Trying to wear that upside down frown

I can hardly move today. Crashed horizontal till evening by something that feels like burning, sickening poison seeping through my arteries, making my muscles jerk, my blood slam in my temples, my throat and chest exhausted at every breath or murmur.


Three things today focus in the back of my addled brain:


1) Summer's over. September 22nd means its autumn. My favourite season is here.

2) R.E.M. have split, or rather retired, and I feel too fragile today to listen to any of their luminously complex back catalogue. Their music has got me through some difficult M.E. days of drought. Not today. Just touches too many deep places today.

3) News is breaking that XMRV has just been shown to be unrelated to M.E. Probably. I can't process all the facts and figures today. But that little light in the dark tunnel of M.E. research seems to be being snuffed out as I type.

Good or bad? Hope it's not a chance for the media to take us backwards away from awareness. Or is this a stirring up of already muddy waters, freeing the field for more quality bio-medical research that will help sufferers everywhere to get well again?

Tomorrow, three certainties:

It will be autumn.

I want to listen to treasures from R.E.M.'s back catalogue if I can bear any sound at all.

I will still be hoping for some relief amid this horrendous disease which is about to prevent me typing or staying upright a moment longer today. As of now.

State Funding Promise for M.E. Research - Pinch Me, Am I Dreaming?

Professor Stephen Holgate who has been instrumental in moving the MRC towards backing funding for biomedical research into M.E. The Independent calls him "a government advisor, but not afraid to speak his mind"

Backing for M.E. Research reported today

Pinch me, am I dreaming?


That's the response of so many of us in the M.E. patient community to today's amazing news via PublicService.co.uk


So many false dawns. So much disappointment and abandonment in the past. Over the summer, in the media, so many groundless attacks on those with M.E.


Today, this wonderful news.


Alongside other patient-backed independent charity initiatives like Invest in ME this news that the Medical Research Council is looking into the possibility of funding and support for a blood bank and bio-medical research is truly the most wonderful thing I've read in all the time I've been ill.


I can't add much more today. The link above speaks for itself.


I'm just so thankful. A new hero to me, reading this, is Professor Stephen Holgate. This is why:


"The first attack on their approach came in the Chief Medical Officer's report of 2002 and we asked for a new strategy. Nothing much happened until Professor Stephen Holgate set up an MRC expert group which produced a list of biomedical research priorities and now we have funding to take this forward." 

Bless Professor Holgate! Somebody influential with the Government and Medical Research Council who actually understands M.E. 
Doing exactly what we all trust medical professionals to do. Listening. Opening his mind. Learning from others. Wanting things to be better for patients. Making things happen if they are not happening already. Being compassionate. Being proactive on his patients' behalf.

If I had the strength, I would be partying tonight! 

Stephen Holgate Professor of Immunopharmacology at the University of Southampton

More about Professor Stephen Holgate on University of Southampton website 

Prof Holgate named among Britain's Top Air Pollution & Green  Scientists in The Independent 

Something for the Weekend! (But Monday's a non-starter!)

 On Sunday I was planned to lead worship at a church where the congregation understands more than most about M.E.


Not only have they lost a full-time minister in their circuit to the disease, i.e. me, but one of their own beloved local worship leaders in the congregation also has M.E.


She and I discussed how we were both doing at the moment, comparing the muscle pain that makes even wearing a bra uncomfortable when the chest, diaphragm and stomach feel swollen with poison.

 We talked as only those who really undestand can, about those IBS-like symptoms and those days when even though you can get up, appetite is nil. Contemplating the complex processes of fancying food, preparing it, cooking it and having the strength left to lift fork to lips to eat it, is just one step too far!

 Overdoing things, plus passing viruses always end up flooring us both, in spite of our positive attitudes. People know us both too well in our church communities to imagine it's all in our minds, thank goodness! (Though we've both had more than enough of that attitude from elsewhere including medics!)


It was a "relatively" better day for us both. Relatively better, of course, or I couldn't have been there to take the service, nor she to be in the congregration! I was leading my one brief hour of worship per month at her church. I still can't manage any more. 

 Being there for Sunday meant I couldn't be at the circuit preachers' meeting for fellowship the following day. I can't do things day after day, still, or my body can't recoup what it loses with each effort. Since then I've been virtually housebound and sleeping for England, trying to recover. My throat's now sore and glands swollen with that brief hour of projecting, laughing, sharing, chatting, concentrating. My muscles are spasming now at the slightest move and I feel like I've just swum a polluted Thames with David Walliams this weekend! (I wish! Well done, that man!)

 My aim is now to gradually recover enough to manage something similar (preach not swim, silly!) at another church some time next month, and if all goes to plan, the month after too. We talked about how this itself was a fantastic thing to be thankful for, compared to early days when I could hardly stand and speak at the same time at all, let alone every so often on a good day. 


She had had a particularly bad time the previous week and still looked as washed out and doddery as me! (We are both in our middle years, rather than the pensioners our bodies take us for!).

When I talked to friends in the congregation that I hadn't seen for over a year, how I'm planning to raise funds for Invest in ME for my 50th birthday next month, a few asked if I had thought of talking to the Circuit Admin Assistant about it? Why not publicise this more widely, considering how many people know me from my ministry in the area in past years?


I hadn't actually thouught of that. I always feel very reluctant to push any cause related to myself, but it all fell into place as a possibility when several folks enthusiastically went on to remind about the Circuit newsletter which has regular circulation round all the different Methodist Churches in our area and has a readership beyond the pews.

 So that's next. When strength returns a bit! I'll contact the editors soon so it can be mentioned (warmly!) there, with links to the charity and to my fundraising page

Joyce's 50th Birthday Gift 4 M.E.


I really think this will help many people who know people with M.E. like myself and the worship leader, to have a chance to do something positive.


In spite of being completely wiped out by going to church this weekend, even with a door to door lift and wonderful support all the way, it was a true blessing as always. I usually don't even have the health to walk to my own local church round the corner! Many were touched and reached by my message, they said, and being in the right place at the right time, for me, the congregation's suggestions might just have unseen ripples into the future for everyone with this devastating disease.

Please Invest in M.E. to Celebrate my 50th Birthday!

 ...soon!

So, I hit the big 50 next month.

Spirit still in my mid 20s - often barely in double figures tbh!

Body often feels like it belongs to a VERY badly-preseved centenarian!

Well, instead of the bubble bath and smellies, to mark my half century of years on earth, I'm hoping that together we can raise the big £5-0-0 towards the dream of everyone with M.E.

That dream CAN become reality: real bio-medical research, leading to effective treatment and one day, a real cure for the illness that has robbed so many of us of huge chunks of our lives and livelihoods!

How?


Well, through this page -
 
Joyce's 50th Birthday Gift for M.E.
 
from today till the end of October, you can help by donating however much you feel you can for UK charity Invest in ME
In collaboration with the wonderful Let's Do It For ME! a patient-driven campaign run in cooperation with Invest in ME to raise funds to establish a UK centre of excellence for biomedical ME research and treatment, you can make such a life-changing difference.

Simple!

Putting the dispiriting summer of dodgy journalism and misinformation behind us, let's go forward together and make a positive move that will change the world for all PWME (People with M.E.).

Learn more by clicking on any of the links above.

Can we do it?   

In the words of Bob the Builder, YES WE CAN!

Joyce's 50th Birthday Gift for M.E.

Thank you so much in advance!

  

More info from the M.E. ASSOCIATION
Full definition of the disease and its symptoms (the science bit!) International Consensus Criteria for Myalgic Encephalomyelitis

I don't know why I've got M.E. (NOT an ode to Simple Simon!)

I don't know why I've got M.E.

It can't be accidental.

Now Simon Wessely smiles his smile

And says it's mostly mental.

I used to do all sorts of things

Working, playing, thriving.

But these days I am just so sick

I'm only just surviving.

Those flu jabs and those viruses

They always made me ropey,

For weeks and months I used to feel

So iffy, crashed and dopey.

I drove myself to carry on,

So much still to achieve,

But some days I'm too weak to walk.

My sickness just won't leave.

It took an age to diagnose,

It took so long to name.

Now there's a brolly called CFS,

Which isn't quite the same!

They sent me off to talk it out

They called that CBT.

The exercise that made me flop

Was GET, you see.

On days when I can make some sense

Inside my foggy brain,

I try to raise awareness.

Simon says I'm not quite sane.

And every time I do things,

Simple stuff I used to manage

With minimum of effort,

Causes untold pain and damage.

My limbs are sometimes cold to touch,

Or burning like a fire,

Simon says it's in my head,

I'm just a workshy liar.

The words I used to work with

In my ministry and writing

Go AWOL as I try to think.

My energy? Gone like lightning.

My muscles twitch and tremble.

When I walk, the ground's like rubber.

Nausea's now a way of life,

Yet I'm some benefit bludger?

The floor that once seemed smooth and flat

Is now like mountaineering.

A blowtorch must have scorched my eyes,

Strange ringing dogs my hearing.

I'm bruised from walking into things

I'm crushed from all I've lost.

They're sure it's biomedical

Yet Simon won't be crossed!

He has his little theories

He cooked up years ago,

But science is making progress,

What the heck does Simon know?

The papers give him headlines,

The journos lick his boots.

Is it our paranoia

To suggest they're in cahoots?

The powerful health insurers,

Drug companies, MPs,

And NICE which isn't nice at all,

Who lives in a myth like these?

Often M.E. gets my body down,

But I won't lie down in spirit;

Some day biomarkers will mark our cure.

That's worth the wait, now, innit? 

Till then, we've got each other, guys,

To help keep a positive smile on.

One day our brains will be free of fog,

And the likes of Simple Simon!

M.E. in the media: why let the truth get in the way of a good story?

Myalgic Encephalomyelitis is not a mental disorder.

Let me start with the simple fact. Medical research has shown it. The World Health Organisation has recognised it. Everyone with M.E. knows it to their cost. How much simpler it would be if we could walk away from M.E. after a cosy chat about our "illness beliefs" and a few phased-in press-ups!

No right-thinking M.E. sufferer wants anything but a cure and their former health back. For children and young people who never knew a healthy life before M.E. struck, just the cure and a happy normal future would do.


We do not want psychiatrists harmed or threatened. Of course not! What are people thinking? Like me, none but a handful of (as yet curiously unnamed) desperately sick individuals at the end of their tether, would wish harm on anybody. Let alone issue death threats. This is appalling to us all.

But smokescreen coverage of the "victimisation" of those seeking to turn back the clock to the days when the mistaken insult "Yuppie Flu" reigned in the minds of a largely uninformed public, has pothered up around the illness that has stolen our lives and livelihoods for so long on a daily basis. While this mass media story goes viral, it is in danger of snuffing out bona fide campaigning for scientific medical progress into M.E. treatment and cure. That would be the real tragedy.

M.E. is not a mental disorder.

It bears no resemblance to bi-polar depression, Munchhausen's By Proxy, schizophrenia or any other mental illness. Any more than M.S. was ever really "hysterical paralysis" or Tuberculosis was ever cured by shoving dying men and women out into the sun to do them good in spite of their wrong "illness beliefs"!


M.E. is NOT a mental disorder.


There seems no end of confusion about this fact. Not helped by the recent onslaught of misinformation, half-truths and lies in the media.

Let me repeat in case anybody is still in doubt:

 M.E. is not a mental disorder.

I understand the confusion. There's a whole Tower of Babel being erected in the press with a confusion of voices shouting from their own corners out of vested interest.

Scientific research is costly. More costly than the cheap talking therapies and often hugely damaging regimes of exercise forced on muscles and mitochondria that are made all the more sick by such tactics. Those M.E. patients like myself who have always driven ourselves to our limits however we felt, have already discovered to our cost the dire consequences of such determination to show our bodies "tough love"!


Scientific biomedical research into M.E. is expensive. But it's not a luxury. It is vital.

So far it has shown the truth that M.E. is a physical illness, not some vague conglomeration of imaginary symptoms making sufferers turn from hard-working, articulate, driven, fully-functioning pillars of society into benefit-bludging, lazy hypochondriacs. Who on earth do you think you are labelling? Are your memories so pathetically short? Where were you knockers, disbelievers and haters when we were saving your lives in the operating theatre or baptising your babies, successfully fighting your lawsuits or striding along optimistically helping to change the world where we all paid tax while we could? That was us M.E. sufferers, just like you! We were (and would love to be again!) your co-workers, crisis solvers and your children!

Recent articles in papers like the Sunday Times and Observer, may have misled you. They probably intended to. By doing so they enable the government, DWP and paid psychiatrists to feel justified in forcing some of the sickest and most vulnerable people in our society, with an illness every bit as disabling as M.S. or polio, into work they are too fluctuatingly, severely ill to fulfil without relapse, or into cheap and ineffective forms of treatment, which is actually designed to manage mental health problems, or psychosomatic syndromes yet often causes M.E. patients to crash and burn.

These treatments include the cheap-to-fund non-invasive and unscientific cognitive behavioural therapy (CBT) or graded exercise therapy (GET) aimed at weaning patients off damaging sickness-perpetuating habits and thought patterns. This does not work with physiological, multi-systemic diseases like M.E., M.S., Cancer, Tuberculosis, Polio, Myasthenia Gravis or Diabetes Mellitus. So why is this the only funded "treatment" available for M.E.? Why? How can our mental aberrations make us too dangerous to donate blood?



Contrary to what has been stated in the media, please listen to the words and understand:

Neurological DOES NOT mean neurotic. 


 Physical disease DOES NOT mean psychological disease.

Physiological illness DOES NOT mean psychosomatic illness.


It really is that simple.

M.E. has been classified by the World Health Organisation and M.E. researchers who are not tied to proving a money-saving, non-scientific theory to keep truthful enquiry at bay as follows:

a serious multi-system neuroimmune disorder affecting the central, autonomic and peripheral nervous systems as well as the immune, cardiovascular, respiratory, neuroendocrine, gastrointestinal, musculo-skeletal, visual and reproductive systems. 


Is that clear enough?

Yet again the papers have rushed into a feeding frenzy on the say-so of certain individuals, borrowing each others' tag lines and taking the easy route to a sensational story.

Why let the truth get in the way of a good story?


Why?

Unfortunately it's too late to ask those who have already died of the effects of M.E. like Sophie Mirza, Lynn Gilderdale and others who make up the 3% of M.E. patients for whom it proves fatal with deaths due to tumours, cardiac failure, brain death and liver failure, sudden collapse after overexertion or exercise and the effects of a slowly worsening illness or, horrifyingly in the 21st century, inappropriate medical "care". Around 30% of M.E. cases are progressive and degenerative. More info on these stats: The Hummingbirds' Foundation for M.E.


Why let the truth get in the way of a good story? I think we all know by now why it must not be allowed to.

Let's go on raising awareness of M.E. in whatever peaceful, respectful but dog-with-a-bone determined ways we can, if we can, whenever and however we can.

If you're still in doubt how medical science is still being ignored at the highest level of UK decision-making in favour of the dangerously contrary all-in-the-mind model of M.E., you can read this post in the excellent blog Dancing with the Sandman:


Letters from Malcolm Hooper Emeritus Professor of Medicinal Chemistry University of Sunderland, to Iain Duncan Smith MP DWP and Andrew Lansley MP Sec of State for Health