The Lancet (UK) editorial: "What's in a name? Systemic exertion intolerance disease"

[medfeb]

In case its interesting….
I ran across this comment on PACE in Miriam Tucker's Medscape article relative to PACE and SEID (http://www.medscape.com/viewarticle/839532 - Dr. WIlliam Wilkie, Feb 17, 2015.)

"The name change was at least partially due to negative CFS/ME-advocate responses to the findings of the PACE study… The new name appears to be a political maneuver to satisfy patient advocacy groups. It is a dangerous name change because it emphasizes and requires post-exertional malaise, a symptom that undermines application of rigorously scientifically proven effective therapy."​

The logic is mind-boggling, especially the part about it being dangerous because it undermines therapy

On a separate note, does anyone know if the U.K. media covered the IOM? I saw something in Daily Mail and Argusreport, and Bob pointed out an article in New Scientist. But I didn't see anything else or anything in SMC. Did I miss it?

 

[worldbackwards]

One in the Telegraph, not bad, ridiculous headline. It's knocking around here somewhere.

 

[SOC]

It is a name change because it emphasizes and requires post-exertional malaise, a symptom that undermines application of rigorously scientifically proven effective therapy."
The logic is mind-boggling, especially the part about it being dangerous because it undermines therapy

The new name is dangerous because it identifies a clear biomedical feature of the illness that can't be addressed in any way by CBT. Patients might realize that they're genuinely physically ill and no longer be susceptible to attempts to brain-wash them into thinking that the illness is just a false belief system, or to create sufficient guilt and self-doubt in their minds that they stop seeking actual medical care for their condition.

Their position is so utterly lacking in logic, it astounds me that anyone buys their BS. It must be a case of: If you lie with enough confidence and an arrogant attitude, people will believe you, no matter how ridiculous your lie. These people are the consummate bluffers.

 

[Esther12]

Wilke seems a little confused on what PACE showed:

Not only that, but 33% of GET-treated patients fully recovered (fatigue) v 22% APT patients. (White PD, 2013).

Therefore: Graded exercise (advancing the patient physiologically) was better Rx than asking the patient to avoid/limit physical or mental stress (APT, adapted from the (patient advocate?) “envelope” theory of CFS); proving that CFS patients were (only?) deconditioned.

This finding was not welcomed. Hence the new definition, emphasizing post-exertional malaise. By definition, patients must avoid exercise; a self-fulfilling prophecy with regard to acceptance and fearful outcome of treatment.

The new name appears to be a political maneuver to satisfy patient advocacy groups. It is a dangerous name change because it emphasizes and requires post-exertional malaise, a symptom that undermines application of rigorously scientifically proven effective therapy *.

Googled Wilke and CFS to find this - seems he wasn't keen on CFS as a label either.

interesting ... I was there just a few years ago and was told that CFS did not EXIST. Their specialist, Dr. William Wilke, said it no longer existed and what WAS called CFS was now "Centralized Sensitization Syndrome." Uh huh. He was also surprised *I* had it as I "didn't look like a Republican." (He claimed the more "uptight" get this.) Took me three years to get over that shock and file a complaint

 

[WillowJ]

More harassment of researchers. When they make an assertion it should just be accepted without questioning.

Of course, this applies equally to Prof. Lipkin as to Prof. White, right?

 

[WillowJ]

Apparently Wilke is a rheumatologist who works with fibro patients and wrote a book on fibro:
http://www.amazon.com/Cleveland-Cli...iewpoints=1&sortBy=bySubmissionDateDescending

 

[Sidereal]

It is a dangerous name change because it emphasizes and requires post-exertional malaise, a symptom that undermines application of rigorously scientifically proven effective therapy."

 

[biophile]

I wouldn't read too much into the comment about behind the scenes. Discussions behind the scenes probably just means a conservation when writing the editorial. It probably doesn't have anything to do with discussions with the IOM.

The comment about paving the way is a tad ridiculous and so far unexplained, while polite attempts at getting an explanation have been dismissed as bullying. I think the PACE paved the way for two things:

1) The extension of life to the invested ideas and careers relating to CBT/GET for CFS, maintained by salami slicing previous research data, and attracting further funding based on the appearance of credibility from previous work.

2) The beginning of the end of the dominance of the cognitive behavioural model of CFS, which clearly failed to live up to expectations and is only remaining held upright (largely) because of ongoing spin. May still help a minority of CF patients.

If anything it could be argued that PACE partly paved the way for the IOM report because of its failures.

 

[Roy S]

Better late than never; but better never than late.
　
Pam Das:
I apologise for any offence caused by my "bullies" tweet. It was from me, not The Lancet. Hope for constructive engagement in future.
　
https://twitter.com/pam_das/status/574979559503740929

 

[eafw]

I apologise for any offence caused by my "bullies" tweet.

"I'm sorry you were offended" is a poor effort. "I'm sorry I resorted to calling people bullies in the wake of a perfectly reasonable request" would be better, along with an actual answer to the question of the "behind the scenes" claim.

 

[Wildcat]

.
The people who made the "perfectly reasonable request", the ones who Pam Das blocked on Twitter, are still blocked by her.

Pam Das's apology did not reach their twitter feed.

And no explanation forthcoming re the original claims by Pam Das re the PACE Trial and the IOM.
.

 

[Sean]

I am running out of popcorn.

 

[biophile]

Wilke seems a little confused on what PACE showed:

Not only that, but 33% of GET-treated patients fully recovered (fatigue) v 22% APT patients. (White PD, 2013).

Therefore: Graded exercise (advancing the patient physiologically) was better Rx than asking the patient to avoid/limit physical or mental stress (APT, adapted from the (patient advocate?) “envelope” theory of CFS); proving that CFS patients were (only?) deconditioned.

This finding was not welcomed. Hence the new definition, emphasizing post-exertional malaise. By definition, patients must avoid exercise; a self-fulfilling prophecy with regard to acceptance and fearful outcome of treatment.

The new name appears to be a political maneuver to satisfy patient advocacy groups.

The 33% figure seems to be the number of GET participants within the (*cough*) "normal range" for fatigue in Table 1 of the (*cough*) "recovery" paper. The figures were 22% for APT, 21% for SMC, and 41% for the CBT group. Keep in mind that the CBT and GET groups were conditioned to believe that these therapies are very effective, but APT and SMC were not.

In a later (recent) paper, GET didn't improve fitness levels, which strongly suggests that patients weren't exercising more, which strikes at the heart of the optimistic goals and hyped claims surrounding rehabilitative exercise therapy for CFS, including Wilke's own conclusion that the PACE results proved that CFS patients were (only?) "deconditioned".

It is a dangerous name change because it emphasizes and requires post-exertional malaise, a symptom that undermines application of rigorously scientifically proven effective therapy.

Eh? PACE was a chronic fatigue study which did not require ME-ICC style post-exertional symptoms and did not even measure CDC style PEM properly. Emphasizing and requiring post-exertional symptoms indeed undermines the application of GET research, because as far as we know, the evidence simply doesn't apply to such patients. If anything, GET for CFS has been "rigorously scientifically proven" *not* to improve a range of objective outcomes.

It is frustrating that GET results are over-promoted as settling the question of whether we should rest or exercise, despite all the evidence we have showing that patients are not actually exercising more or reconditioning as a result of GET.

 

[Bob]

It is a dangerous name change because it emphasizes and requires post-exertional malaise, a symptom that undermines application of rigorously scientifically proven effective therapy.

To suggest that modern-day GET simply promotes exercise, and ignores post-exertional exacerbation, is to dangerously misunderstand the nature of GET. However much we don't appreciate the hypothesis that it's based upon, GET (as per the pace trial) now includes elements of pacing to avoid large scale carnage. GET actually reduces activity levels to a manageable baseline before incrementally increasing activity levels. And it's a somewhat adaptive therapy that allows for a reduction in activity if/when symptoms flare up, in order to avoid a relapse. This is all laid out in the PACE manuals. The manuals actually accept that patients experience "set backs", and that activity levels may have to be lowered accordingly. (Although, the primary focus was on setting a baseline and sticking to it, and not reducing activity levels unless absolutely necessary.)

So GET has been adapted over time and now takes important lessons from pacing. So when Wilke says that PEM "undermines application of rigorously scientifically proven effective therapy", this doesn't apply to GET as administered in the PACE trial, because GET in the PACE trial made allowances for PEM. Although, the pace trial proponents obviously would argue that set backs are caused by [sudden] deconditioning, and not PEM.

 

[Esther12]

The 33% figure seems to be the number of GET participants within the (*cough*) "normal range" for fatigue in Table 3 of the (*cough*) "recovery" paper. The figures were 22% for APT, 21% for SMC, and 41% for the CBT group. Keep in mind that the CBT and GET groups were conditioned to believe that these therapies are very effective, but APT and SMC were not.

From memory I thought it was 28/30%. I don't remember the 33/41% figurers.

25 (16%) of 153 participants in the APT group were
within normal ranges for both primary outcomes at
52 weeks, compared with 44 (30%) of 148 participants for
CBT, 43 (28%) of 154 participants for GET, and 22 (15%)
of 152 participants for SMC.

From the Lancet paper.

 

[snowathlete]

I apologise for any offence caused by my “bullies” tweet. It was from me, not The Lancet. Hope for constructive engagement in future. #mecfs

I've been thinking about this all day.
Appology 101 is that when you apologise you don't attach conditions to it; else you show that you don't really mean it. We all learn this in kindergarten. So you say, "I am sorry for doing X." Not, "I am sorry for doing X. But you did Y".

The final bit "Hope for constructive engagement in future" sounds reasonable at first, but what does it really mean? If it is a true apology then she obviously must mean that she hopes her engagement will be constructive going forward. Yet she has not unblocked people, none of which did anything wrong. Also she has not made any effort to engage further on the original topic; specifically making no effort to provide any evidence for the problematic claim. This suggests that she doesnt mean constructive engagement by her after all.

What does she mean then?
She must mean that she hopes patients will give constructive engagement in future; which by implication, means she considered the patient engagement associated with this issue to have been non constructive. But looking at the patient engagement it was constructive and totally reasonable questions were being asked in a reasonable way. Patients actually showed remarkable restraint from what I can see.

So what can I conclude then? The apology doesn't appear genuine because she is still saying that the cause of the problem was patients asking her awkward questions, asking her to justify the claim she made, which she has so far not been able to do.

 

[Esther12]

I thought it was funny too.

"I hope that in the future I'll be willing to answer some of the reasonable questions put to me."

Edit. To be clear, that was not what was tweeted, but my interpretation of what was said, emphasising the aspect I found absurd. Sorry if any confusion.

 

[biophile]

From memory I thought it was 28/30%. I don't remember the 33/41% figurers.

The 28/30% figures are for "normal range" in both fatigue and physical function. 33/41% were for normal fatigue only.

Aside: I meant to say Table 1 of the recovery paper, not table 3.

@Bob.

Establishing a baseline of a consistent and sustainable level of physical activity is more about stabilisation of alleged boom-bust activities and does not necessarily mean decreasing activity levels overall. Some CBT researchers also believe there are "pervasively passive" CFS patients who aren't boom-busting.

Activity levels are planned and negiotiated, and GET includes elements of pacing to avoid major issues but only up to a point. While GET has some limited flexibility (which may be eroded in real-world application outside RCTs), there are still problems. In the PACE GET manuals, patients and therapists are told (with a false level of confidence) that post-exertional symptoms are just the harmless normal effects of the reconditioning process and are expected to tolerate them as much as reasonably possible while the body is allegedly adapting to the new level of physical activity. Only when post-exertional symptoms are intolerable or severe enough to significantly affect daily functioning is activity then to be "slightly" decreased temporarily, and then resumed ASAP (e.g. within a few days) to avoid (allegedly rapid) deconditioning.

Seeing how PACE showed no improvements to fitness levels etc, much of the manual is wishful thinking.

 

[Esther12]

The 28/30% figures are for "normal range" in both fatigue and physical function. 33/41% were for normal fatigue only.

Aside: I meant to say Table 1 of the recovery paper, not table 3.

Ahhh... thanks. I misread you. Never seen anyone use that for recovery before.

 

[Bob]

Establishing a baseline of a consistent and sustainable level of physical activity is more about stabilisation of alleged boom-bust activities and does not necessarily mean decreasing activity levels overall. Some CBT researchers also believe there are "pervasively passive" CFS patients who aren't boom-busting.

Activity levels are planned and negiotiated, and GET includes elements of pacing to avoid major issues but only up to a point. While GET has some limited flexibility (which may be eroded in real-world application outside RCTs), there are still problems. In the PACE GET manuals, patients and therapists are told (with a false level of confidence) that post-exertional symptoms are just the harmless normal effects of the reconditioning process and are expected to tolerate them as much as reasonably possible while the body is allegedly adapting to the new level of physical activity. Only when post-exertional symptoms are intolerable or severe enough to significantly affect daily functioning is activity then to be "slightly" decreased temporarily, and then resumed ASAP (e.g. within a few days) to avoid (allegedly rapid) deconditioning.

Thanks bio. Good points. I didn't mean to minimize the problems with GET. Just pointing out that it's more sensitive and adaptive than it used to be. Anyone who promotes GET as simply a steady incremental increase in activity, with the therapists blind to, and disregarding of, symptoms has got it wrong. If the pace trial had tested old-style GET, I reckon it would have led to widespread carnage rather than just null results. But, of course, we still don't know how many patients deteriorated at 12 weeks when the therapies were being administered.