House of Lords debate on the PACE Trails and the lack of care in the UK for ME/cfs patients.

I am posting this here for those of you who are interested. I know, more or less, how it went down and I just can’t face watching the thing. I have huge respect for  The Countess of Mar and wish more people were like her.

The MEASSOCIATION has the vid and TRANSCRIPT.

I am particularly disgusted (but not surprised) at Robert Winston’s response. He obviously hadn’t a clue and hadn’t bothered to listen either. I believe he’s in the eugenicist camp anyway, so he wouldn’t much care about lesser being like ME patients. Once killing disabled unborm children is ok, there’s little left ethically really.

Overall the standard of debate here was dreadful. I can’t believe the intellectual laziness and refusal to actually look at the problems with PACE.

The Business of Post Exertional Malaise. (PEM)

Post Exertional Malaise or PEM as it’s called, is such a major sign and symptom of ME it is seems it should be the primary box to tick. If you don’t have PEM, you are most unlikely to have ME. It goes hand in hand with exercise intolerance. Obviously a person who can tolerate aerobic exericse doesn’t get PEM. But there are illnesses where a person may have exercise intolerance (COPD and heart failure spring to mind) but don’t have PEM.

So how does PEM manifest itself?

It is, in essence, a state of collapse. The patient is usually in a great deal of pain that many of us describe as a bone pain. It does feel as though your bones actually ache. There’s extreme brain fog with this so that you can’t think straight at all, or express yourself. In my case I quite often can’t speak or can’t speak clearly or with proper words.

Vision and hearing can be affected. In my case I tend to loose perception and get  tunnel vision and photosensitivity. I become very sound sensitive, but others loose hearing.

The worst part (IMO) is cyclical vomiting. I’ve only had this a couple of times thankfully, but it’s the most painful, exhausting, horrible thing.

One of the less horrible symptoms of PEM is the inability to stay awake. When I’m crashed badly enough I just fall asleep or semi-asleep. My body does it almost like switching off. Unfortunately this is not always the escape you might hope for. More than once I’ve dreamed I’m in a huge amount of pain.

This crash can last from a few hours to a few months. I will never forget the crash I had three years ago which lasted just over 6 months. It’s not something I want to repeat, so why those in the pyschi school want us to do so is beyond me.

When certain luvvies in the psychi industry talk about patients “fear of exercise” as though we are lazy twits who just need to work harder, they never seem to get that we KNOW what can happen because all of us have had it happen to us. Those luvvies think we should be barmy enough to choose, quite deliberately to put ourselves into crash. As this has killed a few patients (that Labour MP comes to mind) it seems like a ludicrous approach.

The increase in pain with PEM has been shown to be the muscles hanging onto lactic acid. Mitochondrial defects prevent the proper use of oxygen in the body. For those of us with lung disorders our oxygen SATs drop out quite often anyway and with the extra broken bit of mito dysfunction our bodies don’t process oxygen the way they should – and we crash.

There is a great deal of biomedical research explaining why we are so ill. If only Lord Winston and his cronies could be bothered to actually READ some of it!

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