Last January (2014) I read about a research project to try and find a bio marker to identify Me/cfs. I suffered from ME initially in 1996-97. Although it robbed me of my career I did, over several years, make a good recovery. September 2013 saw its unwelcome return and despite all my previous experience and determination, progress has been painstakingly slow.
I therefore wrote to the London School of Hygiene and Tropical Disease volunteer to be part of the project and on December 11 2014 I finally made it through their doors!
I knew my appointment wouldn’t be able to offer any answers or advice to my illness but banking in my blood still seemed like a positive step forward to try and help unravel the mystery of ME cfs for future generations.
Need for research
ME continues to be an illness shrouded in mystery, ignorance and in some circles is still dismissed as a state of mind and not even viewed as a true illness. Research is therefore vitally important for people to get both a reliable diagnosis and helpful advice in managing the condition. Sadly, many people are given dangerous advice to “press on” through their illness or to build up their physical stamina through graded exercise which almost universally only makes the condition worse.
The most time consuming part of the appointment was the patient questionnaire: almost 20 pages of questions relating to physical, mental and emotional health! Fortunately this was done at my own pace in the comfort of my own home prior to the appointment!
The clinic was at Great Ormond Street and comprised of taking urine and copious blood samples! Although the nurse said that, as yet, no bio marker to identify ME had been found, the samples will also be banked for future research projects.
Apparently 90% of the blood samples come back ‘normal’ so it already looks like further research is required and funding to keep the project going is vital.
Body composition measurements were also done; height, weight, waist circumference, body muscle, basal metabolic rate (BMR) and body mass index (BMI)
The tests to measure blood pressure, lung capacity and general fitness were interesting. Several tests were done to record blood pressure: firstly sitting, and then after standing for a minute. It was interesting to see how much my heart rate increased when standing. It shouldn’t have been a surprise, standing still has always been gruelling and can leave me breathless, weak and lightheaded. It’s also typically symptomatic of ME/cfs.
The lung capacity test was recorded by blowing into what looked like a breathalyser! Again, no surprises that my scores were low as “air hunger” and breathing difficulties is another common feature of ME.
I did think I might score better on my overall fitness test: this was done by squeezing what looked like a vice as hard as I could for 3 seconds, 3 times. It’s over a year since any work out in the gym, but my official result was “pathetic!” I took some consolation that despite my scores ranging from 16-27, people with severe ME probably only score 3 on this test!
I did get some good cheer from my results: apparently my metabolic age came out 28 year old & I’m minus 17% obese! Not bad for a forty something!
Despite having to travel to London, I felt the day was really worthwhile. It’s one of the most positive things I’ve done to help towards finding answers to this mystery illness and I guess it is why so many other sufferers are similarly keen to help.
They are still accepting other people with ME /cfs onto the biobank but they are particularly interested to hear from healthy individuals who would be willing to take the same tests as part of the control group. There is less incentive for such people to volunteer, so if you are a sufferer that will find it difficult to attend a clinic, do spread the word to friends and family.
For those that feel frustrated that there is nothing they can do to help, this is a great opportunity.
As a participant on the project I will be reviewed again in 6 months time. I’ll be hoping for more impressive results by then…!
To read more about the bio bank please click here. If you wish to volunteer yourself the address is at the bottom of the linked page.