By David Tuller, DrPH
Something’s weird over at BMJ Best Practice, a resource for clinical decision-making and an arm of the BMJ Publishing Group. Two days ago, Steven Lubet and I posted a blog praising the new guide written by Dr. James Baraniuk and apparently reviewed by Peter White, along with two other experts.
First, I want to acknowledge that many patients disagreed with us about the merits of the guide. We assessed this document based on how much better it was than previous terrible U.K. guidelines, like those from NICE–not based on how far it was from perfection. It was our understanding as well that this document would continue to be reviewed and revised, presumably for the better.
Are there passages that still read like verbiage from an earlier biopsychosocial-oriented version and would best be edited out? Yes, definitely. Should we have cited these and therefore been more equivocal in our comments? Perhaps. But the bottom line for me remains this: The guide contains very clear statements that CBT and GET are not indicated for patients with PEM and other core symptoms of ME, and it presents the illness as a serious physiological disease and not a psychological disorder. And that’s a big, big step forward, whatever the shortcomings. (Given the history, I recognize that my perspective on the matter might be too optimistic. I hope not.)
As we noted in an update yesterday, the document we reviewed was dated July 31, 2017. Shortly after the blog was posted, we learned that a more recently updated version of the guide, dated November 13th, did not include Professor White’s name as a reviewer. We have so far been unable to find out why or when that happened. Now that he is retired, his former e-mail address from Queen Mary University of London is no longer operative, so reaching him directly is a challenge.
Moreover, thanks to sharp-eyed patients, some other anomalies were soon revealed. Besides the removal of Professor White’s name as a reviewer, the new version of the guide has at least one other major change. In a section at the end on “Evidence Scores” (p. 58 in the July version of the guide and p. 63 in the November version), the following sentence has been deleted from the later edition:
“Graded exercise therapy and overall improvement: there is poor-quality evidence that graded exercise therapy results in greater overall improvement in symptoms and functioning.
Evidence level C: Poor quality observational (cohort) studies or methodologically flawed randomized controlled trials (RCTs) of <200 participants.”
No additional text was included to replace this assessment of the effect of GET on overall improvement. Since the new version is several pages longer than the July version, I assume other sections have also been changed, but I have not had time to compare the documents at length. Unfortunately, given the track record of the U.K. medical publishing establishment, I assume other changes might also have served to water down the evidence against CBT and GET.
Finally, I was also sent a three-page BMJ Best Practice patient leaflet purportedly drawn from the larger guide. This leaflet is dated November 13th, like the later version of the guide. Unlike the guide itself, the leaflet appears to portray chronic fatigue syndrome as a condition largely characterized by extended “tiredness.”
The leaflet only mentions in passing any possible physiological underpinnings. It does not discuss the lack of legitimate evidence supporting cognitive behavior therapy and graded exercise for patients with the core symptoms of ME, or that the latter especially is contra-indicated because of the symptom of post-exertional malaise. It says nothing about the enormous problems created by use of the Oxford criteria and other loose case definitions. Like the PACE trial itself, it is a piece of crap.
So BMJ Best Practice, what’s going on here?
Comments
24 responses to “What’s Going On, BMJ Best Practice?”
curioser and curiouser
gah. one step forwards two steps back!
Could always ask: fgodlee@bmj.com
I knew you would pick this up and find out what is happening. Way to go David Tuller. The slippery Eel and the Weasel have gone underground, but you are like the Bear Grylls of the ME community, and we are very lucky to have you. Whoop Whoop, back to getting the truth out there.
Is independent review of guidelines even possible in the UK given an entrenched establishment position which has careers and legacy invested in maintaining BPS view. http://blogs.plos.org/mindthebrain/2015/11/25/was-independent-peer-review-of-the-pace-trial-articles-possible/#.VlW9QYj8_5o.twitter
Like Tina, I sense mischief afoot! Oh to be a fly on the wall…. Have the Science Media Centre flagged this important development up?- I think not! BBC….. don’t make me laugh Mr James Gallager et al…..
Plot twist….and the saga continues….
I knew I shouldn’t get my hopes up. Thank you for keeping on top of this Mr. Tuller
Yep. We Brits were never convinced by a supposedly ‘new’ BMJ stance. The UK is not going to capitulate that easily. ‘Double-speak’ is the default of the Establishment generally and very much so with ME in particular. It’s odd that the wording has changed for the worse *after* White’s names was lost from the document. Logic would suggest the opposite would be more expected. I’d be interested to get to the bottom of that one..though I won’t be holding my breath.
Shows yet again the extraordinary power of the BPS brigade to continue to promote their view against all the scientific evidence. And none of them, or the BMJ seems to give a toss about science truth or about patient safety. Shame on the lot of you!
No doubt this document was far too radical for him and he went behind the curtain to pull strings. I’d love to get to the bottom of it too, but doubt we ever will. Good luck to David!
It’s not good to hear that the 3 page patient leaflet is so bad and they have dropped the information near the end of he guide that there is poor evidence for GET resulting in greater overall improvements in symptoms and functioning. British medical organisations still being untrustworthy.
I have read more of the guide since I commented under the previous blog post on the BMJ guide when I only had skim read it. It is good that the guide makes clear mandated exercise programs with pre determined outcomes are not endorsed, with a recognition of impaired aerobic function, and CBT that is based on the false BPS model of changing illness beliefs for people with CFS and pem is not endorsed or recommended. However, page 48 still cites PACE as evidence of GET and CBT yielding symptom and function improvements, albeit with the next short paragraph underneath that exercise must not to be too rigorous for a person’s pain, fatigue and cognitive status. Also although CBT is recommended, reasonably, to help with a new diagnosis of CFS and coping skills, there is still a focus on it also being used to also help patients gradually increase their activity which I find of some concern.
I see it does say Canadian guidelines provides a more discriminating case definition for pem than previous CFS criteria. Ramsey ME not mentioned and guide still a bit critical of ICC guidelines. Also unless I have missed it I still can’t see it points out clearly PEM is not mandatory for a diagnosis under Fukuda. However, it does list the Fukuda criteria including the information that pem is an optional symptom.
The patient leaflet is still in my view conflating those with chronic fatigue with those with a distinct neuro immune illness and placing them all under the broad CFS umbrella, as patient leaflet says some evidence that graded exercise will help those with mild fatigue. The longer guide also does say other patients, except for severe, may also progress to gradual increases of short interval low impact exercise such as short intervals of leisurely walking, and for those on the scale between 5-9 it can include swimming, stationary exercise bike (note all aerobic activities). However, it does say any exercise must not be too rigorous for a person’s pain, fatigue and cognitive status
Overall there is still in my view a unhelpful focus on rehabilitation in the guide with an over optimistic notion endurance and function can be built up significantly for many with graded increases in activity, albeit now with some safeguards put in place, thankfully.
Thanks for keeping track of this, David and others. There is clearly a monumental battle going on behind the scenes as the BPS crowd do a Charlton Heston.
Wonder if it would be worth offering James Baraniuk an opportunity to put his side of things.
The same as what is always going on, the deliberate denial of the existence of true ME.
I commented yesterday but it was removed as disqus is wrongly claiming it is spam. I will try again.
It’s not good to hear that the 3 page patient leaflet is so bad and they have dropped the information near the end of he guide that there is poor evidence for GET resulting in greater overall improvements in symptoms and functioning. British medical organisations still being untrustworthy.
I have read more of the guide since I commented under the previous blog post on the BMJ guide when I only had skim read it. It is good that the guide makes clear mandated exercise programs with pre determined outcomes are not endorsed, with a recognition of impaired aerobic function, and CBT that is based on the false BPS model of changing illness beliefs for people with CFS and pem is not endorsed or recommended. However, page 48 still cites PACE as evidence of GET and CBT yielding symptom and function improvements, albeit with the next short paragraph underneath that exercise must not to be too rigorous for a person’s pain, fatigue and cognitive status. Also although CBT is recommended, reasonably, to help with a new diagnosis of CFS and coping skills, there is still a focus on it also being used to also help patients gradually increase their activity which is concerning.
I see it does say Canadian guidelines provides a more discriminating case definition for PEM than previous CFS criteria. Ramsey ME not mentioned and guide still critical of ICC guidelines. Also unless I have missed it I still can’t see it points out clearly PEM is not mandatory for a diagnosis under Fukuda. However, it does list the Fukuda criteria including the information that pem is an optional symptom.
The patient leaflet is still in my view conflating those with chronic fatigue with those with a distinct neuro immune illness and placing them all under the broad CFS umbrella, as patient leaflet says some evidence that graded exercise will help those with mild fatigue. The longer guide also does say other patients, except for severe, may also progress to gradual increases of short interval low impact exercise such as short intervals of leisurely walking, and for those on the scale between 5-9 it can include swimming, stationary exercise bike (note all aerobic activities). However, it does say any exercise must not be too rigorous for a person’s pain, fatigue and cognitive status
Overall there is still in my view a unhelpful focus on rehabilitation in the guide with an over optimistic notion endurance and function can be built up significantly for many with graded increases in activity, albeit now with some safeguards put in place, thankfully.
I commented yesterday and tried again earlier today, but they were both removed as disqus is wrongly claiming they are spam. I will try again and split into two in case the length is what is causing the problem
It’s not good to hear that the 3 page patient leaflet is so bad and they have dropped the information near the end of he guide that there is poor evidence for GET resulting in greater overall improvements in symptoms and functioning. British medical organisations still being untrustworthy.
I have read more of the guide since I commented under the previous blog post on the BMJ guide when I only had skim read it. It is good that the guide makes clear mandated exercise programs with pre determined outcomes are not endorsed, with a recognition of impaired aerobic function, and CBT that is based on the false BPS model of changing illness beliefs for people with CFS and pem is not endorsed or recommended. However, page 48 still cites PACE as evidence of GET and CBT yielding symptom and function improvements, albeit with the next short paragraph underneath that exercise must not to be too rigorous for a person’s pain, fatigue and cognitive status. Also although CBT is recommended, reasonably, to help with a new diagnosis of CFS and coping skills, there is still a focus on it also being used to also help patients gradually increase their activity which is concerning. >
> 2/2 I see it does say Canadian guidelines provides a more discriminating case definition for PEM than previous CFS criteria. Ramsey ME not mentioned and guide still critical of ICC guidelines. Also unless I have missed it I still can’t see it points out clearly PEM is not mandatory for a diagnosis under Fukuda. However, it does list the Fukuda criteria including the information that pem is an optional symptom.
The patient leaflet is still in my view conflating those with chronic fatigue with those with a distinct neuro immune illness and placing them all under the broad CFS umbrella, as patient leaflet says some evidence that graded exercise will help those with mild fatigue. The longer guide also does say other patients, except for severe, may also progress to gradual increases of short interval low impact exercise such as short intervals of leisurely walking, and for those on the scale between 5-9 it can include swimming, stationary exercise bike (note all aerobic activities). However, it does say any exercise must not be too rigorous for a person’s pain, fatigue and cognitive status
Overall there is still in my view a unhelpful focus on rehabilitation in the guide with an over optimistic notion endurance and function can be built up significantly for many with graded increases in activity, albeit now with some safeguards put in place, thankfully.
1/2 – I commented yesterday and tried again earlier today, but they were both removed as disqus is wrongly claiming they are spam. I will try again and split into two in case the length is what is causing the problem
It’s not good to hear that the 3 page patient leaflet is so bad and they have dropped the information near the end of he guide that there is poor evidence for GET resulting in greater overall improvements in symptoms and functioning. British medical organisations still being untrustworthy.
I have read more of the guide since I commented under the previous blog post on the BMJ guide when I only had skim read it. It is good that the guide makes clear mandated exercise programs with pre determined outcomes are not endorsed, with a recognition of impaired aerobic function, and CBT that is based on the false BPS model of changing illness beliefs for people with CFS and pem is not endorsed or recommended. However, page 48 still cites PACE as evidence of GET and CBT yielding symptom and function improvements, albeit with the next short paragraph underneath that exercise must not to be too rigorous for a person’s pain, fatigue and cognitive status. Also although CBT is recommended, reasonably, to help with a new diagnosis of CFS and coping skills, there is still a focus on it also being used to also help patients gradually increase their activity which is concerning. I >
I’ve found posts stuck in the Discuss ‘spam’ filter on several occasions too. The first time, I clicked on the query and it posted, but one remained stuck there despite it saying ‘we’re working on it’.
Up until then, I hadn’t noticed there were copies of what we post, on the Discuss site. Anyone who thinks they’ve ‘lost’ a post, might find it is only in limbo after all, and you can still copy and paste it somewhere else.
Thank you Steve.
Dr. Baraniuk is not a BSP fan. He has compiled a substantial body of research on ME and Gulf War Disease that is antithetical to the BSP positions, as you probably know.
Indeed, one must.
Has Baraniuk been made aware that his original document has been changed radically and that the ‘summary’ gives the BPS line? He will surely want to distance himself from this document now, even ask for his name to be removed from it.
In 1997 Peter White published a paper containing numerous pieces of objective physiological data – VO2 max etc on CFS patients. Patients were told to “exercise” at under 40% VO2 max. The PW dropped OBJECTIVE measures presumably as they contradicted his BPS beliefs. 20 years later wearable heart rate monitors are accesable and so are metabolic exercise assessments. Patients are using the objective physiology that PW has known about for more than 20 years to guide their self management of the disease. How can the BPS mob get away with hiding objective science at enormous cost to the UK economy and government and great personal cost to the patient. There is one winner – insurance companies and persons working for them.