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Amazing work, @Caroline Struthers!

Just found this info on a page on Cochrane's website, 'Withdrawing articles published in the CDSR [Cochrane Database of Systematic Reviews]': As of March 2022, protocols must not be withdrawn for any reason other than serious error, scientific misconduct, or serious breach of CoI policy (see...

Sorry I'm not up on the history of this - did S4ME send any complaints about the Larun review to the Charity Commission? If so, is there a link to what we sent?

In an ideal world, who would a new complaint come from? Are they most likely to listen to the Charity Commission? Our charities? The APPG?

:banghead::banghead::banghead:

Is anybody fighting this stuff in the literature?

'Producing a meaningful update is not a priority based on insufficient new research'? After Cochrane's editor-in-chief admitting to the shortcomings of the Larun review, it doesn't matter whether new research has come out or not. This is outrageous. They should have withdrawn the poor review...

Did that just go today?

There's a separate thread on SequenceME here with some of this info.

Will the IAG have been involved in the decision to reject the new protocol?

The Open Medicine Foundation did a study on the severely ill some years ago, led by Ron Davis, with the idea that the severely ill would provide the strongest 'disease signal'. The 2021 paper linked to there didn't include genetic results (I think) and I couldn't see how many patients were...

I really hope this gets funding asap.

But I think that calling it 'chronic fatigue syndrome' makes it very easy to continue to treat it as an issue of deconditioning. A name related to PEM would carry a warning against 'pacing up' in the title.

If we come up with something on care for severely ill PwME, how would we go about getting it taken up by the NHS?

Is PEM unique to ME/CFS? If so, I'm wondering whether a name based on that would be a good idea. I know we've discussed in the past how it might be better to leave the name alone until we have some clear biological sign (?) but we have no idea how many more years we'll have to wait for that, and...

The UK ME/CFS Biobank only seems to have blood in it, but last October, the MEA announced that they were funding a new post-mortem tissue research programme at the Manchester Brain Bank. They said: 'The MEA Ramsay Research Fund will be funding detailed examinations of the brain, spinal cord and...

Would dorsal root ganglionitis only be observable on post mortem or could it be detected by scans? Quite a few PwME have probably had spinal MRI scans.

It's not just that there are no services - it's that the services may be positively harmful.

Nothing in @Suffolkres's list looks like an actual plan - it seems too top-level. It's like the 'concept of a plan'.

In fact, I wonder how even these inadequate guidelines are meant to be activated if a PwME need to go to a hospital department. Is the PwME supposed to flag up that there are NICE guidelines that should be applied? What if the department then says they can't make any adaptations?