Better Understanding: ME/CFS in Ultimate

Editor/Interviewer: hazard

Welcome to Better Understanding, a series where we interview people who face barriers in Ultimate. Barriers can take many forms, and often we can struggle to empathise with people, or even know what questions to ask. Here we hope to open up a conversation, and allow people to better understand some of the difficulties people can face.

Photo Credit: Andrew Hunter

Let’s start with introductions. Who are you? 

Louise

Louise Webster. Everyone just calls me Louise a few call me Lou or Webby.

How did you start Ultimate, and who have you played for?

Louise

So I have been playing Ultimate since 2014 when PUF (Perth Ultimate Frisbee) was set up. One of my friends got my to try it and I've been hooked ever since. I continued playing for PUF until I went to university at Stirling in 2016 where I joined Blaze. I've always been really invested in the sport and completed my UKU level 1 coaching qualification before starting uni as I had helped set up and run the Ultimate Frisbee club at Perth High School in my final year. I had really enjoyed doing that and it made me want to take it a step further when I did go to university and that's why I decided I wanted to take on the captaincy role of the women's and the mixed team at uni. I still occasionally go back and help out at the High school on activity days because it's really great seeing kids get into Ultimate.

What is your proudest moment playing Ultimate? 

Louise

That's a tough one. I would say personally it has to be at Nationals in Nottingham 2018. My first Nationals and I got to captain the Women's team. It would be that during that day I had various coaches and players from other teams coming up to me telling me I was a really good player and that I should keep it up. At the same time I was extremely proud to be playing with that team because we had never played so well together and to this day is one of my absolute favourite tournaments.

Captain Louise with her 2018 Stirling team
Photo Credit: Attila Lukács

I know you’re a talented Ultimate photographer too! What makes you want to sink all that extra time into photographing Ultimate, and do you have a favourite photo?

Louise

I was already really into photography and it seemed obvious that the next step was to take photos of the sport I love. I had first really started taking photos of ultimate when I was injured as it allowed me to still be involved when I couldn't actually play. I have a few favourite photos as it is always hard choosing just one photo when you have so many.

Louise later sent us this picture as one of her favourites
Photo Credit: Louise Webster for the ShowGame

What is ME/CFS?

Louise

ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). The best way to explain what it is is using the battery analogy. Basically when you charge your phone you charge it until its full at 100% so for us sleep and food etc. are meant to recharge us everyday so that we can function. However, when you have ME/CFS you can never reach that 100%, you end up having a new maximum power of about 60%. 

However, each person living with the condition is different as some people have little to no energy and this is called severe ME/CFS which affects 25% of those living with it. It is classified as chronic because it is a lifelong condition, so it is something that you will have for life and is said to be a disability due to the effects it can have on the body.

There has not been a lot of research on ME/CFS as it tends to receive very low research funding from the government although it can be very debilitating like other illnesses. No one actually knows where it comes from or why it happens and many people tend to go undiagnosed for years because it can be so difficult to identify it. It is only diagnosed through a process of exclusion where basically doctors will carry out blood tests etc and try and find out what it is or what it isn't in this case. It is basically when they have no other options that they suggest that it is most likely to be ME/CFS or sometimes fibromyalgia which is a similar condition.

How did you find out you had ME/CFS?

Louise

In my case I started really struggling during the Summer of 2018 with tiredness. I had just assumed that it was because I was working a lot and as a catering assistant it can get stressful and tiring during busy times in the tourist season especially when you are on your feet between 8 and 9 hours. Once I got back to uni the tiredness never really eased up. 

The first time I went to the doctors they just said it was because I had been working so much and I had just accepted that. Then things started getting worse as my concentration and focus started going and I was feeling tired all of the time and it wasn't the usual tired like I've been to the gym it's different it's like you feel very weak like you have the flu. I started struggling in lectures where I was getting to the stage I was constantly having headaches and almost falling asleep in lectures. 

Doctors started testing me more until one said he suspected it was ME/CFS but he wanted me to be sure by finding out more about it. A large amount of the symptoms were fitting with the diagnoses. From the headaches to my temperature which I couldn't regulate (one minute I'm hot the next I'm shivering), extreme fatigue and tiredness, achy muscles and joints and the most recent symptom problems with my eyesight. I had already had really bad dizziness and issues with my heart for years and the doctors have suggested it is possible that I have had it since I was young and that something has triggered it e.g. stress to make it really bad.

A diagnosis tree for ME/CFS
Source: me-pedia.org/wiki/Primer_for_the_public

You mentioned that ME/CFS expresses itself differently for different people. What sort of range/severity of symptoms does that encompass?

Louise

So you can get people with with very mild symptoms that can live a very normal life including working and having families and they might have a bad day occasionally which is what we call having a crash. It can take people different amounts of time to recover from a crash depending on how severe their ME/CFS is. On the other end of the spectrum is severe, and this can be people who tend to be bed bound to use an example there is a girl in England who has written a book whilst bed bound about her experience, her name is Jessica Taylor-Bearman and she has severe ME/CFS. She is very sensitive to the light so wears very dark sunglasses to block out the light. Another example would be the Netflix documentary called Unrest which shows how bad it can get. Some people spend years in hospital as it used to be that doctors believed it was a psychological condition not a neurological one. Some people also get pain when they hear sounds so wear noise cancelling headphones to reduce the pain that they are in.

You defined ME/CFS as a neurological condition, not a psychological one. Could you explain in simple terms what that means?

Louise

So previously when it started coming about doctors believed that it was just all in their head and that they chose to be that way. So originally many people were hospitalised into mental institutions for something that is now said to be neurological. By this it is something to do with the brain and nervous system although some further claims have been made suggesting it may also be something to do with the immune system. The brain controls a large amount in the body and the nervous system can help control pain which you can get when you have ME/CFS.

Is there a big difference between ME and CFS?

Louise

That's a good question. Basically my understanding is that ME/CFS are the same thing some people call it ME some say CFS. ME is the medical definition which some say is not correct as it translates to the swelling of the brain, so some believe the name ME is not appropriate as it doesn't encompass all of the symptoms. Although, CFS is also not always used as chronic is said to be correct but fatigue syndrome almost purely suggests that we are just tired all the time which isn't correct as there is so much more to it. The biggest thing is people believe you look fine but there is so much more to it which is why its an invisible disability.

Once you find out you’re diagnosed with ME/CFS, is there any treatment, or anything you can do/take to lessen its impact?

Louise

That is still a question I feel like I am asking. The NHS provide GET (graded exercise therapy) and CBT (Cognitive behaviour therapy). However, both of these have been found to be more dangerous than useful as it tends to worsen the symptoms and in some cases the severity of the ME/CFS. The one thing that the doctors have done that seems to help is they gave me an antidepressant. I was never depressed but something in it improves the ME/CFS by giving me a bit more energy and has helped relieve some of the symptoms. In Scotland there are no specialists in ME, if I wanted more help I would have to go privately to London. The only available treatment for me in Scotland is a Homoeopathic hospital in Glasgow. This is why ME/CFS needs more recognition in the UK to improve funding and help those living with the debilitating condition.

How has ME/CFS affected your ability to get involved in Ultimate?

Louise

Well for me it's had to be put to the side for the time being which is very hard for me as it was such a huge part of me and I feel like I've had to give up something I absolutely love. It's stopped me from doing sport unless in extremely short bursts like a game of badminton. Even going for a short walk can completely tire me for the day. I haven't even watched or helped as standing for a period of time can weaken my body. It's been a hard few months accepting it as there really is nothing else like the Ultimate community they really do feel like your family and it doesn't feel the same when you can't play.

What are things that teammates and friends can do if someone they know is diagnosed with ME/CFS? 

Louise

I think the biggest thing is to stay in contact. Especially for me as I am back with my parents most of the time and only occasionally in Stirling. It can become quite isolating and lonely when you are living with ME/CFS. Although I am not always in the best health I still want to know how my friends and teammates are getting on and I still like to see how well the team are doing. I've even had friends offer to do washing or cook just so I can spend more time with them as they are aware simple things can become harder for me. I think another thing is that they try and understand what ME/CFS is because so few people know about it and what it is. Everyone should feel like they can ask questions at the end of the day I would rather someone understand what I'm going through than not understand what it's like. Just knowing that they are there and supporting you or if you need something. You are a team on and off the pitch, you always have each others backs.

Are there any questions/topics you’d prefer teammates not ask about?

Louise

Not really I'm pretty open with it all.

Is there anything else you’d like to talk about?

Louise

I think one thing to remember is that even with this illness they are still the same person and you shouldn't give up on them or let them give up no matter how hard it gets. Always support them however you can.

Any resources you’d recommend to people wanting to find out more?

Louise

meassociation.org.uk/

actionforme.org.uk/what-is-me/introduction/  - Probably the most up-to-date websites about ME/CFS in the UK

netflix.com/gb/title/80168300  (Unrest Film on Netflix)

amazon.co.uk/dp/B07MXSYNLF/ (Jessica Taylor-Bearman's book about her experience)

Also, to follow Louise's photography, feel free to follow her Facebook Page