Discussion in 'General ME/CFS News' started by Firestormm, Jun 29, 2013.
Such breathing "attacks" are a feature of my illness. Last year I called an ambulance, my first trip in one. The paramedic tried to convince me I was just anxious. The doctor saw me and tried to convince me I was just anxious. I had a very severe throat, and this was triggering the attacks for me. He said, take a deep breath ... and suddenly I could not breath at all for about twenty seconds. I had an instant convert then, but he still didn't know what it was or how to treat it, so sent me home.
Sad story. The title is so annoying -- 'One woman's battle with chronic fatigue'. It should be 'One woman's battle with myalgic encephalomyelitis'. First irritation of the day.
or CFS, because CF is another "disease" right?!
Or an abbreviated term for CFS. Or a symptom. Etc. Would be nice - wouldn't cost them much - to be consistent and use 'correct' terminology. Wouldn't catch them calling Parkinson's, Parkies
I haven't had exactly that problem, but when I had severe hyponatraemia it affected my breathing through an effect on the breathing muscles, along with all my other muscles both internal and external. When my GP failed to come out (or even tell me whether he was going to or not, and I phoned him two or three times) I phoned the emergency service in desperation. They came, they phoned my GP, and obviously he told them that it was a panic attack - something I have no history of. They ignored my repeated assertions (also made to the GP) that the illness was physical, and tried to get me to slow my breathing by breathing into a supermarket carrier bag they had, which turned out to have a hole in it! After an hour of wasted time and energy (and NHS money) they left me alone, barely able to move from my chair, speak or lift the phone. Their report stated that my breathing had improved, but the figures showed that it was in fact unchanged. They also invented two blood pressure readings. Their bp monitor battery had been flat so that they had not been able to take a reading.
It wasn't until I had another attack 3 years later, this time bypassing the GP and phoning an ambulance straight away, that it was found to be severe, potentially life-threatening hyponatraemia. In the interim period I had suffered a fracture and substantial dental damage as I had clearly been losing other electrolytes as well as sodium.
All this could have been avoided if medics had just LISTENED.
Trouble is, journalists know even less about medical science than doctors do. They also have this weird thing of preferring to put things in their own words rather than use the language supplied to them, with the common result that what they print is wrong. For example, after I graduated, the university press release stated that I was housebound. I had said (accurately) that I needed to work from home. A local paper, to whom I had supplied the info that I had just failed to get the First Class honours degree that I had been on track for, stated instead that I had failed to get a 'First degree' and talked about doing 'retakes', which was certainly not on my agenda. This was potentially damaging for my attempts to get back into work after years of hard study.
On another occasion a paper reported that the organisation I was involved with had organised an event that they were reporting. My press release had not stated this, as it was untrue. The untruth resulted in a furious phone call to my workplace from the organisation that DID organise the event!
MeSci I don't actually have a big issue with their use of the abbreviated term. Not when the full term is used elsewhere; but I think in a title it should be explicit. Of more concern to me would be incorrect terminology in science publications and in medical ones. I think they are obligated to be precise. However, some places are researching the symptom of course. Can't help but include the King's College lot in this. Perhaps it demonstrates perception? Check out the picture they use of a 'typical patient'
Can't help thinking that she must be exhausted after putting on all that makeup...
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