GETSET letters in The Lancet

If it's PACE cheese it will be full of holes .

 

And stink.

 

Reading this response from the authors, I misread "teletherapy" as "telepathy". Knowing who the authors were, it only caused me to half raise one eyebrow.

 

I have a similar problem whenever I read the word 'the rapist'............did it again

 

Probably a typo.

 

Thats no good, i choose to believe its Brie, Feta, Havarti, Mozzarella, Ricotta and Colby
Hence mining is the only important national concern and should begin immediately

 

In their response to the points I raised about severe and very severe ME, Clark and colleagues suggest that the "use of teletherapy for patients too unwell to attend clinic is an innovative approach that merits further research.6, 7"

6 is Clauw's commentary which accompanied the original GETSET publication. 7 is the FITNET trial.


People with severe ME have voiced their opinions on both teletherapy and graded exercise.


298 respondents to Action for ME’s 2014 survey identified as severe. “Action for M.E.’s survey asked people with severe M.E. what would make a real different [sic] to their healthcare:

• 68% said a better informed GP

• 66% said more effective medication

• 63% said home visits

• 53% said joined-up health and social care

• 36% said having more of a say in their treatment

• 21% said telehealth”



See p.11 of https://www.actionforme.org.uk/uploads/pdfs/my-life-stopped-severe-ME-report.pdf


which quotes from p.27 of https://www.actionforme.org.uk/uploads/pdfs/me-time-to-deliver-survey-report.pdf


In 2004 the 25% ME Group (who represent those who are bedbound, housebound and use wheelchairs) surveyed a randomly selected 437 of their members. Their report summarises the findings of that survey regarding graded exercise as follows:


“By far the most unhelpful form of treatment was considered to be Graded Exercise Therapy (GET). [Bold in original.] This is a finding that may surprise some readers, given the current medical popularity of this approach. However, these patients’ perceptions are supported by data from previous experience: of the 39% of our members who had actually used Graded Exercise Therapy, a shocking 82% reported that their condition was made worse by this treatment. On the basis of our members’ experiences we question whether GET is an appropriate approach for patients with ME. It is worth noting that some patients were not severely affected before trying GET. [Bold in original.] Thus, it is not only people with severe ME who may be adversely affected by this form of treatment.”

The full report can be downloaded here (it’s the March 2005 Severe ME Analysis Report): http://www.25megroup.org/info_group_publications.html

 

Sorry if this has been asked already, but did MEA submit their response to GETSET to The Lancet, or did they just not bother because of the conflict between the tiny word limit and Brandolini's Law?

 

That was a genuine question, by the way... (albeit a slightly barbed one!).

 

Best to tag @Russell Fleming in that case.

Edit: X-posted with @Trish .

 

I've asked on their FB page as well.

[Update: No - they didn't submit anything]

 

• March 31, 2018
• The Lancet 391, 10126 (2018)

• Author: Robert H Saunders

I was surprised to read that the GETSET trial by Lucy Clark and colleagues1 excluded participants who had physical contraindications to exercise, as such a criterion would appear to exclude anyone suffering from post-exertional malaise (PEM). In its 2015 report,2 the US Institute of Medicine concluded: “There is sufficient evidence that PEM is a primary feature that helps distinguish ME/CFS [myalgic encephalomyelitis/chronic fatigue syndrome] from other conditions”. Indeed, post-exertional neuroimmune exhaustion is a compulsory requirement for a diagnosis of myalgic encephalomyelitis under the International Consensus Criteria.

From https://www.doctorportal.com.au/cor...elp-for-chronic-fatigue-syndrome-in-getset-3/

 

They didn't include how much physical activity the participants undertook in the past week as requested by Anna Wood.

https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(18)30619-6/fulltext

 

It is disappointing that there are again making this point without sharing information about the other subgroup i.e. with the higher baseline scores.

I tried to deal with this in my (unpublished) letter.
(Copied from an earlier message)
I decided to focus on a specific point that I did not see others raising in discussions. Most of my other letters use more references:

---

The journal did take a long time to reply (over 6 months): I am left wondering whether they asked the investigators for their opinion. I could imagine the researchers might try to put the journal off the letter.


Anyway I've posted it on PubMed Commons: https://www.ncbi.nlm.nih.gov/pubmed/28648402#cm28648402_78211
It is now on PubPeer
https://pubpeer.com/publications/C6228BA4BCA3E4859CDF9F8CF00663
There's a reasonable possibility those in the group with an initial score of 45+ on the SF-36 physical functioning subscale actually decreased on average.

 

I have not read the paper, and do not know if it is at all relevant, but is there a NNT figure ( as in the quoted 7 for PACE) ?

 

Letters are all excellent- many thanks . I am working up to this degree if lucidity ( hopefully)

 

MINE, MINE .... ALL MINE!!!

 

I'm trying to get my head round why this makes a difference. Surely the difference in the increases between the subgroups is an indication of regression to the mean, in addition to any ceiling effect?

I guess I'm not clear what they are trying to say and why this is a problem. This is from the main paper:

A general point about correspondence - if there are lots of letters on an issue, the journal will not generally publish all those that deal with the same point, and will probably ask the authors of the original paper which ones they want to address. There won't necessarily be the in-house expertise to know which letters are most important, so it is likely that the authors will be given this task.

 

Regression to the mean is an interesting possibility.

I'm not 100% sure what you're saying: they are saying that because the higher group didn't do as well, that's likely because they were already near the maximum (ceiling effects). There could be situations where this arises.

However, based on the figures here we have enough information to know that the patients in the higher functioning group only approved by a maximum of 2.7 points and may actually have decreased. A final score of around 55 is not near a maximum score unless one is accepting that graded exercise therapy can only bring people up to a very low level which the authors have never conceded.

Unlike us, the authors have the figures. It would be pretty clear if they gave the figures that their interpretation is not valid. But by not giving the figures people could be taken in by it.