GETSET (white) in Lancet 22/06/17

[slysaint]

"
After your stretching regime
has been established, which
will usually take about a week,
you can add a physical activity
or exercise to your daily routine
(which should now be stable).
This exercise or activity is in
addition to your current daily
activities as the aim is to
strengthen your body."

A WEEK!!?

"
Your muscles can feel heavy
after exercise, and you may
feel physically tired. With CFS/
ME these feelings of physical
tiredness can be more intense,
but they will also help you sleep."

Oh no they don't.

"
In the unlikely event that you
experience breathing diffi culties
such as wheezing; chest pains;
or you collapse/faint during
exercise, you should
seek
medical help immediately."

Righty ho

 

[Jenny TipsforME]

From the layout I thought you'd written a poem about it @slysaint but it's an entirely different style of fictional writing!

 

[me/cfs 27931]

Regarding "Julie".

Thinking back to my periods of remission, one thing that strikes me as odd is Julie's ability to study on a Friday night.

By the end of the work week, my brain fog, memory, vision and headaches would be so bad that attempting to study was pointless (I attempted it).

 

[Valentijn]

With CFS/
ME these feelings of physical
tiredness can be more intense,
but they will also help you sleep.

Physical tiredness helps healthy people sleep. People with ME/CFS end up with tachycardia that persists even when lying down after excessive activity, and sleep is pretty much impossible when your heart rate won't go under 95 beats per minute.

 

[Countrygirl]

Physical tiredness helps healthy people sleep. People with ME/CFS end up with tachycardia that persists even when lying down after excessive activity, and sleep is pretty much impossible when your heart rate won't go under 95 beats per minute.

Absolutely right!

The more I do, the worse the insomnia.

The nutjobs who devised GETSET clearly haven't the first clue about this disease.

 

[TiredSam]

In the unlikely event that you
experience breathing diffi culties
such as wheezing; chest pains;
or you collapse/faint during
exercise, you should
seek
medical help immediately."

What medical help are you going to get if you collapse or faint? The person running the GET session will have been programmed to tell you to ignore any symptoms and push through. If you're a teenager you'll be diagnosed with Pervasive Refusal Syndrome, removed from your family and bullied into more physical activity.

It was seeking medical help that got you into this mess. Most M.E. sufferers learn to stay the f. away from "medical help" for the protection of their own health.

 

[Molly98]

Physical tiredness helps healthy people sleep. People with ME/CFS end up with tachycardia that persists even when lying down after excessive activity, and sleep is pretty much impossible when your heart rate won't go under 95 beats per minute.

Just shows their absolute cluelessness regarding ME and PEM, you don't feel more tired you feel ill.

I can guarantee 100% that if I exercise or over exert myself and get PEM my sleep is absolutely awful the next couple of nights. I can't get to sleep, when I do I have lucid and vivid dreams and nightmares like when you have the flu or other viral infection, I wake many times in the night and will be unable to get back to sleep and am awake from 2or 3am.

They just refuse to listen to us because if they did it would shatter their delusional theory upon which they have built their world around.

 

[JaimeS]

Nice to see that Julie goes out after work on a Thursday night for 3 hours. Hang on - after what?? I wonder what her Friday looks like after that.
You have to be absolutely shitting me.

...I can go out now, sometimes, even for purposes of fun. I went to a party last night!

BUT in preparation, I spent most of that day in bed.

Julie's week doesn't look like a substantial reduction to me.

Before Julie contracted ME, she was a daredevil skydiver line-dancer linebacker for a living, doing stunts for an energy drink company. On weekends she ran triathlons. Now she only has this full-time job and full social life.

It just seems to me more unintentionally funny the more I look at it.

This post made me laugh aloud over and over again. Thanks for that, @Luther Blissett .

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

As someone in the 'very, very minor' 'have learned to pace as well as humanly possible' 'have learned a variety of OTC meds that help me' category, I may just try it. Multiple people have said I am the most well person with ME that they know. Let's see what that looks like...

 

[Barry53]

...I can go out now, sometimes, even for purposes of fun. I went to a party last night!

BUT in preparation, I spent most of that day in bed.



Before Julie contracted ME, she was a daredevil skydiver line-dancer linebacker for a living, doing stunts for an energy drink company. On weekends she ran triathlons. Now she only has this full-time job and full social life.



This post made me laugh aloud over and over again. Thanks for that, @Luther Blissett .



As someone in the 'very, very minor' 'have learned to pace as well as humanly possible' 'have learned a variety of OTC meds that help me' category, I may just try it. Multiple people have said I am the most well person with ME that they know. Let's see what that looks like...

A set of several for varying levels of ME might prove to be a useful reference along the way sometime.

 

[BurnA]

Their patient example calls into question even their assertion that some of their patients have cognitive fatigue instead of physical fatigue.

There are so many problems with this it's hard to list them all.

As someone in the 'very, very minor' 'have learned to pace as well as humanly possible' 'have learned a variety of OTC meds that help me' category, I may just try it. Multiple people have said I am the most well person with ME that they know. Let's see what that looks like...

I am mild also but Julie is still far more active that I am.

Who with ME would choose to walk to work when an alternative is available. That is asking for trouble early in the day, anyone with ME knows expending too much energy, that's it, so why choose to waste energy first thing in the morning ?

Meeting friends is a big deal for anyone with ME, exercising at all is likely to result in PEM, so its hard to understand walking with friends.

I am also mild so I shower, work everyday, but every evening as soon as I am in the door from work I lie down, I don't watch TV, I don't read despite having piles of books I'd like to, I don't cook.
Shopping is major no, I go out to eat twice a year for birthdays, it's hell.
I haven't socialized since getting ill, I avoid any situation where I might have to meet people and make conversation, or where there is noise in general.
Forget about ironing and housework.

The thing is they don't list any symptoms at all so the presumption is Julie does all this symptom free. I have headaches several days a week, I yawn continuously from noon on, any overdoing it results in flu like symptoms, I have a spaced out feeling some of the time and struggle to concentrate.

And I realise I am a very functioning person compared to most with ME.

 

[JaimeS]

Who with ME would choose to walk to work when an alternative is available.

This one really pinged me as well. I am healthy in comparison to so many, but the idea of choosing to walk somewhere when I could ride there... people have no idea of the consequences of exercise for a patient if they think this is even a possibility.

 

[Luther Blissett]

I am also mild so I shower, work everyday, but every evening as soon as I am in the door from work I lie down, I don't watch TV, I don't read despite having piles of books I'd like to, I don't cook.
Shopping is major no, I go out to eat twice a year for birthdays, it's hell.
I haven't socialized since getting ill, I avoid any situation where I might have to meet people and make conversation, or where there is noise in general.
Forget about ironing and housework.

The thing is they don't list any symptoms at all so the presumption is Julie does all this symptom free. I have headaches several days a week, I yawn continuously from noon on, any overdoing it results in flu like symptoms, I have a spaced out feeling some of the time and struggle to concentrate.

It's not funny really, but the idea of the every(wo)man Julie that they have produced is a cartoon. A punctual Mr(s) Magoo with terminator like determination, unaffected by her environment, never mind her illness.

When I was mild at first, I had an Occupational Therapist and we produced an activity chart. It was obviously a template, and after three weeks we gave up because apart from the obvious PEM, it was just a mess.

We couldn't even work out what counted as a day. Should we count the 9pm to 7am bit as a day? if so, what about the 2 pm to 10 pm bit? that would mean two 'days' in one and nothing for the day before.

You count yourself as mild, but as you intimate, how you feel on the day affects so much! When you are well enough to feel you can do something it gets done, and if you don't feel well enough, you don't do it. Everything is still a constant juggling act and we just try to muddle through.

The timetable reminds me of doing homework in 10 minutes that should have taken an hour plus. It reminds nobody of anyone they have ever known. The lack of imagination that went into it is staggering.

The average speed for a bus in London (The place (in the UK) most likely to have traffic congestion in my assumption) is 9.4 - 9.8 mph (Source: Transport for London 2017)

Humans walk at approximately 3 mph. So, Julie is either averaging 5 mph walking speed (national standard competitive walking speed, international is 6mph), the bus goes in strange direction to get near her workplace, she has massive shortcuts on her walk, or she is catching the wrong bus and nobody has told her, or she hasn't worked it out. (And she was missing from the PACE trial 6 minute walking test)

 

[me/cfs 27931]

The average speed for a bus in London (The place (in the UK) most likely to have traffic congestion in my assumption) is 9.4 - 9.8 mph (Source: Transport for London 2017)

Humans walk at approximately 3 mph. So, Julie is either averaging 5 mph walking speed (national standard competitive walking speed, international is 6mph), the bus goes in strange direction to get near her workplace, she has massive shortcuts on her walk, or she is catching the wrong bus and nobody has told her, or she hasn't worked it out. (And she was missing from the PACE trial 6 minute walking test)

Playing devil's advocate, because I've been in similar situations.

You're forgetting the wait time for a bus. Plus if she has to transfer, that's additional wait time.

And as you note, some bus lines are slower than others. There isn't always an alternate route, particularly if you aren't downtown.

One more item: bus unpredictability. Some employers will not tolerate tardiness to work, particularly on meeting days. It's very easy to predict to within couple minutes your arrival time when walking, whereas buses are much less reliable, particularly if you have to transfer. Perhaps the days Julie walked to work were days when she had to be there on time or risk getting fired. This was the case for me with a job I had.

 

[BurnA]

Perhaps the days Julie walked to work were days when she had to be there on time or risk getting fired.

But she is allowed to rest for 10 minutes during her working hours so at least her boss does seem somewhat accommodating.

 

[Luther Blissett]

And as you note, some bus lines are slower than others. There isn't always an alternate route, particularly if you aren't downtown.

One more item: bus unpredictability. Some employers will not tolerate tardiness to work, particularly on meeting days. It's very easy to predict to within couple minutes your arrival time when walking, whereas buses are much less reliable, particularly if you have to transfer. Perhaps the days Julie walked to work were days when she had to be there on time or risk getting fired. This was the case for me with a job I had.

I'm assuming that Julie is in England, and after looking for my local services, there is from 7am to 2pm a bus service every 12 minutes, and another every 20, for a 20 minute commute. I used to use the bus to commute regularly too, and you just have to know that the bus is never too early, sometimes later. But she's traveling at peak times and for the bus companies to make any money they have to be fairly reliable and frequent at exactly those times. I live in one of the cities with the poorest public transport infrastructure in the country. As the people who made up Julie are based in London, I would bet there is at least similar services available

 

[anni66]

So there we have it, thats the current evidence NICE will use to determine that there does not need to be a review of the current treatments because the latest evidence backs up the previous evidence. Job done and perfectly timed publication for the BPS crowd just before the NICE review proposal.

This just sounds like pacing dressed up and presented as GET because they tell you at the beginning of the trial to reduce all activity down way below your current amount then build up gradually. Then at the end of the 12 weeks they say "hey you are doing so much more than 12 weeks ago would you like to agree with me cos I've been so nice to you and concerning over the last 12 weeks, just sign here to rate the course and the facilitator from 1-10.

All they seem to have achieved is to get people back to baseline after first reducing their activity down at the start of the trial. No doubt they don't take into account how many of the activities of daily living where reduced during the trial to accommodate any extra exercise.

I think the timing is also a pre emptive move against the radio 4 documentary on children with cfs/ me , parents threatened with child protection measures and refusing to comply with treatment guidelines ( CBT and GET) which will depict " experts" in a poor light. Goes out on tuesday night out

 

[me/cfs 27931]

I'm assuming that Julie is in England, and after looking for my local services, there is from 7am to 2pm a bus service every 12 minutes, and another every 20, for a 20 minute commute. I used to use the bus to commute regularly too, and you just have to know that the bus is never too early, sometimes later. But she's traveling at peak times and for the bus companies to make any money they have to be fairly reliable and frequent at exactly those times. I live in one of the cities with the poorest public transport infrastructure in the country. As the people who made up Julie are based in London, I would bet there is at least similar services available

I'm not an expert on the bus services in London. Where I live in the US (a major city), the buses have an on-time performance around 60% and an average speed of 8mph.

Edit: In a previous job, I was literally required to walk a mile to work two days a week, or risk getting fired if the bus ran late.

Edit: On days Julie walked to work, she took the bus home. Which at first I thought might indicate she walked to work out of job necessity then took the bus home when timeliness wasn't so critical. However, I just noticed that one day a week, she took the bus to work, then walked home, which rather invalidates my theory.

 

[Stukindawski]

If I spend 10 minutes in the garden cutting the weeds that are overgrowing into my poor neighbour's property, the muscles in my arms go weak and I experience temporary paralysis. I cannot pour a drink or raise my arms properly for an extended period and I lose the ability to string proper sentences together as my cognitive ability dives by about 80%.

Four days later my arms still feel as if they have been bruised up and down.

Should I seek medical attention or you know, just wait a month and GETSET to go through the whole soul destroying endeavour again.

 

[Snow Leopard]

That GET guide booklet also perpetuates a number of non-evidence based myths, specifically the "boom bust" myth - no study that has measured activity objectively has shown that there are "boom bust" activity patterns, and there is no evidence that it is a perpetuating factor. Likewise, although patients are deconditioned due to sedentary behaviours, the level of deconditioning cannot explain the symptoms at all - patients have similar levels of fitness as sedentary controls with no symptoms.

Aside from that, I'm sure everyone on this forum agrees that none of the activity patterns that "Julie" has are reflective of someone with CFS or ME!

 

[Molly98]

#GETSETJULIE also has six kids, cares for her elderly mother who has dementia, is chair of the PTA at her kids school, is a sergeant in the Territorial army, a retained firefighter at her local fire station , is in training for the London marathon and does Pole dancing for a bit extra Cash on a Friday evening after her studying but didn't want to tell her therapist about it because she finds it a bit embarrassing.

Oh and I almost forgot, she is an avid gardener winning 2nd prize in the best and biggest marrow competition in her local fate, 2nd only to the great Jeremy Corbyn. They ended up becoming great friends as a result and he took her and the kids to Glastonbury this year to watch him speak, she's a bit pooped being on her feet for days walking miles around the site and standing in ques for the toilets not to mention being right down the front of the crowd for radio head (nearly blew her eardrums) and Ed Sheeran, but nothing she can't handle now she's done GET SET.