Thank you. I think we need to coordinate it privately. I haven't discussed with the committee how we do this. I'll add your name to people interested in helping.
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Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review
- Thread starter Hutan
- Start date
rvallee
Senior Member (Voting Rights)
I don't really see how we could present this to editors in a way that would make them understand why it even matters.
Mostly a bunch of "so what?" reactions. This is why Cochrane and others do this. They know they can do whatever they want to us, since no one cares what happens to us. Maybe the only angle that would work is in relation to Long Covid, but even then most people connected to the health care industry 'know' that exercise rehabilitation is the treatment so why does this even matter here?
We can really only leave the biggest evidence trail so that once suspension of disbelief we throw it back in their faces when they inevitably go with the "oh we didn't know, we swears!" pathetic excuses. Nothing we can do now will make a difference now. This is for later, to show their fanatical intransigence and the unfitness of those systems to take care of people, how irrationally ideological they can be while ignoring what's right in front of them.
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The petition has now reached 12,001 signatures 
Peter T
Senior Member (Voting Rights)
The petition has now reached 12,001 signatures
It is good seeing lots of new comments too.
Andy
Retired committee member
Now at 12,088 signatures.
Petition main page, https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review
Petition main page, https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review
I have just posted this on Hilda's talkpage:
trishrhymes
October 18, 2024 at 8:37 pm
Your comment is awaiting moderation.
Dear Hilda,
I hope you are well.
Is there any news likely to be forthcoming in the near future? I note that on July 29th you said:
“(Making steady progress, and getting closer to having a report to publish.)”
_____________
I am writing today to draw attention to this article in the Guardian by investigative journalist George Monbiot:
https://www.theguardian.com/comment...eve-bothby-oneill-me-chronic-fatigue-syndrome
It is worth reading the whole article and following all the links (including to an article that quotes the late Maeve Boothby O’Neil’s own words about her and others’ ME/CFS worsening following CBT/GET).
In particular, with reference to Cochrane’s responses to the S4ME committee letters that the subject of withdrawal of the Larun review has been investigated once and is closed, their refusal to tell us whether they have reopened this decision following our complaints, and your saying you understand their reasons (which you still haven’t explained), I quote Monbiot’s final paragraphs:
On the NICE 2021 ME/CFS guideline, Monbiot concludes:
“In 2021 it rescinded its recommendation of these treatments. This is how science should work: improvement by scrutiny and challenge.”
He then goes on to expand on this:
“But the story spread so widely by the media – that ME/CFS patients were irrationally refusing treatment and abusing those who offered it – stuck, in the NHS and beyond. Medicine gave way to groupthink.
Here are some things that should not need stating. Scientists and those who champion them should never close ranks against empirical challenge and criticism. They should not deny requests for data, should not shore up disproven claims, should not circle the wagons against legitimate public challenge. Above all, those who suffer the most should be listened to the most.”
I see this as a direct rebuke to all those still clinging to the CBT/GET approach despite clear evidence that they don’t work and are harmful. That includes Cochrane.
Best wishes,
Trish Davis
October 18, 2024 at 8:37 pm
Your comment is awaiting moderation.
Dear Hilda,
I hope you are well.
Is there any news likely to be forthcoming in the near future? I note that on July 29th you said:
“(Making steady progress, and getting closer to having a report to publish.)”
_____________
I am writing today to draw attention to this article in the Guardian by investigative journalist George Monbiot:
https://www.theguardian.com/comment...eve-bothby-oneill-me-chronic-fatigue-syndrome
It is worth reading the whole article and following all the links (including to an article that quotes the late Maeve Boothby O’Neil’s own words about her and others’ ME/CFS worsening following CBT/GET).
In particular, with reference to Cochrane’s responses to the S4ME committee letters that the subject of withdrawal of the Larun review has been investigated once and is closed, their refusal to tell us whether they have reopened this decision following our complaints, and your saying you understand their reasons (which you still haven’t explained), I quote Monbiot’s final paragraphs:
On the NICE 2021 ME/CFS guideline, Monbiot concludes:
“In 2021 it rescinded its recommendation of these treatments. This is how science should work: improvement by scrutiny and challenge.”
He then goes on to expand on this:
“But the story spread so widely by the media – that ME/CFS patients were irrationally refusing treatment and abusing those who offered it – stuck, in the NHS and beyond. Medicine gave way to groupthink.
Here are some things that should not need stating. Scientists and those who champion them should never close ranks against empirical challenge and criticism. They should not deny requests for data, should not shore up disproven claims, should not circle the wagons against legitimate public challenge. Above all, those who suffer the most should be listened to the most.”
I see this as a direct rebuke to all those still clinging to the CBT/GET approach despite clear evidence that they don’t work and are harmful. That includes Cochrane.
Best wishes,
Trish Davis
Peter T
Senior Member (Voting Rights)
Let’s hope it actually makes its way through Hilda’s moderation process as she seems to have been sitting on comments for the last few months.
It will be ten months since the last “update” in the next couple of days……………………………
rvallee
Senior Member (Voting Rights)
Technically we got, what, one actual update? Before the 'hiatus', when we heard a few things about people who got nominated, but then we never heard anything about them other than trying to add another member. Everything else was just using more words than necessary to say things could happen in the future, none of which have actually happened.
Not a single real actual update as far as I'm concerned. A very clear display of blatant disrespect.
Hence the description as “update”
Andy
Retired committee member
Now at 12,111 signatures.
Petition main page, https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review
Petition main page, https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review
And again I drop a few words into the void that is Hilda's talk page:
trishrhymes
October 22, 2024 at 1:59 am
Your comment is awaiting moderation.
Hilda,
Another article for you to read and pass on to the IAG and people at Cochrane, please.
https://theconversation.com/ignored...he-origins-of-a-modern-medical-scandal-241149
In despair,
Trish Davis
trishrhymes
October 22, 2024 at 1:59 am
Your comment is awaiting moderation.
Hilda,
Another article for you to read and pass on to the IAG and people at Cochrane, please.
https://theconversation.com/ignored...he-origins-of-a-modern-medical-scandal-241149
In despair,
Trish Davis
I've been regularly sending similar emails to the Cochrane contact person for my country - e.g. petition updates and links to the petition. If you (the S4ME members) have the capacity to do so, you could find out who the Cochrane contact person for your country is, and contact them.
At the very least, when the history of this is written, the officers of Cochrane will not be able to say 'we didn't know'.
At the very least, when the history of this is written, the officers of Cochrane will not be able to say 'we didn't know'.
Are there any billboards outside their offices?
Peter T
Senior Member (Voting Rights)
Cochrane UK has been shut down, so I don’t know that there would be any point of contact here other than the headquarters which are still in the UK.
https://www.cochrane.org/about-us/our-global-community/geographic-groups
Looks like there are contacts for a lot of countries including the UK.
Looks like there are contacts for a lot of countries including the UK.
The UK listing includes a link to their webpage which says Cochrane UK is now closed, so presumably the contact details are out of date.
Even as Cochrane falls to bits in some places, seemingly unable to effectively deal with complaints, the Larun et al review is still there causing problems.
Cochrane Australia is based at Monash University.
There's a contact in Austria - maybe someone active in the We&ME Foundation would have the capacity to go see them and explain what is happening.
I'm sure it would take for change is a single smart person with influence in Cochrane to take the time to understand the issues and start asking questions.
I suppose we could send a letter to all the listed contacts, but it really needs people who know, or can get to know, the Cochrane country contacts personally.
Cochrane Australia is based at Monash University.
There's a contact in Austria - maybe someone active in the We&ME Foundation would have the capacity to go see them and explain what is happening.
I'm sure it would take for change is a single smart person with influence in Cochrane to take the time to understand the issues and start asking questions.
I suppose we could send a letter to all the listed contacts, but it really needs people who know, or can get to know, the Cochrane country contacts personally.
That remains one of our most powerful tools at this stage. Getting stuff on the relevant public record, so nobody in the relevant positions of power can say they were not informed about the problem.
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