GETSET (white) in Lancet 22/06/17

[JaimeS]

does Pole dancing for a bit extra Cash on a Friday evening after her studying

Ah, memories.

 

[Molly98]

Ah, memories.

You mean you had to give it up because of your ME?
Still doing it mate, 3 times a week, (don't tell the DWP though) mind over matter Jamie, you may want to try GET SET your obviously suffering from self limiting beliefs.

 

[TiredSam]

You mean you had to give it up because of your ME?

That's how I read it until I realised it was a link - @JaimeS harking back to her past.

 

[JaimeS]

Dr Yes also had a fascinating thread re: pole dancing.

I love that we have PR-specific tropes and in-jokes, some of them years old...

 

[Barry53]

#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.

Maybe pole dancing could be an option in a get you back to work scheme.

 

[Barry53]

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.

My wife and I sometimes go for a slow (very slow) walk by the river, stopping frequently to take photos. But I drive us the short distance to the river so my wife's energy is only depleted by the enjoyable bit.

 

[Sea]

They wouldn't use that threshold if they thought people could only get up to 60. 60 is a very low score.

But...they did say they didn't expect to achieve as good a result with a self help guide as with "expert" face to face sessions.

 

[slysaint]

But she is allowed to rest for 10 minutes during her working hours

Where? Does she lie down on the office floor? Or is this just a tea-break? Or maybe it's when she goes to the loo?
not exactly rest.

 

[lilpink]

Essentially in comparison to Julie's week a person with authentic neurological ME would have a timetable that: replaced Julie's 'work' with 'rest', and assumed Julie's 'rest' activities' to be 'work'. It's very odd that a bunch a people who insist they understand this disease so clearly have no idea at all what it looks like. Thus we cannot be at all confident that any of the cohorts taking part in any of their studies necessarily have ME.

 

[Luther Blissett]

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.

I like the fact that you are putting more effort into making Julie real than the authors ever did. It's almost like you think that things outside the person can affect them! Too much reality in our thinking, after all Julie can probably clear buildings in a single bound, or maybe even fly.

That bus performance is terrible! I guess it's just a happy accident, but here with the way the cities evolved means that there are usually a few main roads in and out of the city and then secondary ones, so the main bus routes follow the main roads, and the closer you get to the centre the more routes merge together.

More of a problem providing coverage in a grid system, along with the differing views of public transport in different countries.

We'll have to agree though that Julie is tempted by all the poles on the bus, however frequent or not they are. Her dismounts to hit the pavement at walking speed are legendary.

 

[Luther Blissett]

Maybe pole dancing could be an option in a get you back to work scheme.

Sadly @Barry53, your satirical comment was preceded by it actually happening. You cannot out-satire the great IDS, but a valiant effort.

 

[Molly98]

Wow GET SET Julie is really real, has her own Twitter account and everything, you can follow her and get advice on how to cure your ME the GET SET way by following @GetSetJulie on Twitter

 

[CFS_for_19_years]

Hopefully @GetSetJulie on Twitter will be giving us updates throughout the week on her activities (working, catching the bus, going out with friends, ironing, studying). There's also a hashtag #GETSETJULIE.

https://twitter.com/i/web/status/879309228762157056

https://twitter.com/i/web/status/879259244855427073

https://twitter.com/i/web/status/879293060571693056

 

[Large Donner]

I am a big greasy doner and I swing around a pole every Friday and Saturday night with the sweat dripping down me. I bet you all find that dead sexy, I even have to wait around for ages sometimes and get taken home on a Night bus at 3am. Try doing all that with ME!!

 

[Karen Kirke]

http://www.wolfson.qmul.ac.uk/images/pdfs/getset/FAQ How should CFS ME be treated.pdf

They may be referring to the Gladwell et al. paper. The lead author was a physiotherapist and I think spun the results a bit. I had a letter published in reply:

Did someone say patient surveys?


I wondered the same as you, Tom, given that the term “deeper analysis” would suggest something like Gladwell’s qualitative study. However, as far as I can see, Gladwell et al’s study did not find that “exercise was not necessarily delivered by trained GET therapists”; it only suggested that therapists’ training should be improved. Whether the GET-delivering therapist was a trained GET therapist or not was not addressed in Gladwell et al’s study. It would not be reasonable to assume that a therapist was not a trained GET therapist purely on the basis that a patient had a negative or neutral outcome rather than a positive one, so I don’t know that it’s Gladwell they’re referring to.


I wonder if they’re referring to Prof Pheby’s more detailed analysis of the 2010 survey of physical rehabilitation therapies, where it is stated that 37% of GET courses in that study were managed by physiotherapists? However, this would be a stretch, since the full breakdown of who delivered/managed the GET is not provided, nor is whether those who recommended or managed the GET were “trained GET therapists” and so you’d have to guess or assume. Since, to my knowledge, there is no standardised training programme for GET therapists, it would not be appropriate to assume at this point that only physiotherapists can be considered trained GET therapists.


Another hypothetical option is that White and co have had access to unpublished survey data, on which they have done a deeper, but unpublished, analysis themselves.


So we may be back to Action for ME’s 2003 survey. On p. 46 of the GETSET GES therapist manual, it says:


7. ADVERSE EFFECTS OF GRADED EXERCISE THERAPY (GET)

Surveys by patient groups of their members have suggested that GET may be harmful to some people with CFS/ME.32-34 It is now believed this finding is due to inappropriately planned or progressed exercise programmes, possibly undertaken independently or under supervision from a person without appropriate experience.34



32. Action for M.E.. Severely neglected ME in the UK. London: Action for M.E., 2001. http://www.afme.org.uk/res/img/resources/Severely Neglected.pdf

33. Cooper L. Report on survey of members of local ME groups. London: Action for ME and the ME association, 2000. http://www.afme.org.uk/res/img/resources/Group Survey Lesley Cooper.pdf

34. Action for M.E. Membership Survey 'your experiences' questionnaire. Wells: Action for M.E., 2003.

See full document at
http://www.wolfson.qmul.ac.uk/images/pdfs/getset/GETSET therapists manual with appendices.pdf


Why are the more recent and robust surveys published by the ME Association in 2015 and 2010 and AfME in 2014 and 2008 are not referred to in GETSET, a 2017 publication? (Links to those surveys provided at end of post.) It would be unusual in academia to refer preferentially/only to older studies when more recent studies exist, given that older data is generally given less weight than a newer similar study, unless clearly methodologically superior, which it is not.


We know White was aware of both ME Association 2010 and AfME 2008 in 2011 as both are referred to on the first page of the original PACE trial paper, of which he was lead author. We also know White remained aware of both of those surveys as they are referenced on the first page of the 2017 GETSET paper, and he is credited as contributing to drafting the report and to the final report.


The links provided in the GETSET GES therapist manual for reference 32 and 33 don’t work now (but in theory could have been live when GETSET physiotherapists might have looked for them). The 2003 survey that their argument rests on is not available online and is not available from AfME, making it difficult or impossible for people to verify their claim. The 2003 survey can, however, be accessed at this dropbox:
https://www.dropbox.com/s/v8xfl6ng8zmbem9/AfME%20members%20survey .pdf?dl=0


My commentary in the Journal of Health Psychology published in May explained why the data in AfME’s 2003 survey do not support the argument Clark and White try to make, indeed, the data seem to directly contradict their argument:


“PACE-author White has previously argued that reported exacerbation of symptoms from GET in patient surveys is a ‘mistaken criticism’ (Clark and White, 2008), occurring not due to GET itself but due to improper implementation of GET (Clark and White, 2008, 2010), based on an interpretation of data from an Action for ME (2003) survey. In that survey, of 54 patients who did GET, 26 (48%) reported negative outcomes (Action for ME, 2003: 12). Clark and White (2008) argued that ‘in many cases, exercise was being undertaken independently, without the supervision of a therapist trained to deliver GET to patients with CFS [Action for ME, 2003]. In other words, it was not GET’. The reader might interpret this to mean that those who did exercise independently reported negative outcomes, however, the data do not show this. For example, only 1 of 12 patients who did GET with ‘no professional’ reported a negative outcome, compared to 12 of 18 patients who did GET with the supervision of a physiotherapist (Action for ME, 2003: 12).”


From: Kirke (2017) PACE investigators’ response is misleading regarding patient survey results Journal of Health Psychology http://journals.sagepub.com/doi/10.1177/1359105317703787


Here are the links to the more recent surveys that the GETSET GES Therapist Manual could have referred to:


The ME Association (2015) ME/CFS illness management survey results: ‘No decisions about me without me’. Part 1: Results and in-depth analysis of the 2012 ME association patient survey examining the acceptability, efficacy and safety of cognitive behavioural therapy, graded exercise therapy and pacing, as interventions used as management strategies for ME/CFS. Available at: http://www.meassociation.org.uk/wp-...No-decisions-about-me-without-me-30.05.15.pdf


The ME Association (2010) Managing my M.E.: What people with ME/CFS and their carers want from the UK’s health and social services: The results of the ME Association’s major survey of illness management requirements. Available at: http://www.meassociation.org.uk/wp-content/uploads/2010/09/2010-survey-report-lo-res10.pdf


Action for ME (2014) M.E. Time to Deliver: Initial Findings of Action for ME’s 2014 Survey. Bristol: Action for ME. Available at: https://www.actionforme.org.uk/uploads/pdfs/me-time-to-deliver-survey-report.pdf


Action for ME and Association of Young People with ME (2008) M.E. 2008: What progress? Initial findings of a national survey of over 2,760 people with M.E. focusing on their health and welfare. Available at: http://ssb4mesupport.weebly.com/uploads/8/0/5/0/8050248/action_for_me_survey_2008.pdf


And here’s the AfME 2003 one again:

Action for ME (2003) Members’ Survey: Your Views and Your Experiences. Wells: Action for ME. Available at: https://www.dropbox.com/s/v8xfl6ng8zmbem9/AfME%20members%20survey .pdf?dl=0

 

[CFS_for_19_years]

Cort Johnson has written an article:
On Your Marks GETSET: Don’t Go – Major Graded Exercise ME/CFS Trial Underwhelms (Again)
https://www.healthrising.org/blog/2...cise-get-chronic-fatigue-syndrome-underwhelms

The Lancet — one of the most highly regarded journals in the world — is back on the chronic fatigue syndrome (ME/CFS) community’s front page. That’s probably enough to either elicit curses from ME/CFS patients or to produce a strong desire to hide under one’s bed. Lancet’s ME/CFS offerings of late have been dominated by the PACE CBT trials and their controversies. Lancet’s refusal to retract that study is bad enough; it’s unwillingness to allow skeptics to publish a letter stating their concerns (after Lancet asked the PACE authors whether they should) was just plain weird. It’s editor, Richard Horton, can hardly control himself when talking about the ME/CFS community.

Now Lancet is back with guess what? Another behavioral chronic fatigue syndrome trial. To make sure EVERYONE can read it, they put it in their free article section. Lancet has occasionally allowed dissenters to publish letters but there’s no doubt as to the journals pro-behavioral orientation to this disease. What’s more doubtful is whether the studies they’re publishing are helping their case.

Continue reading here: https://www.healthrising.org/blog/2...ise-get-chronic-fatigue-syndrome-underwhelms/

 

[Dolphin]

But...they did say they didn't expect to achieve as good a result with a self help guide as with "expert" face to face sessions.

If they want to concede that GES can only get people up to a score of 60, that would be very interesting.

However they have not said anything like that as far as I can see.

I would read the comment you summarise as suggesting the magnitude of the improvement with GETSET would be smaller, not for this scenario where the improvement appears to have been restricted to lower functioning people.

 

[Large Donner]

Once they have trained the GET specialists in pacing whereby the therapist actually listens to the patient who is the only one using their own body then they can claim there is such a thing as a GET expert, except they will have to call it pacing instead of GET, fire the therapist and declare the patient the expert and admit that it is impossible to claim there is such a thing as an outside expert in someone else's body when that person has a neurological disease and has to apply the best possible ongoing exertion levels for themselves
...see the problem here?

 

[Tom Kindlon]

Just a reminder that people can submit letters for publication. You don't need to have any specific qualifications to do this (I have had I think 18 letters published in journals but have no degree).

I'm not sure I will submit one myself on this occasion but should be happy to help if somebody does a draft and/or I may be able to pass it on to others who might be able to help.

The Lancet published 8 letters (including one by me) in reply to the PACE trial 2011 and 2 letters (including one by me) in reply to the FITNET trial in 2012. The Lancet Psychiatry journal also published some letters in reply to a PACE Trial paper.

Correspondence
• We welcome correspondence on content published in The Lancet or on other topics of interest to our readers

• Letters for publication in the print journal must reach us within 2 weeks of publication of the original item and should be no longer than 250 words

• Letters of general interest, unlinked to items published in the journal, can be up to 400 words long

• Correspondence letters are not usually peer reviewed (we rarely publish original research or Case Reports in this section), but the journal might invite replies from the authors of the original publication, or pass on letters to these authors

• Only one table or figure is permitted, and there should be no more than five references and five authors

• All accepted letters are edited, and proofs will be sent out to authors before publication

• Some letters might be chosen for online-only publication

http://www.thelancet.com/pb/assets/raw/Lancet/authors/tl-information-for-authors-may-2017.pdf

I have now done a draft letter. It only covers one very specific point so hopefully others will write so that more points are covered.

 

[Maya24]

@Tom Kindlon thanks for all the work you do in creating awareness