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Written by a patient
7th July 2020


I’ve just come across these reviews after discussing my dismissive treatment and incorrect diagnosis by a Professor of Immunology, some years ago. I didn’t mention his name, but I was amazed when the person I was speaking to asked me if the Professor was Richard Powell. She said that she knew it must have been the same person because the words that he said to me (that I’ve never forgotten) were almost identical to those that were said to her. To say that she wasn’t impressed, either, is an understatement. I was suffering from immediate allergic reactions to many things, with swollen face and lips, flushing, difficulty breathing, light-headedness, nausea and low blood pressure. I was also collapsing on getting out of bed every morning and had to crawl to the bathroom, with the room spinning, while trying not to pass out and/or throw up. I couldn’t stand in one place for more than a few minutes without suffering from pre-syncope (almost fainting). I also had wheals on my skin where my clothes pressed on it. I thought a Professor of Immunology would be the most qualified person to diagnose my illness. Half an hour after meeting me, doing no tests whatsoever, not even the most cursory physical examination, and knowing absolutely nothing about my previous life, character, or background, Professor Powell told me that I was ill because I “suffer from low-self esteem” and made totally unsubstantiated statements about my character, going right back to how I behaved at school, decades before. All things which he couldn’t possibly have known. I hadn’t even referred to them once, and he’d never met me before. (I have never suffered from “low self-esteem”). During the consultation he asked if I suffered from pain and I said “No”. Fortunately, I had no pain. At the conclusion of the consultation (as I said, doing no physical examination or tests to rule anything out, or in) Professor Powell told me that I had Fibromyalgia. I knew that the word ‘Fibromyalgia’ meant ‘muscle pain’ (myalgia = pain) and I’d already told him that I didn’t have any pain. When I pointed this out he replied “Oh well, CFS then.” (CFS = Chronic Fatigue Syndrome). He went on to say that there was no cure and told me to buy a book on CBT (Cognitive Behavioural Therapy - a psychological therapy). Professor Powell wrote to my GP, saying that I had Fibromyalgia, which was put on my medical notes. As a result, no further tests were considered, as I had a diagnosis from an eminent Professor. It wasn’t until years later that I was referred to another specialist who, immediately, recognised my symptoms of collapsing when getting out of bed and inability to stand in one place for more than a few minutes as POTS (Postural Orthostatic Tachycardia Syndrome). They also recognised that the wheals on my skin and allergic reactions were caused by Mast Cell Activation and that I have features of hypermobility that are consistent with EDS (Ehlers Danlos Syndrome), which predisposes sufferers to POTS and Mast Cell Activation. I can forgive Professor Powell for not recognising EDS, as it wasn’t well recognised by the medical profession at the time, but my description of allergic reactions, including episodes of flushing, swollen eyes and lips, low blood pressure and wheals on my skin (which the doctor who took the trouble to examine me, several years later, identified immediately) should, surely, have alerted a Professor of Immunology to the fact that something immunological was going on and, at the very least, warrant some investigatory tests. I still struggle to understand why Professor Powell diagnosed me with Fibromyalgia, in spite of me telling him I had no pain. Why did he believe that these debilitating, physical symptoms, including wheals on my skin, allergic reactions and pre-syncope on standing were caused by “Low self-esteem”, especially when I told him that I have never suffered from low self-esteem in my life, and why did he direct me to CBT, a psychological therapy, which he said was the only treatment for my condition, when Fibromyalgia (which I don’t even have) isn’t a psychological illness? Out of desperation, I did try CBT. I gave it everything I had, as Professor Powell had told me that it was the only treatment that could help me. The CBT, which continued for several weeks, consisted of me being told to imagine that I didn’t really feel ill and that my symptoms weren’t stopping me from doing anything that I wanted to do. I, desperately, wanted it to work, as I wanted my life back. Of course, it didn’t make the slightest difference, apart from (temporarily) making me even more disheartened, because it didn’t work. The consultation was not only a complete waste of time and money, but lumbered me with a diagnosis of something that I didn’t even have, preventing further investigation, for years.

Recommend
Trust
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