I think the massive campaign to preserve the Larun review may be in part about what is now necessary to obtain ethical approval for trials, and MAGENTA provides an interesting example of that. Looking back at some of the MAGENTA related documentation, the Cochrane review seems to be particularly...
I was able to skim a little bit the part in this thread about directness/indirectness in PACE.
I have often struggled to grasp why the fact that PEM wasnt req'd isnt a key issue, so have been really grateful to @Jonathan Edwards & @Utsikt & others for discussing it here.
The RA/pain killers...
Gives some insight into Clinical effectiveness of an online supervised group physical and mental health rehabilitation programme for adults with post-covid-19 condition REGAIN study: multicentre randomised controlled trial (2024, BMJ)
Has somebody done a crosscomparison between CBT/GET and placebo in the Rituximab trials? My vague understanding is that those improvements surpassed those of CBT/GET in PACE? Do those that recommend CBT and GET also recommend a dosage of placebo by Øystein Fluge, if not why not? The mind must...
Can anyone point me to some information on patient involvement in the design of the PACETrial?
I know Action for ME were involved (why them?) and were responsible for agreeing to waive the use of actometers part way through.
Is there any info/links you could provide for me?
Similarly, any...
Trial by Error by David Tuller: Norwegian Long Covid Rehab Trial Misrepresents Clinically Insignificant Findings As "Effective"
Quote:
This trial, however unimpressive the findings, has received lots of attention.
Along with the study, JAMA Network Open published an “invited commentary” from...
Edit: I haven't been able to read all the discussion.
The PACEtrial used the Oxford criteria for CFS, which only requires chronic disabling fatigue, and explicitly includes post viral fatigue, fatigue accompanied (or caused) by mild to moderate anxiety and/or depression, and idiopathic chronic...
But it doesn't @Medfeb.
If an anti-inflammatory analgesic is studied in large trials of joint pain do we then say that it should not be prescribed for rheumatoid arthritis because the trials did not require symmetrical joint swelling or a raised ESR? No, we use most drugs test on brand...
Notable that since this follows, this has been Garner's most recent promotional tour. Out of some trial on LC that doesn't actually say that, but he's been making this claim loudly, that those with PEM benefit the most, for a few months.
...only 30%, or even less. That likelihood may well be affected by features of the individual that put them in a subset - like PEM. But the PACEtrial selection criteria are justified on the basis that if it gave a positive result with 95% confidence that would be a starting point for treating...
...your last paragraph exactly my 6 week experience of CBT and Activity management in a clinic, diagnosed under the 2007 NICE guideline and PACEtrial results in 2011. My form filling was worse on fatigue but I felt better on everything else. I had been given tools to help me manage my illness...
Can you offer a guest editorial? I honestly can't understand how this situation prevails.
It's frankly weird how doctors are expected to be 'collegiate' in this situation and not criticise other doctors. What is the point of doctors who are loyal to each other rather than to patients?
But when is this taught? I've taken methodology classes with medical students, and I've only ever really heard about this problem in the ME patient community. The go-to professor on stats at my medical faculty is a co-author on a study with just this problem (on ME patients to boot).
It may be worth reminding people that when I presented my thoughts about the PACEtrial to the University College London Division of Medicine (cardiologists, endocrinologists, haematologists, clinical pharmacologists etc.) nearly ten years ago now the audience unanimously agreed that PACE was a...
It goes back much further than PACE. BPS supporters have been in key positions at Cochrane from the start, as I understand it. And they determined who got to write reviews, which ones they accepted and how studies are analysed. For example, none of them seem to understand that subjective...
...are mostly reactive instead of proactive.
As an example - why was the initial review left to the BPS lobby in the first place? Surely the PACEtrial displayed a need to control the narrative around how data is being interprerated? We’ve known that the GET research is terrible for ages - why...
PACE had an objective measure of physical fitness (which involved patients doing a step-test while having their oxygen measured, IIRC) and there was no increase in fitness in any arm of the trial. There's your proof already, I think.
Week beginning 30th December 2024
Science for ME petition Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review
Update: On Cochrane's excuses for scrapping the replacement review process they set up: Part 1
This part examines the first excuse given by Cochrane, a lack of resources...
YES!
ETA: Carol Monaghan SNP read out in the Westminster Hall debate in 2018, an extract of a letter she received from someone who participated in the PACEtrial.
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