Post by Admin on Aug 20, 2024 15:29:48 GMT
Petition update
Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review
August 2024 update
www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review/u/32834135
M. Candish
Christchurch, New Zealand
20 Aug 2024
Thanks to our supporters
Thank you to the 11,300 people supporting the campaign from 76 countries.
Thank you also to The Grace Charity for M.E. for adding their support to this campaign. We now have 76 organisations calling for the 2019 review to be removed, including most national ME/CFS charities. You can find the full list here. If an organisation you are connected with isn't listed, please tell them about this campaign.
People with ME/CFS-like Long Covid are also being targeted with psychobehavioural therapies such as graded exercise. It is important that Long Covid organisations understand that there is no credible evidence to support the use of graded exercise therapy in post-infection fatigue syndromes. If you know of a Long Covid organisation, please consider informing them about this campaign.
*******
Our latest letter to Cochrane
On the 7th of August, the Science for ME forum committee sent another letter to Cochrane summarising our efforts over the last 11 months to communicate with them about the 2019 Larun et al review. You can read the letter here.
In the letter, we asked a number of questions about Cochrane's priorities and the status of the formal complaints we submitted 9 months ago. We noted that if Cochrane continues to not take action, "we will be forced to conclude that Cochrane does not take its own policies and charitable objectives seriously and to consider our next steps, including taking our complaints to other bodies". We have not yet had anything more than an acknowledgement of receipt of the letter.
*******
The broken promises continue
There are so many, that we have decided to just cover two in each of our updates. In the last update we talked about these two:
* Broken promise 1. Resumption of monthly updates from the Independent Advisory Group (IAG) - still broken
* Broken promise 2. Revision of the editorial note on the 2019 Cochrane Exercise Therapy Review - still broken
Here are another two:
* Broken promise 3. New IAG member
In the December 2023 IAG update, Hilda Bastian invited nominations for a new position in the IAG specifically for a doctor who treats people with ME/CFS. While we don't see the expansion of the IAG as real progress, it is possible that while this vacancy remains, the IAG will not function. There has been no appointment announced.
* Broken promise 4. Public consultation on a report on problems with previous reviews
In the June 2021 IAG update Hilda Bastian promised a public consultation process on a draft document summarising the criticisms made of the current and previous versions of the Cochrane Larun et al review "in the coming weeks". This paper was to inform the new review process, including the protocol. In the November 2023 IAG update Hilda again promised this public consultation process. In the December 2023 update Hilda said that the consultation would occur in early weeks of the new (2024) year. To date, there has been no such consultation.
*******
The harm continues
As we noted last time, while Cochrane continues to obfuscate and delay, people continue to be harmed by their faulty advice.
Since our last update, the Royal Australian College of General Practitioners revised their HANDI guidance on GET for CFS. The College continues to promote GET as a treatment for ME/CFS, citing only the flawed PACE Trial and the Larun et al review as evidence. This is the advice on treatment that Australian GPs are being given:
"Exercise and physical activity considered [sic] a safe intervention with numerous health benefits, including physical and mental health. However, participating in an uncontrolled manner can increase symptoms temporarily."
Paul Glasziou, a Professor of Evidence-Based Medicine is the person in charge of the RACGP's HANDI guidance including this woefully inaccurate advice on GET. He advised on the 2019 Larun et al Cochrane Review and has a long involvement with Cochrane.
*******
Thanks again for your support as we continue to try to stop the harm. Please do keep sharing the link to the petition.
If you would like to talk about this issue you are very welcome to join us at the Science for ME forum.
The Science for ME committee
Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review
August 2024 update
www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review/u/32834135
M. Candish
Christchurch, New Zealand
20 Aug 2024
Thanks to our supporters
Thank you to the 11,300 people supporting the campaign from 76 countries.
Thank you also to The Grace Charity for M.E. for adding their support to this campaign. We now have 76 organisations calling for the 2019 review to be removed, including most national ME/CFS charities. You can find the full list here. If an organisation you are connected with isn't listed, please tell them about this campaign.
People with ME/CFS-like Long Covid are also being targeted with psychobehavioural therapies such as graded exercise. It is important that Long Covid organisations understand that there is no credible evidence to support the use of graded exercise therapy in post-infection fatigue syndromes. If you know of a Long Covid organisation, please consider informing them about this campaign.
*******
Our latest letter to Cochrane
On the 7th of August, the Science for ME forum committee sent another letter to Cochrane summarising our efforts over the last 11 months to communicate with them about the 2019 Larun et al review. You can read the letter here.
In the letter, we asked a number of questions about Cochrane's priorities and the status of the formal complaints we submitted 9 months ago. We noted that if Cochrane continues to not take action, "we will be forced to conclude that Cochrane does not take its own policies and charitable objectives seriously and to consider our next steps, including taking our complaints to other bodies". We have not yet had anything more than an acknowledgement of receipt of the letter.
*******
The broken promises continue
There are so many, that we have decided to just cover two in each of our updates. In the last update we talked about these two:
* Broken promise 1. Resumption of monthly updates from the Independent Advisory Group (IAG) - still broken
* Broken promise 2. Revision of the editorial note on the 2019 Cochrane Exercise Therapy Review - still broken
Here are another two:
* Broken promise 3. New IAG member
In the December 2023 IAG update, Hilda Bastian invited nominations for a new position in the IAG specifically for a doctor who treats people with ME/CFS. While we don't see the expansion of the IAG as real progress, it is possible that while this vacancy remains, the IAG will not function. There has been no appointment announced.
* Broken promise 4. Public consultation on a report on problems with previous reviews
In the June 2021 IAG update Hilda Bastian promised a public consultation process on a draft document summarising the criticisms made of the current and previous versions of the Cochrane Larun et al review "in the coming weeks". This paper was to inform the new review process, including the protocol. In the November 2023 IAG update Hilda again promised this public consultation process. In the December 2023 update Hilda said that the consultation would occur in early weeks of the new (2024) year. To date, there has been no such consultation.
*******
The harm continues
As we noted last time, while Cochrane continues to obfuscate and delay, people continue to be harmed by their faulty advice.
Since our last update, the Royal Australian College of General Practitioners revised their HANDI guidance on GET for CFS. The College continues to promote GET as a treatment for ME/CFS, citing only the flawed PACE Trial and the Larun et al review as evidence. This is the advice on treatment that Australian GPs are being given:
"Exercise and physical activity considered [sic] a safe intervention with numerous health benefits, including physical and mental health. However, participating in an uncontrolled manner can increase symptoms temporarily."
Paul Glasziou, a Professor of Evidence-Based Medicine is the person in charge of the RACGP's HANDI guidance including this woefully inaccurate advice on GET. He advised on the 2019 Larun et al Cochrane Review and has a long involvement with Cochrane.
*******
Thanks again for your support as we continue to try to stop the harm. Please do keep sharing the link to the petition.
If you would like to talk about this issue you are very welcome to join us at the Science for ME forum.
The Science for ME committee