Ignorance isn't bliss - it's toxic!

Here we go again.

Sorry this blogpost may not be very thorough, spellchecked or rational.

Just seen this in today's online Daily Express in Dr Rosemary Leonard's column "Getting to the Heart of Medical Matters":

Q After a flu vaccination my 45-year-old son began suffering muscle weakness, fatigue and lethargy. Numerous blood tests and visits to his GP followed and he was told he was suffering symptoms of ME but no help was offered.

Can you guess the content and suggestions?
Of course you can. No peeking.

1) the flu vaccine it is unlikely the jab is to blame as it does not contain any live viruses.
2) cognitive behaviour therapy (CBT), counselling and physiotherapy can be helpful along with painkillers for muscle pains and also antidepressants which can help boost mood.
3) One of the most beneficial treatments is graded exercise where the patient has a specific programme to slowly increase the amount of activity they do each day.
4) Reducing stress
5) a healthy diet
6) reducing alcohol

I'm not denying there will be nuggets of help there in among the old misguided anti-fatigue measures. But the lumping all diagnosed M.E./CFS cases under the same hallucinatory umbrella is getting us nowhere nearer to awareness of the severity of the disease in many cases. Nowhere nearer to a diagnostic test. Nowhere nearer to effective treatment. Nowhere nearer to a cure for any of the neuroimmune illnesses that fall under the influence of NICE's idea of M.E./CFS.

My own M.E. (yes, that's anecdotal, I know, I know!) symptoms, even before diagnosis and while still able, intermittently, to work, were ALWAYS worse after the annual flu jab (as a T1 Diabetic in the "at risk" group) and I always got a panoply of bad (non-flu?) viral infections both before and after the jab. It was the week following my jab in 2005 that I collapsed and became bedridden and housebound for the best part of a year and from which though improved, I have never fully recovered.

My GP sent me for 2) CBT and 3) GET. At an NHS "CFS/ME Clinic". So patient "fully compliant".

Even the OT admitted by the end of 6 months or so, that it wasn't helping me to be cured or really improved. Why? Because it was clear to her from the off that I wasn't depressed. Wasn't "frightened of doing too much". Wasn't "deconditioned". Didn't harbour those "false illness beliefs" so beloved by those who think the root causes of M.E. include psychological difficulties.

I couldn't even make the excruciating journey to the last GET feedback session because it was making me more ill. The OT could see I was motivated to return to work and my happy, successful, joyous fully functioning previous life. I had to be all but forced to take early retirement, for goodness sake. On what planet is that a "lifestyle choice"???

I had low dose amitriptyline (antidepressant) to help with relaxing painful muscles alongside painkillers like aspirin, ibuprofen and paracetamol. They did nothing for me but make staying awake even harder, weight gain, fuzzy headedness, etc even worse. So in the end they were discontinued. After all, my mood had never been low.

My mood had never been low, that is, until rationally I worked out the state of play with M.E.  No, I, like so many others, did not choose this diagnosis and knew nobody with it until much later on! Then, seeing my career, my freedom, my credibility as a fully-functioning citizen, my very truthfulness questioned by society as a whole, my mood did dip at times, understandably, till I understood I wasn't alone with this variable but very characteristic set of suffering symptoms (of which "fatigue" is quite low down the list, thank you!!!)

I had been eating healthily for many years, most of my adult life, as an insulin-dependent diabetic. That's a "tick" for number 5.

Number 6? Well, after collapsing with M.E, one glass of wine had me so dizzy, sick and disoriented, my central nervous system obviously knew what it didn't tolerate any more without me voluntarily reducing intake. I could tolerate the occasional glass of wine, or lager, even once or twice a spirit like brandy or vodka at Christmas before M.E. raised its much maligned head. So 6) reducing alcohol is hardly an issue to aid recovery for some of us either.

4) Reduce stress? Don't make me laugh (I've actually been known throughout my life, and every illness and circumstance as having the best positive attitude and a wacky warm GSOH)

 
Tell 4) to doctors, nurses, specialists, consultants, the DWP, ATOS, utility companies, landlords, and every last well meaning delusional who will thrust this article in my face to "help me cope".

I'm coping as I always have and always will. Was my diabetes down to "illness beliefs"? Was my shingles down to "illness beliefs"? Was my recently discovered tachycardia, ectopic beats & cardiac arrhythmia due to my "illness beliefs"? Was my bout of giardia in Bolivia, which may or may not have triggered my immune system's meltdown, my "illness belief"? Is the space in the teeth of my lower jaw (where I now know my great grandfather had an extra tooth) down to my defective "illness beliefs"? So what's the likelihood I've suddenly developed something that has no possible physical cause?

I'm coping. Pacing. Enduring. Hoping. Thankful. Optimistic.

But when are you going to actually treat my cardiovascular, immune, autonomic, cognitive disease? When are you actually going to prove you're listening to 250,000 people in this country and so many more worldwide? When will children and young people with M.E. stop dying from something you say  has no Proper Robust Reason?

When will you cure me, or just fess up, shrug at me with a look of condescending pity and hand over the cyanide pill? (N.B. Jokey sarcasm alert - you can go on dismissing my M.E., but you will NEVER change who I am inside!) :)

Without A Proper Robust Reason

For a long time now, I've been planning to baptise the young granddaughter of some dear friends. So often, as a minister, I've had the joy of christening babes in arms, who their parents bring so we can celebrate the love that surrounds them in the presence of their wider church family, giving thanks for the gift of new life.

Only on a couple of occasions have the children themselves asked for the baptism.

This was the case with Tilly. Now 8 years old, she had been looking forward to being baptised at the church where she has been coming to Rainbow Club (Junior Church or Sunday School) all her life with her grandparents, supported by her mother and family members. She and the family wanted me to perform the service where her baptism took place. For one reason or another, not least my illness through M.E., this has taken more than a year to co-ordinate.

Finally this Sunday, the sunny Sunday after Easter, dawned and Tilly, in her beautiful christening gown like a happy and blessed princess, came to church (the church where I was baptised myself) with her loved ones to be baptised and celebrate God's inclusive, playful, tender love and the rainbow of unique gifts he gives to each one of us.

I had rested up all week to try and be at my best for the demands of the weekend, the service in particular. I had travelled the day before, ten miles from where I live to my Mum's village where my home chapel is, so I could try to rest and recover from the harrowing ordeal of two bus journeys.

Friends and stewards at church kindly and considerately did all they could to help. A lift to church. Notices read. Baptism candles and water for the font arranged. All things made as easy as possible so I could concentrate on taking the service at the heart of which the baptism was a jewel of joy.

Before we started, Tilly's lovely family asked me and my Mum if we'd join them for the celebration party afterwards, over lunchtime. I was delighted, and determined to be "normal" for that time. From setting off with my lift to church at ten, to the lift home from the little christening house party at 4.30pm was a mere 6 and a half hours.

The whole day couldn't have gone better. People who didn't even come to church very often, and those who did, said how much the worship had touched them and included them in different ways and Tilly had the baptism she had dreamed of for a long time. So far, so very, very good.

My voice was rusty and failing a little by home time, but that always happens, since M.E. first struck.

I lay and slept back at my Mum's most of the evening. We watched the commemoration programmes about the sinking of the Titanic exactly 100 years before.

That night I slept, fitfully, but I slept. A contented sleep. A satisfied sleep. Better to do what you're called to do, taste joy and contribute to the world turning and catch up later with rest, than never really to live at all. That's always my motto.

Monday dawned. Mum was to come back to my home with me and then return to hers later in the day.

Half way back on the fifty minute bus journey, I was getting really ill. My heart kept feeling fluttery and as if it was stopping. I felt terribly sick, unsteady and nauseous. That's roughly the gap I often get between exertion and post-exertional neurological and autonomic symptoms or "payback".

My head was thumping, my ears ringing. I felt spaced out and terribly ill. My limbs ached so much I couldn't find any way to hold or place them to make it better. My chest muscles and shoulders hurt so much. I had to close my eyes to block out the light. The motion of the bus over the roads of our valleys and hills felt like the Titanic's deck tilting and rearing for the final plunge under a heaving ocean.

I didn't want to worry my mum, but when I staggered off the bus, there was no disguising my ashen face, and I suggested I had to sit for a while. I'm not one to dwell on such things, but I did work out the quickest route to the NHS Walk-in Centre from the bus station in case I had to make the trip!

The ground would not stay still. I was lurching from feverishly, burning hot to icy cold. My fingers were stiff and felt swollen though cold as stone. I had travelled back with my stick collapsed in a carrier bag to minimise my luggage. Now I got it out. I could not balance at all.

I tested my blood sugar, praying it would be low so that would explain why I felt this way, why my heart was thumping and jerking in my chest. But my BG was 9. Nowhere near low or even dangerously high. This was not diabetes related. So there was nothing I could do.

After an hour slumped against my mother on seats in the interchange, I felt just about well enough to move on and get home on the next bus (a fifteen minute journey). Even this was almost too much, but I got home at last.

One last random craziness happened when I found there were road works outside my house and the workmen had dug a deep trench along the pavement leaving no way for me to get across it into my house. Seeing us there, the young workman apologised, cleared the earth away as quickly as he could and then lay down in the trench like a modern day Yorkshire Sir Walter Raleigh for me to step across. Laughter always makes the most traumatic moments bearable, even joyful!

I haven't got right yet. My muscles are like lead, but so painful. My head feels as if my brain is a size too big or my skull a size too small from the one that fits. I can't keep warm. My blood sugar refuses to come down into single figures, whatever I inject or eat, since I've returned. Never tell me diabetic control is an exact science. I've had Type 1 diabetes for 30 years and know for a fact it isn't.

I have slept unrefreshing sleep at night and my body's screamed for sleep in the day though my thoughts are whirling, though brain fog rules. My muscles are shaky, have been ever since the bus ride. My mum could apparently see my hands shaking when I was holding cuppas. My glands are enlarged and my eyes keep blurring and running.

Thank goodness I don't have to repeat even an hour's effort reliably and regularly at the moment. Whatever the powers that be may want to think, or cynics assure themselves, for those of us with fluctuating diseases affecting the central nervous system, the cardiovascular, autonomic and immune systems and so much more, life is never predictable, pace-able or reliable.

But this weekend, for 6 1/2 hours I lived life and gave my all, and was blessed and I could not,would not, change one moment!

Then today I read this online:

 Letchworth 20-year-old’s sudden death caused by dysfunctional immune system

In the 21st century, how long will M.E. and related illnesses, cause doctors, pathologists, coroners to say things like this?

“There is a history of being unwell for some time without a proper robust reason,” as a pathologist did about Tara Morgan, who died at 20 last September from: " respiratory and cardiac arrest due to autonomic neuropathy.”

A "proper robust reason"?

How robust a reason does M.E. have to be before it's taken seriously, for pity's sake?

The pathologist alludes to CFS (M.E.) as being most probably involved in Tara's cause of death:

"He added that Tara’s death could be related to chronic fatigue syndrome, a disorder defined by persistent fatigue." M.E., of course, is NOT "defined by persistent fatigue," but by a many of the symptoms and final causes of lung, heart and immune system failure from which Tara suffered, and ultimately died.

Tara Morgan of Letchworth, UK

Yet with all these facts, there is still an implication of mystery and helplessness:

“It has affected the immune system but that had been dysfunctional for quite some time. I’m at a loss other than this possibility to explain what happened to your daughter.”

But in the way M.E. erodes the body's ability to cope with recurrent viral infections etc, we hear:

“This is a case of something in the body going wrong over quite some time."

We hear: "Tara, who was born with a learning disability, had a history of headaches, muscle aches, joint pains and a bloating of the abdomen."

A long "history" that sounds so much like M.E. (or CFS, if you insist) that the experts here themselves name it as a likely culprit without putting its cumbersome name on the certificate this time.

The cases of young people dying from the complications of immune system dysfunction, illnesses like M.E. that medical authorities shrink from naming freely and openly seem to be getting more frequent in the press these last months and over the last few years. But always apologetically. Always with some proviso or get-out clause, it seems. Then the urgency for answers dissipates. Until the next tragic loss.

We need biomedical research and we need it YESTERDAY!

So glad to know all our combined efforts for Let's Do It For M.E./Invest in M.E. have currently raised £36,099 towards the £100,000 total for the biomedical research and treatment centre in Norwich.
Together we can, and MUST do it for M.E.

For Tara, Sophia, Lynn, Victoria, Lois in recent days and countless other unpublicised deaths from the complications of M.E. For all of them, and for the children of our future, we can never give up living hope within us and our communities.

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

The Truth Is Out There!

The Truth Is Out There. The Truth About M.E./CFS/CFIDS.

But some powerful bum steers have hit the tarmac with a bigger bang, since last I wrote.


Did anybody else notice how soon after the news of Dr Myhill's exoneration of all misconduct charges by the General Medical Council, the pernicious nonsense peddled by Prof Simon Wessely hit the papers? Of course you did!


BBC News covers "victim" Wessely


Daily Mail covers "victim" Wessely


The Economist (where will this end???) covers "victim" Wessely


Top News US covers "victim" Wessely


Visit Bulgaria covers "victim" Wessely

Top News New Zealand covers "victim" Wessely 

Followed up by the slack journalism in the Times by Stephanie Marsh on Aug 6th 
Doctor's hate mail is sent by the people he tried to cure 

and the hackery of Rod Liddle on 31st July with his dismissively mocking
Shoot the medical messenger - see if that'll cure you

So that's pretty much worldwide coverage, then. Raising awareness of M.E.? Sadly, for all the wrong, mistaken reasons. How now to explain all this to friends, neighbours and strangers who have taken this new story on board over their cornflakes, I can't begin to know. 

Happily, most of them already know how little this is a state of mind, and those who knew me before I was ill, understand how the physical illness I fought for years finally took its worst toll, thriving on my opposition to lying down under its tyranny!

A few calculated words from a man who knows full well that time will prove him wrong, and has all the painful fight for M.E. research been swept away in a tide of headline-grabbing rhetoric and half-truths?

A drop of misinformation in already muddied waters. The ripples from this one have gone far indeed!

Amazing how, suddenly, all the decades of research on the physical causes and deeper understanding of this crushingly painful, debilitating neurological multi-systemic disease  (that definition's NOT coming from M.E. patients, but from scientists, researchers, doctors and the World Health Organisation who must also be insulted and mystified that Simon Wessely is now a self-proclaimed "leading expert in M.E.' ???) which rarely gets a mention in the media, has been outstripped by an outmoded and, franky, wholly incorrect analysis of the disease!



You know by now, I'm an optimist. My optimism hasn't been so sorely tried in the years since M.E. (not that woolly umbrella that lets the poison rain in, called "CFS") was diagnosed in my case. I was full of life, optimism, joy, hard work, fun, plans. I still am, ready for when M.E. ceases to pull the carpet unexpectedly from under me.

These articles have made me determined, after a period of sober reflection, that there is all the more need for those of us who can, to keep positive and do all we can to go on holding out for the day when the truth is known and the correct treatments and cures will finally come our way. Sadly for those like Sophie Mirza and Lynn Gilderdale, it will come too late.


The Truth is Out There. 

Not just on the X Files, either.

Professor Wessely knows it, and maybe that's why he has used what influence he has with the media and government to rekindle old ideas and theories about M.E. (experts have called it that, incidentally, not those of us who didn't know any name for the disease that snatched our lives and livelihoods away) that distract the eyes of the world from what is right under its nose, with horrifying sensationalism and sleight of hand.


The Truth is Out There.

We have to keep on believing that, and not letting playground bullies kick us when we are furthest down! Sticks and stones may hurt our bones (if not as much as M.E.!) but calling will not hurt us (when we've stopped weeping in disbelief at the lies levelled at derailing real scientific enquiry!)


Much has already been written to point out the glaring errors in these articles. I've been so thankful for them. We all have:


Actual BBC caller suffering from M.E. speaks the truth

Niceguidelines.blogspot.com - one of so many excellent posts 

Letter on MEA Website 


Letters responding to Rod Liddle's article in The Sunday Times


I have pushed myself to the maximun over the last few weeks. Doing a tiny part of what used to be my full-time vocation, now vountarily and with consequences that make me immobile and inarticuate now for ages afterwards. Receiving those visitors who can only get away to see me in the summer. Luckily they understand my limitations!


All in my head? I think we all know it isn't, whatever we read in the papers. Or hear from little green men.

Leukaemia Link?

The more-than-excellent NICE GUIDELINES BLOGSPOT which is always picking up information for those affected by M.E., today points us in the direction of a U.S. news item.


I haven't any spare energy to sit up typing to discuss this today, but needed to mention this.


Apparently in the U.S.A., a warning is being sent to the national blood banks advising against taking blood from those with "Chronic Fatigue" as it is still vaguely called over there.*

This is because a new study (so many unrelated studies with no joined-up thinking or focus, aaaaaaaargh!) has suggested a link between Chronic Fatigue and certain kinds of leukaemia.


My thinking's a bit woolly this morning. Before I go lie down in a spinning, burning vortex, though: What does this mean? Is it actually proven? Will we read next week that it isn't a valid study and it's all back to being in our heads? Will those with M.E. always be the last to be informed?

Rant over. Judge for yourself by clicking on the link above and taking a look at Dr Speedy's blog today, which includes a link to the US TV report.

Stay strong but also be gentle with yourself. 

*The terms 'chronic fatigue'/'chronic fatigue syndrome' etc are vague and unhelpful in defining this disease. They concentrate only on one of many symptoms, which is then frequently misunderstood as normal 'tiredness'.

It's like calling cancer 'liability to pain and not feeling A1 syndrome'. Nobody would allow that, and rightly so!

Research points very strongly to the fact that Myalgic Encephalomyelitis (M.E.) is a more accurate name for the disease, which is not just some collection or 'syndrome' of self-reported symptoms. The name M.E. refers to the disease's widespread inflammation and multisystemic neuropathology.

CFS is a dismissive, unhelpful umbrella term which discourages further research and encourages devastating misunderstanding of a disease which cripples thousands and has lead to death on more than one occasion through such ignorance. M.E., on the other hand, refers clearly and correctly to the proven underlying pathophysiology of the disease.

Hot off the press - the trail goes cold yet again?

Daily Mail article: Doctors doubt virus is the root cause of M.E.

Interesting article in a tabloid not always known for its accuracy.


We shall see. XMRV viral link has always been controversial.


At least the media and, more importantly, doctors are now focusing on M.E. in a serious way, which will raise awareness and hopefully move us a step further towards effective treatments and the prospect of a future cure. If medical researchers are motivated to pursue this process of elimination to a positive conclusion, this might still turn out to be good news. 


As things stand, however, it is hard to get the celebratory bunting and champagne out, even if we had the energy or the co-ordination, balance and strength to do it!


You don't need to tell us why, any more.


You just need to tell us M.E. will soon be a thing of the past.


Frustratingly, that just seems further away than ever, if this article is to be believed.

Crazy little things that "crash" you!

Isn't it crazy what things can crash you with M.E.?

It's often the so-called "little" things that catch you out.


As you'll maybe have read in my last post, I've had this chest/throat bug that's being going round.


Felt a bit of improvement in my throat by yesterday.
So had a bit of a sing to my iPod.
Not much problem.


As I've not been well enough to use up all my tiny gram of spare energy this last few weeks on dressing, I got dressed. 


The aquarium hasn't been properly cleaned out for the same period.


With support from my Mum I gave the fish a good scrub out and changed the filter.


For a while I felt great. Well, great-er. Well, relatively great. lol.


Aquarium cleaned (with help carrying bucket etc)
Dressed and up and eating a bit more.
Singing.
It's not running a marathon or working a 9-5 job, now, is it?


By last night and this morning, it's all kicked in.


I can hardly lift my hands and arms without them trembling and feeling sick. My wrist and hips actually were making audible "crack" sounds last evening. Yes, audible. To an outside ear, so it's not "all in the mind". (Hahahahah, as if!)


My voice is weaker again. Hurts my chest muscles to speak. Half of what I try to say I'm losing the words. Typing this, I have to keep re-typing and checking the mistakes. The floor is unsteady when I get up, when I stand. Everything is like mountaineering today. Thank the Lord for spellcheck and leisure to do it all inch by inch. Cognitive treacle. Muscles scrambled with post-exertion malaise.


Up this morning, but will really have to have a couple of hours lie down this afternoon to try to recover.


Some days you get sick of the idiots who still think M.E. would disappear if you just thought positive and DID more. I DO do more. I'm never anything but positive. Afterwards it can leave me as weak as a kitten, and as addled as someone with serious brain, nerve and muscle disfunction, twice my age.


That's it for now. All the joined-up thinking I can manage for now. Tomorrow's another day. Rejoice in every second. Don't let 'em get you down!

Miracle - a GP who understands M.E.!

Haven't posted for a couple of weeks as on May 8th I started to feel "extra" symptoms I guessed were above and beyond M.E.'s daily challenges. Mum had had a streaming cold for about three weeks at that point. I thought I might have escaped. Wrong!

By Tuesday my throat was getting a little sore (see entry about Strepsils on the 9th, when I was still well enough to joke about it!) and my chest tight. Blood sugars were climbing into double figures without a lick of food. I was sweaty hot (too much information!), dithering cold and everything in between in the space of an hour.

Just a cold. Just a throat infection. Just a chest infection. Just a virus.

Greedy as ever, though, my immune system turned up its toes and hunkered down for a sit in!

I struggled on, getting weaker, more feverish and chilled, sicker, in pain, less appetite. I was so determined, as ever, to push through and take part in speaking at a local service, as planned.

By the weekend I could hardly swallow for the pain. A bit like swallowing razor blades wrapped in barbed wire. Not that I've tried it! A dry, itchy cough was developing too. 


Frustratingly, I had no option but to cancel taking part in the Junior Church's celebration that second weekend. I had promised to lead a full service plus communion the following weekend (yesterday), and a circuit service address this Thursday. I've had to pull out of them all.

My voice comes and goes at the moment. That often happens just with the M.E. on its own. With a virus I had no chance. I was getting almost delirious through the night and last Monday my Mum decided on going to ask advice at my local surgery. I was so sick I actually let her, for a change! 

A young GP in the practice (not mine) said she would come to check me out, as it was on her way home.

She confirmed what I knew well already. Severe throat/chest virus. There's a lot of it around. She checked all the usual Diabetes stuff - was I continuing to inject even though I could hardly eat? Yes - 26 years of experience there. D.A.F.N.E. sick day rules and all that. Yes - check. I told her I was upping my insulin etc to bring down my sugars (fasting sugar regularly in the 20s at that point, just through the fever/virus doing its bit) and doing so as successfully as possible.

Then came that miracle! (Better miracle than the recent latest "Rapture" nonsense, too!) The GP understood all about how M.E. would be affecting me at all times, not least when a virus gets a hold. She didn't question whether or not it was "all in the mind". She didn't need a crash course in what medical science is gradually uncovering. She's in her 20s and actually on the ball!

She left, saying that considering the concurrent conditions of Type 1 Diabetes plus M.E., I could be looking at at least three weeks before seeing much improvement. So I can do what my body so needs me to do and rest to let it regenerate itself slowly as only it can do.

This virus has already made my throat as impossbly sore as I remember it 11 years ago after my first bout of shingles should have warned me my body was struggling. Back then I had no idea that my many problems were part of M.E. (not just diabetes). Back then, the severity of the throat pain was inexplicable by my then-GP in Southampton. It would be another 6 years before M.E. was fully confirmed through the local M.E. clinic and first through many tests and a session at the Immunology and Tropical Diseases Unit.

The sensation of lying on a burning mat has returned to haunt me on a regular basis as my muscles twitch with enervation, the worst it's been for quite a while. Disconcerting, as you can imagine. I don't want to slip back this time, into al major relapse.

We all know, with M.E., the next crash is always potentially just round the corner. Overworking muscles. Overworking the brain. Doing two things at once. That random virus from a cold or flu or anything at all. Ostrich head in sand and eyes on the clouds or not.

The young GP was up to speed and so reliable. With a virus, she knew antibiotics are ineffective. That's more than several people with (supposed) nursing training had advised before her visit. Thank goodness at least some younger folks in the N.H.S. have some quality basic training! That's so often NOT been my honest experience in the past, particularly with well-meaning overworked souls trained years ago. She did say that with the underlying conditions, if I wasn't improved at all after a month, I might need some blood tests (my diabetic yearly bloods are due anyway) to make sure I'm rallying.


My faith in humanity restored, I'm on my way to recovery. At least to the state of health (such as it was) I had before this virus!

Yippee-dee! Might still feel like death warmed up, but my Spirit's back to soaring with hope that centimetre by centimetre, M.E. Awareness is slowly, slowly inching forward! :)

So pharmacy, so good

 Went to collect my repeat prescription stuff this morning and got collared for the usual annual review with the pharmacist to make sure your meds are still right for you and that you understand what they're all  for. This is a good plan, I think. Helps to give people a chance to ask any questions without taking time at GP, and maybe catches any mistakes or abuses.

Once in the little office (bang next to the queue waiting for the till who can hear every word of the review through the door!) the pharmacist went through my diabetic stuff item by item and on to my Ramipril: "Yes, that's right, for high blood pressure."

Finally it was the turn of the Simvastatin. A well-timed opportunity to ask for a professional opinion. I explained that a diabetes nurse had suggested I try coming off the statins a couple of years ago to see if there was any improvement in symptoms. I also asked if she could check exactly when I was first put onto them. Can't trust my own foggy memory of it being not long before massive M.E. flare-up!

Trouble is, I've come back home without finding out. So much concentration to explain and listen and sit and stand and juggle the heavy doors etc etc that it completely slipped my mind. I know she'd started to look on the computer as I asked! Also, the doc has filled the order for needles instead of Ibuprofen painkillers. Both these items are on the second sheet of my repeat prescription. Did I tick the wrong item in my brainfoggy state? Probably!

The upshot was that the pharmacist agreed that it might do no harm at all to stop taking the statins for a while, and if I find an improvement in symptoms, then I can update my GP and go from there. 

All good. What surprised me a bit was that the pharmacist had never heard that statins could deplete the body's CoQ10. It seems widely documented online. It's even used as a selling point for CoQ10 outside the context of M.E./CFS, for those on statins! But she was still in the dark!

Given that, I was less surprised that she hadn't heard that many patients with M.E./CFS were also deficient in CoQ10.

But then, nothing surprises me about general lack of awareness of M.E. both in the medical world and the wider public and media!

Sneezing and shivering today which is just a cold, no doubt, not M.E. related at all. Slamming headache and achey now either with the virus or the after-effects of this morning's energy-heavy local outing. I felt less brainfogged before that, I think, and only woke twice or three times through the night (once at 2am with a hypo, when I stumbled out to get the restorative jelly babies from the bedside drawer and ended up tipping them all over the carpet. Still finding them this afternoon! Lol!)

Time will tell, but I'm still more than up for it!

Me and M.E. tonight

A snapshot.

But M.E. is too long for a day.

Decades are like a lifetime.

But this won't be me forever.

Because it can't become who I still am inside...

Running out of spoons! Welcome to the energy juggling circus!

How 's it going today, flower? You DO look well!

Had a better night last night and slept through most of it. Which was nice. And refreshing!


Woke early with the Song thrush (I nearly just wrote "thrush" but that would have been a different problem altogether!) and the sunshine. No statins again last night. Supposed to be collecting a repeat prescription for more statins (along with loads of other meds) this afternoon, but not planning on actually taking any more Simvastatin any time soon.


Head felt clearer today, compared to often. Very clear, for me, which is delightful! That could be no more than a "good" day, I suppose, but it's always a great feeling, and I survive on balanced optimism!

Aches and pains at a minimum, which isn't that often the case. Took my 15mg Enada NADH with water about half an hour before breakfast. Blood sugars a bit up this morning 13.2 mm/ol, nothing unusual, but nowhere near perfect. Somogyi Effect or Dawn Phenomenon? Whatever! That's not my concern in this study.


Took 50mg CoQ10 with brekkie. Had a small spoonful of olive oil to swig it down with. Yes - it sounds disgusting but my breakfast was only fruit so didn't contain the right accompanying fats today, and I don't have the capsules that come with Vitamin E (an oil). Something to think about if I can afford to buy another lot after this.


Decided after breakfast chores, feeding the birds, catching up with emails etc, walking slowly round the sunny garden to take a few photos for my blog, that I'd better test this energy out properly.

As ever, it's all I can do to keep on top of jobs around the house and garden, even on the better days, so my first stop was cleaning the downstairs and upstairs loos which I managed perfectly well. (Oooh! Doesn't she look WELL? Yes, dear. *rolls eyes*).

Then I decided I'd take the dustpan and brush to clean up any obvious major fluff etc ready for a proper hoover through later or, if need be, another day. I started with great enthusiasm (as always!) downstairs and then it was time for the stairs, landing and bathroom. I managed all and felt pleased as I was finishing the bathroom carpet. So far so good.

 I went downstairs. This is a good day indeed, I thought. Then I began to make a drink. For the energy-bankrupt among us, drinks don't make themselves. There's reaching for a mug, walking across to the sink, cupboard, bin, drawers, pushing plugs, filling kettle, lifting said kettle, spoon, mug, balancing, pouring, stirring, turning, negotiating worktop edges. 

Sounds crazy, I know, but no wonder we're sometimes too tired to drink or eat what we prepare. 
And that's just for one!

 If there's a mate or mates with you, that involves talking, listening, understanding, showing caring by processing what you are hearing, co-ordinating jokes or replies if you actually want to show the real you inside this awkward mess, through the crash of cups and hiss of steam as your wrists buckle and you try not to misjudge the distance to your mouth or forget your train of thought!

All this costs units of energy for each part of a task. We start with a limited number of "spoons" as one clever lass explained it to her friend (bless you, Christine Miserandino at butyoudontlooksick.com!) Go look at her wonderful explanation of what it's really like to live with illnesses where you have limited energy for seemingly trivial tasks that others take for granted, here:

The Spoon Theory by Christine Miserandino 

It's such a great explanation of diseases like Lupus, M.E., CFS, M.S., Parkinson's Disease, Huntington's Disease, Hashimoto's Thyroiditis, Fibromyalgia, Gulf War Syndrome and so many other "invisible illnesses" which mean energy can't be taken for granted any more. Out of sight "invisible" doesn't ever mean out of mind, for those who live with them (even less out OF our minds!) Well, not more crazy than we were before, anyway!

As I picked up the coffee mug, I could feel the world slowly (not very slowly!) collapsing into painful slo-mo round me. No. Not hypoglycaemic. Just M.E.'s "post-exertion malaise", that hits like a sledgehammer at any time after exercise. That's why graded exercise is often counterproductive when administered to people with ME/CFS by therapists with no imagination or real experience of such conditions. The after effects of exercise are just that. After. Not when you see us "well" (haha!) doing it. Any time from a few minutes, to a couple of hours or quite often, the next day. Even when the "exercise" seems minimal. I wasn't exactly dancing as I brushed!


My hands, knees and back felt, if it doesn't sound too ludicrous, nauseous. So did I. My ears were ringing like an express train was going through a station inside my head. My temperature began to rise (no, I don't mean a bit of a hot flush!) and I was starting to get unsteady. My vision was starting to be blurred. My head was banging and my muscles felt as if they were turning to water. Water and fire and fog. My stomach felt so raw from the weak core muscles in my torso. My throat was getting sore and dry and my neck glands tender. Painfully tender.


I lay down for a minute or two (I wish it was that short!) to recoup my energy to begin again. But for the rest of the day I've not been able to. I managed to boil a kettle for soup, but wasn't even up to cooking, let alone eating much for lunch. Certainly nothing involving a series of complex "spoon" wasting processes!

Still, taken as a glass half full, that's a big achievement for me. I always think "what if somebody visits today without giving me a day or two to prepare?" I love visitors, even if my M.E. raddled body sometimes pays after they've left, unbeknown to them. I wouldn't want to be a recluse completely,  just to save the energy it takes to love your friends and be loved by them. (That's usually a very small and self-selecting group of true friends, as anyone who hasn't been able to have the common decency to be 100% fit again within the fortnight will know only too well!)

Folks are very kind in "not noticing" a layer of dust or a stray pair of knickers down the back of the radiator, but I know. I'd sooner be prepared so I can at least keep what energy I've got to help my guest have a laugh and to enjoy each other's company, not be secretly whittling whether I've had the energy/warning to check the milk's not gone off!



Not out of the woods with the M.E., yet, then, but I'm still thinking that stopping the statins may well maximise my chances of keeping a clear head, a more normalised sleep pattern and hopefully no extra muscle pain from the CoQ10 deficiency. If so, and the statins are hindering not helping, triggering even worse troubles, how can the medical establishment justify not warning people with diagnosed diseases of the central nervous system that they should either

(a) avoid statins or

(b) take hefty CoQ10 suppplements to redress the loss?


I certainly shall be!  I'm determined to be  fighting in the future to help make others more aware of these matters so we can all make informed choices about our own body's particular needs, and support one another with humour and hope.


I hope as my body starts to get statin-free and my CoQ10 built up a bit more, my cells will be increasingly able to make a better shot at sparking their own energy, as they have in the past after periods of severe illness.

Sooner rather than later, preferably!

Sleeping Beauty. Well, sleeping, anyway!

You learn something "new" every day

Today in the "Daily Mirror" (please watch me in case I write something true but libellous!), Dr Miriam Stoppard wrote an article entitled:

"Could new techniques ease living with ME?"

Here's a link to said article:

Miriam Stoppard's "advice" in "The Daily Mirror"

Dr Stoppard is well known for her previous statements that ME (lumped here under the CFS brolly with no apparent insight gained from the last few decades of medical research!) is bunk.

She graciously (yes, I'm doing irony!) deigns not to make the same sweeping statement again. Not because she has learned from the latest research, but rather, because she is still smarting from the "bitter experience" of upsetting people suffering with ME through insensitivity and ignorance last time she plunged into print about it.

Believe us, the "bitter experience" of living with ME, not to mention the "bitter experience" of having well-meaning souls snipping out similar nay-saying misleading articles and press cuttings like this to pass on to ME sufferers to "give us hope", bears no comparison to the temporary fit of pique caused by you having your highly paid opinion shown up as risible and dangerous, Dr S!

For your information, there is nothing "new" by any stretch of the imagination in the notion that CBT and GET can help (or cripplingly hinder) the progress and wellbeing of people with various forms of ME-related illnesses. Both forms of talking therapy/graded exercise have been with us for many years, beginning in those dark ages when ME was believed to be no more than a form of depression with added idleness thrown in for good measure (when we had the luxury to wallow in our so-called "lifestyle choice" AKA "Yuppie Flu").

In the mildest forms of post-viral fatigue, indeed, CBT (Cognitive Behavioral Therapy) and GET (Graded Exercise Therapy) will soon, inevitably, make everything hunky dory as the body gets over its temporary viral setback. But ME shows every sign of being something much more disabling and persistent for a percentage of sufferers.

For the rest of us, in fact, in clinical trials, it has been proven time and time again not to be helpful at all, but often quite the reverse. Those who were too sick to show improvement, or who were made worse by CBT and GET, have been systematically airbrushed from the medical world's horizon.

The NICE guidelines themselves have been challenged robustly for deliberately and cynically giving weight to the idea that the cheap and potentially ineffective CBT and GET are the only way to go. It saves on funding proper rigorous research, in any case. 


Dr Stoppard has read her NICE guidelines, at least. Haven't we all, doctors and ME patients alike? But the PACE trials (to which I assume she is referring in this article?) did not, as stated categorically in her article, prove that these generalised techniques and therapies were a newfound lifeline to the "walking well". Cos we ain't always walking, and we're very far from well!


The article, to be fair, does admit in the penultimate paragraph that CBT/GET should be used alongside other approaches such as:


"dividing the day into sessions of rest and work; setting realistic goals; healthy eating; trying to reduce stress and joining a support group".


These are all elements of "pacing" well known and vital to merely functioning day to day for many of us with ME.


I'll "try to reduce stress" right now, by putting the article to one side and having a lie down to recover from a few sessions of angry, muddled typing and several edits through the day!


Giving a whole new dimension to the concept of patronising, the article ends with the breezy:


"So people with CFS" [the much vaguer term used here instead of ME in the headline!] "may want to try CBT and graded exercise. It could change their lives".

We're so over breezy and patronising, Miriam. Thanks for asking.