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Australia: RACGP: GET for CFS
- Thread starter Sly Saint
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- australia get paul glasziou racgp
Kitty
Senior Member (Voting Rights)
Well spotted!
Caroline Struthers
Senior Member (Voting Rights)
It's because the link hasn't been updated. They are such complete snakes! https://www.racgp.org.au/clinical-r...ded-exercise-therapy-chronic-fatigue-syndrome
rvallee
Senior Member (Voting Rights)
They really can't seem to care about patients' well-being and outcomes. This is really all self-serving mindless ideology.
Might as well just have published a picture of a full septic tank with the words "fuck you" clearly spelled out on top. Zero difference here.
It would be hard to provide better, or worse depending on outlook, evidence of just how corrupt and inept evidence-based medicine is. There's a lot of incompetence out there, but in health care it's just taken to an excessive level sometimes.
Might as well just have published a picture of a full septic tank with the words "fuck you" clearly spelled out on top. Zero difference here.
It would be hard to provide better, or worse depending on outlook, evidence of just how corrupt and inept evidence-based medicine is. There's a lot of incompetence out there, but in health care it's just taken to an excessive level sometimes.
Oh they've updated it alright, this whole page is a masterclass in deception :
"Incremental physical activity has also been shown to improve muscle strength, cardiovascular endurance and symptoms in a wide variety of conditions that have chronic fatigue as a symptom, such as heart disease, cancer, chronic obstructive pulmonary disease and post-viral fatigue"
There is absolutely no evidence base for the rest which dangerous nonsense:
The PACE trial has produced a comprehensive graded exercise therapy (GET) therapist manual (and a manual for patients), which can be downloaded free of charge by going to the PACE trial website and selecting the relevant manuals from the trial information section.
Description
Graded exercise therapy (GET) is a program of incremental physical activity used in the largest of the seven RCTs to date. It is delivered in three phases over several sessions (e.g., 15 sessions in the PACE trial – see Table 1).
After assessment of the patient’s current physical capacity, and mutual negotiation of meaningful and functional physical goals, a baseline of physical activity is agreed upon and commenced, at a manageable low level of intensity.
Any activity that can be incrementally increased in terms of duration, intensity, frequency is appropriate, including walking, swimming, and the use of exercise machines. These activities can be alternated, noting that a change in activity may require adjustment to the duration, intensity, frequency of the activity.
Physical activity can be increased by:
Increments of duration: duration of physical activity is increased slowly (10–20%), once every 1–2 weeks provided any PEM has been only mild and transient (see Precautions). (note other RCTs showing benefit from exercise used much smaller/slower increments)
Increasing intensity: intensity is increased by encouraging the patient to do an activity faster e.g., speed up the pace of their walk or swim.
However, increase in intensity is done with care and is likely to be done in stages. It can be useful to build up the intensity by adding in shorter bursts of higher intensity activity to the program; for example, starting with 1 minute of fast walking interspersed with 2 minutes of normal pace."
Description
Graded exercise therapy (GET) is a program of incremental physical activity used in the largest of the seven RCTs to date. It is delivered in three phases over several sessions (e.g., 15 sessions in the PACE trial – see Table 1).
After assessment of the patient’s current physical capacity, and mutual negotiation of meaningful and functional physical goals, a baseline of physical activity is agreed upon and commenced, at a manageable low level of intensity.
Any activity that can be incrementally increased in terms of duration, intensity, frequency is appropriate, including walking, swimming, and the use of exercise machines. These activities can be alternated, noting that a change in activity may require adjustment to the duration, intensity, frequency of the activity.
Physical activity can be increased by:
Increments of duration: duration of physical activity is increased slowly (10–20%), once every 1–2 weeks provided any PEM has been only mild and transient (see Precautions). (note other RCTs showing benefit from exercise used much smaller/slower increments)
Increasing intensity: intensity is increased by encouraging the patient to do an activity faster e.g., speed up the pace of their walk or swim.
However, increase in intensity is done with care and is likely to be done in stages. It can be useful to build up the intensity by adding in shorter bursts of higher intensity activity to the program; for example, starting with 1 minute of fast walking interspersed with 2 minutes of normal pace."
Indeed I think the sense in which they care amounts to: "well... we didn't harm them that much, I sense this is either them trying to make us look bad or just lumping all the blame on us for 'unfortunate things'/sh** life etc''
in the same way you actually do get people in life who do something awful to someone else, like beat them up, or steal something they needed, and then get angry with said victim for 'exaggerating what they did', as if they weren't responsible for the whole impact (like stealing that money was meant for their mortgage or put them in debt or they must have just over-bruised).
is this one of those areas where they've worked out they are as close as they can get to something for which they can do harm but can't be sued. Because actually getting that justice will involve 'proving' it wasn't anything else etc?
It certainly seems to be that they think so from the fact that therapists from 2011 onwards, or pushers alike seem to think saying 'you must have done it wrong' or intensity or gentleness of 'others' was the issue provides them with a get out of jail free card.
Of course I suspect the deliberate insinutation of them wanting to keep pretending that 'innate stress' is somehow a perpetuator is thrown in there constantly in order to try and throw shade on 'we can't be responsible for everything', even when the likelihood is that if someone did such a programme then that programme would be the only 'independent variable' that actually changed - apart from maybe people actually reducing other things like chores or trips in order to try and accommodate it.
And the fact that of course can you imagine most medicines with yellow card systems trying to pull that one.... or is that what this might be somewhat about??
Even though as an industry they have started using the terms 'dosage' and the like?
rvallee
Senior Member (Voting Rights)
This is literally the No True Scotsman fallacy. It's beyond absurd to rely on the most common types of logical fallacies as actual arguments. It's been argued for decades and not only is there no evidence for it, there is good evidence otherwise.
And the vast majority of patients will always simply be told to exercise with no follow-up so even if that were any true, it would fail implementation in real life. The last few years have seen a glut of studies from the same researchers making it all about self-management, app-based and so on.
And it's just speculative. They can't even argue what element of supervision would make a difference here. It makes zero sense. This can't be valid, it's no way to do anything. It's all just a bunch of lies.
Oh they can definitely be sued, it's highly doubtful that anyone has given informed consent, but if they weren't harmed by treatment, then there has been no medical negligence in terms of treatment.
However, if you were harmed by treatment, then a potential claim in tort exists. That's the Montgomery v Lanarkshire Healthboard 2015 case. Medical negligence. The problem is that most cases take years and usually settle out of court because of the legal costs. Added to which, as the patient was harmed then they probably now have severe ME or worse so the physical endurance required to pursue an individual case would also be a personal material consideration.
Think about Alem Matthees. They had no qualms at all about forcing that data release case to appeal, claiming all sorts about reputational harm and commercial interests, and alleged risks from us patients, prompting the Tribunal to state “assessment of activist behaviour was, in our view, grossly exaggerated”', and they were quite happy to spend nearly a quarter of million pounds to do it. Here's the appeal Decision Queen Mary University of London EA-2015-0269 (12-8-16).PDF (tribunals.gov.uk)
This is a news article from the Unrest global campaign 2 years later "a few millitant activists" indeed! Time for Unrest: Why patients with ME are demanding justice | The Independent | The Independent
The article mentions AIDs campaigners, but even they had to keep taking legal action around the world to force governments to provide treatment, recognise human rights etc. Most of the major steps forward they made had to be pushed like that. I've got a list that the Canadian Courts compiled of many of the international cases the campaigners had to bring. They came from a place where some HCP were refusing to treat their symptoms in hospital. This one led the change How London’s first dedicated HIV ward changed the AIDS response | UNAIDS I remember it well.
Can you imagine that happening during the Covid Pandemic? AIDS was put down to lifestyle choices, patients were blamed for contracting the illness, they were stigmatised, abused, and look how long it's taken for the Infected Bloods Inquiry to take place. Patients rights are routinely at the bottom of the pile.
Even its own HCPs have begun a Group Litigation against the NHS for failure to provide proper PPE to staff on the frontline during the pandemic. (Class action)
Do you know what the first 6 words are in the NHS Constitution? "The NHS belongs to the people." They'd do well to remember that once in a while as you sit in front of them, and they roll their eyes, acting like they're doing ME/CFS patients a favour!
Rant over
There is good news though, the World Health Organisation published it's first Patient Safety Charter on the 18th April 2024 and that helps patients all over the world.
A very long nightmare. I do not know why they keep this up. It is just watered down rehash that has no evidence base. The past comment of racgp being invested in nice guideline has clearly gone out the window. Does anyone know if this is a temporary measure for a clinical evidence update coming in the future or is this it?
friendtofronds
Established Member
Incredible that the RACGP could produce an "update" like this after NICE 206, the IOM report and the change in CDC guidance, but considering the history, I guess we shouldn't be surprised.
It's useful to compare the old and new entries using something like 'Track Changes' in Word or Libre Office. The pre-update version is on archive.org here (March 28 2024): https://web.archive.org/web/2024032...ded-exercise-therapy-chronic-fatigue-syndrome . Compare with the new one here: https://www.racgp.org.au/clinical-r...cise/incremental-physical-activity-for-cfs-me
(If you need it, steps for comparing documents here or here.)
It seems to me that the authors are aware that NICE and the CDC no longer recommends GET because they've removed almost every reference to Graded Exercise Therapy (previously 16 references, reduced to 2, I think). This becomes comical because they include no specific references for "Incremental physical activity" - their replacement term. Where is the evidence base for this new treatment? They also continue to mischaracterise opposition to GET as a problem of a small number of patient advocates, and steadfastly avoid mentioning that official guidance from NICE, the CDC and the IOM/NAM no longer recommends GET for ME/CFS.
In the update, they've added an asterisk with this disclaimer in a tiny font:
"incremental physical activity is likely to be helpful for the broader group but applicability is less clear for the more recent narrowly defined groups."
The disclaimer uses the weakest possible language to make the point, and it's made almost invisible due to the decreased font size. Nevertheless, it is useful. Anyone with the classic symptoms of ME/CFS, who is subjected to GET by their GP, could use this disclaimer to argue that there is now less support for the use of GET in their individual cases than previously.
The update also adds a line to the Adverse Effects section:
"Surveys by patient groups of their members have suggested that incremental physical activity may be harmful to some people with CFS/ME and advocate against such programs. This is a valid concern, but may be due to inappropriately planned or progressed exercise programs, possibly undertaken independently or under supervision from a person without appropriate experience, or subgroups within the spectrum of CFS/ME who are more vulnerable to more severe PEM."
As you point out tornandfrayed and Trish, this speculation about the surveys is nonsensical, but the last line about "subgroups" is new and useful. They have now officially acknowledged that incremental physical activity/GET can cause severe PEM in (some) patients and this can be considered an adverse effect. You can use this acknowledgment to argue against GET if you experience severe PEM and are subjected to harmful advice.
Another change is the downgrading of the confidence from Strong, or Level 1, to Moderate. Anyone subjected to GET could argue that compared to last month, the RACGP now has less confidence in the applicability of GET/Incremental physical activity for ME/CFS than in the past.
It's useful to compare the old and new entries using something like 'Track Changes' in Word or Libre Office. The pre-update version is on archive.org here (March 28 2024): https://web.archive.org/web/2024032...ded-exercise-therapy-chronic-fatigue-syndrome . Compare with the new one here: https://www.racgp.org.au/clinical-r...cise/incremental-physical-activity-for-cfs-me
(If you need it, steps for comparing documents here or here.)
It seems to me that the authors are aware that NICE and the CDC no longer recommends GET because they've removed almost every reference to Graded Exercise Therapy (previously 16 references, reduced to 2, I think). This becomes comical because they include no specific references for "Incremental physical activity" - their replacement term. Where is the evidence base for this new treatment? They also continue to mischaracterise opposition to GET as a problem of a small number of patient advocates, and steadfastly avoid mentioning that official guidance from NICE, the CDC and the IOM/NAM no longer recommends GET for ME/CFS.
In the update, they've added an asterisk with this disclaimer in a tiny font:
"incremental physical activity is likely to be helpful for the broader group but applicability is less clear for the more recent narrowly defined groups."
The disclaimer uses the weakest possible language to make the point, and it's made almost invisible due to the decreased font size. Nevertheless, it is useful. Anyone with the classic symptoms of ME/CFS, who is subjected to GET by their GP, could use this disclaimer to argue that there is now less support for the use of GET in their individual cases than previously.
The update also adds a line to the Adverse Effects section:
"Surveys by patient groups of their members have suggested that incremental physical activity may be harmful to some people with CFS/ME and advocate against such programs. This is a valid concern, but may be due to inappropriately planned or progressed exercise programs, possibly undertaken independently or under supervision from a person without appropriate experience, or subgroups within the spectrum of CFS/ME who are more vulnerable to more severe PEM."
As you point out tornandfrayed and Trish, this speculation about the surveys is nonsensical, but the last line about "subgroups" is new and useful. They have now officially acknowledged that incremental physical activity/GET can cause severe PEM in (some) patients and this can be considered an adverse effect. You can use this acknowledgment to argue against GET if you experience severe PEM and are subjected to harmful advice.
Another change is the downgrading of the confidence from Strong, or Level 1, to Moderate. Anyone subjected to GET could argue that compared to last month, the RACGP now has less confidence in the applicability of GET/Incremental physical activity for ME/CFS than in the past.
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Yes, nice catch.
Difficult for them to be more brazen in their denial and utter contempt for us, science, and basic ethics.
Especially the extraordinary and totally unnecessary additional stress they are imposing on us.
Definitely nothing to do with them. No sirree.
Because the consequences of accepting and admitting that their critics, especially those bastard patients, were correct all along will open a Pandora's Box of revelations and accountability that they cannot control and which will quite rightly destroy them.
It is going to happen anyway, they are now far too deep in this cesspit of their own making to be able to extract themselves from it and avoid the consequences. This can only end one way. It now just a matter of the details of how it unfolds. They are just trying to fob it off for as long as possible, and make it as nasty and costly for us in retribution on their way out, because that is all they have left.
And here we are. Oh what fun.
Art Vandelay
Senior Member (Voting Rights)
Interesting that Andrew Lloyds clinic website still promotes “Strong or Level 1 evidence”. You would have to wonder if he is still involved heavily with this update as he uses the same language when interviewed. Clearly evidence of improvement with GET does not exist.
Simone
Senior Member (Voting Rights)
Thanks, Hutan. We are definitely working on this behind the scenes.
Simone
Senior Member (Voting Rights)
Sadly, they have all the evidence. A year ago, we got wind that the committee was considering whether to update the guide, so Emerge and other groups and a bunch of patients sent them the evidence. But this isn’t about evidence (the use of the PACE trial is telling. Is it used anywhere else in the world as a basis for clinical intervention?). Paul Glasziou leads the project and he’s well and truly entrenched in the BPS model.
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That's very troubling. Does anyone have any idea why Glasziou is so adamantly supportive of GET? I understand his background is as a GP and then a professor of evidence based medicine and he's at the heart of the Cochrane project. The fact that he and Peter White were advisors on the 2019 Cochrane GET review and presumably earlier versions is a big negative.
Has Glasziou ever run an ME/CFS clinic, or done his own research on ME/CFS, or is he just a BPS groupie with no understanding of evidence?
Has Glasziou ever run an ME/CFS clinic, or done his own research on ME/CFS, or is he just a BPS groupie with no understanding of evidence?
Simone
Senior Member (Voting Rights)
Good question. I’m not sure. I’m not aware of him having run a clinic or anything. His bio consistently says he worked as a part time GP for years, and I’ve often wondered just how much clinical practise he really has, he seems to do a lot of academic work. He was one of the co-authors of that “NICE got it wrong” paper that came out last year, so he’s in the gang, with Lloyd and a few other Aussies. The irony is that he’s a Professor of Evidence-Based Medicine and yet refuses to follow the evidence on this one at all.