affected have particularly resisted a fatigue framing

I didn't claim that the focus on fatigue comes from the severly affected. I said that the focus on fatigue comes from the gaze of the journalists and documentalists and their readers / viewers on the severely affected.

 

[Yann04]

I didn't claim that the focus on fatigue comes from the severly affected. I said that the focus on fatigue comes from the gaze of the journalists and documentalists and their readers / viewers on the severely affected.

I haven’t engaged with german coverage much so I think you must be correct but also I think looking deeper the bias from the average journalists gaze would be coming from the structural effect of an explicitly mild conception of the disease (as CFS). This conception usually completely erased severe people and the more general framing of a severe illness and emphasised fatigue and psychiatric comorbidities.

This conception can still be very much seen on like NHS page or simply google pop ups so when the journalist looks up the disease to write their article they will be influenced by it.

 

[alex3619]

I am currently somewhere on the low severe range, not very severe. Fatigue, such as it is, never stopped me doing anything. I could always push through. This is a huge problem if not controlled, as it can lead to a crash, whether I call it PEM or PESE or whatever.

I used to think fatigue is everything. Now I think its almost nothing. Its not the fatigue that is the issue, its what comes with it. Is it fatigue to go into cardiac arrest during an OI blood pressure crash? Is it fatigue to be so exhausted I cannot move a few feet without hours of rest, and then need to really push myself even though I worry I will totally collapse and go into hospital or worse?

If the recent spate of research is accurate, and replicated, and passes peer review given some of it is conference announcements, we have major problems.

We can have severe dysautonomia, especially if we get PEM. Norepinephrine and epinephrine synthesis is compromised. In the brain this has been observed, though I really want to see the paper, it was just a conference announcement. Something similar is happening in the rest of the body, but this is inference from a meta-analysis and requires more research. Further there is now autopsy data on brain damage in the hypothalamus, impacting the HPA axis and hence cortisol regulation. Will this continue to be replicated, is it in subgroups or are we all heading for that? Hypoxia is suspected during activity in all tissues, but this year saw it demonstrated in muscle. The oxygen is not diffusing through the muscle properly, and the regulation of blood vessels, impacted by the above hormones, is measurable. If oxygen is not getting through, I infer other nutrients are not getting through, and waste is not being removed fast.

I see the problem more as a failure to adapt to stressors. ANY stressor. Exercise is the most basic, but too much cognitive or emotional activity is also not good. So the experience for me if I overdo it even a tad is my brain starts to lose focus and is rapidly worse and worse. Its not just brain fog, its like being in a daze, or really drunk, or something. My muscles can be pushed a bit but then start getting worse very rapidly. I have had some success with the protocol from Perikles Simon in doing resistance training, but I require many hours or even days between sets, not the two minutes he suggests.

Debilitating is correct though. I cannot do stuff, and if I try I get worse and worse. I have to operate within my limits at all times, or get worse. Those limits vary day by day but are not great, severely limiting my capacity to do things.

I think I am fatigued with the concept of fatigue. Its so tired, irrelevant, obsolete. The things that go with that fatigue, that the fatigue sensation is induced by, are far more important.

 

[Ravn]

To answer the question in the title: No

I fluctuate between feeling like I’m coming down with a cold on a good day and feeling completely wiped out by a full-blown flu during PEM (minus the cough & snot & actual high fever though weirdly still feeling very feverish)

Both include a level of fatigue but on a good day it’s neither extreme nor debilitating. During PEM fatigue is severe but what makes PEM debilitating isn’t the fatigue but the whole omni-stew of symptoms

Then there’s rapid fatiguability (which limits function a lot) but the resulting symptoms are again a mixed bag, fatigue is a relatively minor component

 

[Andy]

For me, it depends on how you define fatigue.

I have a constant feeling that I have limitations on how much I can do, no matter whether that is immediately after I have woken up or I am just going to bed at night. This is debilitating, in the sense of reducing my ability to function. This is extreme in the sense that, compared to someone typically healthy, there is no reason to feel such strong limitations. This is fatigue if that is defined as a feeling of inadequate energy; it is not fatigue if that is defined as tiredness following exertion.

 

[PageofME]

I haven’t engaged with german coverage much so I think you must be correct but also I think looking deeper the bias from the average journalists gaze would be coming from the structural effect of an explicitly mild conception of the disease (as CFS). This conception usually completely erased severe people and the more general framing of a severe illness and emphasised fatigue and psychiatric comorbidities.

This conception can still be very much seen on like NHS page or simply google pop ups so when the journalist looks up the disease to write their article they will be influenced by it.

Thanks for making me aware that perception of ME/CFS can be very different form country to country.

Since I have become aware of ME/CFS as a possible explanation for my health issues in December 2021 the focus in the German speaking media and the experts like Prof. Scheibenbogen was mainly on the severe and very severe. So there wasn't an explicitly mild conception of the disease discussed.

Scheibenbogen and journalists rather painted a picture of an illness that was directly severely disabling after onset and from where no recovery was possible anymore.

I remember this very well because seeing these documentaries where only severely affected people were documented led to a situation of panic for me after I had watched my first documentary. I was lucky that about a week later I was in my social therapeutics group where I was provided the space for emotional release. I went through extreme anxiety almost a panic attac in that moment and then could understand that I was so frightened because the ME/CFS documentary had left me worrying whether it was my destiny to become house- and bedbound too in just a few month.

Last year when I was working on building a routine of daily movement with my physio I realised that since I had fully realised that I had indeed ME/CFS in May 2022 (that took another six months because of my psychological denial and faulty medical judgement) my motivation to learn to manage ME/CFS was almost fully fueled by my anxiety to become severely affected and dependent on care (and abused again in the health system as I had experienced it in psychotherapy since I was a child).

I have met others online who had just been diagnosed who shared my experience of being in a panic after watching these German documentaries from the last years.

It was only when I began accessing resources of the British ME Association that I realised that as a moderate I had a realistic chance at stabilising my health situation.

 

[MrMagoo]

Thanks for making me aware that perception of ME/CFS can be very different form country to country.

Since I have become aware of ME/CFS as a possible explanation for my health issues in December 2021 the focus in the German speaking media and the experts like Prof. Scheibenbogen was mainly on the severe and very severe. So there wasn't an explicitly mild conception of the disease discussed.

Scheibenbogen and journalists rather painted a picture of an illness that was directly severely disabling after onset and from where no recovery was possible anymore.

I remember this very well because seeing these documentaries where only severely affected people were documented led to a situation of panic for me after I had watched my first documentary. I was lucky that about a week later I was in my social therapeutics group where I was provided the space for emotional release. I went through extreme anxiety almost a panic attac in that moment and then could understand that I was so frightened because the ME/CFS documentary had left me worrying whether it was my destiny to become house- and bedbound too in just a few month.

Last year when I was working on building a routine of daily movement with my physio I realised that since I had fully realised that I had indeed ME/CFS in May 2022 (that took another six months because of my psychological denial and faulty medical judgement) my motivation to learn to manage ME/CFS was almost fully fueled by my anxiety to become severely affected and dependent on care (and abused again in the health system as I had experienced it in psychotherapy since I was a child).

I have met others online who had just been diagnosed who shared my experience of being in a panic after watching these German documentaries from the last years.

It was only when I began accessing resources of the British ME Association that I realised that as a moderate I had a realistic chance at stabilising my health situation.

Many things thesedays are described on a “spectrum” for example Autistic Spectrum. The idea of levels of ME severity or an ME spectrum is totally missing in most public discussion. In addition, the progress or deterioration of ME isn’t really discussed because they will always cite there are no studies so we don’t know the prognosis.
This is the sort of gap I think you experienced because you saw people who were severe/very severe. The average patient is seen as either fairly mild and functioning almost normally, or very severe in a dark silent room. Both extreme ends of a spectrum, and no advice on where you are or whether you will stay there or not.

 

[bobbler]

Many things thesedays are described on a “spectrum” for example Autistic Spectrum. The idea of levels of ME severity or an ME spectrum is totally missing in most public discussion. In addition, the progress or deterioration of ME isn’t really discussed because they will always cite there are no studies so we don’t know the prognosis.
This is the sort of gap I think you experienced because you saw people who were severe/very severe. The average patient is seen as either fairly mild and functioning almost normally, or very severe in a dark silent room. Both extreme ends of a spectrum, and no advice on where you are or whether you will stay there or not.

I think it’s worth saying out loud that it’s clear nearly all in the uk have been made to believe that me/cfs severe and very severe do not exist.

And it’s actively pushed.

So those of us who are still have to hide from people who might claim they ‘get’ me/cfs but in their head it’s fatigue and can be pushed thru and they come across us and want to send them to the psychiatric ward ‘must be something else/behavioural because it doesn’t get that bad’. Of course those in denial because they played a part in the treatment that caused that harm for many to be ten times plus more disabled than they would have been are even more keen to push this idea. So those most harmed are most unsafe still. And the charities aren’t really picking up that responsibility either so it’s hard to describe imagine if it’s still being in a dystopian world where you are bottom of the conversations that would ever be gotten to even if your name is used by others claiming they need adjustment to ‘not end up that way’

Anyway look at the awful propaganda attacking a dead patient (by saying she’d have lived if she’d done CBT even though when the inquest was on it was made clear that CBT misinformation was actually what led to the lack of care )that Miller and Garner wrote that was commissioned by a doctors association . Something you’d think in a right world would have been criticised by such association not the other way round. Game playing about past deaths for pr in order to what achieved more of what they want to offer that actually caused the problems that allows these deaths and more disability to occur etc.

 

[AliceLily]

I don't compare delayed PEM to fatigue in my experiences. It feels like a different illness. More like weakness than fatigue.

Yes same here with the weakness that comes with delayed PEM.

For me, fatigue is only a part of ME and I don't always have it. ME has always made me feel very ill with many multitudes of symptoms. Also, very severe and severe ME symptom wise were like x 100 compared to what I experience now at moderate. I feel like I am light years away from the intensity that I once felt. But I am still very disabled in that I can not overdo and have to keep up my resting routine so that I don't deteriorate again. I know very severe ME will come back on me again if I don't be careful. Improvement isn't a cure from being very severe again.

 

[Sean]

Anyway look at the awful propaganda attacking a dead patient (by saying she’d have lived if even though when the inquest was on it was made clear that CBT misinformation was what led to the lack of care )that Miller and Garner wrote that was commissioned by a doctors association .

And by implication those who tried to point out that psychologising it all and treating with CBT was highly inappropriate.

Hard to find any kind words to describe the likes of Garner and Miller. I can't even grant them merely 'well-meaning' anymore.

There are simply no excuses whatsoever for continuing to flog this dead horse carcass, and especially not in this brazenly cruel exploitative manner.

 

[bobbler]

I think it’s worth saying out loud that it’s clear nearly all in the uk have been made to believe that me/cfs severe and very severe do not exist.

And it’s actively pushed.

So those of us who are still have to hide from people who might claim they ‘get’ me/cfs but in their head it’s fatigue and can be pushed thru and they come across us and want to send them to the psychiatric ward ‘must be something else/behavioural because it doesn’t get that bad’. Of course those in denial because they played a part in the treatment that caused that harm for many to be ten times plus more disabled than they would have been are even more keen to push this idea. So those most harmed are most unsafe still. And the charities aren’t really picking up that responsibility either so it’s hard to describe imagine if it’s still being in a dystopian world where you are bottom of the conversations that would ever be gotten to even if your name is used by others claiming they need adjustment to ‘not end up that way’

Anyway look at the awful propaganda attacking a dead patient (by saying she’d have lived if she’d done CBT even though when the inquest was on it was made clear that CBT misinformation was actually what led to the lack of care )that Miller and Garner wrote that was commissioned by a doctors association . Something you’d think in a right world would have been criticised by such association not the other way round. Game playing about past deaths for pr in order to what achieved more of what they want to offer that actually caused the problems that allows these deaths and more disability to occur etc.

Oh and to spell it out the constant inference that severe and very severe isn’t real and those who die or get that I’ll have ‘something else’ is very much tied in with this twilight bs everyone wants to sit in where they actually really won’t and don’t want to acknowledge me/cfs as it properly is - just some weird ‘fatigue concept’ they give nothing more for than a nodding it’s real written on a document then expecting people to carry on as normal or bullying them .

And the idea once that mistreating leads to injuring them ten times worse disability than if they’d written a note of support so they could live a relatively normal life but with adjustments like part time or years off here or there has to not be true to these people. So those who are iller can’t exist and or have behavioural issues once they’ve exhausted them to severe or very severe and want to dump them as ‘unsaveable souls’ they don’t like.

Vitally important for everyone with me/cfs they’d have to acknowledge that ignoring our needs and belittling the impact of pushing us into PEM all the time is more than an issue of us ‘just not being resilient to that discomfort’ which is what the uk thinks it is - whatever we call it. The important bit for them is closing their eyes and ears to making us decline and be worse each year until we can’t leave the house so as long as we stay there they can say what they want about the cause and reason.

So the idea there is a country where the press is getting across the severe and very severe is important - because yes theoretically if forced to live a normal life and bullied then any me/cfs is made more severe. It’s only both acknowledging that never needed to be the outcome for many and taking responsibility for allowing support to make adjustments possible etc that makes it actually treated as a ‘real’ illness. The ‘best’ we get here is vile behaviour it’s suggesting the symptoms of disrupted sleep when in PEM was bad behaviour and so our lack of bed time causes the disability not the full work day causing the PEM. It’s gross.

I know many milder don’t like having the more severe even talking about what their life is like in real terms in groups ‘lest it scare people’. It reminds me of the episode in House MD where the doctor in his team who has Huntington’s genesis was on a trial and found it hard at first that there was someone more severe in the waiting room because that was her future. But the thing is there are almost no physicians ‘seeing us’ we just disappear ‘cos there is nothing to offer you’ and few services want to deal with us or have good advice. And as @MrMagoo notes it’s a spectrum where anyone can go up or down.

I find it hard to find a word healthy people who feel put upon or top of list of ‘tired people’ don’t immediately think they’ve experienced - and then when I explain think flu, ebv and having to do a marathon then sit in transit on a plane for 5days as a start they switch off because I realise they don’t want to generally ‘get it’ that type.

The ones who do want to get it have shockingly shown this up when I met them - it’d be one phrase like when I said I treated myself to watching a film but it had to be done in parts and couldn’t be too hectic etc even when it was one of my good days and I was lying down. Or having lunch and learning not to brush teeth before as that might use up my arms or energy I had to eat lunch and send me back to bed. You don’t notice you’re dropping these wake up points all over the place with people who aren’t giving off bigotry vibes and putting me on the different level of chat with their dismissing and questioning everything unless it’s their own woes in which case the rules are the opposite etc.

I don’t think we can get thru to those people except by getting thru to the rest first so they don’t change just realise they won’t get away with it anymore because others see them as socially unacceptable. I watched a friend get told off by her mum for how she treated me (didn’t realise as they were inside - ps her mum had also been ill either something else a long time) and said friend came out and told me in such a way that it was kind of ‘my mums wrong isn’t she, I haven’t just been really selfish with you’ . There wasn’t room for me to reply anything other than lies to agree with her - very bacme coercion and very certain professions and very group think mums on playground talking about how they weren’t the inconsiderate ones in a situation type thing.