Author Topic: Chronic fatigue syndrome  (Read 2101 times)

Chronic fatigue syndrome
« on: 17 August, 2012, 01:14:01 pm »
Not me, but one of the teenagers. Been having problems with him for ages and knew something wasn't right - but working out if he had a serious health problem was made a bit difficult by his being basically bone-idle anyway.  An addiction to computer games makes it difficult to get him out and about or send him to sleep with reasonable regularity.

Pediatrician has now diagnosed CFS and prescribed melatonin to try to regulate sleeping patterns.

Reading up on melatonin, it seems some people have had success using this in conjunction with 'light therapy'. Anyone here have any experience of this?
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Re: Chronic fatigue syndrome
« Reply #1 on: 17 August, 2012, 02:25:37 pm »
I have ME and have not been prescribed melatonin, I do however use natural sunrise clocks and light boxes which have helped.  I have also overhauled my diet to a more natural, less processed one.  I also tried greens powders, but I have stopped using these now. I'm not sure if it helped or not. 

Re: Chronic fatigue syndrome
« Reply #2 on: 17 August, 2012, 02:43:55 pm »
TeenOik does have disturbed sleep patterns (more than normal for a teen) and the melatonin is specifically for that issue. It's a bit 'treat the symptoms', but then what else can you do?

How do you use the sunrise clocks and what makes/models do you use?
<i>Marmite slave</i>

lou boutin

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Re: Chronic fatigue syndrome
« Reply #3 on: 17 August, 2012, 03:44:10 pm »
Basically the natural sunrise clock mimics a summertime sunrise through out the year.  The clock has a bulb contained within in it and it slowly lights up the room to mimic a sunrise. The idea is that it is supposed to stabilise serotonin levels.  I use these in the winter mornings and a light box in the evenings.  I've also used both of these during the summer this year, as we haven't had much sun.  There are lots of clocks about on the market, but like everything, you get what you pay for.  Amazon have a few examples http://www.amazon.co.uk/s/ref=nb_sb_ss_i_0_11?url=search-alias%3Daps&field-keywords=sunrise+clock&sprefix=sunrise+clo%2Caps%2C232 be warned - the iboutique ones are rubbish - a friend bought one and it drained the batteries in two days.

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Re: Chronic fatigue syndrome
« Reply #4 on: 12 March, 2024, 12:41:39 pm »
https://www.theguardian.com/commentisfree/2024/mar/12/chronic-fatigue-syndrome-me-treatments-social-services

Very interesting article there by George Monbiot. I think quite a lot of us were already aware of much of what he says, without necessarily knowing the details of the characters behind it.
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Re: Chronic fatigue syndrome
« Reply #5 on: 12 March, 2024, 01:28:04 pm »
Puts some people in a very poor light.
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Re: Chronic fatigue syndrome
« Reply #6 on: 12 March, 2024, 02:02:00 pm »
I have a lot of time for Wessely, but he suffers from the common psychiatrists' disease of believing he can help.
Not especially helpful or mature

barakta

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Re: Chronic fatigue syndrome
« Reply #7 on: 12 March, 2024, 06:22:16 pm »
The way some people with chronic fatigue and other similar conditions are treated in the UK (and other healthcare systems) is atrocious. The permanent harm caused to many people by graded fucking exercise therapy or dismissiveness is huge.

The genderedness of presentation is huge, women are much more likely to experience most of the recognised auto-immune conditions like lupus or MS. Add other marginalisations to that like ethnicity and... I recommend Rebel Bodies which talks a lot about the genderedness of this stuff as well as other intersectionalities like ethnicity, LGB and transness etc. There's lots of case studies as well as discussions with medics trying to increase recognition and improve quality of care around these issues.

I have nothing good to say about the doctors and academics who publish misleading lies like the PACE trial. This was not an accident. They did it to promote their careers at the expense of people with CFS and they should be struck off for the harm they have and continue to cause. With great power, should come great responsibility. Instead of focusing on finding solutions and strategies, they reverted to the largely sexist "it's in your head". (And I'd argue that even if it is psychosomatic, it doesn't make it less real, see rants passim re things like Functional Neurological Disorder FND). We separate the body and mind stupidly, yet we know trauma and poor mental health correlates strongly with poor physical health (and vice a versa).

There are also wider issues relating to medicine, how we train healthcare practitioners to deal with situations they can't fix and or don't (yet) understand.

I've had "experts" (with very good reputations in some cases) literally blank me mid-consultation and cut me off with nothing, cos something about me flummoxed them.

I've also had excellent practitioners who listened, made sure there was nothing sinister going on and then were honest about what they did understand and what they didn't + limitation of treatments and then asked me if they could help me in any other way. In some cases those good medics have written me letters validating my issue, being honest about their understanding or treatment limitations as well as identifying me as an expert in my own needs and management strategy. Those letters have helped me not get blamed and gaslighted so much outside of the medical case and in part enabled me access to things like benefits that let me have money to help cover extra costs of disability or afford support options. 

I'm even considering writing to 3 of the best excellent practitioners to tell them how much of a difference they made to my life at the time and in 2 cases I now have more pieces of the jigsaw (some which were only published after the time I saw them).

Re: Chronic fatigue syndrome
« Reply #8 on: 13 March, 2024, 08:03:40 am »
They tried GET with my stepson. The person 'instructing' him just seemed bewildered when she was told that, after doing the exercises, he was even more ill on subsequent days "But these will help him, he must do them" was the response.

So indoctrinated by 'this is the prescribed therapy', she couldn't take in the evidence in front of her.
<i>Marmite slave</i>

HTFB

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Re: Chronic fatigue syndrome
« Reply #9 on: 13 March, 2024, 09:52:42 am »
The extended CBT course I went through at Wessely's King's College Hospital unit was undoubtedly the least helpful therapy or treatment of all. I didn't get on with the practitioner -- I can't now recall her exact status -- and she was utterly unable to cope with the idea that if my brain was too fogged to make a cup of tea in the afternoon, it was definitely not up to keeping a diary of what I was doing instead.

The fatigue I suffered was entirely in the brain*, not the muscles -- I rode the Invicta 200km at some point around then -- so if their methods were any good for anybody you would have thought they would be good for me. I was spared GET, which I don't think was Wessely's research though it fitted in with that world-view rather too well. It took me years to get referred to a neurologist and out of the psychiatrists' clutches: if only they weren't so convinced that they could help!

*and, I suspect, more obscure systems.
Not especially helpful or mature


ravenbait

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Re: Chronic fatigue syndrome
« Reply #11 on: 13 March, 2024, 03:41:32 pm »
I don't want to go into detail on this as it's not in a restricted area, but I was diagnosed with ME/CFS in my late twenties, and it was basically stubbornness and spite that I used to get through it. The medical establishment were about as much use as a marshmallow stanchion. Stubborness, spite, and Co-enzyme Q10.

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hellymedic

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Re: Chronic fatigue syndrome
« Reply #12 on: 13 March, 2024, 03:49:24 pm »
Monbiot’s experience seems to echo several...