This would seem to be willful misunderstanding--responding to a point that wasn't made to get out of actually responding to the point that was made. ADDED: I see this point has been made.
2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles
- Thread starter S4ME News
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This would seem to be willful misunderstanding--responding to a point that wasn't made to get out of actually responding to the point that was made. ADDED: I see this point has been made.
Snow Leopard
Senior Member (Voting Rights)
It's easy when you just deny it.
Caroline Struthers
Senior Member (Voting Rights)
Just for added fun, here's the latest correspondence I had with Wiley who said they were going to investigate my allegation of misconduct against the Editor in Chief. Not sure whether I will receive a response to my latest clarification. I have now explained about 17 times that Cochrane did not investigate the misconduct allegation because the Cochrane co-chairs decided that this allegation conveniently "overlapped" with an already investigated complaint that the review contained errors.
acrobat.adobe.com
Adobe Acrobat
Peter T
Senior Member (Voting Rights)
Just for added fun, here's the latest correspondence I had with Wiley who said they were going to investigate my allegation of misconduct against the Editor in Chief. Not sure whether I will receive a response to my latest clarification. I have now explained about 17 times that Cochrane did not investigate the misconduct allegation because the Cochrane co-chairs decided that this allegation conveniently "overlapped" with an already investigated complaint that the review contained errors.
Adobe Acrobat
Cochrane’s motto should be:
‘Deny, deflect, ignore’
and everyone around them seems to be enabling this. (Though to be fair Hilda Bastian has now issued some protest, once Cochrane shamelessly abandoned her.)
I haven't found a mention of this on the thread (when searching for James C Robertson) but a most absurd response to Chronic fatigue syndrome: Outcry over Cochrane decision to abandon review of exercise therapy has been published
www.bmj.com
Dear Editor,
The National Institute of Clinical Excellence ( Nice ) is right re fibromyalgia and ME in that physical lifestyle / ergonomics 24/7 which includes sleep style is the prime cause.
Scientifically this includes biomechanics and ergonomics and these apply to sleepstyle as much as to work and leisure. Children need to be taught and a consensus regarding detail is essential. Patterns of rest and movement are the key to prevention, as is knowledge of what can go wrong.
Just as for passing a driving test, everyone needs to know how to drive their carcasses /bodies and minds through each day and night. This whether they are managing a work force, or a school PT or biology teacher or a parent.
People with discomfort and pain may find that certain longer held postures may promote comfort and allow work and daily obligatory tasks to be performed, but on remobilising pain may occur eg on the walk to get to car train or bus. If these are crowded so standing may occur, sitting is avoided and so movement and posture changes while on the feet avoids neuropraxia. If sat on a seat which is well cushioned and upright then the sciatic nerves may be parked on the stretch. If the passenger then reads his paper or mobile with his forearms resting on his lap and head flexed the central nervous system and the peripheral will be stretched. If sat too still for too long a neuropraxia may occur and the return of the blood supply whille walking may be painful and clumsiness /accident proness may occur. For example a knee might give way and flex unexpectedly, and so avoid a pain but risk a fall and a sprained ankle.
James C Robertson
Ret. Consultant in Rheumatology and Rehabilitation, Salisbury /Southampton
Still a member of BMA, FRCP
Salisbury
Chronic fatigue syndrome: Outcry over Cochrane decision to abandon review of exercise therapy
A decision to cancel a planned update of a Cochrane systematic review of exercise therapy for chronic fatigue syndrome has met with anger from a group advising the review and the patient community. The decision has reignited calls for the review,1 which includes studies only up to May 2014, to...
Re: Chronic fatigue syndrome: Outcry over Cochrane decision to abandon review of exercise therapy
Dear Editor,
The National Institute of Clinical Excellence ( Nice ) is right re fibromyalgia and ME in that physical lifestyle / ergonomics 24/7 which includes sleep style is the prime cause.
Scientifically this includes biomechanics and ergonomics and these apply to sleepstyle as much as to work and leisure. Children need to be taught and a consensus regarding detail is essential. Patterns of rest and movement are the key to prevention, as is knowledge of what can go wrong.
Just as for passing a driving test, everyone needs to know how to drive their carcasses /bodies and minds through each day and night. This whether they are managing a work force, or a school PT or biology teacher or a parent.
People with discomfort and pain may find that certain longer held postures may promote comfort and allow work and daily obligatory tasks to be performed, but on remobilising pain may occur eg on the walk to get to car train or bus. If these are crowded so standing may occur, sitting is avoided and so movement and posture changes while on the feet avoids neuropraxia. If sat on a seat which is well cushioned and upright then the sciatic nerves may be parked on the stretch. If the passenger then reads his paper or mobile with his forearms resting on his lap and head flexed the central nervous system and the peripheral will be stretched. If sat too still for too long a neuropraxia may occur and the return of the blood supply whille walking may be painful and clumsiness /accident proness may occur. For example a knee might give way and flex unexpectedly, and so avoid a pain but risk a fall and a sprained ankle.
James C Robertson
Ret. Consultant in Rheumatology and Rehabilitation, Salisbury /Southampton
Still a member of BMA, FRCP
Salisbury
Utsikt
Senior Member (Voting Rights)
I think he should enjoy his retirement. Maybe he can teach the ducks in the park how to waddle properly?
rvallee
Senior Member (Voting Rights)
Aside from being a truly ridiculous level of both weird and wrong, what the hell does it even have to do with the topic at hand?I haven't found a mention of this on the thread (when searching for James C Robertson) but a most absurd response to Chronic fatigue syndrome: Outcry over Cochrane decision to abandon review of exercise therapy has been published
Chronic fatigue syndrome: Outcry over Cochrane decision to abandon review of exercise therapy
A decision to cancel a planned update of a Cochrane systematic review of exercise therapy for chronic fatigue syndrome has met with anger from a group advising the review and the patient community. The decision has reignited calls for the review,1 which includes studies only up to May 2014, to...
Re: Chronic fatigue syndrome: Outcry over Cochrane decision to abandon review of exercise therapy
Dear Editor,
The National Institute of Clinical Excellence ( Nice ) is right re fibromyalgia and ME in that physical lifestyle / ergonomics 24/7 which includes sleep style is the prime cause.
Scientifically this includes biomechanics and ergonomics and these apply to sleepstyle as much as to work and leisure. Children need to be taught and a consensus regarding detail is essential. Patterns of rest and movement are the key to prevention, as is knowledge of what can go wrong.
Just as for passing a driving test, everyone needs to know how to drive their carcasses /bodies and minds through each day and night. This whether they are managing a work force, or a school PT or biology teacher or a parent.
People with discomfort and pain may find that certain longer held postures may promote comfort and allow work and daily obligatory tasks to be performed, but on remobilising pain may occur eg on the walk to get to car train or bus. If these are crowded so standing may occur, sitting is avoided and so movement and posture changes while on the feet avoids neuropraxia. If sat on a seat which is well cushioned and upright then the sciatic nerves may be parked on the stretch. If the passenger then reads his paper or mobile with his forearms resting on his lap and head flexed the central nervous system and the peripheral will be stretched. If sat too still for too long a neuropraxia may occur and the return of the blood supply whille walking may be painful and clumsiness /accident proness may occur. For example a knee might give way and flex unexpectedly, and so avoid a pain but risk a fall and a sprained ankle.
James C Robertson
Ret. Consultant in Rheumatology and Rehabilitation, Salisbury /Southampton
Still a member of BMA, FRCP
Salisbury
Dude clearly just wanted to rant a bit, although I can't make any sense of what he's trying to say, it's seriously embarrassing to be this irrelevant. This is one of those cases where BMJ should have just politely refused for being oddly off-topic. Or maybe published it as some standalone rant, for some reason.
I don't even know what the equivalent would be for a programmer. It's just stupendously impertinent.
It is a bit obscure. His main topic seems to miss some logical consistencies such as
his analogy requires the bus to be so crowded someone has to stand to avoid ‘neuropraxia’
but then he suggests one gets out what I assume is a big broadsheet newspaper instead of a mobile ad it will stretch things out nicely. Not many people would get away with that on a crowded bus whilst standing to wingspan over a metre with a big face level newspsper ignorabt of other standees? Even if the lack of free hand to hold on whilst the bus stops and starts was somehow not an issue
All of course ironically I assume along the lines of what an eccentric older man might do particularly if they’d never actually been on a bus being ‘good’ but the alternative ‘the cause of problems today’ feel to it ?
It’s got nothing to do with me/cfs at all other than the need to take the opportunity to tell one’s random story and it merely just showing personal top tips from a somewhat sheltered slice of life instead of being medical reminds me of some of the Riley stuff where he wasn’t just making taunts/jibes ?
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Merged thread
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https://absolutelymaybe.plos.org/20...fs-tells-us-about-the-cochrane-collaboration/
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https://absolutelymaybe.plos.org/20...fs-tells-us-about-the-cochrane-collaboration/
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S4ME got a mention:
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before I've got on with reading this it has reminded me that this was released on the last day before recess for xmas.
And of course the implementation plan was the last day before parliamentary recess this summer.
It seems a pattern and I haven't looked any further.
1. is there co-ordination going on for this choice of dates being on the last day before a big parliament break happenning for ME/CFS
2. has this 'habit' ever happened for anything else? particularly any other medical things?
And of course the implementation plan was the last day before parliamentary recess this summer.
It seems a pattern and I haven't looked any further.
1. is there co-ordination going on for this choice of dates being on the last day before a big parliament break happenning for ME/CFS
2. has this 'habit' ever happened for anything else? particularly any other medical things?
Nightsong
Senior Member (Voting Rights)
The "national licence" that the British Government pays for (for everyone in UK IP ranges to be able to freely access Cochrane's content) is clearly the largest source of its income. At present the universities and NHS bodies don't need to pay for access to the Cochrane Library - as they pay academic publishers for access to other journals - because of this arrangement, which is administered by NICE. Hilda also discussed this in her previous blog:
British taxpayers absolutely should not be paying for this.
NICE is obviously an arms-length quango but this is clearly going to be something authorised by the Department for Health. And, as Hilda mentions, New Zealand are ending a similar arrangement with Cochrane very soon. Perhaps if some of the ME patient community's friends in Parliament could be persuaded to raise Cochrane's diminishing standards, its behaviour towards patients, and the other Cochrane scandals such as the masking controversy - with DHSC. . .
British taxpayers absolutely should not be paying for this.
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Thank you, @Hilda Bastian, for not letting this go.
Every time I start thinking the 'authorities' couldn't get any worse, there they go and prove me wrong. Again.
Every time I start thinking the 'authorities' couldn't get any worse, there they go and prove me wrong. Again.
hotblack
Senior Member (Voting Rights)
It’s very common for all sorts to go out on the last day(s) before recess. Not a good practice, but a common one.
Great to see this followup from Hilda.
Neither should the taxpayers in countries and states still paying Cochrane for access to the Library.
I've made a post on the Cochrane's Funders thread, listing out the funders of these regional access arrangements.
Neither should the taxpayers in countries and states still paying Cochrane for access to the Library.
I've made a post on the Cochrane's Funders thread, listing out the funders of these regional access arrangements.
Yes. Cochrane's republishing of the review with the 2024 date coincides with the (3 days before or after) coroner's 56 day deadline to respond the PFD Report on Maeve Boothby O'Neill. Although not a recipient of the PFD, this inexplicable event landed within the same timeframe.
This follows a now clearly identifiable, recurring pattern surrounding all significant milestones in ME/CFS - unique to this illness. It's the mechanism employed to support the political/medical agenda for the last 30 years.
The core reason no progress has been made up to and including the Final Delivery Plan which is an official government policy document.
The complaint I'm finalising lays this bear with supporting evidence to this assertion.
rvallee
Senior Member (Voting Rights)
Rather strong words, given Bastian's generally very moderate, even generous, attitudes towards Cochrane. She really seems to have genuinely tried her best, but with an organization that never had any intentions of doing the right thing, it was an impossible task. I really doubt this is confined to this review, it's almost guaranteed that those problems are common, even a feature of evidence-based medicine, which seems to operate within a parallel worldview.
I think it's more than fair to say that this was never Cochrane's true mission. To me it seems more like a high school clique, only exists for its own sake and interests.
I really wonder if they get that. I don't think they do. They are really not thinking of the consequences of them being wrong here.
I think that up-to-date also works this way? It's not any better, that's for sure. Not much point in having up-to-date reviews of evidence that aren't actually up-to-date and distort the evidence while featuring heavy bias.
Because of the secrecy around the entire process, it was always impossible to say exactly who did their job, and who didn't, and it's clear that the fault is 100% with Cochrane here. It looks as if they assumed that Bastian would be a good team player, eventually side with them and do a proper cover-up, but she is better than this. Thank you for not giving up Hilda.