NHS Sussex Community NHS Foundation trust: Myalgic Encephalomyelitis (ME) and Chronic Fatigue Service (CFS)

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:

 

They do Graded Activity. It's goal oriented, with a timescale.

They call it Building Up Your Baseline.

This Sussex 'ME/CFS/Chronic Fatigue' service is still obsessed with GET

https://www.sussexcommunity.nhs.uk/...s/patient-resources/building-up-your-baseline



'Building up your baseline'

'A diagnosis of mild-moderate ME/CFS does not stop somebody from building up their baseline when they feel ready to do so, be this physically, cognitively, or socially.

The key is to find any activity that is meaningful to you and/or that you enjoy and would like to work on as a goal. Write down your goal and make it specific, measurable, achievable, relevant to your life/situation and with a timescale.

Start at a level that is manageable (this may feel very low level to start with) on top of your normal daily activities. It should be an amount that doesn’t flare up your ME/CFS symptoms – this is your baseline. Stick to it and don’t be tempted to do more on days you feel able to.

When you have become familiar with engaging in your baseline activity ‘little and often’ and feel ready to increase the duration, you take a step up by initially increasing the length of time you engage in the activity.

A maximum of 20% is a good measure e.g., 5 minutes of reading or walking would become 6 minutes; aim to build up gradually the number of days you can maintain this baseline e.g., aiming for 5 days in the long term, but starting from where you are, it is not a race.

Do not build on your baseline every day or week e.g., you must start somewhere, so perhaps try 5 minutes engaging in the activity, testing this out over a two-week period for safety in terms of risk of flare up of symptoms, avoiding post exertional malaise (PEM). If you can manage this safely over consecutive days, you may then decide to increase to 6 minutes and test again over a two-week period again before increasing further if you choose to do so.

You may prefer to increase by less.

Remember you’re in the driving seat. You decide when you’re ready to do a little more. Equally, your baseline is flexible and may be slightly reduced if you have a setback.'

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2nd part of transcript

 

"I think it's really important to
11:29
look at stress in relation to chronic fatigue syndrome because often it can play a role in sort of many years before
11:36
the illness actually developed so somebody might have had and experienced quite a stressful childhood the the
11:42
actual onset or the actual trigger might have encapsulated an element of stress
11:48
and then what happens on the body is that um it can have an impact on the body system in terms of kind of coping
11:55
with those events um and what we also know about stress is that it's an
12:01
exacerbating sort of factor so it can help to maintain the symptoms of chronic fatigue syndrome so it is important to
12:08'



So sounds a lot like the 'childhood trauma causes CFS' ideology.

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This is GET.

 

The woowoo meter is off the charts here.

Professional skeptics love it.

Make it make sense. Please make the world start to make sense because holy crap this is bad.

 

encapsulated an element of stress...

oh really? now where would that be?

I can see them all nodding their heads about their wonderful grasp of neuroscience - yes, see that trauma? it methylated that bit of your DNA and well, we don't really know how it works but we are quite sure something traumatic happened to you and this is why you have CFS. But I don't remember anything bad?...You repressed it. It is now in your subconscious controlling your body and mind. What body system? ummh, we are not sure really but you must learn to relax and sleep better, you are not good at coping with normal life stress. But I was perfectly able to before I got the infection? No, you only thought you were....forget about the trigger, that was coincidental.

 

It’s an oldie, but it’s a goodie.

Louise Hay can rest easy in her grave, now that in a land far far away in the damp and earthly realm, the NHS has vibrationally ascended to the wealth creating entrepreneur purple leader level.