Thursday, 21 June 2012

Dr Elizabeth Dowsett

I remember meeting Dr Dowsett just once, many years ago, at an ME conference. Some items written by her are available online – click here for further details. The following is by Simon Lawrence of the 25% ME Group -

Dr Elizabeth Dowsett

19th September 1920 - 14th June 2012

A True Hero

By Simon Lawrence, 25% ME Group

We hear every day of people who do amazing things and who are portrayed as heroes for their actions. We also hear of heroic characters in films, novels, comic books and the like.

However, I feel certain that many of you within the ME community, when hearing the sad news of Dr Elizabeth (Betty) Dowsett’s death, will no doubt remember her as someone who truly deserved the title of hero.

She was someone who was relentlessly courageous in fighting the establishment on their stance of ME. She was sympathetic and empathetic to all who contacted her for help and support. She was someone who did not seek glory or try to make a name for herself in all that she did for others but simply did it because, as a doctor and, more importantly, as a human being, she felt it was her duty to help and, indeed, took great pleasure in helping people with this disease.

Over the decades she has helped in countless different ways, many thousands of people throughout the world. Many knew and thought of her as a personal friend because she was so warm and caring in all her dealings and treatment of people. She cared, showed empathy and loved people and she fought tirelessly to try to put an end to the injustice and mistreatment of people with ME.

She was one of the last remaining of the group of doctors from the Ramsay era who believed in ME as it really is, unlike today where we have all sorts of theories and scandalous activities that are truly harming people with ME. People are dying of ME and people are left paralysed by ME. Dr Betty Dowsett was someone who was truly upset about this and who worked day and night to help change the situation and even fought in the face of the establishment and other ME organisations that she felt were “dumping down” ME.

In a world where we are so often left to suffer and be denigrated as ME sufferers, it was refreshing to meet someone who really did care and, at the same time, who never sought monetary gain from her services or some selfish recognition for doing what she felt was right.

Betty you were not just a personal friend, and someone who was passionate about what you believed was right, but you were also a true hero and angel sent by God.

Thank you for all you did for me and for many people throughout the world.

You will be greatly missed and will forever remain in our hearts and minds.

Tuesday, 19 June 2012

Spurgeon’s Evening Devotional for 19th June

Spurgeon’s Evening Devotional for 19th June

“My Beloved is mine, and I am his: he feedeth among the lilies. Until the day break, and the shadows flee away, turn, my Beloved, and be thou like a roe or a young hart upon the mountains of Bether”

Song of Solomon 2 v 16, 17

Surely if there be a happy verse in the Bible it is this—“My Beloved is mine, and I am his.” So peaceful, so full of assurance, so overrunning with happiness and contentment is it, that it might well have been written by the same hand which penned the twenty-third Psalm. Yet though the prospect is exceeding fair and lovely—earth cannot show its superior—it is not entirely a sunlit landscape. There is a cloud in the sky which casts a shadow over the scene. Listen, “Until the day break, and the shadows flee away.”

There is a word, too, about the “mountains of Bether,” or, “the mountains of division,” and to our love, anything like division is bitterness. Beloved, this may be your present state of mind; you do not doubt your salvation; you know that Christ is yours, but you are not feasting with him. You understand your vital interest in him, so that you have no shadow of a doubt of your being his, and of his being yours, but still his left hand is not under your head, nor doth his right hand embrace you. A shade of sadness is cast over your heart, perhaps by affliction, certainly by the temporary absence of your Lord, so even while exclaiming, “I am his,” you are forced to take to your knees, and to pray, “Until the day break, and the shadows flee away, turn, my Beloved.”

“Where is he?” asks the soul. And the answer comes, “He feedeth among the lilies.” If we would find Christ, we must get into communion with his people, we must come to the ordinances with his saints. Oh, for an evening glimpse of him! Oh, to sup with him tonight!

Monday, 11 June 2012

Invest in ME Conference 2012

The 7th Invest in ME International ME/CFS Conference took place on Friday 1st June. The Conference looked at “Building a Future for Research into ME” with “Clinical and Research Updates in Myalgic Encephalomyelitis”. Presenters and delegates from 16 countries and 4 continents were present. The conference showed the urgent need for more funding for biomedical research and the sure progress being made by those committed professionals with a clear strategy for scientific advancement.

Invest in ME published it’s Journal of IiME at the conference and abstracts of the conference presenters’ presentations are included in it. For further details click here.

A report of the conference by Rosamund Vallings of the Associated New Zealand ME Society can be found by clicking here and DVDs showing the talks and plenary sessions can be ordered here.

Friday, 1 June 2012

It's like being switched off

Funny how the BBC can do a serious report about “chronic fatigue” when it isn’t about ME!

'It's like being switched off'

By Alison Potts MS patient

Chronic fatigue dominates the lives of people with multiple sclerosis - and other long-term conditions. Here Alison Potts, who has had MS for 20 years, tells how it affects her life.

Earlier this month MS in Focus magazine published the results of a global survey on MS fatigue.

"My family and friends just think I'm tired and lazy," one person said - and another: "Fatigue prevents me from being the wife and mother I want to be."

Chronic fatigue is the most common symptom of MS, the hardest to treat and the most misunderstood.

In the MS Focus poll, 89% of the 100,000 people from 101 countries who were surveyed said fatigue had a high impact on their life.

But more than half felt those around them do not accept its effects.

Unless you have endured it yourself, there isn't anyone who can imagine what this experience is like, yet for we who live our lives with this illness, other peoples' understanding is crucial and other peoples' misunderstandings add further damage to an already devastating condition.


I have lived with MS fatigue for more than 20 years.

I sometimes feel like I have spent half my adult life in a cave.

I woke up one morning with the equivalent of a blanket on my head which I stumbled around with for years and which was finally explained with my diagnosis of MS.

Even I didn't understand why I found the simplest activities so hard. Even I questioned my own sanity. So it's hardly surprising that it's so bewildering for those looking on.

Part of the problem is that people equate fatigue with ordinary tiredness - which it is nothing like.

Even the word "fatigue" really just doesn't cut it.

It sounds rather soft or quaint, like something that could be fixed with a good lie down or a nice cup of tea.

We are easily misunderstood because we look fine and we are often perfectionists by nature so we can get a lot done in spite of what we are dealing with.

'Can you drop everything?'

In fact, chronic fatigue (in MS and other illnesses) is nothing like every day tiredness.

Fatigue is a debilitating state of physical and mental exhaustion that comes crashing down suddenly and without warning attacking - among other things - eyesight, balance, muscular strength, and threatening everything in one's immediate focus.

"I am lifeless. At times it is like someone has switched me off," says someone in the survey.

In an acute episode I have to cancel many or most activities. I have to do as little as possible - which goes against my nature and I hate it - but I don't have any choice.

Conversely when an episode is over, I am in danger of bouncing around like tigger, playing catch-up and trying to get anything and every done while I feel well enough.

Fatigue doesn't announce itself in advance. It can happen at any time, anywhere.

It can bring anxiety - "What will happen if I don't get this done?", and panic, even terror - "Will I get home in time before the complete collapse? Am I safe to drive? What if I am not?"

It brings with it this terrifying conundrum. Can you drop everything at once, not knowing for how long?

What will happen to your life if you drop everything at once? What will happen to your life if you don't?

We often feel under pressure to do things we know will be bad for us.

Saying 'no'

My friend and fellow chronic fatigue sufferer Sarah reports one experience where she felt under pressure to comply with others' plans when she felt unable to.

"For my birthday in 2005 friends insisted meeting me for a BBQ. I resisted as I knew I had been overdoing it. They would not take no for an answer."

It had such an effect on her that she says: "It took me three months to recover from that event. It was like falling sick all over again."

And she adds: "It's unhelpful of friends or family to beg me to come or to modify the nature of my attendance, or worse still, be hurt. Don't they realise it breaks my heart to cancel?

"It's not like I wanted to spend my entire 30s missing out on shared, fun times. Don't make it any harder than it is. This is simply what I have to do."

These days everyone is too busy, overloaded, driven by tyrannical deadlines.

"I know there are probably people who look at me and think, how is my life any different from theirs?

"But In my case I have to do all this while accommodating an illness which presses the stop button indiscriminately.

Those of us with chronic fatigue have to say "no" a lot.

As the survey states: "People with fatigue need time to rest, but most of all they need understanding from others."