Persistent symptoms after Covid-19: qualitative study of 114 long Covid patients and draft quality criteria for services, 2020, Greenhalgh et al.

My impression is that the percentage of long covid patients with PEM is not insignificant, maybe as high as 50%. That's just my estimate based on what patients are saying in newspaper, blogs, TV and social media.

What impression do you all have?
 
Last edited:
Conclusion Quality principles for a long Covid service should include ensuring access to care, reducing burden of illness, taking clinical responsibility and providing continuity of care, multi-disciplinary rehabilitation, evidence-based investigation and management, and further development of the knowledge base and clinical services.
Click to expand...
so just stating what the medical profession should actually try to do their damn jobs rather than negating their responsibility to the patients who pay them very generously for the privilege of being abandoned.
 
Last edited by a moderator:
strategist said:
My impression is that the percentage of long covid patients with PEM is not insignificant, maybe as high as 50%. That's just my estimate based on what patients are saying in newspaper, blogs, TV and social media.

What impression do you all have?
Click to expand...
Sounds about right. Definitely not all, probably most, but not by much, somewhere around 50-70%. Exertion intolerance is rarely recorded in those studies but I think it is likely to be the most common symptom. Unfortunately like brain fog there is no formal medical term so it's in the category of answers missed because the question isn't asked.
 
alktipping said:
so just stating what the medical profession should actually try to do their damn jobs rather than negating their responsibility to the patients who pay them very generously for the privilege of being abandoned.
Click to expand...
Basically when it comes to discriminated diseases it always comes down to the same, which 100% applies here:

Take what you do for MS, Parkinson's and other diseases, and do the same. That's it. Just do your job. Provision the services. Fund the research. Teach stuff that is actually related to reality. Have actual accountability and oversight, competent monitoring and evaluation of outcomes. Literally just do your damn job. That's all that's needed. Nothing special, just no saboteurs, interlopers, fanatical ideologues or other types of superfluous influences. Do your damn job the same way you do with other things that are part of your job. If you don't want this to happen nobody cares just get out of the way.

Even take MS as a perfect example. At some point it was not part of standard medical practice. Then science occurred, and things were put in motion to where we are now, still imperfect because many pwMS are hurt as collateral damage from MUS but still enormously better than at the time the predecessors of our BPS overlords were calling MS hysterical paralysis and meant exactly that. That is the exact recipe to follow. Just a whole lot faster and better (since the idea is that people are supposed to learn from experience).
 
Jonathan Edwards said:
And no, this is not a preprint.

A preprint is a peer reviewed paper that is released prior to printing, as a reprint is released after printing.
Click to expand...
A preprint has not been peer reviewed. https://en.wikipedia.org/wiki/Preprint. However, authors can post the "author accepted manuscript" on public servers eg. at their university to ensure immediate open access prior to publication, and if the journal is paywalled. In which case they have been peer reviewed but are not formatted in the pretty journal style or proof read. So, this paper has not been peer reviewed.

Trish G actually asked on Twitter for volunteers to review it to ensure a fast publication. That's a pretty dodgy thing to do isn't it?
I didn't get the call as she has blocked me, so I couldn't even put my name forward as a reviewer! Perhaps I should contact the journal and suggest myself! TG is best mates with the recently doubly beknighted power couple Sir Simon and Lady Clare, so I guess that explains the lack of acknowledgment of people with ME.
 

Attachments

  • upload_2020-10-15_20-28-12.png
    upload_2020-10-15_20-28-12.png
    49.1 KB · Views: 9
"Hoping to fast-track" is not encouraging. Nothing good comes out of fast-tracking the first few steps that will define all subsequent steps. Especially when those first few steps are mostly misinformed and negligent of important lessons. If anything much more rigorous peer review than normal would be warranted. That doesn't have to take much longer. Measure twice, cut once.

We've seen the impact of "haven't read beyond the abstract". It's not worth wasting actual paper on those. There is an in-between. Enough of that "no need to measure anything, now or at any point, just cut everything however you want it to look and grade your own work as flawless".
 
Caroline Struthers said:
A preprint has not been peer reviewed. https://en.wikipedia.org/wiki/Preprint.

Trish G actually asked on Twitter for volunteers to review it to ensure a fast publication. That's a pretty dodgy thing to do isn't it?
Click to expand...

Sorry but history has been rewritten. Thirty years ago a preprint was something you sent people after peer review and acceptance. It was before printing - printing having been guaranteed. It was actually on a piece of paper, usually produced with an ink jet printer or daisy wheel if you were lucky, and send by mail. How can an un-peer reviewed MS be a preprint if printing has not even been offered!! It is a bit like having a trailer to a film that has not yet been financed.

The request for offers to review simply reflects the fact that Greenhalgh lives in some nepotistic circle where this sort of behaviour is discussed at drinks receptions or other cosy venues. What she does not realise is that it is a circle that has no intellectual standing, just noise level - a bit like Astrology Weekly.
 
Jonathan Edwards said:
This is just plain bad. I hope it is rejected for publication because stuff like this is totally unhelpful.
I am used to manuscripts like this from therapists doing higher degrees wanting some papers for their CV but to have something like this from someone who is both a professor and a member of a guideline committee shows just how broken things are.

The first key problem that makes the whole piece a nonsense is the complete lack of any control over sampling. It seems they used twitter and 'snowballing' rather than any systematic method of recruitment.

So they end up asking for people with weird symptoms after Covid and sure they get a mix of the weirdest. The symptoms may well be diverse and difficult to explain but this to me is the same methodology that the MESpine group uses to generate totally meaningless and misleading data.

the second key problem is that the study is used as an excuse to recommend a care package - when there is nothing in the paper that tells us what that should be.

The whole thing demonstrates just how much of a Wizard of Oz the Cochrane and Co brigade really is. This is like school kids putting on a mock election that has bio relation to reality. The scary bit is that this sort of thing is likely to be used for healthcare policy.

I give up.
Click to expand...

Never looked carefully at PACE but your comments seem to apply to it --- poor quality research used as the basis for Government policy.

Seems that, on the Government policy side, there is no-one with sufficient understanding to say this is crap --- so yes there is a risk that this could be used as a basis of healthcare policy..
 
Caroline Struthers said:
A preprint has not been peer reviewed. https://en.wikipedia.org/wiki/Preprint. However, authors can post the "author accepted manuscript" on public servers eg. at their university to ensure immediate open access prior to publication, and if the journal is paywalled. In which case they have been peer reviewed but are not formatted in the pretty journal style or proof read. So, this paper has not been peer reviewed.

Trish G actually asked on Twitter for volunteers to review it to ensure a fast publication. That's a pretty dodgy thing to do isn't it?
I didn't get the call as she has blocked me, so I couldn't even put my name forward as a reviewer! Perhaps I should contact the journal and suggest myself! TG is best mates with the recently doubly beknighted power couple Sir Simon and Lady Clare, so I guess that explains the lack of acknowledgment of people with ME.
Click to expand...


I did wonder if reposting several of your tweets a few months ago @Caroline Struthers was the reason I am also blocked by Trish G!!
I hardly ever tweet anything original, just retweet others' comments.
 
Jonathan Edwards said:
Sorry but history has been rewritten. Thirty years ago a preprint was something you sent people after peer review and acceptance. It was before printing - printing having been guaranteed. It was actually on a piece of paper, usually produced with an ink jet printer or daisy wheel if you were lucky, and send by mail. How can an un-peer reviewed MS be a preprint if printing has not even been offered!! It is a bit like having a trailer to a film that has not yet been financed.

The request for offers to review simply reflects the fact that Greenhalgh lives in some nepotistic circle where this sort of behaviour is discussed at drinks receptions or other cosy venues. What she does not realise is that it is a circle that has no intellectual standing, just noise level - a bit like Astrology Weekly.
Click to expand...
yes, that makes perfect sense! So the "author accepted manuscript" is today's equivalent of a preprint. Trish's paper should be called a wannaprint...any other suggestions on what to call it?!
 
Dx Revision Watch said:



And still no comment that I can see from Greenhalgh on yesterday's release of

https://evidence.nihr.ac.uk/themedreview/living-with-covid19/

Living with Covid19
A dynamic review of the evidence around ongoing Covid19 symptoms (often called Long Covid).
Click to expand...

I am very much looking forward to the content of those clinics, and hopefully if people bring out material to share so we can see. This opaque process where things happen in secret and documents are restricted from public view is an incredibly broken way to work for medicine. Reminds me of the Catholic church keeping everything in Latin so people wouldn't understand the sermons.

This obsession with keeping medicine an arcane thing out of reach of the general public seriously needs to end, it guarantees accountability only occurs within the thought bubble.
 
If Greenhalgh considers Callard to be an "expert by experience" after 6 or 7 months, does she, without question, accept the expertise by experience of those who have suffered from ME for 30, 40, or 50years. I think we should be told.
 
You must log in or register to reply here.
Back
Top Bottom