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.

Soothing Sounds, Sweet Sleep?

Many people with illnesses that disrupt sleep patterns find out two things when their condition is in a flare-up:

(a) they can sleep forever through sheer exhaustion at the most inappropriate times, and

(b) sleep often eludes them at night, or sleep is interrupted and unrefreshing.

I'm always on the look out for sounds that I can play quietly just before retiring to help to ease my way into slumberland. I find favourite daytime tunes and songs are often too charged with emotion and excitement to be conducive to the land of nod. (That also applies, for me, to those slightly menacing talking tapes with stories or "on-the-shrink's couch" type delivery that gives you the willies rather than ushering you off to the land of Nod!)

Silence can be great, if thoughts aren't racing, as they often do during times of bodily illness when the mind can't switch off properly.

Sea sounds, waves washing on a beach or over shingle can do it for me, too.

Wind whispering through trees, birdsong, distant thunderstorms that make me feel snug and sheltered under the sheets also help me to drift off sometimes.  There are so many ambient cds and mp3s available with natural sounds.

Now I've discovered that piano jazz can also sometimes do the trick. The tinkling cascades from the piano, the low thumping heartbeat of the bass, the tick and tumbling of gentle drums and snares can soon have me in the mood to drift away in peace. 

Is it because the sort of chunky "Linus and Lucy" piano played in old Charlie Brown cartoons by such as Vince Guaraldi remind me of childhood and usher me back to the womb? Whatever the psychology, it works for me. Bill Evans, Dave Brubeck, Keith Jarrett, Herbie Hancock, Art Tatum, Thelonius Monk, Red Garland, Chick Corea...but now the mind's racing again. Each person will find their own particular relaxing groove to help sleep approach, ranging from silence to swing and everywhere in between.

Let the mellow mood just sweep us away, and all that jazz!

The Straw That Breaks?

Decided to have a quick shower.


I'd put it off this morning as balance dodgy.


Kept making up mind to climb those stairs.


Kept having to lie back down to gather strength.


Finally made it into shower.


Now too crashed to type for long. Or make much sense.

Can't raise my hands or get warm. Chest feels like its swollen with pain and tender with the effort of breathing in and out. Legs and arms belong to some other sucker.


So not much today.


One thought adapted from a comment I heard the other day. It sums up my experience of M.E. and is no doubt true of so many other so-called "invisible illnesses":

Stay with me for a day. Choose a good one, and you'll leave thinking I seem ok.

Stay with me for a week. You'll begin to glimpse how far from "well" looking "well" for a few hours really is!

But my thoughts, like yours, I guess, are all with Japan. No matter how sick or spent and weary they are, for thousands there's nowhere to lie down, or shower, or rest under their own roof. There are no words to cover that. No easy answers. Only mourning and lamenting with them, doing what we can to support them in the rebuilding, and praying with them for strength for today and hope for tomorrow. 

 "A bruised reed he will not break, and a smoking wick he won't snuff out, until he has brought justice through to victory." Matthew 12:20 in the NIV


or as the Message version puts it so compassionately:


"  He won't walk over anyone's feelings,
         won't push you into a corner.
   Before you know it, his justice will triumph;"

M.E. in today's "Guardian"

Spotted this "What I'm really thinking" excellent short piece about the realities of living with M.E. in the "Guardian" today.

Bit fogged and weak to say much. 

Well, never mind. This article says it all, really.

I fully concur with what's been said here.


This happens to me almost every time I'm well enough to venture out of the house.


Yes I look well. That's the reason you are seeing me at all for a few hours.


You should see me when you don't see me. If you see what I mean? But you wouldn't want to, and no way would I be up to it.


Hope you find this article as refreshing as I do!


Article about M.E. in today's "Guardian"

Some Mothers Do Ave ME

Daily Mail article about Michael Crawford's long slow recovery from M.E.

TBH I'm struggling to concentrate, sit up, balance, etc for more than a few minutes at a time, today. But on the whole, apart from exhaustion, nerve pain, balance and co-ordination issues that have dogged me rather this week since I took a service  for a single hour the week before last, it's been a good week. The joy of friendships and the start of Lent, spring flowers, laughter and all life's sweetness makes up for the M.E.-sodden bits of life! It does for yours truly, anyway!


But I wanted to share this today. I spotted this article in the online Daily Mail (Please see link above).


It's an encouragingly honest article by actor, comedian and singer Michael Crawford, beloved by my generation as bumbling Frank Spencer on 70s sitcom "Some Mothers Do Ave Em".

Michael tells of how he was stricken by M.E. when, like many of us, overwork and getting run down  (in his case the final trigger was working in a hot padded "fat" suit!) led to a virus that triggered his immune system's meltdown into M.E.

He found himself unable to pick up, even though previously so fit, after a bout of seemingly innocuous flu. That had happened to me, too in the Autumn of 2005. Well, the flu did. And the meltdown into M.E. Not the padded fat suit!


Michael had his worst period of "bust/crash" of M.E. for a whole seven years. During this time, like me, he sometimes wondered if his career was over. He retreated to complete rest and recuperation in New Zealand, allowing his body time to recover in its own way, as I'm also in the middle of doing, though I am only now just over five years into recovery. I hope by the time I get to the seventh year, I too will be back to cooking with energetic gas, like Michael, forever, or however long a "boom" of recovery I'm granted.

I'm well aware, with all the different sub-types of M.E we suffer, not all of us can achieve such a remission. Some have never had health and freedom from M.E. from a young age. I always count myself very blessed and fortunate to have been able to do so much, achieve so many of my goals before being floored by M.E.in my 40s (though it was tapping on my shoulder much longer than that, of course!).

Like many of us, Michael took the time to alter his diet to as healthy an option as possible to give his body all the help he could. I lost six stones in the time I've had M.E. (it was the debility of M.E. that slapped the weight on me in the first place of course.) One of the few "advantages" M.E. has given me is the space to sort out my Type 1 diabetes, which, although still unpredicatably erratic with unannounced hypoglycaemia at any hour of day or night, at least now is better controlled through carbohydrate counting than at any time during my adult/working life.

I bless Michael for sharing his own journey and his story all too familiar to at least some of us with M.E., those who are neither the least nor the most severely of all affected. I know some of the most severely affected find yet another story of celebrity M.E. recovery in the media is more than a little hard to swallow, and my heart goes out to all who feel this way. This is not an easy road, and the media has so long mocked and ridiculed M.E. sufferers that the resilient humour of many is tried to the limit.

Read the link and judge for yourselves.

From my personal point of view, his story inspires me. It gives me a chink of hope in the clouds of future uncertainty. In my own long, long slow miracle of painfully slow progress towards recovery, looking back on the little ways I can be useful now that were closed to me just a year ago as my career and life slipped through my grasp, I see hope that I too can dance on life's stage again, restored to some semblance of my former self!

God bless you, Michael. Be gentle with yourself and enjoy every moment of your new lease of life!

What's in a Name?

Some days my brain is mush.
Sometimes that's thanks to being crashed from M.E.
Other days, my brain is just mush.
No excuses!

Like today.
I discovered that the plastic surface of the buttons on the door of my 5 year old microwave was getting very blistered and bubbly. When I investigated more closely, the penny finally dropped. After only five years! It's just one of those transparent plastic protectors manufacturers put over screens, meant to be peeled off immediately! Here I was, 5 years later, with the thing still in place.

Now although I bought the micro at around the same time as I was floored by my latest major bout of M.E. five years ago, I can't blame that "Duhhh!" moment on M.E. brain fog.

I can't blame comical moments like that on anything else but my slightly scatty, away with the fairies personality. I've never been that quick to grasp the plot, even with various letters after my name!


But I'm struggling now with a new "development" in the science behind M.E.  Or rather the language used to provide more baffling acronyms. It's enough to induce "brain fog" in the fittest!

Circa 2008, a study claimed a link between M.E., prostate cancer and related illness, and XMRV (Xenotrophic Murine virus-Related Virus). Yes - virus-related virus. There's a good start towards clarity, eh?


Now, in March 2011, I see on various blogs, M.E. chat groups and elsewhere on the web, XMRV is going to have a name change, to HGRV (Human Gamma Retrovirus). For resultant conditions like M.E. with possible viral links, the snappy new acronym will be HGRAD (Human Gamma Retrovirus Associated Disease). One reason seems to be "Murine" refers to mice, so the new name focusses back on the humans affected, not visions of Mickey Mouse and Ratatouille!


Should we break out the champagne? (I might, if only M.E. had not also made me allergic to alcohol!).  Wait! I've only recently got one friend's eyes to light up with understanding that my Type 1 diabetes and my M.E. may well both be understood one day to be autoimmune diseases, quite distinct from Type 2 diabetes and a spot of vague "T.A.T.T." (Tired All The Time).

Now we have yet more letters to juggle with! While for the general public and for many G.P.s,  understanding and acceptance of the crippling, frustrating disease and the umbrella of illnesses that may or may not be related, is still a lottery dependent on personal encounters with genuine sufferers or the cynical lies propagated by the media and talking heads.


While the war of words goes on between the labels M.E. (Myalgic Encephalomyelitis, or as some insist, Myalgic Encephalopathy), C.F.S. (the much vaguer Chronic Fatigue Syndrome, which IMHO fails completely to describe 3/4 of the disabling symptoms and coddles folk into the notion that a bit of backbone would cure those contemptible malingerers!) and P.V.F.S (Post Viral Fatigue Syndrome, which unlike M.E. seems to harbour hope of a quick return to full functioning), we now find more riddling initials to addle our foggy brains!


I have so many friends at the moment struggling with a wide variety of illnesses which, like me, they simply refuse to be defined by or beaten by.


The labels, the letters may come and go. But we're here, guys, and we're not going to be filed away under T.B.A.

Keep smiling and trusting that you are certainly not alone.

One "Flu"-jab over the Cuckoo's Nest

Well, another year dawns!  From my own experience and from listening to others with M.E., I know this time of year can be a tough one.

After the frantic preparations in the lead-up to Christmas, many of us can overtax our strength and immune systems before we even realise it, until the "crash" comes and makes us lay down our arms for a while! The line between "doing" and "being" is a subtle one, but an essential part of our armoury in combatting and living through this persistent, sapping disease.

Since my last blog post in October, I've certainly had my ups and downs. I was overjoyed to discover one of my short stories, "The Butterfly Wall" was to be published in the January edition of "Writers' Forum Magazine" here in the UK, and kept busy on my better days through November, when brain-fog was at a minimum, writing the first draft of my new historical novel. At about the same time I was hit by a virus which meant I was too unwell to attend my GP's annual flu jab fest. Every year it's a dilemma of "ip-dip-my-blue-ship"* as to whether I should have the jab or not.

Most years the flu jab has preceded a huge flare-up and worsening of my M.E. symptoms. So I wasn't in a hurry, once I began to pick up a little, to re-book the appointment. Even the nurse at the practice agrees it is difficult to advise what's best: as a Type 1 diabetic, I am in the "at-risk" group who are advised to get immunised, but as an M.E. patient, my immune system has ideas of its own that can make the jab less than helpful! (Solution - don't be greedy enough to have both conditions concurrently!)

However, I have now booked my shot for next week. I know at least 3 friends in our local area have been hit by severe, life-threatening Swine Flu in recent weeks, so I feel it my duty to have the jab, whatever effect it has on me, in order to protect those close to me. My mum's own health, always resilient even at 79, was compromised by the month-long saga of my failed boiler (as Facebook friends know only too well - zzzzz!) through the coldest winter in living memory, to the extent she has developed shingles in her head and the added extra side-effect of Bell's Palsy, so I refuse to put her or others at risk of catching flu from me just because the jab has adversely affected me in the past. The current jab formula claims to protect against Swine Flu, too, so perhaps it will be worth the risk this year. I hope so.

Then, the day after I finally decided to book the appointment for my jab, the national news revealed this week a shortage of the flu vaccine in some parts of the country. There's still time to race me for mine, if you're desperate - five injections a day is plenty for one body, already, if you ask me! Just call me "Pincushion"...

* The phrase "ip-dip-my-blue-ship" comes from a playground game we used to play at infant school in Yorkshire in the 1960s. The rhyme goes:

"Ip-dip, my blue ship,

Sails on the water,

Like a cup and saucer,

Out goes YOU!"

I've read about other variants since then from all parts of the country. The rhyme accompanied the counting round of the participant children's legs until the last person counted on "YOU" was out of the running for being "it" or "on" in the subsequent chasing game. The phrase is still used in my house (by me, anyway!) to express the horns of any dilemma!