GETSET (white) in Lancet 22/06/17

[Jenny TipsforME]

It is eye opening about what they think life with ME is like

They need to do something like that TV programme when the doctor stays in your house for a couple of days to see what your life is like. I can sort of see how the misunderstandings occur but they're not hearing what we mean when we describe our lives.

Someone who has depression just commented to me that these diaries look like someone struggling to manage mild depression. I've lived with several people who've had depression and I'd say that was spot on. Severe depression is obviously a different kettle of fish, would be as limited as us but in a different way.

There's also something about it which reminds me of a Protestant Work Ethic ethos. Also a bit like when politically conservative people say "poor people don't know about fridge management!" Poor people are precisely the people who know about fridge management. If you're watching every £ you don't let food go off. Similarly if you want to know how to manage limited energy ask someone with ME...

 

[Barry53]

Well to be honest it's one of the few things I can still do every day. That and 3 hours of browsing stuff I can't comprehend before being couchbound the rest of the day. It does take something out of me though, showering. Doesn't same they have a very good handle on exactly what m.e. is.

I think it just brings home how you could have 1000 people with genuine ME and every single one of them would be different.

 

[Luther Blissett]

It is eye opening about what they think life with ME is like

They need to do something like that TV programme when the doctor stays in your house for a couple of days to see what your life is like. I can sort of see how the misunderstandings occur but they're not hearing what we mean when we describe our lives.

There's also something about it which reminds me of a Protestant Work Ethic ethos. Also a bit like when politically conservative people say "poor people don't know about fridge management!" Poor people are precisely the people who know about fridge management. If you're watching every £ you don't let food go off. Similarly if you want to know how to manage limited energy ask someone with ME...

Well said @Jenny TipsforME , to expand your point further:

The reason that the rich were so rich, Vimes reasoned, was because they managed to spend less money.

Take boots, for example. He earned thirty-eight dollars a month plus allowances. A really good pair of leather boots cost fifty dollars. But an affordable pair of boots, which were sort of OK for a season or two and then leaked like hell when the cardboard gave out, cost about ten dollars. Those were the kind of boots Vimes always bought, and wore until the soles were so thin that he could tell where he was in Ankh-Morpork on a foggy night by the feel of the cobbles.

But the thing was that good boots lasted for years and years. A man who could afford fifty dollars had a pair of boots that'd still be keeping his feet dry in ten years' time, while the poor man who could only afford cheap boots would have spent a hundred dollars on boots in the same time and would still have wet feet.

This was the Captain Samuel Vimes 'Boots' theory of socioeconomic unfairness.”

― Terry Pratchett, Men at Arms: The Play

 

[Jenny TipsforME]

and every single one of them would be different.

This is true to some extent, but it isn't true to say that Julie is typical of someone with ME. She is highly unusual, if she does have ME. Also, the time when activity management advice is useful is early on (otherwise like teaching your grandmother to suck eggs type thing). But I think Julie is way too high functioning to have recently got a ME/CFS diagnosis. She could conceivably be like this at almost-remission stage but if she's got that well she probably has pretty good activity management strategies and doesn't need to be patronised about her 'lazy weekends'.

[BTW I wouldn't talk about Julie like this if she was real. I try to take people's ME diagnosis at face value because who knows which of us are in/correctly diagnosed]

 

[TiredSam]

Well to be honest it's one of the few things I can still do every day. That and 3 hours of browsing stuff I can't comprehend before being couchbound the rest of the day. It does take something out of me though, showering. Doesn't same they have a very good handle on exactly what m.e. is.

I shower every day too, but then I'm a mild case. It's a fairly tiring activity (I was surprised to see how much it affected my heart rate when I wore my monitor in the shower), so I usually leave it until a while after getting up and have a bit of a sit down afterwards.

 

[Valentijn]

An hour of phone calls to friends also as strenuous as resting.

If showering, socializing, and reading are basically the same as rest for her, she doesn't seem to have physical or cognitive fatigue, much less PEM. Their patient example calls into question even their assertion that some of their patients have cognitive fatigue instead of physical fatigue.

 

[Molly98]

Someone who has depression just commented to me that these diaries look like someone struggling to manage mild depression. I've lived with several people who've had depression and I'd say that was spot on. Severe depression is obviously a different kettle of fish, would be as limited as us but in a different way.

These were my thoughts too when looking at the boom and bust diary, which did not look like boom and bust, where was the bust as in bedridden or housebound unable to function at all from PEM because you pushed yourself the day before.

To me there does not look like much change at all in activity levels Julie seems very active In both, just sleeps more in boom and bust one and organizes time better in stabilized one.
If she had ME and was over doing it, ie. Boom on one day she would be unable to do anything on consecutive days, does not show pattern of PEM at all

 

[Jenny TipsforME]

No it doesn't show PEM timescale. Though to be fair when I was fairly high functioning I did work in the week and rest in bed Saturday. But at the level I did that, which wasn't my best almost-remission level, it wasn't a choice (or the choice was not work or rest on Saturday). In fact a week I didn't do that, and was busy a bit like our Julie, a mild tonsillitis resulted in a massive bedbound relapse and I haven't got back to that level 5 years on!

 

[Barry53]

This is true to some extent, but it isn't true to say that Julie is typical of someone with ME. She is highly unusual, if she does have ME. Also, the time when activity management advice is useful is early on (otherwise like teaching your grandmother to suck eggs type thing). But I think Julie is way too high functioning to have recently got a ME/CFS diagnosis. She could conceivably be like this at almost-remission stage but if she's got that well she probably has pretty good activity management strategies and doesn't need to be patronised about her 'lazy weekends'.

[BTW I wouldn't talk about Julie like this if she was real. I try to take people's ME diagnosis at face value because who knows which of us are in/correctly diagnosed]

Yes, I wasn't really including this Julie.

 

[Molly98]

No it doesn't show PEM timescale. Though to be fair when I was fairly high functioning I did work in the week and rest in bed Saturday. But at the level I did that, which wasn't my best almost-remission level, it wasn't a choice (or the choice was not work or rest on Saturday). In fact a week I didn't do that, and was busy a bit like our Julie, a mild tonsillitis resulted in a massive bedbound relapse and I haven't got back to that level 5 years on!

It could be that of a patient in remission, but then why does someone in remission need treatment, you naturally increase activity in remission, because you want to, its the best thing ever to find you can do things again. But this is not representative of people with ME. We don't need help when if we are better.
Well I wouldn't want help from these funk wits anyway, they do more harm, than helping.

 

[Barry53]

If showering, socializing, and reading are basically the same as rest for her, she doesn't seem to have physical or cognitive fatigue, much less PEM. Their patient example calls into question even their assertion that some of their patients have cognitive fatigue instead of physical fatigue.

Quite so. Mental effort definitely does my wife in.

 

[Dolphin]

The GES self-help guide itself is very instructive as to the type of patients envisioned by the clinicians/researchers http://www.wolfson.qmul.ac.uk/images/pdfs/getset/GET guide booklet version 1 22062010.pdf (This is the booklet given to the patients who took part in the GES arm of the trial.)

Here’s what “Julie” (see p.11 of booklet) can do in a week (after she’s stabilised her boom-bust pattern, before she starts exercising):


Works 10am-6pm Mon –Fri

Walks for 20 mins 4 days a week, a yoga class once a week, a walk with friends once a week, and shopping once a week

Goes out after work on a Thursday night for 3 hours

Goes out on a Saturday night for 2 hours

Does housework and ironing in 3x 1 hour slots at the weekend

Studies for just shy of 4 hours spread out over the week


Lucky Julie is allowed to lie in till 8am at the weekend, and after her shower and breakfast she’s rewarded with an hour of housework on Saturday and nearly two hours of study on Sunday.


On Friday evening, after her full working week and having been out the night before, Julie is allowed to cook/eat for an hour and then, I kid you not, she studies for an hour. On Friday evening.


We learn less about "Joe" (see p.20-21 of booklet), but his goal is to build up to being able to walk for 30mins so that he can go to the High Street and return with two small bags. He then “has had a busy time recently, with family staying and a few late nights, which has caused an increase in his symptoms that could be classed as a CFS/ME related setback”. His setback can’t be too worrying, since options in his setback plan include to continue his current level of exercise “even though this will feel more difficult” or knock 3 mins off his walking time.


I find it concerning that clinicians might consider this level of activity feasible for most patients, when I think this is far from being the case.


I’m also concerned that the intervention seems to be envisioned for high-functioning patients with boom and bust patterns, but is being recommended for all. Clinically very problematic. It would explain why even in this trial, whose sample could not be considered representative of the ME/CFS population, 85% of patients in this study saw minimal change in their "CFS" after GES, and only 14% reported a positive change in their "CFS", just 8% more than the "control" group (table 6).


Julie's scheduled to be shopping right now. I wonder will she bump into Joe and his two bags on the High Street?

 

[Luther Blissett]

You have to be absolutely shitting me.

Our Julie does not use the bathroom at all ?!, along with working 10-5 five days a week, and no time at all being vexatious, using the internet, cleaning or washing clothes or dishes, is always changing activities on the hour and has a bizarre fascination with 8am TV on a Friday (what am I missing?).

I vote for Robot Julie Andrews with a cleaner.

 

[lilpink]

I wish I had what ever disease Julie supposedly has!

Ditto...even my best remissions looked nothing like that!

 

[Barry53]

Might be an interesting exercise to do a few similar charts for how it really is for ME.

 

[Barry53]

Our Julie does not use the bathroom at all ?!

Obviously a symptom we have all been missing all this time. Dear Julie seems to be full of shit.

 

[Sean]

and no time at all being vexatious,

 

[Luther Blissett]

Obviously a symptom we have all been missing all this time. Dear Julie seems to be full of shit.

It just seems to me more unintentionally funny the more I look at it. I missed that housework and ironing on the Sunday, which makes me wonder what she is ironing.

She claims to walk at half the speed of a bus or taxi !?

Who with ME ever goes shopping on a Saturday and then again on a Monday?

What happens if something important happens at 4:55pm ? The Boss wants to see her but as soon as 5pm hits, she's off! Take that boss, no unpaid overtime for our Julie, she's on a work to rule! I wonder what she is protesting? Full hours lunch! No home visits from family.

What does she do in the missing 50 minutes after the bus to work? Power down and plug into the mains?

It's like no timetable that has ever been produced.

If you don't fill in your weekly worksheet at work every day, every fool knows that you sprinkle in a few variations in timing (a twenty minutes past, a quarter to, etc) to make it look a little less made up.

If you showed this timetable to another group of psychiatrists, I wonder what they would make of it.

If you told them it was someone with ME they would be jumping all over the non family bit, the starting everything at the hour, on the hour, the lack of visits or visiting.

You'd be marked down as an uptight anal retentive, childhood trauma, OCD , clock obsessed, speedwalking cultist personality faster than Julie can leave the office.

 

[Countrygirl]

Our Julie does not use the bathroom at all ?!,

So no polyuria then either! Lucky girl! In fact, just which ME symptoms did she have? And who on earth diagnosed her?

Whatever she had, she most certainly didn't have ME.

As @TiredSam says:

You have to be absolutely shitting me.

 

[Jenny TipsforME]

Yes I'm not sure this is a psychologically healthy lifestyle for our Julie. It's very regimented and pushy. When she has her inevitable relapse (depression or ME) she will be made to feel guilty for being an over achiever type putting too much pressure on herself