Anticipation of and response to exercise in adolescents with CFS: An experimental study, 2021, Loades, Chalder et al

PhysiosforME said:
Any of you clever people know how we can get sight of the REC application at all?
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Maybe write to the author to request it:

Corresponding author at: Dept of Psychology, Institute of Psychiatry, Psychology & Neuroscience, King's College London, De Crespigny Park, London SE5 8AF, UK.
Katharine.Rimes@kcl.ac.uk

and if refused, put in a freedom of information request.
 
Speaking of a sit-stand test, which is minimal exertion. This is a grown man, a medical professional whose job literally involves physical function, who was floored by a 1 minute test, no doubt whoever administered it is completely oblivious to PEM and the outcome the test had.



What are the chances that children will be listened to when they report the same thing? Absolutely zero. This is absolutely unethical in so many ways.
 
Trish said:
Maybe write to the author to request it:

Corresponding author at: Dept of Psychology, Institute of Psychiatry, Psychology & Neuroscience, King's College London, De Crespigny Park, London SE5 8AF, UK.
Katharine.Rimes@kcl.ac.uk

and if refused, put in a freedom of information request.
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They should provide this on request. They should also automatically treat such a request under the FOI. If you have no luck @PhysiosforME post back and let us know what they say.
 
I looked this test up and tried it. Upon completion, I stood up and began walking and had orthostatic hypotension, or in plain English my knees became weak and I nearly fell to the ground. Repetitive movements of this kind tend to trigger it. Therefore the authors may be recording the effect of orthostatic stress as if it was a psychological problem.
 
I can't see the study (and the abstract doesn't say). Do we know what sort of sit-to-stand test it was?

I found out earlier (looking to see what @darrenabrown had been asked to do) that there are *many*.

Some SSTs just involve seeing what your balance is like - going from standing to sitting cross-legged on the floor without putting hands down, and then standing up again - others are timed (30s, 1min) to see how many times you can stand up from a seated position on a chair.

The standard seems to be 30s SST - but 1min seems to being used in LC clinics - and that's what gave Darren PEM.

I can fully understand why this would cause anxiety if someone who knew their PEM triggers was asked to do it. (And as I keep saying - I don't have PEM - so if I can understand that, why the &*%$£ can't these researchers???)
 
Lucibee said:
I can't see the study (and the abstract doesn't say). Do we know what sort of sit-to-stand test it was?

I found out earlier (looking to see what @darrenabrown had been asked to do) that there are *many*.

Some SSTs just involve seeing what your balance is like - going from standing to sitting cross-legged on the floor without putting hands down, and then standing up again - others are timed (30s, 1min) to see how many times you can stand up from a seated position on a chair.

The standard seems to be 30s SST - but 1min seems to being used in LC clinics - and that's what gave Darren PEM.

I can fully understand why this would cause anxiety if someone who knew their PEM triggers was asked to do it. (And as I keep saying - I don't have PEM - so if I can understand that, why the &*%$£ can't these researchers???)
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The 1 minute sit to stand test is included in the NICE guideline for managing the long term effects of covid. It says "If appropriate, offer an exercise tolerance test suited to the person's ability (for example the 1‑minute sit‑to‑stand test)"
Sadly there is no reference to PEM and the only additional info is in the rationale section (which is separate and so you have to go hunting for it) where it says The panel discussed the usefulness of carrying out a sit‑to‑stand test but also agreed clinical judgement would be needed because it is not suitable for everyone (for example, people with chest pain or severe fatigue).
 
From the Section Snippets of the paper

"Research Implications
The role of physical deconditioning, exercise intolerance, anxiety and expectations for exercise and physical activity avoidance all require further research to help clarify their possible roles in the maintenance of CFS in adolescents. Exercise tolerance may be further subdivided, for example, into maximal exercise capacity, endurance, muscular strength, and it seems likely that these various aspects of exercise are differentially compromised in CFS. Therefore, to further the understanding of..."

How can they keep getting funded? and where can we find out more about the amounts wasted through Kings?

ETA: https://www.s4me.info/threads/funding-of-me-cfs-research-in-the-uk.2533/#post-407005
 
Always with the intense focus on exercise and how they can get it to produce the results they want.

They need to go away. But given that they could also learn to be more nuanced with regard to anxiety -- it's not always (or even mostly) about anxiety as psychological response -- but this group will never care or acknowledge that. They need to understand orthostatic issues like real medical researchers.

And what can they imply about deconditioning? Loads of people get by through their life without being optimally in condition. By now hearing them talk about anything like that makes one think we all need to train as Olympic athletes just to maintain health. How far conditioned does one need to be to be not deconditioned? Inquiring minds want to know.

It's like they're acknowledging PEM without acknowledging it then trying to figure out a way of beating the system so to speak by working out how they can continue to do what they do working around PEM.

Reading their papers you'd think they have a fear of others getting deconditioned. They'd have done better to become sports therapists.

The only sure thing in all this (from their POV) is we need them. They are the answer. They will find the magic formula to get amazing results by researching the same thing over and over (for literally decades) with a minor tweek here and there.
 
MEMarge said:
From the Section Snippets of the paper

"Research Implications
The role of physical deconditioning, exercise intolerance, anxiety and expectations for exercise and physical activity avoidance all require further research to help clarify their possible roles in the maintenance of CFS in adolescents. Exercise tolerance may be further subdivided, for example, into maximal exercise capacity, endurance, muscular strength, and it seems likely that these various aspects of exercise are differentially compromised in CFS. Therefore, to further the understanding of..."

How can they keep getting funded? and where can we find out more about the amounts wasted through Kings?

ETA: https://www.s4me.info/threads/funding-of-me-cfs-research-in-the-uk.2533/#post-407005
Click to expand...

Well that should keep them churning out crap for another few years at least. Unbelievable. They have no ethics and no shame.
 
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