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Connecting women and opportunity

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Connecting women and opportunity

Womanthology is a digital magazine and professional community powered by female energy and ingenuity.

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Learning to live and work with ME, the misunderstood illness

Natalie MacWilliam, Notetaker and Live Captioner in Disability Services

ME representation image

Natalie MacWilliam works as a self-employed note taker and live captioner for disabled students and people in the workplace. Natalie was diagnosed with ME at 12 years old, but despite the challenges she faced in her school education, Natalie studied two years of a medical degree at the University of Aberdeen, before her ME forced her to withdraw, so she transferred the credits for this to an Open University course, later going on to complete a degree in health sciences. She also holds an art history degree at the University of East Anglia and has used that experience of life on campus to help support others with disabilities in her role today.

Natalie MacWilliam
Natalie MacWilliam

“Having ME is very difficult, not only because of the symptoms but because of how it is viewed and treated in society. For a long time, I avoided telling people my diagnosis initially so that I did not have to deal with any opinions on it they read in an ill-informed article.”

School years

I have always enjoyed school and my studies, but my education ended up being disjointed because of my illness. I developed ME (myalgic encephalomyelitis) when I was 12 and so I missed out on a lot of high school education (in Norfolk we had a first, middle and high school system).

I started off going part time when I first became ill and had extended periods off when I relapsed or crashed but this did not last too long and I ended up being mostly housebound and unable to attend school. I stopped attending school at around the end of Year 8 and did not return properly until the sixth form.

I had a whole year without much education at all. I did have some homeschooling from the Visiting Teacher Service but often missed sessions as I was still not really well enough to have just a few hours a week of consistent homeschooling. I had some improvements just before I got to GCSE age. It took me three years to manage six GCSEs with some part time lessons at my high school, some schooling with a small local group for children who were not able to attend school, and one done through an online school.

Feeling better

School libraryOnce I started to improve with my health, I did catch up fairly quickly and did well in my GCSEs. I was accepted into my local sixth form that was attached to my high school and starting with three A-Levels instead of four.

I was allowed to go home to rest during free periods and did not have to do any PE so I was well supported in my education at this time. In the second year of my A-Levels I picked up an AS-Level so that I could have the same number of A-Level qualifications as any other school leaver. I did very well in these exams and despite the years of education that were lost or part time, I only had to go back one year due to spending three years on GCSEs.

As my health improved and my A-Levels were going very well, I started being more optimistic about my career options. I decided to apply for medical degree programmes as I loved studying human biology in my A-Levels and wanted to go into some career that would help people and maybe some like me who were dealing with chronic illness.

Studying medicine

My lack of GCSEs was an issue for most universities, even though they said they would take my illness into account, but this was not a problem in Scotland. This was great for me as Aberdeen was always my first-choice university and they gave me an offer. By the time I finished my A-Levels, I was in full remission and confident that I could cope with the demands of a medical degree, however, I thought I had fully recovered.

I was extremely happy at Aberdeen and enjoyed being able to deeply engage with my studies, join societies and have a busy social life without the limitations of chronic illness. I even started participating in sports and exercise, which had been impossible before the remission.

The remission came to an end towards the end of my second year when I suddenly became very ill and within a couple of weeks, I went from full functioning to mostly having to stay at home and not being able to study. I recognised what was happening fairly quickly and it was devastating as I suddenly lost all of my future plans and a large part of my identity as well as my time at university.

A new direction

I took some time to rest after my relapse but never got to the same level of functioning I did before. After a couple of years, I wanted to go back to university but knew this time I would have to make some choices that would work better with my ME so that I could manage the course.

I went to the University of East Anglia, which was much closer to home so I could have support from my parents. I chose to study art history which had fewer contact hours so it was more manageable for me. Also, arts and crafts were something that kept me going during my mostly housebound years and I liked the idea of having the opportunity to study art.

I lived on campus to start with so that I could rest between lectures. In my first year I was using a wheelchair and applied for support for someone to take me around campus when needed as my arm muscles become very painful if I was to propel the wheelchair myself. (It is also a form of exercise, which is the worst thing for ME and leads to more symptoms.)

I managed to slowly improve through my time at UEA and I made sure to rest completely during the holidays. I did often have to make use of extensions as it often took me longer to complete essays with the limited energy I have and whenever I catch a virus it hits me hard and I have to take time out to rest, which also impacted my deadlines.

Practical support

I made sure to apply for Disabled Students Allowance (DSA) as soon as I was accepted into the university and the assessor came up with a lot of helpful ideas of how I could be supported in my studies. I had software that could read out text when my eyes were tired, a printer so that I did not have to travel to the library, the use of a computer during exams and funding for physical support such as taking me around the university in my wheelchair and getting library books out on my behalf.

Connecting with the wider disability community

During this time, I joined a society for chronically ill and disabled students that connected me to a wider disability community and I learned more about the experiences of those with conditions different than mine. This was also the first time I saw that ME is a disability as well as a chronic illness, despite needing to use a wheelchair as a child and spending much of my time housebound.

I found this experience very empowering and learned more about the social model of disability and the Equality Act. I found that people with ME face similar challenges to other disabled and chronically ill people and I think that ME being part of wider conversations on disability rights would be really helpful alongside working on awareness and research campaigns specific to ME. I graduated after three years and was happy to have achieved a degree after having to drop out before.

Practical experience

By this point, I did not have much career experience which made it difficult for me to find work. When I was doing my A-Levels I needed to use all my energy on school so had no opportunity to work at part time job. After that, I was either too busy studying or too ill to be able to work.

I did an internship after my degree at the UEA and was very happy to gain more experience but I developed a separate health condition halfway through and suddenly was not able to work. I was very unwell with this but ready to look for work again after surgery treated the problem. I was lucky to be mild at this point and able to look for work as the vast majority of people with ME do not have this opportunity.

Becoming a notetaker and proof-reader supporting disabled students

I found an advert online to be a notetaker for a student and I really liked the idea as I loved being in the university environment and had a good understanding of the support needs for disabled students. I was surprised to get the job with my lack of work experience but was very happy to get it and enjoyed the work.

This then led to more work in student support providing physical support of students on campus. I was not able to do anything too physical but did support students during practical classes, such as labs for science students.

One agency I was working for helped to finance a qualification in electronic notetaking which made sure that I stayed within the regulations to make sure students had a good standard of notes. In this course, I learned how to take notes quickly on a computer and structure them for students with different needs. There was also a lot of teaching on disability awareness and advocacy, which was very helpful for me personally as well as in my work.

As well as notetaking, I also provided proofreading services for students with conditions, such as dyslexia and dyspraxia, that can affect their writing. All of this work is self-employed freelance work that suits my illness very well as I can choose the right number of hours for my level of functioning and tend to have a lot of time to rest during the university holidays.

Once I had settled into my role as a notetaker more, I thought more about my time studying medicine and wanted to do more with that education. I was awarded a Diploma in Medical Science for completing two years of the degree. I was still very interested in studying science and thinking ahead that I may want a career in medical science in the future.

I transferred my medical school credits to the Open University and began to slowly study with them alongside my work. Initially, I found this difficult but then decided to only study one module each year so that I could balance work and studying. I already jumped to the end of the second year or level two modules as I had transferred my credits so this would not take as long as starting from the beginning.

Last year I completed this degree in health sciences. I really enjoyed my studies with the OU but at the same time, I developed more in my notetaking and student support work. I became more confident with practice and took continuing professional development courses. I am now very happy with my current career and not looking to change anything at the moment but it is nice to have a broad range of qualifications to keep many options open to me.

My work day-to-day

Day-to-day I sit in on university lectures and seminars and take notes for the students I am assigned to. I mostly work with deaf students because it is more difficult for them to pick up everything the lecturer is saying and write it down at the same time. It means they can engage more in the class without missing anything whilst they were writing or if the situation made it difficult to lip-read.

I work via agencies who match the students with notetakers so I have some communication with them to book the session and they help out with any problems that arise. This means I am much better supported than many working freelance as the agency can chase up any problems and manage the bulk of the admin.

At the moment, all of my work is online. Instead of sitting in the classroom I connect virtually to these sessions, which opens up more opportunities to work with students that do not study in my local area. I also do remote live captioning through specialist software that means a client in another part of the country can see the captions as I type them.

I sometimes caption work meetings for clients who are using Access to Work to get the support they should have in the workplace. I am also doing some proofreading but can book these hours at any time to fit around other work I have and so that I can manage my ME.

ME from an individual’s perspective: More than fatigue and malaise

It is very difficult to describe what it is like to have ME, even after 20 years of being diagnosed. I find that a lot of the language to describe ME, such as fatigue and malaise, has lost some meaning over time. The fatigue is not like being tired at the end of a long day but sheer exhaustion that makes even simple tasks difficult to complete.

MEIt is more similar to the fatigue that comes with anaemia or the flu but you have it for decades instead of short periods of time. I have had times where I was so exhausted that getting up to get a glass of water felt impossible. I was briefly at the more severe end of the spectrum and at this point I was sleeping most of the day and activities most find relaxing, such as watching TV or listening to an audiobook, were too much for me.

Even though my ME is milder now, I still experience a lot of symptoms in addition to the chronic fatigue most people think about when ME is discussed. The main characterisation of this illness is post-exertional malaise (or PEM). This means that after activity beyond what I can normally do, all my symptoms get worse in response. This usually happens around one to two days later which makes it much harder to manage my activity levels.

Managing energy levels

One of the main experiences of having ME is having to constantly manage your energy levels and make sure you are not overdoing it. I make continuous choices between tasks that need to be done to make sure I do not crash and end up needing time off work. This can mean ready meals and skipping on cleaning when I need to devote energy to working or going out during the day.

I also need to have rests during the day to make sure I have the energy to get through it. I have heard people describe ME has like having a battery that does not work well and is very inefficient. If it was a phone battery it would mean having to find places to charge it during the day and never using game and media apps that drain the battery power.

I experience a lot of muscle pain after doing any activity that uses my muscles too much. Sometimes I don’t even know what I have done to make a muscle hurt but usually I can connect it to something specific, such as being on my feet for too long or moving something heavy. It does not feel like I have done a good work out but to me it is more like muscle pain from having an illness, such as the fluey aches you can get with a virus.

I have a headache most of the time that gets better and worse so most of the time I can ignore it but need to take painkillers when it gets bad. There are a lot of other symptoms that come with ME. I also have vertigo, problems regulating my temperature so that I overheat easily, feeling dizzy and faint when I stand too long (orthostatic intolerance), blurry vision when my eyes are tired, and some cognitive problems. I am affected much more physically than cognitively which allows me to still work effectively even when I am struggling with getting physical tasks around the house done.

A spectrum of symptoms

I know within the ME community I am in a privileged position to have mild ME. When most people meet someone with ME it is someone who is milder or maybe someone with moderate ME who can go out once a month when they are having a good day.

Most people never see what it is like for those who have severe ME and are mostly or completely bedbound. They cannot cope with much activity at all and often have to stay within one darkened room and wear ear defenders due to light and noise sensitivity being so painful. All of their symptoms are so much worse and they still feel extremely unwell even with a large amount of rest. These people with severe ME are often forgotten as they are less visible in society and people do not see what they go through day to day unless they pay attention to awareness campaigns.

Even with milder ME, people don’t really see what the illness is like because you cannot really see it. Most of the time I look completely well and even when I am struggling I might just look a little bit tired but this does not reflect how the symptoms feel.

Where it started

ME usually develops after a virus that then leads to post-viral illness. The way I got ME is a bit unusual because I had a series of bacterial and then fungal ear infections. I seemed to recover from the ear infections initially after taking antibiotics but after each infection I was a bit more run down and did not recover as well. Eventually, I was at a stage where the ear infection itself had cleared up but I still felt ill as if I had an infection with the general feeling of malaise, fatigue, dizziness and headaches. Over time I developed more symptoms, especially after relapsing.

Having ME is very difficult, not only because of the symptoms but because of how it is viewed and treated in society. For a long time, I avoided telling people my diagnosis initially so that I did not have to deal with any opinions on it they read in an ill-informed article. Many people still think that ME is psychosomatic and people with the illness simply need to do some exercise and get over it.

Others are more well-meaning by suggesting remedies such as yoga, certain diets and various therapies to cure the ME but this is still harmful as it is very dismissive of the person experiencing this life-changing illness to suggest something so simple would make them better. It also uses up a lot of energy trying out different alternative options to try and get better so it is not a case of ‘you might as well try it’ and they usually do not work.

The diagnosis is not well defined or controlled so there are people dealing with fatigue from burnout or chronic stress that get diagnosed with ME but find that exercise and sometimes psychological therapies can help them, but then that can misrepresent the illness. I sometimes hear people say something like: “I knew of someone with ME but they got over it quickly.”

People with ME often have to deal with much more negative opinions of our patient community as well because we have been represented in the press as dangerous militant activists for just advocating for our own healthcare and to remove treatment programmes that are harmful to those with ME.

Planning around daily practicalities

Even at a milder level, my ME affects pretty much my whole day in some way. The major thing is that I cannot do any tasks that are too physical so I avoid tasks that involve lifting something heavy or exercising. I find other ways to get around this that can involve using different equipment, for example, we now have a hot water dispenser as I was struggling to pour from a heavy kettle.

What I am able to do in a day is carefully considered and balanced with the energy limits I have. I know what work I have for the day and always put that first and work around it. I do make sure I do not book up my timetable too much otherwise I would quickly feel worse and need to cut back.

I am careful with this as I also know it is difficult for the student or client to have another notetaker come in halfway through their module. I am not affected too badly cognitively which means I can engage in my work really well and focus on what I am doing, even when live captioning continuously for a few hours.

Optimising how I use my energy

All of my symptoms are much worse in the mornings and at this time of day I can have some problems processing information and concentrating that I do not have once I have woken up a bit more. I also find that the same activity will use up more energy if I do it in the morning instead of the afternoon or evening. Therefore, I make sure I don’t book live sessions in the morning and that these take place instead when I am at my best. It does mean I have to turn down some work but I am lucky to have some evening work and other work I can do at any time.

Although I can work well with the right part time role, it means I have to cut back on other activities. This can mean on a day when I am working 3-4 hours, I will plan to have a ready meal instead of spending energy on cooking and even plan showers around how much I am doing each day. I think I have balanced this well as I am managing with work at the moment but it is so easy to slip up and overdo things.

It is really easy to save up household tasks for the weekend and do far too much ahead of another work week. I tend to use Saturdays to rest more and make sure I am recovering from my work week and then get round to doing some things that have piled up a little on the Sunday. I also have a day off in the week which really helps me to manage everything.

Using up more energy on work can mean that I sacrifice activities that are hobbies or considered relaxing. I enjoy various crafts but have to spend much less time on these when I am working and pick them back up when I have less booked.

My job really suits my illness because I get regular time off during the university holidays and most students have a reading week in the middle of each term that gives me some time to recharge.

It can be difficult to manage my activity as you may not feel the effects of overdoing things for two days. I have 20 years of experience with this illness and manage my activity well, on the whole, put still slip up or have had to push myself a bit too much depending on what is happening in my life and then have to deal with a crash or mini-relapse from this. This is why I am extra careful during the times I am working to make sure I can meet all my work commitments.

Unlikely help from COVID-19

For me, COVID-19 has made my working life so much more manageable and easier. Before the pandemic, I was supporting students in person on campus and often had to walk around to get to different classrooms. Now I just go upstairs and set up my equipment. It also means I don’t have to spend all the energy that is involved with commuting of standing and waiting for buses and hoping there is a seat free.

Working from home also means I can rest more during the day between work sessions. Taking rests during the day or spending time on relaxation is the main way I manage my ME and if I did not rest at all then I would very quickly go downhill. Some people may think of it as sounding so nice to be able to take time to relax in the middle of the day but it is really a requirement to make sure you can get through the day.

I now have a much better work set-up that helps with my muscle and joint pain. In a university environment, there are different types of chairs in each room which can make it difficult to set up things in a comfortable way. I have an ergonomic office chair that helps me a lot now to make sure pressure is taken off my joints and muscles. I have a stand to keep my computer screen at eye level and use a wireless keyboard with it. This is particularly useful for me as I have migraines that are triggered by tightness in the neck muscle and this set-up keeps them relaxed.

I think that the change in the way we are working has really helped me to develop professionally as well. I got a lot more opportunities to provide live captioning that were quite rare for me before. I can now take notes for any student in the country rather than relying on someone needing notetaking locally and it has given me a lot more opportunities to take training courses online so I can improve many aspects of my work.

The main drawback for me during COVID has just been dealing with more technical problems as I tend to connect with universities online and that means there is a lot that can go wrong. I do understand that for most of my clients, who are deaf, the pandemic has made things much harder. It is much more difficult to lipread or follow the audio from an online lecture, which is why there are more live captioning jobs. Even in person, most people are wearing masks preventing any lipreading and this makes accurate notes even more important.

A misunderstood illness: Piecing together the puzzle

I don’t think that ME is particularly well understood at this time but I know there is a lot of good quality research currently happening that looks at its different aspects. It is a disease that affects so many systems in the body that it is difficult to have a strong focus in the research. I am aware of research looking at the blood in general, the immune system, metabolism and the mitochondria, gut disorders that are common in people with ME, the nervous system and how ME is connected to other chronic illnesses, such as fibromyalgia.

To me it feels like a lot of puzzle pieces are being discovered but we have not put them together yet. It is partly so poorly understood because of the severe lack of funding into ME research over the last few decades. It has been overlooked despite causing such severe illness and disability in many people and much of the UK research is funded by charity donations.

Reclaiming ME

Another big problem is that ME was taken over by a small group of psychiatrists who are convinced there is no physiological pathology and it can be cured with graded exercise therapy (where you increase the amount of exercise you do every week and ignore any symptoms) and a form of cognitive behavioural therapy that focuses on telling patients to ignore symptoms and not be avoidant of activity.

Seeing as the key symptom of ME is a worsening of the disorder after any activity, especially exercise, this view has been extremely harmful to those with ME and affected how they receive any medical care. It also affects how ME is reported in the press and means that family and friends may see articles that you just need a good walk and you would be fine and then not have any understanding of your illness and limitations.

There is a very small amount of public money from the Medical Research Council that is for ME research and nearly all of it goes towards psychological research that is usually very poor quality and one is even being used in university teaching for students to learn how to critique articles and spot problems as it is so poorly designed.

The medical treatment I have had has been very inconsistent and placed many barriers to me getting proper medical care for any illness I have. When I first got ill at the age of 12, my GP was supportive and knew I was not faking it but the paediatricians I was referred to at the hospital were terrible.

One decided very early on in the consultation that I was school-phobic and had no physical illness. Her recommendation was that I should return to school full time including PE. Another was just very concerned with testing me for a coordination or vertigo disorder but provided no help. I got the classic response that all my tests were normal so there could not be anything wrong.

Finally finding understanding

Luckily my parents were very supportive and did not force me to go back into school when I was too ill to leave the house. After several months of having very little medical support, a family friend told us about a local ME specialist, and I was referred. This is how I first went to Dr Mitchell’s office. He has sadly died now. He was the first person, medic or non-medic, that really understood ME and how it affects you. I got excellent care from him and his occupational therapists.

I filled out activity sheets at a point where I was already housebound and not up to doing much. He showed me how everything I was doing could be an activity that uses up energy. He also told me to take rests throughout the day in order to conserve energy and the occupational therapist taught me some relaxation techniques. I found it very difficult at first to take rests because as a child, even though I was very unwell, it was so boring and I was already bored a lot of the time because of my limited energy.

Now it is like second nature and I can very easily switch off for 25 minutes without falling asleep. Dr Mitchell also got me onto medication that helped with my poor-quality sleep and provided evidence to my school. I know I was extremely lucky to be referred to this clinic at a time were many other ME patients across the country either received no specialist care or were encouraged to undergo harmful therapies that made them worse.

Hit or miss

Since then, it has been very hit or miss with medical care, even when it is for something unrelated to my ME. I am in a privileged position of having mild ME and so I can play it down when I see a consultant for another condition. I usually mention it last when going through my history and say something like: “I am much better than I used to be and can work now so it’s not really a problem” because I know there is the potential for me to be judged just on this diagnosis.

I have had severe asthma symptoms every summer for years due to what I think is a very severe pollen allergy. This has been labelled as anxiety multiple times which affected the way my asthma was treated initially. I think a lot of medics have been taught that ME is a psychosomatic condition and so when they see it in someone’s notes they automatically think that whatever is going on must have some psychological involvement. Usually, this has no evidence when the alternative does, such as my peak flow readings for asthma or blood tests.

I was referred for an endocrine disorder that showed up on blood tests and the consultant insisted that it must be down to the ME and did not want to treat it. I went straight to the surgeon instead who was happy to treat it and I felt so much better afterwards. It could be the consultant could not believe someone could be so ill with the endocrine condition I had but many do not consider that with a chronic illness you are already very unwell so anything on top of that will hit harder than it does for a healthy person.

Celebrating the good experiences

Natalie MacWilliamI have had some good experiences as well with those who are understanding. One time a paramedic knew about ME and that it was not psychosomatic, which made me feel much more comfortable when receiving emergency treatment for asthma. I saw a neurologist for my migraines and I was so happy that she knew one of my medications can be good for muscle pain and function in ME.

When a medic does know about my ME it makes the treatment so much easier and has a massive impact on the patient and their trust in medicine. It can just be a small comment to show a doctor understands what ME is like and that leaves a long-lasting positive impression. My GP now is fantastic and I know that I could be open with her about how my health is doing, which is how it should be.

Misdiagnosed and misunderstood

I have had some very negative responses as well. When I relapsed at university, I contacted my university-based GP to update him that I was relapsing and that it should go on my notes. Previously he had been very good as a GP with other health problems that came up during my remission. I needed to have a home visit as I had become too ill to go out. He was annoyed at being called out to see a younger patient so from the start it was difficult.

I said it felt the same as my ME before the remission and said how it was affecting me. After hearing three symptoms he declared that I must have depression and that I should see a psychiatrist. My close friend and housemate who was there at the time and thought it was so ridiculous for my GP to suggest I was depressed because I was so happy at medical school.

I refused to go and see the psychiatrist as I knew it was a waste of time and energy so my GP there sent me a letter that I was agoraphobic as well. Aside from this terrible misdiagnosis when I knew what was happening, I am very concerned that a doctor would throw around serious mental health diagnoses with very little evidence, or even seeing me in one case.

More accurate teaching required

As I was a medical student, I have a good idea why medical care is so hit and miss for ME patients. ME was only mentioned once in the two years of lectures I had. It was in a lecture on functional and psychosomatic illnesses and there was just one slide. At the end the lecturer did mention that MS and Parkinson’s disease used to be thought of as psychosomatic until medical imaging showed the cause and that we should treat these patients with understanding and compassion. I still felt like it sent the wrong message and everyone in my year would have ME listed under psychosomatic illness in their notes.

I know that later in the course students at the medical school had very disjointed information on ME as we were taught by many different doctors who were practising as GPs or as hospital doctors. Some were taught people with ME are just fakers and will waste your time, others heard it is psychosomatic but most are resistant to the psychological therapies you will prescribe and some would have a more accurate account of it.

It reminds me how difficult it is to live with a controversial illness as you have to deal with everyone’s opinion on your condition as well as the symptoms. I was at medical school just over ten years ago so I really hope things are different now and there is more accurate teaching of ME.

There are some criticisms of ME patients that we are against any involvement of psychology because of the stigma of mental illness but in reality, ME is already stigmatised and we just want accurate answers. Patients know from personal experience that it is not a psychosomatic condition and that the treatments based on this theory make people worse.

Guideline changes (at last!)

The change in the NICE [National Institute for Clinical Excellence] guidelines means so much to me and it was very emotional to read through the new publication on it. There is still a lot more improvement that could be made but it is so much better than what we had before. It removed the use of graded exercise therapy (GET) and CBT (Cognitive Behavioural Therapy) as treatments for ME which have caused so much harm to so many people.

MEMany who are severely affected and bedridden are there because they were advised to do GET when their illness was milder and some even died from ME after being very severely affected for years. It probably will not affect my treatment as I now manage it on my own as I already know the management techniques. But I am so happy that newly diagnosed people will no longer be told to engage in harmful treatments and then blamed for doing it wrong when they inevitably deteriorate.

It does feel strange though to be in 2021 and celebrate that we are no longer prescribed harmful treatments. Progress has been pulled back so much by a small group of psychiatrists so this gain is tinged with the knowledge that had ME not been psychologised we may have an effective treatment by now and possibly know the pathology of the disease.

There were so many parts of the new guidelines I was very happy with. It included severely affected people who are often forgotten as they cannot travel to doctor’s appointments and are actually excluded from fatigue clinics who do not do home visits or phone appointments when these are the people who need the most support.

I was pleased to see that it advised rest for the patient as soon as you suspect post-viral illness and before diagnosis. If this was in place and enacted by doctors when I first got ill then I may never have got as bad as I did and would not have lost so much of my childhood. There was no real reason that this could not have been the guidelines when I first got ill as the really good consultants in ME knew that resting and pacing were key before then.

It is difficult to think how different things could have been but I am so happy for those whose lives will change for the better now due to the guidelines. Even if people come across medics who have not seen the guideline change or disagree with it, patients now can use the guidelines to make sure they get the medical care they need. It also means that patient groups and charities can hold fatigue clinics to account if they are still offering GET and CBT.

Hope for the future

It also gives a lot of hope for the future and for change. Over 20 years of having this illness I did not really see any changes other than more awareness but this is the first time I feel like progress is really being made and hopefully it will lead to much greater things. However, how it was handled in general reminds me how difficult it is to many any progress.

Certain members of the royal colleges that support the psychiatric view of ME halted the publication of the NICE guidelines in August 2021, which is extremely unusual. A roundtable discussion had to be held to get everyone to agree before it was then published in October 2021. It seemed after this meeting everyone was happy but there was a lot of backlash in the press from these same people showing their disappointment that GET was removed and complaints that it did not follow the science, even though during the writing of these guidelines the research supporting GET and CBT was agreed to be very poor or poor quality.

This was expected but still very difficult to deal with such as misrepresentation of the illness that affects my life so much and shows what patient groups are up against when advocating for those with this illness.

Recommendations for employers

I think the most important thing for the employer is just to listen to the employee with ME and trust that they know what works best for them. Even though people with ME share core symptoms, each person will need a different kind of support. It is very useful to have an open and understanding atmosphere when talking to an employee with ME about accommodations as there may be some that are difficult to talk about or that do not fit most people’s ideas of accessibility in the workplace.

It could be that they need frequent breaks through the day or flexible hours so they can work when they feel at their best. It is also good as an employer to have some knowledge of Access to Work and then you can recommend it to the employee with ME as they can provide specialist software or money for taxis to work.

Allowing the employee to manage their workload, depending on the job, can be helpful as some tasks will be more demanding than others. Most people with ME plan out their day according to what they have planned and how much energy they have so it is good not to ask them to take part in last-minute tasks and meetings that affect this.

The person may look fine at work but you don’t see what it is like for them when they go home. I often think that being ill with ME and managing it is like a full time job in itself and everything else you do is on top of this, which is why most people with ME can only work part time. I think it is important to keep in mind that people with ME tend to cover up their illness and fake being well to fit in rather than exaggerate their illness. So, if they tell you something is too much or they feel really ill and need to rest then you should listen to them.

In terms of filling job vacancies, employers need to understand that people with ME may have gaps on their CV when their illness was much worse and they were unable to work but their work performance can be just as good as those without gaps in their CV. They would have had no control over this gap and most likely made the most sensible choice to prioritise rest.

I think that being mindful of workplace bullying is also important. I have been lucky enough not to experience this and worked with wonderful employers and agencies. I think working in disability services can be really helpful as those working with you will already know the importance of accommodations and supporting co-workers with disabilities and chronic illnesses.

I do know some people with ME who have faced workplace bullying that is focused on their illness. They often experience co-workers disbelieving their illness and taunting that they made it up for attention or to get special treatment. It usually looks like the bullying co-workers are jealous of the accommodations a chronically ill person needs in order to work. This can be really tough on someone with ME who is already trying to cope with work on top of their illness. It is difficult to educate co-workers behaving in this way but having support from an employer and HR can help.

Coming up next

It is a bit difficult for me to plan ahead at the moment with COVID still around in such high numbers. I am still partially isolating as I know having any virus could worsen my ME and COVID would be very bad for my asthma. I am looking forward to getting my booster vaccine that I have booked and that means I can spend more time with my friends and get out of the house a bit more. I am very happy in my work now and working on developing more professionally.

You can find out more about support by visiting the ME Association’s website and social media channels.

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