NICE Statement about graded exercise therapy in the context of COVID-19

That's interesting. I don't generally have trouble with archiving but it may be that it is discerning that my IP address is not in the UK perhaps? I wish I could spend more time learning how my computer interacts with the internet.

 

University of Wolverhampton
BLOG: The Role of Exercise in COVID-19
26/08/2020
Professor Roger Wolman MD(Res) FRCP FFSEM - Visiting Professor - Institute of Human Sciences and Consultant in Rheumatology and SEM blogs about the role of exercise during the pandemic.

full blog here:
https://www.wlv.ac.uk/news-and-even...020/blog-the-role-of-exercise-in-covid-19.php

 

I see. The state of the patients deconditioning varies from day to day. I would like to hear more on that.

 

No it isn't. I know physicians keep repeating that but if a patient presents with this to 90%+ of physicians they will be told to GTFO. Secretly recognizing something, writing on the patient's file without disclosing it to the patient, is most definitely not in line with the common definition of recognising something.

Bullshitting about something is very much not recognising it. The idea that this has anything to do with deconditioning is absurd, so many patients have reported a very mild initial case, were never anywhere near bedbound and in many cases were very fit and active people. Please do explain this magical deconditioning-reconditioning-deconditioning cycle. In painful detail. I would very much like to understand how deconditioning can come and go, fluctuate wildly and unpredictably while keeping with the actual medical meaning of the word.

Exactly what part of the words fluctuating or unpredictable do you not understand? It would be great if things worked like that but the world does not revolve around your little person's tiny ignorant perspective.

Why do people keep repeating this nonsense? I guess it's part of the big lie, to pretend to take this seriously while being completely dismissive of it when presented with an actual case. I may be weird but medical doctors should not blatantly lie like that. It's disastrous and frankly immoral.

Please stop lying, thank you in advance (since I know it will take a looooong time for this to actually happen).

 

I know Roger very well. A sensible guy but I am not surprised that he has swallowed the BS.

A more successful approach is to identify a level of exercise that the patient can tolerate, without causing prolonged pain or exhaustion, and use this as a baseline from which to progress.

Simple ways of measuring a baseline include the one minute sit-to-stand test, measuring the number of times the patient can do this activity in one minute, or the 6 minute walk test, measuring the distance walked in 6 minutes. A baseline level of aerobic activity can then be prescribed which will depend on the baseline measurement.

Same old confusion. How does anyone now it is successful and why bother to talk of exercise at all if the patients are already booming and busting before you can even get to them.

I cannot believe that seeing how many times someone stands up in a minute tells you anything useful about their exercise capacity. It will distinguish Usain Bolt from most 90 years olds' yes, but what about Captain Tom and surely it will depend on how the request is phrased. The trouble is that doctors feel they have to say something useful even if there is nothing useful to say.

 

As far as I can tell, over the course of my illness I went through periods were there was some room to improve my fitness but not much because I'm already operating close to my limit anyway. This idea of patients having flawed cognitions that lead to them doing a lot less than they could are complete nonsense.

I can also see how my fitness can suddenly change from one day to the next. That's impossible to explain with deconditioning.

It's an absurd idea that patients could recover if only they stopped being under the influence of the illusion that there was a disease.

 

Yep. The presumption is always that there is a baseline from which you can progress. With ME/CFS there is no guarantee whatsoever that any baseline (wherever it may be and whether it is even identifiable) can be progressed from, or even if it can be maintained. The physiology may well have other ideas. And if there is any progression, it may well have nothing whatsoever to do with any interventions.

 

or to put it another way - it's predicated on the incorrect assumption that at baseline pwME feel well and have no symptoms.

Just because PEM is an increase in symptoms does not imply that when 'free of PEM' I have no symptoms.

Sometimes, at rest, my symptoms drop into the background, but I am not symptom free - ask me to do something that challenges me - like ask where I live (when standing next to my sofa), or what the time is (when I'm facing my living room clock) and my brain will melt down.

As to the whole one minute of sit to stand exercise - otherwise known as squats, a very intensive whole body exercise, commonly thought of as one of the hardest exercises there is based on it's effects on the body.

Sounds ideal as a thing to do to those with a compromised system.

 

During one of my remissions, I was able to live relatively normally, play high-intensity drums for hours many nights a week and even do intensive martial arts. I relapsed later, much worse than before. Did I still have ME at the time? CFS? Mild CFS? In remission? Was the relapse later a different thing? Nobody knows, stop playing with whole human lives here.

Wild variations and fluctuations, as well relapses, are a common feature. A single fitness test means nothing in a disease where the range of illness goes from slightly limiting all the way to 24/7 fed-tube hellish suffering.

This is all just aspirational nonsense, how they wish things should be. It really would be great if magic were real and we could all play that weird fake sport in Harry Potter I can't remember the name of. But, you know, real life. Please. Real life, real people, real human lives. You can't wish things true, stop it.

 

All this guy has to do is listen to 20 million patients. Probably never occurred to him.

 

I couldn't play darts any more, not because of the effort of throwing the darts, but because of the sitting down and standing up between turns. Wiped me out. I tried leaning in the corner for the whole game, but that meant that I had to stand up the whole time. Perhaps a chair on a plinth with wheels on would have helped.

 

Stand on a sack truck and get someone to wheel you around??

 

Wheelchair darts! New Paralympic sport in the making. Mind you, the argument over whether the footplate or the drive wheels has to be behind the oche could go on for decades...

 

https://twitter.com/user/status/1299256484879044608

 

@PhysiosforME
have now shared the letter and asks:

“The letter is open access so that anyone can send on to services dealing with post-Covid patients, or to challenge inappropriate advice.

In order to keep track of where it has been sent, we would ask for you to notify any member of Forward ME if you do send it, or alternatively just notify us so we can send on your behalf.”

https://www.physiosforme.com/fwd-me-letter

 

https://twitter.com/user/status/1304451520784670721