When NCNED announced and started recruiting participants for Severe ME/CFS research, I applied. With this project, the research team will visit severe participants at their home, instead of participants force themselves to go to the blood collection venues. This special arrangement made it possible for people with severe ME/CFS to participate in much needed biomedical research.
Communication with the researcher has been impressive. She informed what was going to happen and any delay in schedule as soon as it became her knowledge. I believe she must be very busy, however she always gave participants a thorough information in advance, which I appreciated very much.
The visiting team was the researcher (PhD candidate), GP, and phlebotomist. They are all friendly and understanding. Being the only male, poor GP was constantly barked at by my little dog, Basil. He has a cat at home, so it must added Basil’s disliking at him… Thanks to GP’s persistence, they were friends by the end of the visit. :)
The researcher explained the purpose of research and my right and possible risk as a participant. Then, I signed the consent form. She gave me information sheet about the research and researchers for me to read later.
GP checked temperature at ear, checked blood pressure, then counted pulse. I’d say they were consistent with my normal at home.
A friendly phlebotomist took blood from my arm. I used a pillow to raise my arm to her desired hight. Basil was particularly protective of me (or himself). He insisted to stay on my lap and stared at her. While I focused on keeping Basil away from the needle, it was over.
At the back of my head, I wondered if I met the phlebotomist before. She seemed familiar to me. I was already too overwhelmed by the things happening around me to ask.
(Sorry…, this section is more like ranting. I’m trying not to. This is not complain. I just say how things were for me. I wish I could be more help, but I feel I wasn’t.)
I don’t do well in questionnaire…
The researcher had advised there would be a questionnaire. I explained how difficult to answer questionnaire and asked what questions they were going to ask because I need to prepare for it. With my slowed and confused neuro-cognitive dysfunction, it would take forever to complete it and I fear that their schedule would be greatly behind because of that.
I cannot remember the long list of medication and supplements I take. I cannot remember what symptoms I suffered in the previous week. I get confused if it was 3 months ago or last week when I had severe symptom… Concept of time is distorted now and often confusing.
While scheduling the visit, the researcher introduced online questionnaire. (*1) I thought it was a brilliant idea. I could answer it with my own pace at my best functioning hour. If there is a tricky question, I could double check with my medication log and/or calendar to help refresh my memory.
So, I thought I answered all tricky questions online. I thought wrong…
GP started asking questions. I often asked back with my questions because the question was too vague for me or couldn’t figure out how to answer. The question could be a straight forward for non-ME people. GP couldn’t help much. I was trying to give the true view with my best of ability, but I knew I wasn’t doing well.
I feel my questions back to GP is a kind of decision-making process that healthy people would go through unconsciously within a minute or less, where my very challenged and extremely slowed neuro-cognitive function just cannot complete the process.
There were repetitive questions that I already answered online. There was Dr Bell’s severity scale. I answered I’m around 15% without reading the scale.
GP asked if I was having a good day or bad day… I couldn’t tell, because it was not my normal hour to be out of bed. I could have been much worse than I was. With having the visitors, I’m sure that adrenalin was surging to give me false energy and illusion of having good moment.
I cannot tell if I was having a good day or a bad day. I was just having a very different day. .
I don’t know how to accurately tell medical practitioners how I feel medically. I don’t have medical education. I didn’t have interaction with medical people before severe ME to give me understanding of normal “being sick”.
With established illnesses, doctors know what symptoms patients may have. Patients can just answer yes or no to GP’s question. GP’s explanation fits their symptom experience. There are proven, government endorsed and commercially available pathology tests that can confirm the diagnosis. Then, they go on with proven and established treatment.
With ME, onus of making doctors understand is on patients. I’m afraid it is an impossible task for me. Most doctors don’t understand my way of explaining symptoms, even if they believe I am sick. There is no commercially available pathology tests for ME. There is no medicine to treat ME. I know this is why we need good medical researches and need to answer the questionnaire accurately…
Anyway, the question continued…
When GP brought up the different disability chart, my brain was almost blank… One of the answers included the word “hospitalised”. And I though I would avoid hospitalisation with all my will because the idea of being treated by hospital specialists who don’t know ME feels very dangerous to me. They could kill me.
I couldn’t answer where I am at this strange disability chart. My brain was so exhausted that I couldn’t read the answer options anymore. I wished his questions were included in the online questionnaire…
I couldn’t give straight forward answer, just the unfinished decision-making process ended up in lamenting questions. I’m feeling guilty that I wasn’t useful for questionnaire part of the research. But, I did my best… (My friend with severe ME comforted me that she cannot give straight forward answer, either.)
I understand the importance of questionnaire and I try to cooperate as much as I could. However, in general speaking, I feel the way question is asked needs to be modified to the way pwME can answer and give the true view of their sufferings. It’s just my thought… I emphasise this is not complain.
The researcher kindly gave me a tetra pack juice and biscuits, as if I donated a blood to blood bank. I was hoping to take a photo of my blood, but I didn’t have a chance. So, here is the photo of the juice and biscuits, instead. :p
After the team left, I crashed. (I’m not complaining, and this is my normal at the moment.)
I’m still grateful that I could participate in the research. The team was very considering and understanding in preparation of the visit. And I’m very curious to see what they would find and publish.
It gives me hope to anticipate something good might come to us in the future. And for that reason, participating in medical research gives me sense of purpose. “Hope” and “sense of purpose” help me keep hanging in there.
(*1) Online Questionnaire
The online questionnaire I filled prior to the research team visit is also open for all Australian residents to complete as Registry of CFS/ME. The first page explains its purpose and how information will be used.
You don’t have to finish all the question in one sitting. If you live in Australia, I encourage you to participate in this questionnaire. This also needs to be filled by healthy people, so please ask your healthy family and friends to participate as well.
The NCNED Australian Registry of CFS/ME | Griffith University Research Survey Tool