Spoonseeker blog: Spotlight on GETSET Julie

[AndyPR]

The star of the GETSET guide is ‘Julie’, a (presumably) fictitious patient who valiantly adjusts her activity diary to ‘stabilise’ her schedule so that she is doing a similar amount of activity every day. Julie has already become a favourite with online patients who are impressed with her remarkable level of activity for someone with CFS/ME. She now has her own Twitter account and according to her profile picture wears a Wonder Woman suit.

This is scarcely surprising, as before commencing therapy she was working five days a week, walking to work and back two or three times a week, attending a weekly yoga class, and going out with friends on Thursday and Saturday evenings. In spite of all of which, she sought medical help for CFS/ME.

I suppose we have to assume she is a typical patient of Prof White’s. Why, after all, would he choose to use a diary from an untypical patient? So once again we are left wondering what illness we are dealing with here?

https://spoonseeker.com/2017/07/03/spotlight-on-getset-julie/

 

[A.B.]

I suppose we have to assume she is a typical patient of Prof White’s.

I would like to propose an alternative interpretation: Julie's activities is how the authors imagine the illness. In their view apparently there is nothing really wrong with the patient except irregular sleep patterns and lazy weekends.

 

[tinacarroll27]

Julie is me before the ME not me with ME!! This continues the belief that ME is a trivial illness!!We can go partying twice a week!! Will it never end!

 

[Sean]

So once again we are left wondering what illness we are dealing with here?

Or if we are dealing with any illness at all?

 

[dangermouse]

"How can the treatment be relevant to ME if patients with contraindications to exercise are supposed to be excluded?"

Exactly.

How does that work?

Julie clearly has no contraindications to exercise of any kind. It just doesn't make sense at all.

I don't recognise Julie as any way similar to a PWME, she has energy levels that I could only dream about!

 

[Skycloud]

I'd be interested to know what plans GETSET Julie has for her holidays this year. Trekking in the Himalayas? Cycling across Europe? Volunteering on a school building project in the Democratic Republic of Congo? There again she may not have enough spoons for an overseas holiday, she does have CFS after all. She'll choose something gentler like sea canoeing off Anglesey.

Time for Prof. White to run another quick trial so I know how to manage a week in Whitby

 

[sarah darwins]

...before commencing therapy she was working five days a week, walking to work and back two or three times a week, attending a weekly yoga class, and going out with friends on Thursday and Saturday evenings.

Bloody hell! My target for 'complete cure' is lower than that!!! Julie is officially AWESOME!!!!!!! (or something)

 

[dangermouse]

I'd be interested to know what plans GETSET Julie has for her holidays this year.

Hell, yeah....the world is literally Julie's oyster!

 

[alex3619]

[Satirical] They should have told us they were treating a sick superhero. All we have to do to equal this is clear ... become superheroes ourselves. Where is the superhero serum hiding?

I can do two or three of some of the things on her list per day, provided I pick the things. Like resting. Or watching TV. Shower and breakfast? Ummm, not every day. If I do I am not doing other things. Besides, that is already two things.

 

[dangermouse]

I reckon there's a good chance that Julie (GETSETJULIE) will go down in history. Maybe even getting her own mini series on TV! And a place in MEpedia!

 

[JaimeS]

They should have told us they were treating a sick superhero. All we have to do to equal this is clear ... become superheroes ourselves. Where is the superhero serum hiding?

I thought we did this bit...

Actually, I'm surprised no one picked Wonder Woman...

 

[CFS_for_19_years]

Nevertheless it is quite a feat, this ‘stabilisation’ of Julie’s; you have to wonder how she does it. Has she overturned the laws of mathematics?
Not quite, though the answer is Wonder Woman-like enough. She does it by taking twenty-one hours less sleep a week.

That’s right. You heard it. Twenty-one hours less sleep. That’s the equivalent of three hours less a night. All that neglecting housework was obviously making her dozy. Now she’s stabilised and doing all the extra stuff in an orderly manner, she no longer needs so much sleep.

And how long does this massive change take her: adding in three hours of housework, extra study and reading, extra time for friends, plus cutting out twenty-one hours of sleep etc etc? The guide warns ‘it may take a week or longer’.

Well, Rome wasn’t built in a day, but I suspect Prof White might have wanted it finished by the weekend.

Hey whatever happened to GETSETJoe and his exercise plan?

Will GETSETJoe and GETSETJulie meet up somewhere?

 

[JaimeS]

Does anyone else find that the link to the booklet no longer works properly?

If anyone downloaded it, perhaps attach it here.

 

[Stewart]

Does anyone else find that the link to the booklet no longer works properly?

If anyone downloaded it, perhaps attach it here.

It works fine for me - but if anyone else is having problems, here it is.

 

[Dolphin]

So why do they insist on muddling us all together? Can they just not bear to lose us as their patients? Or could it be that they need us in some other way? Could it be that they need the presence of ME patients to make their theories appear to stand up?

Take deconditioning for instance. If you look at Julie with her five day working week, her walks, her yoga, her nights out twice a week etc, how can it be that she is deconditioned? Surely she does so much that she can’t be… But if she isn’t deconditioned, then how – according to the bps theory – can she be ill?

Maybe the researchers need the presence of some really ill people (who look like they might be deconditioned) to lend their theory some credence, to make it seem like they know what they’re talking about? Because Julie may benefit from the ‘therapy’ but she doesn’t fit the theory any better than we do.

I don't agree with everything Fred Friedberg writes, but I recall papers he wrote where he said the fear avoidance model doesn't fit high functioning people with CFS. Not something people in the UK generally concede.

 

[JaimeS]

I don't agree with everything Fred Friedberg writes, but I recall papers he wrote where he said the fear avoidance model doesn't fit high functioning people with CFS. Not something people in the UK generally concede.

How weird, though. You'd think he'd say it doesn't fit severe patients. As in, they really are too sick to move... whereas mild patients might have fear avoidance that holds them back from activity appreciably because they're afraid of getting worse?

Ehhhhh why do I keep hammering this with logic, when it's clear that logic does not apply?

 

[alex3619]

Ehhhhh why do I keep hammering this with logic, when it's clear that logic does not apply?

Rational people try to make rational sense of things. Its why rationalists do badly with politics in my view. So much of human behaviour makes no strict logical sense. It all probably makes sense in the vast order of the universe, but we are not omniscient.

Psychobabble runs on persuasive argument, not logic and evidence. It is not about making sense but persuading the ill informed.

 

[JaimeS]

Rational people try to make rational sense of things.

And yet, they say the definition of insanity is doing the same thing over and over but expecting different results. And that is just what I am doing. I think I understand their perspective as well as I can just now, so I'll put away the Credible Hulk for awhile and read some more papers.

 

[alex3619]

And yet, they say the definition of insanity is doing the same thing over and over but expecting different results.

What do you expect from a definition of insanity from a physicist? I think this is attributed to Albert Einstein. If that is insanity then the human race is in very deep trouble.

The drive to make sense of things goes much deeper than our veneer of rationality. The more important something is to us, the stronger the motivation to understand, particularly if it does not make sense.

Further I find that in my case my drive to try to understand means I am turning a lot of things, related to anything important, every which way in my thoughts, trying to see how it fits together. Its what I have trained myself to do, and I do not want to change it. So if Einstein is right then I must be insane too.

 

[hellytheelephant]

I would like to nominate myself to be the next poster-girl for the campaign:

GET SET HELLY

She is resting 7 days a week, walking to the toilet several times a day, attending breakfast ( in the front room), when she's up to it, and is going out hardly ever. She has spectacularly failed to

'valiantly adjust her daily activity to ‘stabilise’ her schedule so that she is doing a similar amount of activity every day',

because she's not a robot- she's a human being living in the real rather than virtual world....and she has a serious and debilitating illness so telling her to rejig her diary is about as helpful as telling her 'get out more'.

Her wonder woman outfit is probably at the bottom of the dirty washing basket...so she is wearing baggy pj's - AGAIN!


I will be happy to blog about it and pose for their website when they have cured me...but don't hold your breathe.