Measuring improvement and deterioration in ME/CFS (2020) Kirke

I have had a letter published in the Journal of the Royal Society of Medicine entitled

‘Measuring improvement and deterioration in myalgic encephalomyelitis/chronic fatigue syndrome: the pitfalls of the Chalder Fatigue Questionnaire’

You can read the letter here (see posts below if you are unable to access it):

https://journals.sagepub.com/doi/10.1177/0141076820977843

It is in response to Adamson et al’s audit of the ‘South London and Maudsley Persistent Physical Symptoms Research and Treatment Unit’ published earlier this year:

https://journals.sagepub.com/doi/full/10.1177/0141076820951545

The Adamson et al audit was discussed here:

https://www.s4me.info/threads/cogni...in-the-uk-2020-adamson-wessely-chalder.16242/

Thank you to my sister, Ciara Kirke, for proofreading a draft and pointing out where it didn’t make sense. Thanks also to @Tom Kindlon for having a look at the final draft and crossing his fingers for me.

I hope the letter will spark discussion of outcome measures here and among the researchers looking to measure fatigue over time post-Sars-Cov-2 infection and other infections.

As some will already know, I have had ME/CFS since 2008 following viral meningitis. I was a Speech & Language Therapist at a hospital. My ME/CFS is severe – I am completely housebound – and unfortunately is worse than when I last posted about it.

[Edited to correct my sister's name to the one she uses for work, Twitter.]
[Edited to signpost people to posts below if they are unable to access the letter.]

 

Seems to require a paid account to access, so I can't read it, but congratulations on getting it accepted.

 

Yes, @Karen Kirke 's seems paywalled but the Adamson paper is available.

i even checked down the very bottom of the Adamson paper where it lists some similar articles but Karen's isn't listed there. Yet.

Congratulations on getting it published.

 

So sorry you're not able to access the letter and thanks for kind words.

I can view it in Google Chrome but not in Microsoft Edge, so perhaps it's worth trying a couple of different browsers?

I'll sign in here tomorrow when my brain's functioning and see what I can do.

Others may have better solutions in the meantime!

 

I'm on Chrome but can't access it either.

 

It’s on Sci-Hub, well done @Karen Kirke and thank you!

 

This Sci hub link worked for me, https://sci-hub.se/10.1177/0141076820977843

 

I read the letter via the Science Hub link.

Thank you @Karen Kirke for the work you have put in on this.

 

When you click on the link to the letter (below) you'll see "Access options".

On the right, beneath "Purchase content", it says "Rent with DeepDyve".

If you click on "Rent article", it should come up for free. (No renting required!)

https://journals.sagepub.com/doi/10.1177/0141076820977843

Hope this works for people!

 

You’re right to point this out – I realised in the middle of a rest last week that it would have been helpful if I had clarified that Adamson et al were using the 33-point Likert scale for the Chalder Fatigue Questionnaire. Collin & Crawley 2017 also used the 33-point Likert scale.

As far as I can tell, UK researchers have all been using the 33-point scale since Bart Stouten pointed out they could after the FINE trial’s disappointing results using the 11-point scale.

But this may not be clear to newer researchers.

Here’s Bart Stouten’s letter to the BMJ in 2010: https://www.bmj.com/rapid-response/2011/11/02/fatigue-scale

@Tom Kindlon 's letter to the BMJ took up this point: https://www.bmj.com/rapid-response/...scoring-chalder-fatigue-scale-would-be-useful

 

And to further clarify, all of the studies that have used a 2- or 3-point decrease in Chalder Fatigue Questionnaire score to indicate clinically useful improvement in fatigue have used the 33-point Likert scale.

e.g. PACE, Crawley et al 2013, GETSET

Here are links to the Collin & Crawley 2017 paper I cited in the letter, and the Crawley et al 2013 paper which was cited by Adamson et al:

Collin & Crawley 2017 (Click on 'supplementary materials' to see table S3)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5513420/

Crawley et al 2013
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3665909/

 

Worked for me – thank you! Excellent letter.

 

Read it this morning. Excellent, thank you!

 

https://twitter.com/user/status/1339286872317681664

https://twitter.com/user/status/1339287389722849282

 

Well done @Karen Kirke

Great find on that supplementary table that compared Chalder Fatigue Scores versus global improvement in health

 

Only just seen this - well done @Karen Kirke

I only wish we could go further and stop them using the CFQ for things like this, for all the reasons you mention, and the ones I outlined in my blog last year.

Please ask me to help. Please use what I've written if you think it's useful.