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

If children in these exercise studies are treated the way I was, then these studies are definitely unacceptable.

 

REC sign off ?

 

https://twitter.com/user/status/1384247513977286669
I've read the whole article. As a parent of two boys with ME, I took offence! I am still trying to regain my calm to write a proper critique!

 

Any of you clever people know how we can get sight of the REC application at all?

 

@JohnTheJack is our resident FOI request expert, so might be able to offer some suggestions?

 

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.

https://twitter.com/user/status/1385913685215006721


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.

 

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???)

 

it's easy to just file a FOI with the local research ethics authority or the national overseeing body. no need to ask the researchers directly. I mean, you can if you want. or do both simultaneously.

 

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).

 

Thank you I will give it a go and keep you posted

 

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.

 

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

 

i hadn't noticed this paper until now. The whole thing is ridiculous.