On a blustery and wet day in May my husband and I had an exciting trip out – an afternoon visit to Oxford! We couldn’t remember the last time I had travelled anywhere with him by car and it had been such a long time since we’ve been out together as a couple. In order to prepare for the trip, I’d booked the morning off work, so that I could rest up and be as well as possible. But this was no ordinary afternoon out…
After an early lunch at home, we drove to Oxford Brookes University, to take part in a research project on ‘Brain processes involved in sensory experiences of individuals with ME/CFS’. It is known that some people with M.E. experience sensory issues (such as light and sound sensitivity). The Oxford Brookes study is using neuropsychological tests and EEG to try to investigate a link between brain function and sensory processing in people with M.E.
I’d seen the study advertised on the Action for ME website back in March but, at that time, the research was on hold due to the Covid-19 lockdown. I was contacted in April and advised the research could resume again in May. The University needed individuals with ME/CFS (me) and individuals without ME/CFS (my husband) – so we decided to both sign up and do it together. Participants needed to be aged between 18 and 65 years old and have no history of neurological conditions – so we were good to go.
We were able to park close to the entrance of the University building and we were met and given a very warm and friendly welcome by Dr Alfred Veldhuis, who conducted the research. My husband and I were able to take the lift to the Psychology Department, while Dr Veldhuis ran up the stairs to the fourth floor. (Before I fell ill, I would have gladly taken the stairs but, being unwell, I was very relieved that observing a person with M.E. climb multiple flights of stairs wasn’t part of the study…)
The appointment lasted around three and a half hours. My husband and I each took part in the same tests and there were three sections: a number of activities on a tablet, time spent setting up the EEG equipment and a series of computer-based activities, whilst the EEG was being recorded.
An electroencephalogram (EEG) is a recording of brain activity. During the test, small sensors are attached to the scalp to pick up the electrical signals produced when brain cells send messages to each other. These signals are recorded by a machine and are looked at by a doctor later to see if they’re unusual.Information from the NHS Website, May 2021
I completed the activities on the tablet first, while my husband went off to get his EEG cap fitted. As I sat down to start the activities I thought of all the friends I’ve made online who have M.E., many of whom have far worse symptoms than I do, but have shown me such kindness and empathy, it has been truly humbling. I also thought of Whitney Dafoe, an American with severe M.E. who is the son of Ron Davis, the esteemed Professor of Biochemistry & Genetics, and Director of the Stanford Genome Technology Centre; a father on a mission to solve the mysteries of M.E. and find a cure.
There are so many good people out there who need this illness to be researched and understood. For a lot of people with moderate and severe M.E., taking part in this research would be incredibly difficult, if not impossible; which is why I felt it so important for me to get involved. Sitting there, alone, in the dark, trying to spot number sequences on a tablet, my heart was with the M.E. Community. My mind, on the other hand, seemed to have deserted me but I bumbled my way through the activities as best as I could. There was the option to rest in between each section, for as little or as long as you wanted. At the end of the tablet activities I sat for ten to fifteen minutes to prepare for the next part of the research – time to get fitted with a fancy EEG cap!
When I entered the EEG lab, I found my husband already sporting a flashy red and blue cap and I remembered why I first fell in love with him. I’d asked him to watch the film ‘Unrest’ by Jennifer Brea the night before and it really moved him and helped him to understand why I am so passionate about helping the M.E. Community. My husband went off to do the tablet activities, while I had my EEG cap fitted and then did the computer-based activities for the EEG. Dr Veldhuis confided in me that he’s organised everything this way round to make it easiest for the person with M.E. (shhhh – just don’t tell my husband…!).
We’d been asked to wash our hair before the visit – but not to use any conditioner, or apply moisturiser to our face, as fatty substances can intefere with the signals for the EEG. The cap fitting was fine – just time consuming, as all 64 electrodes need to be individually plugged in and gel is carefully applied between the electrodes and the scalp (using what looked like very scary needles but are actually not scary at all!). Dr Veldhuis was obviously very skilled, as everything went very smoothly; especially considering he had to wear gloves throughout the quite fiddly process, due to Covid-19. I didn’t mind sitting quietly while everything was set up, as it gave me chance to rest my mind for a while, which was good. I also found out that my head is 34 inches from front to back and side to side – so I’m very symmetrical! That’s somehow good to know…
When I was wired up and plugged in, and ready for the EEG to begin, we received confirmation that I do have a brain – which some of my friends had been rather concerned about when I told them about the appointment…. (thanks friends!)
I found it fascinating to see a visual image of my brain waves flash up on the screen. Dr Veldhuis explained that some of the electrodes picked up muscle movement – so I could see my blink reflex echoing on the screen, and the muscles in my face working when I smiled (or yawned!). During the activities Dr Veldhuis monitored my brain waves from the room next door and he could also watch me on a camera, to make sure I was doing okay. It felt like the activities went on for a very long time and I found it incredibly tiring but I did my best to concentrate right to the end.
Next, my husband took his turn at having the EEG. Dr Veldhuis showed me at one point on the EEG readout that my husband was getting sleepy! He hadn’t slept too well the night before so I think he was starting to flag a bit. But he stayed awake and made it through to the end of the activities.
Once we were done, Dr Veldhuis thanked us for our time and participation and showed us out of the building (and then, I imagine, went back to meticulously cleaning the EEG caps, a job which I don’t envy him at all – but looking after the equipment is a big and important part of the research!).
My husband and I drove back home, pleased to have helped out with some research into M.E. and hopeful that one day the M.E. Community will have some answers. I really can’t thank the researchers who are looking into our cause enough. It means so much to have their support and I am so grateful to have been able to get involved.
If you, or someone you know, might like to take part in this study, please contact Dr. Alfred Veldhuis for further information: firstname.lastname@example.org
Currently there is no specific deadline for taking part. The study will remain active until 80 participants (with and without M.E.) have been recruited. Participants will receive a £30 Amazon Voucher for their trouble. Travel expenses are reimbursed up to £30 for individuals with M.E. and up to £10 for individuals without M.E.