Friday, 28 November 2014

Something about cells or something

Originally published in April 2013

A nice scientific title there for you!

Many of you will have seen this before but I wanted to share it incase anyone hadn't seen it.

From The Times, 23 April 2013 (story by Hannah Devlin, Science Editor).

"Scientists have found compelling new evidence of an underlying biological cause for the constant fatigue suffered by ME patients.

The study revealed abnormalities in the muscle cells of ME patients, which are likely to contribute to feelings of tiredness and the inability to cope with sustained physical activity that many experience.

An analysis of muscle biopsies suggested that the cells had undergone substantial changes, making them less able to cope with exertion.

The finding shows that, whatever the initial trigger for ME, which affects more than 600,000 in Britain, the condition leads to a cascade of physical changes right down to the cellular level.

Some patients still report facing stigma due to popular misconceptions that the condition is “all in the mind”, despite growing evidence that ME has real physical symptoms.

Julia Newton, Dean for Clinical Medicine at Newcastle University who led the study, said that the latest science was changing “people’s perception of this terrible symptom”.

Professor Newton presented the findings at a meeting in London yesterday marking the launch of a collaboration aimed at generating more research into the disease.

In the study, scientists took muscle biopsies from ten patients and ten healthy but sedentary volunteers.

The muscle cells were grown into small pieces of muscle and then subjected to “exercise” in the form of electrical impulses.

The cells from ME patients produced on average 20 times as much acid when exercised, suggesting an underlying cause for the aching muscles that patients often experience as soon a they begin to exercise.

The cells also showed other abnormalities, such as reproducing more slowly.

“We have found very real abnormalities”, said Professor Newton."

University of Newcastle press release | 23 April 2013

Wednesday, 19 November 2014

Diagnosis Day

On the 18th November 2010, after only a two and half month wait (many sufferers go years and even decades undiagnosed) I was diagnosed with Chronic Fatigue Syndrome at the Fitzwilliam Hospital in Peterborough. The neurologist was wearing a corduroy suit! The night before I did not sleep. I had never felt such fear and dread.

Every birthday week since has included a medical appointment of some kind. It's becoming the most boring tradition. This is my fifth poorly-birthday-week and I'm off to see my GP tomorrow.

I recently found a diary entry from the 1st November 2010 - 

"Beginning to wonder whether this is how it will be forever now." 

It isn't. It gets better. You learn to accept it. You even embrace it. You mould your life around it. You smile in spite of it. You let it win the battles so you can ultimately win the war. You don't fight it, you work with it. You become a partnership: M.E. myself and I. You find joy in the simplest of pleasures. You realise you are stronger than you ever believed before. You remain the master of your fate, the captain of your soul. 

While I was looking through old photos and diaries, I found this. 

This is the name tag I had to write for myself in early 2011 at my first CFS/ME session under the Lincolnshire clinic. I was too weak to get the lid off the pen. And look at me now... Still a very long way to go but it's less distance than I had ahead of me four years ago today. What a journey M.E. myself and I are on. 

Sunday, 16 November 2014

The Adventures of Anna Jones - It's way past my bedtime!

Those of you who follow me on Twitter or Instagram might know that I had a party to go to last night. A surprise party no less! I won't ramble on about how I was feeling. I'm sure you know by now that I am never without my symptoms. Yet it gave me a huge boost to hear that I looked like the 'Anna Jones' of old, and people I've only seen a handful of times commented on how much more lively and how much better I looked. (Some people are far from keen to hear people saying that they don't look sick or that they look well, but I like to take it as a compliment each time because I'd really rather not look as bad as I feel!)

Decisions, decisions... I have no idea what one wears on a Saturday night out anymore!

I ditched my glasses and reacquainted myself with contact lenses. I wore a dress because I don't get many opportunities to dress up properly these days. I even wore a pair of (low-ish) heels. Sorry legs! I didn't care that I was so sweaty my make up practically melted off my face and my hair lost it's straightened smoothness. I loved that I'd been wearing shoes long enough to get blisters. I didn't mind that my ears were ringing when I got home, or that it took an age to fall asleep after so much stimulation so 'late' at night.

Happy 30th Birthday Ross!

I couldn't ask for a better support network. My parents drove me, offered to iron any clothes beforehand, fed me, waited by the phone incase I needed a lift home NOW. My sister walked me into the pub and 'handed' me over to my friend. The girls fetched my drinks for me, found me places to sit, checked I was okay, took me for fresh air every so often, panicked if they lost sight of me(!), walked me out when my dad had arrived to collect me and 'handed' me back over. I lasted from 7pm until 10:30pm!

I am so much better than I was when my M.E. journey began. If this is as good as it gets, and I get to have a 'normal' few hours like that every six months or so, I will be so chuffed.

I am the luckiest girl in the world.