Discussion in 'Latest ME/CFS Research' started by Denise, Jun 19, 2017.
It's a pity that the Tymes Trust is not included in this list.
I can't help thinking, yet again, that "if" is most often a much better choice of word, than "when", in contexts like these. To me, it kind of reads as if an improvement is to be expected.
As always, thanks a million @Dolphin for all your phenomenal work, sharing all these quotes and your comments with us. Hugely valuable and massively appreciated!
Leonard Jason has commented on the primer now:
If you want to comment on other aspects of Leonard Jason's blog post, there is a separate thread:
AYME no longer exist: AfME have swallowed them up
Check this COI statement:
I've been asked by several people here in Sweden whether or not this new Pediatric Primer should be used in advocacy efforts / informational efforts. I've finally read it, and I'm having such a hard time making up my mind about it. Can you help?
There are many good parts, as pointed out by @Dolphin and others above, and by Denise Lopez-Majano at the beginning of this Occupy ME guest blog post. Denise then goes on to point out some flaws, and I agree with those.
But my main criticism regards the way the Pediatric Primer talks about exercise and activity programs (and in one case: CBT). I find the Primer to be ambiguous on this oh-so-important issue.
While it has many good statements about the need to avoid post-exertional exacerbation of symptoms, these statements are interspersed with contradicting statements like
"The role of the physician is, therefore, first, to do no harm, second, to try to improve daily function, expand activity, ..."
and a section titled "Recommendations for Improving Activity Levels"
In my opinion, this primer doesn't put its foot down firmly enough in the issue of graded activity/exercise.
On the one hand, it states that people with ME/CFS will often choose to be active, even though they know they will suffer the consequences. This I think chimes with all of our experience: people with ME will expand activities naturally as soon as their body allows them to; in fact, they are likely to do it even if their body doesn't really allow them. They need to be slowed down, not to be encouraged to do more. If they improve, activity will be resumed naturally.
But instead of keeping with this line of reasoning and taking a very clear, completely unequivocal stand against GET, activity programs and exercise programs, the Pediatric Primer then goes on to spell out what in fact looks like graded activity programs in the section Recommendations for Improving Activity Levels (see page 16).
In the Pacing of Activities and the Energy Envelope section, it says:
"She/he should be encouraged to balance intellectual, social and physical activities, and to make a commitment to undertake segments of each component regularly." - which to me sounds GET-inspired.
The sections on "improving activity levels" for moderately impaired and mildly impaired patients assume that activity can be gradually increased (see page 16). As we all know, for many (most?) patients, this is not the case - not until the disease mechanism itself resolves (or some improvement takes place).
And while, in places, there is some good debunking of the CBT-GET theory, later in the text - as noted by others - all of a sudden this sentence appears:
"While cognitive behavioral therapy (CBT) and graded exercise therapy (GET) have been promoted as of value in mild and moderate ME/CFS, there is no evidence that they are of therapeutic value in very severely affected patients."
- As others have pointed out, there is no evidence of any value of CBT or GET in any kind of ME/CFS patients, since that would require 1) studies done on patients defined by CCC or ICC which are 2) also methodologically sound, and we're nowhere near that having been done. Why bring in this sentence?
Even in the management of the severely ill, homebound patient, there seems to be a supposition that gradual increases of activity will be possible (page 25). What we would really need here instead would be statements making it very clear that many, many patients remain at the same level of major impairment (no matter how one stretches...)
In the section on CBT, references are made to the very problematic Dutch studies, none of which concern actual ME/CFS (CCC or ICC, with obligatory PEM) - plus all the usual additional methodological issues.
So there are some issues here. On the other hand, as I started out by saying, large parts of the Pediatric Primer are very good.
Where does that leave us?
As an advocate, I've seen several examples of people who are in favour of the CBT/GET/BPS/MUPS paradigm quoting reports we think of as good to great - actually finding quotes for example in the IACFS/ME Primer to use FOR graded exercise and CBT. I think the authors of the IACFS/ME Primer, the IOM report, and now the Pediatric Primer perhaps aren't quite aware of how everything which is the tiniest bit ambiguous will be used against biomedically based, energy envelope-based care. I'm not sure they know just how clearly they need to spell everything out to ensure their text not being used in a way opposite of how they intended it. (I wish they would run things by advocates. It would save so much work, and suffering.)
I think a clinician/care giver, school representative or decision maker with a good mindset will have great use of this pediatric primer.
But can we use it in advocacy efforts and informational efforts where we know there is a risk people will go to great lengths to cherry-pick sentences and sections to make it look like they support the GET-CBT paradigm? I don't know. How would you answer that question, @medfeb @Dolphin and others?
@mango @Johannawj FYI
Perfect summary @Anne! I have a pediatrician in my family and thought about sending her the primer and had the exact same thoughts. I have no solution to offer, just wanted to express my appreciation for your post.
@Anne - I think the primer does overwhelmingly more good than harm. The bad parts are quite mild, rather ambiguous, and less prominent than the good parts. For example, even "expand activity" is explicitly secondary to "do no harm", as well as preceded by a focus on improving daily activity (which can be a realistic goal of improved pacing and accommodations).
It's not perfect, but it is miles (and kilometers) better than any other published pediatric advice I've seen from a source which doctors will probably trust. A few parts could definitely use improvement, but even those are extremely unlikely to cause any harm.
I agree with @Valentijn. In the end this was what I decided, too. I thought if that pediatrician decided to google a little around about ME in children, all she would find would be Crawley studies, restricting sleep and graded exercise. (But I was also still concerned that she would conclude from reading the primer that activity is important to get better and would start citing it at me and "beat me with my own weapons". )
Of course this was only one person vs a advocacy movement like in your case. But I also think this primer is the best we have. And it's written by several pediatricians and peer reviewed, so it has way more authority than any other information we have on children with ME (like information written by the Thymes Trust or a book by a single pediatrician for example). So I guess it's a big chance to set some records straight.
It' s not perfect but it is a start. We have no paediatric guidelines in Scotland, and this is a far better basis than deferring to the English NHS / NICE guidelines.
Any consensus document has compromise somewhere ( i would have liked to see more on antivirals given adolescent EBV triggers) - it is a basis from which to move forward
I note that the primer has had more views than 99% of the articles published in Frontiers:
and also that most of those views come from the UK:
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