This blog post is a transcript of this podcast
Sally
Hello, welcome to Lightbulb Moments. Today I’m talking to Stripy Lightbulb CIC Director Chantelle Martin. In her day job, Chantelle is an Occupational Therapist, but she has studied for an Exercise and Sports Science degree. She has also taken additional exercise training courses level three and four, including GP exercise referral qualifications. This relates to today’s subject. We’ve recently discovered here Stripy Lightbulb CIC that long COVID patients are being referred to their local gyms or leisure centres by their GPs for exercise-based rehab. This concerns us because it’s now been established that around 46% of long COVID patients meet the diagnostic criteria for ME/CFS and up to 70% of long COVID patients are exhibiting the key defining characteristic of ME/CFS, whether they’ve got ME/CFS or not. They have this characteristic of Post Exertional Malaise, also known as Post Exertional Symptom Exacerbation. I’m going to let Chantelle do most of the talking because that’s where her expertise lies. To over to you, Chantelle.
Chantelle
Thank you, Sally. And, yes, it’s a really interesting position to be in with the different qualifications, courses, and background that I have. if I hadn’t met you, Sally at the OT show, actually, I don’t think I would have joined the dots. When I’ve done all of my exercise courses and training, there has been some mention of ME/CFS. But it’s been a very, very small amount. All of my exercise background was based on ‘exercise is good for everything’, and recently, we’ve had prominent people, such as the Chief Medical Adviser saying ‘there’s no situation, there is no age, and no condition where exercise is not a good thing’. And actually, I would never have questioned if there was a group of people where exercise could potentially be harmful for them. It’s only through my additional training and my contacts with Stripy, and my learning that I’ve been through. I hadn’t been trained, I hadn’t heard of Post Exertional Malaise. And I’m discovering through trying to educate people around M.E that actually very few exercise professionals are aware of this. That is concerning, because if people are out there doing their best intentions to use all that exercise knowledge, and using the principles that we would normally apply to our clients that we say, which might be increasing frequency, intensity type, time, to try and get an overload principle for all the benefits that exercise brings. We are not going to be aware that actually there is a group of people that this could be harmful for.
Chantelle
So this is the start of the journey and actually helping a profession, a group of people that are passionate about what they do, but need to know additional information so that they’re not harming some of the clients that come into their service. We feel there is a need for more training for people who are going to be coming across clients who have ME/CFS or now long COVID that need to be managed in a different way. And there needs to be a route back to medical professionals for detailed advice and symptom management. So that people are not caused further harm and deterioration from being able to do the things they want to do in their life.
Sally
Over the next month or so, Stripy Lightbulb CIC are creating content specifically for gym instructors and gym owners. Because we believe this is an issue you need to know about. We’re doing it at the end of 2021 because there are now nearly 2 million long COVID patients according to latest estimates, and those that have recovered, or have recovered to a point, may well see the start of 2021 as the time for them to start pushing to get back to their pre-long COVID fitness levels. That’s why we believe timing with this is key. We’re hoping to educate as many gym instructors as possible before that surge of demand begins.
Sally
I’ve got personal experience of a gym instructor telling me they knew what ME/CFS was. And they told me this is when I was going through a period of remission about 10 years ago. I literally said to my gym instructor, ‘I don’t know what kind of exercise I can and can’t do. Do you know anything about ME/CFS?’ They assured me that this exercise programme they created for me was ME/CFS appropriate. It is only now that I understand this aerobic, high intensity, exercise programme that they created for me was 100%. inappropriate. I found that my symptoms were deteriorating, I didn’t know that it was because of this exercise programme. I thought it was just my symptoms coming back and I didn’t join the dots as Chantal would say, but now with hindsight, I know that this exercise programme was causing my symptoms to exacerbate. And I can’t stress this enough, I’ve now spoken to 1000s of long COVID patients who, the day before they caught COVID, were in the gym, they were training for a marathon, etc, etc. This is not deconditioning.
Chantelle
Yes, essentially, their energy systems, potentially are sick, and we have some suspicions from the evidence of what’s causing that, but it’s not been scientifically proven. Essentially, the bodies are not functioning in the normal way for whatever scientific reason. There’s thoughts and research being carried out. Nobody knows the finer details, all systems can be affected. We’re waiting on that research to come up with the real detail in the physiological reasons. But essentially, when we think somebody is working in one energy system, in fact, they may be working in another. And although we would expect, as an exercise professional, that perhaps somebody might have some post exercise muscle soreness, or
Sally
Lethargy.
Chantelle
Lethargy, yeah, you know, by pushing harder, that’s normally how people get better. But in this situation, actually, we see a delayed response. And actually, people are sicker for longer because of the exercise that they’ve actually taken part in.
Sally
In the next few weeks, we will be setting up and promoting a Facebook group, this training will be in that group. So please sign up to our e- newsletters, all information will be included on our newsletters (sign up in the footer of stripylightbulb.com).
Chantelle
Essentially, we want to help you to know what you don’t know right now. To make a difference for the people that you’re working with in the right way, and potentially to avoid litigation.
Sally
There is so much scientific evidence now, to back up the theory that ME/CFS patients are harmed by increased activity. When we’re talking about increased activity, we’re talking about cleaning our teeth for too long, standing up for too long, go for 30 seconds too long a walk every day. So if you are then creating an exercise programme that pushes them well beyond their energy limits, the excuse that I didn’t know. And the false assumption that a GPS screened that patient for Post Exertional Malaise or Post Exertional Symptom Exacerbation. Most GPs do not know how to screen for it. So we need to now educate gym instructors to limit the harm to these patient groups.
Sally
Keep your eyes peeled for the training content. Please also add your suggestions for things for us to cover in the coming weeks to the document in the text content of this podcast (see below). Thank you very much for listening.
Please let us know what you, an exercise professional, would like to know about this subject – https://forms.gle/zfBt5YniH667nYfj8
This series of learning activities will be available within the coming weeks. Don’t forget to sign up for more info via our e-newsletter.
