Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

Trish said:
I think it's all pretty much outside Hilda's control on timetables, details etc. The speed or lack of it seems to be down to when editors get around to talking to her and making decisions. So slower than a snail.
Click to expand...

I agree that Hilda is in an invidious position, but the current update, though drafted and to her credit very much pushed through by Hilda, is now an official statement by Cochrane, unlike Hilda’s personal blog, and so should be responded to as representing Cochrane’s current position.

Also it reveals nothing about what the group drafting the actual new review has done, is currently doing or what their planned timescale is.

[note added - “The views expressed in this report are those of the author, and are not necessarily shared by the Independent Advisory Group (IAG), the review team, or Cochrane.” I missed this caveat when I drafted this post, so Cochrane are not even standing behind this update by Hilda even though she had to jump through their hoops to get it put up on the site.]
 
Last edited:
Some day, we may even get updates about things that happened, rather than about how things in the future, which were supposed to have already happened, may happen, some day.

Cochrane simply continues to demonstrate its uselessness and inability to get the most basic things right.
 
Peter Trewhitt said:
Interesting that there is no mention of the year or so delay due to objections by undisclosed parties to any replacement of the current 2019 version of the CFS Exercise Review, despite it being already recognised at publication by Cochrane to be flawed failing to address the recognised concerns about the draft it replace[d] some of which, but not all, were raised in [the] added editorial note.

Also it was not very explicit concerning the streamlining of Cochrane’s complaints procedures or if the new process will look again at the extant complaints that Cochrane has declined to address. Hopefully complaints about the Cochrane processes in relation to their overall handling of the 2019 review will not just be handed down to the IAG which has no authority in relation to senior Cochrane officials. Certain I feel now our complaints and the issue [of] withdrawing the 2019 Review immediately should now be dealt with at a Trustee level.
Click to expand...

There is some clarification of this in the latest response from Cochrane to out letters, posted here:
https://www.s4me.info/threads/petit...rapy-for-cfs-review.35109/page-23#post-508710
 
Jonathan Edwards said:
The description 'medical practitioner working with patients' is odd.
"Working with patients' tends to be an American phrase used to describe shopping around by physicians for answers to a person's medical problems. I am not quite sure why she has used the phrase. I have worked with PWME for about 3 hours a day seven days a week for ten years but am probably not what is in mind. I am not quite sure what working with patients amounts to otherwise if we have no proven treatments.
Click to expand...
It could simply mean clinicians who care for people with ME in their medical practice. Lily Chu is on the IAG and is an MD but she does not have a clinical practice so is not "working with patients" in that sense.
 
Medfeb said:
It could simply mean clinicians who care for people with ME in their medical practice.
Click to expand...

Judging from the other clues we have I presume this is correct.

I find it hard to see why such people need be on an independent advisory group. The concept of 'stakeholder' here continues to worry me. If it means a patient whose interest is in getting the right treatment it makes sense. But in what sense is a medical practitioner a 'stakeholder' other than in making money from using treatments that might not be valid? As a physician working for a government health system I did not consider myself a 'stakeholder'. The whole point of Cochrane was, I thought, to exclude stakeholding qua vested interest.

I was not allowed to sit on the NICE committee because I was not a 'stakeholder' in this sense, despite Ilora Finlay having neatly explained why members should not be such stakeholders. It seems fairly clear that I would not fit the bit here either!
 
Trish said:
I have just written to Hilda with a couple of suggestions of doctors who treat pwME and who people here respect. I hope she can get one of them.
Click to expand...
thanks for doing that.
It'd be amazing if they got someone good.

But i'd say thats almost certainly not what is being looked for. I'd say what is being looked for is someone who already believes in, is a huge fan of, and uses GET in the practice "working with" CFS patients. Someone who knows "from their own experience" that 'it works for some', and therefore wont be too 'biased' towards needing the evidence to be of decent quality in order to recommend it.

I assume the risk of perceived bias is the same as the panic over the "bias" in the NICE committee, when 5 patien reps on a committee of 21 was clearly a massive bias towards patient opinion.
 
Jonathan Edwards said:
I thought Colquhoun was being a bit sneaky with 'no very effective treatments'. Being the sceptic he is why didn't he say we do not know if any treatments are effective.

I am also not sure about the arbitrary bit. High blood pressure is very heterogeneous but the definition is not arbitrary - it is a high blood pressure.
Click to expand...
I’m not sure if this is the right thread to post this but David Colquhoun has commented on PACE etc again:
https://twitter.com/user/status/1854540941001957851


https://twitter.com/user/status/1854659212388757543


https://x.com/david_colquhoun/status/1854862227456573538?s=46
Click to expand...


David Colquhoun: “Not many people think that the PACE trial was conclusive. But that is not, I think, sufficient reason to refer to "the abuse of people with ME by the medical establishment". The fact is that nobody has any idea what causes ME/CFS and nobody knows how to ameliorate it.”

“It is reprehensible that some people don't admit that this is the case. Excessive hype about cures that don't work leads to disappointed patients resorting to quacks, who have no compunction about making excessive claims.”
 
Last edited:
David seems to have missed the point that the abuse of people with ME/CFS by the medical establishment goes way beyond people not admitting they don't know how to ameliorate ME/CFS. There was of course direct verbal abuse of the patient community in lectures given by White, Sharpe, and others and spreading smears throughout the media.

And it wassn't the hype about cures sending people to quacks that was the problem. The quacks were already there. The problem was making people worse and misrepresenting evidence for personal gain.

It is a pity that Colquhoun seems happy to team up with the HealthWatch lot. As Caroline says they were the opposite of helpful relating to ME/CFS. Nick Ross was sympathetic but the medics on HealthWatch are a very motley crowd, including dyed in the wool BPS members.
 
cassava7 said:
To date, in the context of ME/CFS, comments on the "behavior of a minority" have come from proponents of exercise and CBT and their only purpose has been to stifle scientific criticism of their research -- and the harms of these treatments --. This has not been limited to the UK but has happened internationally (e.g. in Norway). While judicial scrutiny found these claims to be baseless, they have been amplified by public relations campaigns, and have been used to criticize the update of the Cochrane review.
Click to expand...

Just stumbled across that post quoted elsewhere on the forum and thought saving a screenshot of the linked tweet of Clare Gerada could be useful:

"withdrawal decision sets a worrying precedent for scientific evidence being over-ridden by the opinions of activists. (Colin Blakemore). > sad we are entering an era of bullying scientists when lobby groups disagree with the results."

(Clare Gerada on Twitter, 2018-10-17)

SCREEN~1.PNG

Edit: Link to the Reuters piece quoting Blakemore doesn't work.

S4ME thread thread on article and quotes here.

Blakemore quotes:

https://www.s4me.info/threads/cochrane-me-cfs-get-review-temporarily-withdrawn.6225/#post-112768

"Colin Blakemore, a professor of neuroscience and philosophy at London University’s School of Advanced Studies, said the withdrawal decision set a worrying precedent for scientific evidence being over-ridden by the opinions of activists.

"The withdrawal would also be 'a departure from the principle that has always guided Cochrane reviews — that they should be based on scientific and clinical evidence ... but not influenced by unsubstantiated views or commercial pressures.' "
 
Last edited:
MSEsperanza said:
Just stumbled across that post quoted elsewhere on the forum and thought saving a screenshot of the linked tweet of Clare Gerada could be useful:

"withdrawal decision sets a worrying precedent for scientific evidence being over-ridden by the opinions of activists. (Colin Blakemore). > sad we are entering an era of bullying scientists when lobby groups disagree with the results."

(Clare Gerada on Twitter, 2018-10-17)

View attachment 24436
Click to expand...

So ‘bad science from purported experts should always prevail over correct reasoning from patients’ just about sums up the arrogance and self interested positioning of this narrow clique.
 
Peter Trewhitt said:
So ‘bad science from purported experts should always prevail over correct reasoning from patients’ just about sums up the arrogance and self interested positioning of this narrow clique.
Click to expand...
I don’t get which but is supposed to be from Colin Blakemore or who he is

17th oct 2018 was this when Larun was flagged for withdrawal ?

agree that it’s important Clare Gerada and her part played doesn’t keep getting left out of historical things
 
You must log in or register to reply here.
Back
Top Bottom