Psychological and demographic factors associated with fatigue and social adjustment in young people with severe CFS/ME (2018) Chalder et al

[Esther12]

Frank Twisk has also had a comment on this study published https://link.springer.com/epdf/10.1007/s10865-019-00032-5?author_access_token=JJ7pVNFZRsJdVXyPratDeve4RwlQNchNByi7wbcMAY4zNrSo-GMYg7dnb-9BqtyR4yO6NfATjVXQeNVbzVqX8DrzUwQtPyvPikpketxheSy00rETha9ziAWNwckswnzBsF4RTX64o4ap16Itrsb5GA==

I'm not sure about this letter.

ME is a neuromuscular disease

Maybe, but I don't think we know that and a reference from 1990 doesn't do much to prove it.

However the study (Ali et al,. 2019) observed that
treatment, in most cases (25/41) treatment included CBT
and/or GET, was associated with lower work/school
attendance at baseline and after 5 months. This finding
underlines the thesis that CBT/GET is neither effective nor
safe (Twisk & Corsius, 2018), a position which was
recently also expressed by members of British parliament
(House of Commons Hansard, 2019).

Does this Chalder study really tells us anything about the efficacy of CBT/GET? I guess it indicates that it's not hugely effective. I don't think that citing a parliamentary debate on this matter is a good idea in a letter to a science journal, unless it's to just highlight that this is an issue attracting public attention. Those two Cochrane reviews have yet to be withdrawn - it's easy for Chalder to reply with 'you're citing politicians spouting off, I'm citing Cochrane systematic reviews'.

 

[ME/CFS Skeptic]

Chalder et al. have published a response to the letters: "However CFS is operationalised young people’s perspectives are important."
https://link.springer.com/article/10.1007/s10865-019-00034-3

 

[Snowdrop]

Has anyone ever counted the total number of psychologic studies vs biomedical research studies from the UK?

Here I don't mean mind/body duality but just studies that are about psych treatment or understanding supposed psych mechanisms/issues of people with ME.

I would expect the ratio to be horrifically in favour of BPS.

And is there some way to petition the NIHR to start favouring non BPS research given how much of it is about?
On the basis of value for money. With all the BPS research that exists shouldn't some issues be well and truly settled?

 

[Graham]

Chalder et al. have published a response to the letters

I can't read it: is it subscription only?

I would expect the ratio to be horrifically in favour of BPS.

I haven't counted them: the numbers will be high, and it is tedious to sort out the UK ones. But the number of studies funded by the MRC, by NIHR and by Wellcome could be counted. That will miss any UK ones funded through other charities. One problem is that PACE was one study, but it prompted a number of articles, but it did cost £5 million. What should we count it as when we compare it with a relatively cheap, small study?

NIHR has funded virtually nothing.

 

[Esther12]

Chalder et al. have published a response to the letters: "However CFS is operationalised young people’s perspectives are important."
https://link.springer.com/article/10.1007/s10865-019-00034-3

WTF is that title? What are they referring to? Patients reporting a diagnosis of ME/CFS - as if wanting research to use a recognised criteria is dismissing young people's perspective?

I couldn't access at that link, but it was on sci-hub: http://sci-hub.tw/https://link.springer.com/article/10.1007/s10865-019-00034-3

Thank you for pointing out that fear avoidance beliefs were not associated with fatigue at time 2. There was a typographical error in the abstract. Fear avoidance beliefs only predicted fatigue cross sectionally at time 1 but more importantly did predict social adjustment (degree to which the individual participates in life) at follow up.

Is that error going to be corrected? Wonder why they think a positive result is more important than a null result?

They really just ignore the points Tack made and then respond to the less cautious letter from Twisk.

We are open to any ideas about how these young people can be helped to gain health and independence. The idea that nothing can be done to help people with CFS must surely be challenged.

The easiest thing to do to help people with CFS would be to speak out about misleading claims from researchers. The idea that quacks should be allowed to build careers pretending that they are helping people with CFS must surely be challenged.

 

[Graham]

"The idea that nothing can be done ..."

Aaaarrggghhh! How about the idea that constantly labelling it as a purely pschological state means that many doctors don't even try to treat basic symptoms!

Rant over.

 

[Amw66]

"The idea that nothing can be done ..."

Aaaarrggghhh! How about the idea that constantly labelling it as a purely pschological state means that many doctors don't even try to treat basic symptoms!

Rant over.

If we had spent the psych research funds on biomedical studies we might be in a different position. Look at what Cara Thomas and Karl Morten are contributing on tiny budgets.

Conflation, confusion and subjectivity reigning supreme do noone any favours. Too many studies are a mish mash of fatiguing conditions to the extent that ME is under represented. Extrapolating anything is therefore dangerous.

On too many occasions it is clear that researchers have little idea of what they are supposed to be researching.
Perhaps a sabbatical at Peter Rowe' s clinic might be worthwhile, or god forbid, acknowledging the expertise of our own Dr Nigel Speight.

Severe ME for researchers from this school has gone from non existence as little as 2 years ago to being something that can reduce your school attendance to a few hours a week (!)

Why do people feel the need to offer something without a decent evidence base.
Something can prove far more damaging than nothing.
Adolescents in particular know gaslighting when they see it .

Treat the symptoms and acknowledge comorbidities that are not anxiety and depression. OI treatment makes a massive difference. Decent pain relief ..checking things like vitD, B12 status ....

Children deserve far far better. Not least the non responders who end up with a PRS label.