Chronic Fatigue Syndrome research study

Through Georgina Downs, one-woman anti-pesticides campaigner (UK Pesticides Campaign), I have the opportunity to take part in a research study on the physical causes of chronic fatigue syndrome. I am in the pesticides category because for twelve years I have lived next to arable fields which are regularly sprayed with pesticides. The study is being led by Professor Basant Puri and involved giving up a day of my time to attend the Robert Steiner MR Unit at Hammersmith Hospital, London for various tests.

First, I had an MRI scan of my brain. In preparation, I had made sure I was wearing absolutely no metal of any kind – no piercings, no bra wires, no studs on my clothes, etc. Prof Puri couldn’t believe I didn’t need a hospital gown (I really wanted to avoid having to undress and wear one of those things), so I made sure I convinced him. I had to wear earplugs, because the scanner is so noisy, and a headset so that Prof Puri could communicate with me during the scan. The scan took a bit longer than it should have, due to hitches with the Philips’ software (much maligned by Prof Puri, and supporting Stu’s intense hatred of anything Philips!). Although I wasn’t able to see, I know Stu watched the screens avidly, and bombarded Prof Puri with questions and his ‘astounding knowledge’, while the scan was in progress. He also photographed the displays on the screen, so I have a record of some of the raw results. Here’s what they found (yes, a real brain!):

MRI Brain Scan - Image 1

MRI Brain Scan - Image 2

MRI Brain Scan - Image 3

It is so weird to see your own brain in images like this. To think that they illustrate what makes me me!

After the MRI scan, I had to have a load of electrodes attached to my head for an electro-encephalograph (EEG). I’ve had two of these before, the only problem is the sticky goo they use to ensure a good connection of the electrode to the scalp, especially when it’s matted in my thick, long curly hair. Stu wanted a photo of me wearing the net of electrodes, but I was definitely not going to allow that. While the EEG was measuring my brain waves, I had to do various puzzles on a computer, and watched out of the corner of my eye the EEG results scrolling across another screen.

During the EEG, another girl (who had arrived to take part in the study while the electrodes were being attached) emerged from MRI scanner room. She wimped out of all the other tests, saying she couldn’t manage. Well, I was thoroughly exhausted throughout (especially when the electrodes were being attached – it took ages), but I was committed to taking part in the study fully, to help the research as much as possible, and for my own interest and curiousity. More likely the problem was seeing me looking ridiculous with all those electrodes on my head.

When the EEG was finished, I got to have a shower and get all the goo out of my hair, then there a was physical examination. (Actually, I didn’t have a proper shower because it wasn’t the most salubrious of facilities – I decided on a rather precarious operation, which involved standing in the shower partially-clothed and washing just my hair, while trying to keep the rest of me dry – largely successfully!)

Finally, we chatted with Professor Puri and his assistants. They would’ve taken hair and nail clippings, to analyse them for pesticide content, but there isn’t sufficient funding for the analysis, so they didn’t bother. This was disappointing, because I’m very interested in finding out how much of the stuff I have in my system. Prof Puri says the brain scans will be analysed in due course and forwarded to my GP, and he will explain the results to me. I really look forward to seeing the results – what is shown here just proves I do have a brain, it doesn’t say anything about how well it works (or doesn’t)!

It was a really tiring day, I felt thoroughly exhausted and very hungry by the time they had finished with me and all I really wanted was a nice cup of tea. By the time we left (in the pouring rain), and Stu had retrieved the car, it was well gone 6pm and finding said tea seemed a rather remote hope. We stopped at quite a nice cafe on the way and had something to eat and drink, and then headed homeward. It was good to be home, but I was really over-tired and it was hard to relax.

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