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“I caught a virus on 26 June 2001.

“I am one of the lucky ones who eventually improved after a Post Viral Fatigue Syndrome (PVFS) diagnosis but never returned to 100% of my previous ‘normal’ life after that experience. However, within five years, I did eventually return to a 90% quality of life. By 2013, I was certainly well enough to enjoy hiking with my family (always allowing myself plenty of decent rest and recovery in between), helping on the School’s Parent-Teacher Association, managing a busy family life with teenagers, working part-time, and enjoying weekly pilates and a dance class with my husband.

“Then Sepsis interfered on 30 August 2013, pushing me firmly back into an energy limiting chronic illness that I certainly never wanted. I tried to recover from that. I tried so hard, did what my medical advisors wanted, did what my employers wanted, fought for sickness benefits, then my job and then for disability benefits. Eventually, I was given a Chronic Fatigue Syndrome (CFS)/ME diagnosis. 

“After my 2001 brush with PVFS, I immediately went looking to see what improvements and medical advances had been made in the world of ME since 2001. I was horrified to find nothing, or certainly not a lot. Especially when you consider how many well educated, artistically talented and even ‘just’ very hard-working people there are who now have ME. I really don’t understand how ‘we’ have been brushed under the carpet and left to suffer. Social media may be unkind and downright horrible at times, but it really has its uses by helping to bring our community together.

“From social media, I found my community - not ‘just’ ME, but people with Fibromyalgia, Lyme Disease, EDS, POTS - to name just a few. Complicated, overlapping, co-morbid conditions that all need urgent ring-fenced funding for biomedical research. I was determined to help research in whatever way I could. I was participating in any surveys, sharing good science, donating what money I could afford, and getting my MP involved. Through my reading, I found LSHTM and volunteered.

“An extensive questionnaire by UK ME/CFS Biobank confirmed my ME diagnosis, and in 2018, I was able to start to help by providing samples for research. Sadly, the pandemic cut short my participation in the NIH funded biomedical research project, with only three instead of the six planned donations given before my age made me ineligible to continue.

“My fundraising has also been hit hard, but my page will stay open until I am finally able to safely hold my in aid of the Biobank. We held a garage clearance sale, and various other small donations have trickled in during 2020-21. I will keep trying to support and advance any biomedical research into Myalgic Encephalomyelitis.”

If you have an idea and would like to talk to someone about fundraising for any of the important and varied work at LSHTM, please get in touch by emailing alumni@lshtm.ac.uk.