My Story by Paul Kayes

Okay the good day is a slight exaggeration 😉

I would say that the illness started fairly suddenly at the end of July 2002, although looking back there were one or two indicating signs in the two months prior. The specialist I saw Dr Ong (Tropical Medicine) at Newcastle General Hospital said that it could have started earlier i.e. up to 2 years earlier. Although he attributed the cause to the EBV he was interested in the gastro problems I’d had during the previous 2 years and several viruses. Symptoms diagnosed as acid reflux and probable cause Helicobacter Pylori found during the two endoscopes, I then had which I had the treatment to clear the HBP in 2000. Which helped, but it still took a long time to return to ‘normal’ in 2001.

End of July 2002 I felt unwell with chest pains and was rushed into the heart unit at the local hospital with a suspected heart attack, the heart was fine however during the couple of days I remained in hospital I felt really unwell (viral and weak) had x-rays and test and discharged still feeling dreadfully unwell. Later that evening I was unable to pass water or open my bowels, readmitted to the Urinary ward, tests, scans & x-ray, nothing could be found and suppositories and fluids got the bowel and waterworks working. Bloods and urine tests done, again nothing could be found and after a total 8 days and 9 ward changes I was discharged, still feeling dreadfully unwell and weak, told to go home and drink plenty of water.

I also saw two consultants through private medical insurance, gastro and urinary, had MRI scan on the lower abdomen, results normal. Gastro consultant said the chest pains were Costochondritis, eventually suggested that the problem was depression, I did not feel depressed, but was very keen to have some reason for the illness. Prior to becoming ill I was very fit and active, working, cycling and hill running. I did make a recovery of sorts and returned to work after 11 months, 6 hours the first week and increments of 2 hours per week until the occupational doctor said to increase by 3 hours each week. At the end of my 2nd week of full time, I relapsed and have not recovered since.

2010 I was invited by Jo Best to be part of Let’s do it for ME, fundraising for Invest in ME Research, I’m passionate about supporting the best U.K. ME Charity, run by volunteers and who are making research happen. Like Jo I’d become disillusioned with the mainstream M.E. charities. So far we’ve helped to raise £623,000.00 for vital research and trials. I believe that research is the way forward for M.E. and Invest in ME are the ones making it happen.