Sly Saint
Senior Member (Voting Rights)
I've lived in Sussex the whole time I've had ME and I've only just found this.
First of all its the old gripe, IE chronic fatigue used instead of chronic fatigue syndrome.
I'm part way through watching the video and again its entitled living with chronic fatigue.
Interesting that they say it's more than tiredness when this is what the NHS says is the main symptom.
So far, some of the content is OK, but this mixing of chronic fatigue and CFS carries on even though they then say, it's not the same as chronic fatigue. Very confusing.
They also are wrong on the moderate sufferers (doesn't comply with NICE even) saying that people who are moderate might have to reduce their work hours and make adjustments.
Then they start on Boom and Bust.
As I said I'm only about 10 minutes in, its 31 minutes long.
(no mention of ME/CFS so far, they just talk about making a diagnosis of Chronic fatigue syndrome)
Myalgic Encephalomyelitis (ME) and Chronic Fatigue Service (CFS) (sussexcommunity.nhs.uk)
eta:
First of all its the old gripe, IE chronic fatigue used instead of chronic fatigue syndrome.
I'm part way through watching the video and again its entitled living with chronic fatigue.
Interesting that they say it's more than tiredness when this is what the NHS says is the main symptom.
So far, some of the content is OK, but this mixing of chronic fatigue and CFS carries on even though they then say, it's not the same as chronic fatigue. Very confusing.
They also are wrong on the moderate sufferers (doesn't comply with NICE even) saying that people who are moderate might have to reduce their work hours and make adjustments.
Then they start on Boom and Bust.
As I said I'm only about 10 minutes in, its 31 minutes long.
(no mention of ME/CFS so far, they just talk about making a diagnosis of Chronic fatigue syndrome)
Myalgic Encephalomyelitis (ME) and Chronic Fatigue Service (CFS) (sussexcommunity.nhs.uk)
eta:
Transcript
0:01
[Music]
0:08
I used to commute in London into one area and just walking to the tube
0:14
station or walking down to the shops and walking back again actually started to get quite effortful and um before that I
0:21
was I was jogging three times a week I'd done the couch to 5K I did a lot of
0:26
swimming and stuff and I was finding that I just I couldn't do that and but it was
0:32
just the kind of the normal walking that used to be I wouldn't think about that um was becoming problematic I just felt
0:40
like things were much more difficult um it was hard on my heart and lungs I felt it felt more
0:48
of a pressure um I felt out of breath more and of course I was someone that was actually quite active so that
0:55
wouldn't have happened normally for me at all in fact I like doing a ro
1:00
exercise and all that kind of [Music]
1:12
stuff it's a state of being where one feels completely and
1:20
utterly depleted of any energy whatsoever so people do do describe it
1:28
in different ways cuz is different for different people in terms of the severity but some people say it's like
1:35
the plug's been pulled out other people will say well one lady
1:41
described it to me really poignantly and said it's like my blood has been replaced by lead um someone other people say it's
1:49
like you're covered in sandbags or you feel like you're covered by cement it's just that inordinate effort to do even
1:57
the simplest of things often people will just describe it is that really full
2:02
exhaustion physically cognitively so that sort of mental
2:08
processing um emotional exhaustion as well and
2:15
um sometimes people have described it as kind of wading through tweal that real
2:21
kind of being hit by a bus there's lots of different descriptions that people use but I think it's very different to
2:27
tiredness and it is that all encompassing debilitating fatigue that can affect
2:33
getting up having a shower going out for a walk making a meal going to work so it
2:40
can it can have a kind of you know a really full impact on someone's life so
2:46
people that are more affected mildly might still be able to work they might be able to study they might still be
2:52
able to engage in Social family activities if you're more moderately
2:57
affected then you might struggle to work so you might have to reduce your hours
3:03
you might have to um make other adjustments you will definitely have to make adjustments to your social and
3:09
family life and those that are severely affected um can be housebound or even
3:15
bed bound so it really does affect people very very differently so it can
3:20
affect family life it can affect Intimate Relationships
3:25
friendships um and that can have a real impact
3:32
on you know how connected someone is with other people so it can have a real
3:37
kind of impact on a sense of [Music]
3:47
isolation I went to the doctors quite a few times the trouble is um I don't think they knew what was wrong with me
3:53
and I didn't know what was wrong with me so I had to just keep coming back cuz they'd say one thing and it wouldn't
3:58
quite work and so would go back and try something else it was kind of a bit of a accumulation of experiences so it took a
4:06
long time actually it was actually a friend who spoke to me and who had
4:13
chronic fatigue who I didn't see the parallels at all because they were more ill than me um that mentioned to me said
4:22
there's some of the things you you're describing really sounds like me have you talked to the doctor about it and I
4:28
kind of didn't want that to be the case because I've seen other people that have
4:34
um had real limitations in their life and mobility and at the time I was still
4:40
able to work and do things and I kind of didn't really want to think that that might be something that I might have to
4:45
do with but um they were right they were spot on I think a lot of people get
4:50
mistaken with you know chronic fatigue and then assuming that that's chronic fatigue syndrome but there is a real
4:56
difference chronic fatigue can be linked to other conditions so a lot of physical
5:01
health conditions can have fatigue as a symptom um plus some mental health
5:07
conditions such as anxiety and depression also have fatigue as as part of their symptom so um although somebody
5:16
might be chronically fatigued and it's impacting on their life there may be a reason for that due to another physical
5:22
condition or mental health condition and if that is um the cause of their fatigue
5:27
it's really important that that gets checked and that blood um tests are done
5:33
and consultations with GPS and other Specialists may be really really important once any cause or possible
5:42
explanation has been ruled out then we look at making a diagnosis of chronic fatigue syndrome but there is quite a
5:48
strict criteria in terms of making that diagnosis and it can take quite some
5:58
time usually I can definitely see an energy
6:04
crash coming um I'll usually know when I'm booking
6:10
too many things in that I probably will be pushing things but if they're really
6:15
nice I might just decide to go for it so even this week um I'd had a really nice
6:22
weekend I'd done two things which was quite a lot they were lovely
6:30
but um going out and seeing people but I knew that that would be quite a lot and
6:35
then I also did archery on Wednesday and
6:41
um I I had to I knew that it was going to be struggle to then be okay to do
6:47
this on Friday so I had to cancel things for Thursday and I still actually felt
6:53
pretty ill on Thursday well boom and bust you can apply it to lots of different situations so it's used in in
6:59
terms to demonstrate talk about the economy for example but we talk about it in terms of activity when it comes to
7:05
chronic fatigue syndrome so if you imagine in your mind's eye that you have
7:14
a level of activity that you would normally do on a day-to-day basis and
7:19
you can take this back to before you became unwell so before you became unwell you
7:25
had your job your family responsibilities your social life you had all of those things that you did on
7:31
a regular basis that was manageable and was doable and was enjoyable and that is
7:37
what we call your Baseline it's a regular amount of physical social mental
7:43
activity that you can perform on a regular basis and what happens to your Baseline is that it drops considerably
7:52
what doesn't drop is your obligations your commitments your responsibilities
7:58
what happens with boom and bu is that people will strive to do what they want
8:04
and need to be able to do they will either push through their symptoms and say I'll just do this this is my
8:10
responsibility this is what I do this is the person that everyone knows me to be there might be pressure from other
8:16
people often it's pressure from ourselves to strive to do what we've always done
8:24
um because that level of functioning is no longer sustainable because our level
8:29
of function is down here there's a crash we can't sustain it and that crash is
8:35
this enforced period of inactivity and that might
8:40
last days it might last weeks it might last hours it really really does depend
8:46
I think the take-home message about boom and Bast is that it becomes a vicious cycle it
8:52
perpetuates and and people often feel propelled to do more when they feel
8:57
slightly better out of guilt out of expectation from others expectations of
9:02
themselves but it really is not the way forward in terms of managing chronic
9:08
fatigue and chronic fatigue syndrome The Way Forward is to recognize those early
9:14
warning signs recognize when you're going beyond your Baseline and to stop
9:19
then recharge and then go back again to that activity stop and recharge so that your
9:28
Baseline becomes more of a a wavy sort of concept of to what you can
9:34
sustainably manage activity-wise in the long term not just in the short
9:43
[Music] term I know quite a lot of about stress
9:48
theoretically from just my background and my education um and also from
9:54
experience like everyone else in the world who has stress um for me and my fatigue it's
10:01
[Music] um it's like it condenses the fatigue
10:06
and um um amps it up basically so I
10:11
described it to a uh friend and colleague that it's um I
10:17
don't know if you ever seen these old French movies by Francis Trusseau it's the new V where it has this like this big uh
10:27
like View and then it go smaller and smaller and smaller into the small view of the scene it's a bit like that so um
10:35
my abilities and my attention my focus from being kind of at a normal level
10:42
starts to condense down um being able to
10:47
be active starts to decrease and the more discomfort I get so it gets more
10:54
um effortful to move um even in I I think
11:00
particularly breathing as well and um even uh standing upright for example all
11:07
of this gets more and more harder and harder and harder until I literally can't do anything like I can't I need to
11:14
lie down and I can't speak to anyone and I can't I just can't do anything at
11:21
[Music] all
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