Australia: RACGP: GET for CFS

Very PACE trial based information.

eg"
Adverse effects
Surveys by patient groups of their members have suggested that GET may be harmful to some people with CFS. However, this finding is believed to be due to inappropriately planned or progressed exercise programs, possibly undertaken independently or under supervision from a person without appropriate experience.

Availability
GET should be supervised by a physiotherapist or exercise therapist, preferably with specific experience and training in applying GET to patients with CFS.

The PACE trial has produced a comprehensive GET therapist manual (and a manual for patients), which can be downloaded free of charge by going to PACE trial website and selecting the relevant manuals from the trial information section."

https://www.racgp.org.au/clinical-r...ded-exercise-therapy-chronic-fatigue-syndrome

(The RACGP is cited on the Wikipedia page for GET "Some prominent health organisations support the usefulness of GET for chronic fatigue syndrome, the Royal Australian College of General Practitioners[2]).")

 

This a section is from an online handbook: https://www.racgp.org.au/clinical-resources/clinical-guidelines/handi

"The Handbook of Non-Drug interventions (HANDI) is making effective non-drug treatments more visible and easier to use.

HANDI aims to make ‘prescribing’ a non-drug therapy almost as easy as writing a prescription.

The topics in HANDI have been developed by the HANDI Project team and is supported by appropriate evidence."

On the left hand column is a link to a Provide Feedback page: https://www.racgp.org.au/clinical-resources/clinical-guidelines/handi/provide-feedback

Might it be worth compiling an S4ME response ?

 

This is a current publication??

 

[my bold/underline]

Not very sound evidence then for ignoring reporting of harms

 

It says First published: March 2015.

 

thanks. yeah, I see that. that explains why it was written this way. it's weird that it's still up, as if time has stood still for six years.

 

The RACGP is still very much in the dark ages when it comes to ME/CFS (much like most Australian medical professionals).

As an example, there's this advice from the RACGP on CBT for ME/CFS which falsely claims that CBT for other serious illnesses like MS and RA is equivalent to the CBT offered for ME/CFS.

Moreover, the RACP's ME/CFS guidelines are from 2002. They won't withdraw them even though the NHMRC has said that they are clearly out of date.

 

Trial By Error: Awaiting Response on Chalder Paper; Australian GPs Still Promoting GET and Citing PACE

"The website of the Royal Australian College of General Practitioners (RACGP) hosts a section called “Graded exercise therapy: chronic fatigue syndrome.” The section indicates that it was posted in March, 2015, with no sign that it has been since reviewed or updated. Not surprisingly, the text reads as if PACE hadn’t been publicly and widely discredited; in fact, PACE is a key reference. And the section highlights the 1994 Fukuda case definition, which does not require post-exertional malaise as a symptom.

The section is part of RACGP’s Handbook of Non-Drug Interventions, or HANDI. The chair of the HANDI project is Paul Glasziou, a professor of evidence-based medicine at Australia’s Bond University. Previously, he served as director of the Centre for Evidence-Based Medicine at Oxford University. According to his HANDI bio, “his key interests include identifying and removing the barriers to using high quality research in everyday clinical practice.”"

https://www.virology.ws/2022/01/04/...lian-gps-still-promoting-get-and-citing-pace/

I have also posted this on the thread for the other article mentioned here, Chronic Fatigue Syndrome and Occupational Status: A Retrospective Longitudinal Study, 2021, Chalder et al

 

Is there an Australian patient association who signed the petition who could organise allies there to send this as evidence of it not being withdrawn causing active harm?

As a complaint to the Charity Commission, if that is the basis on which they act.


It feels clear they are leaving it there (when it shouldn't have even been there in the first place) as long as possible in order for this sort of option to be taken by those who want to sell propaganda or old harmful treatments to maintain their status quo and 'fish for' dodge evidence to make it seem their argument has current basis.

The same Paul Glaszou who is part of this page: Chapter 15: Interpreting results and drawing conclusions | Cochrane Training

 

Worse than stuck in the dark ages. It’s sneakily trying to entrench the dark ages.

There are so many bad bits here (like they just rename GET as “incremental physical activity, and they still cite the PACE trial manual as a guide for how to implement GET), but the bit that really got under my skin, was the framing of advocacy.

This is in the Adverse effects/precautions section:

So the caution is: Beware advocacy!

 

"However, this finding is believed to be due to inappropriately planned or progressed exercise programs, possibly undertaken independently or under supervision from a person without appropriate experience."

This commonly repeated assertion makes no sense. Patients only seem to be subjected to GET by official clinics, not maverick therapists. Many of us have harmed ourselves by attempting to push through, as we had no support or information, but that's not GET. Those making this assertion of poor practice were those running or working in the clinics, or close associates, so essentially criticising themselves.

 

Apart from the obvious ethical problem of providing an entire service based on a single Trial which has been internationally debunked (the fact that it has still not be retracted is in itself a cause of iatrogenic harm as evidenced in this thread, ongoing), why are they unable to rely on their own systems evidence?

Are they recording clinical incidents of harm following therapy on Datix? Clinical incident management – Purpose and principles (health.wa.gov.au)

"A clinical incident is an event or circumstance resulting from health care provision (or lack thereof) which could have or did lead to unintended or unnecessary physical or psychological harm to a patient.

The purpose of clinical incident management is to ensure implementation of consistent and accountable processes and systems for the management of clinical incidents with the goal to prevent harm to patients and improve patient safety."

I've been looking into this system recently because I wondered if, during the NICE review process, to counter patient safety surveys showing harms (which they claim NICE placed over reliance on) whether or not the Royal Collages produced a systems report from Datix to show lack of harm, which the NHS use and has done since, I think, 1986. UK based company.


4 June 2020 - An example of it's use: Lessons learned: using adverse incident reports to investigate the characteristics and causes of prescribing errors (bmj.com)


"This study has a number of limitations. First, it includes only one NHS board. Thus, findings are not necessarily generalisable. However, the methodology is transferable, given the ubiquity of incident reporting systems. Second, analysis of the presence and contribution of error producing factors depended on both the level of detail in the reporter’s description of the incident (which varied), and subjective evaluation by the researcher, risking interpersonal variation and bias. Third, evidence suggests that incident-reporting systems significantly under-report the frequency of prescribing errors.7 Furthermore, bias may exist in the type and severity of patient safety incidents reported. Thus, the analysed incidents are unlikely to represent the rates or characteristics of all prescribing errors locally."


But NHSE (or any government) using Datix or similar incident reporting systems, must be capable of requesting this information be produced locally and then produce a country wide report on ME/CFS - both on therapy and hospitalizations.


If any healthcare authority is unable to do this, then that is not only evidence of systemic non-reporting of harm, but may also be clear evidence that the NHS treats this illness as a psychogenic one and that any harm is self inflicted by non adherence to therapy management/rehabilitation techniques.


Examples in the UK


Customising RLDatix creates greater efficiencies for University Hospitals Bristol. | RLDatix


incident-reporting.pdf (rcpsych.ac.uk)


RLDatix & West London NHS Trust


10866.pdf (shropscommunityhealth.nhs.uk)

What happens when I submit a Datix? (scot.nhs.uk)


Severity Mapping and Examples (england.nhs.uk)