Thread by @TheStephenRalph

Some 25 years ago, I caught a virus because I'd been sitting next to a man who, the previous day, had stepped off an aircraft from Tunisia. In French, he told his girlfriend that he'd been feeling mildly unwell during the journey. That virus ended my career as a radiographer. 😔

https://twitter.com/AngelaRayner/status/1465985657130659847

It wasn't the virus itself that ended my career. My body had an adverse reaction to me having that virus just as people are having adverse reactions to #COVID19. My immune system went wrong and never put itself right again.

Same can be said for some of those with #LongCOVID.

For me, I had a flair up that was later confirmed as #BehçetsDisease but was wrongly diagnosed as Chronic Fatigue Syndrome. I've noticed in the Press and media that people with #LongCOVID are being told they have Chronic Fatigue. So, I can understand what they're going through.😔

My symptoms never got properly investigated. At the time, people diagnosed with Chronic Fatigue Syndrome were not investigated for other diseases. In fact, there was clinical guidance instructing doctors not to investigate. So, it took me years to overcome that situation.

I'm hoping that the NHS will, in time, investigate those who suffer adverse reactions; those who don't recover. Going years without the right treatment was a total nightmare. Housebound, bedbound, parents as carers. There are people going through that right now. 😔 #LongCOVID

As a P.S., when I got diagnosed with #Behçets, they asked me if my GP or rheumatologist had asked for tests to identify the virus I'd caught. "No" I replied "even though I was in a cold sweat for days & it took me 2 weeks before going back to work". Their reply was silence......

An example of this. In 2007 I discovered that I had been living with an Endocrine disorder. I had a faulty pituitary gland. The Endocrinologist asked me about my medical history going right back to my childhood. He then told me that I could have had this disorder from birth. 1/2

2/2 in 1998, after my diagnosis of Chronic Fatigue Syndrome, I asked my GP to refer me to an Endocrinologist. I'd heard about Hypothyroidism being a cause of CFS. Instead of getting a full set of hormone level tests, I only got a thyroid function test. I later got an apology. 😔

The point being that there are numerous causes of Chronic Fatigue caused by endocrine disorders. All those possible causes could have been eliminated by a full sweep of hormone level tests. But, due to clinical guidelines, I never got those tests until nine years later. 😔