M.E. treatments I've tried; or "Buyer beware"?

While people with M.E. look forward to a breakthrough in medical research and treatment, with standard non-treatments offered by many doctors and the "M.E. Clinics," usually no more than CBT and GET, we are often forced to take our treatments into our own hands.

Most of us have learnt to "pace" ourselves, when we can do so, to maximise our energy and minimise pain and other symptoms. Normal painkillers, like Ibuprofen and Paracetamol are limited in their effect, in my personal experience. Nothing touches those nerve pains, like having toothache in your neck, chest, wrists, back etc. Many touted "M.E. treatments" out there are often  disconcertingly varied in their (reported!) success rates or prohibitive in their costs.

When I was first ill, I learned to deal with the pains all over my body and feverishness and swollen glands all through the night by lying (as best I could) on a stick - yes, just a normal polished wooden walker's pole. Mad? It worked for half an hour at a time sometimes, as the pain of feeling its hard lumpiness under me helped me to filter out the more diffused all-over pain I could not put my finger on or soothe in any way. Then I would wake up, back where I started, but at least I'd had a few minutes of sleep!



Over the years, I have tried Melatonin. I asked my doc about it, as I knew from researching it, that in the UK, at least, she was not allowed to prescribe it. She said as much, so I quietly sent for some online and took it for as long a period as I could still afford it. I had some sleep. Whether from the Melatonin, or sheer exhaustion or going through a better period, impossible to tell.




I drank pints of Berocca over the years too. Expensive but readily available fruit flavoured drink designed to restore "You, but on a good day" as the popular advertising campaign proclaims. I did have good days. But bad ones still arrived. As with many treatments aimed at those with no better options, my purse became emptier as my health continued to fluctuate.




My sense of humour and positive spirit ( not to mention what we Christians call "prayer" and "Giving thanks in every circumstance"), got me just as good results, for free, as did time, and whether or not there was an "R" in the month or a "Y" in the day!


Last year, in a better period for me, I sent away for a special powder called ME-Relief, designed by a man, Paul Carpenter, who believed he had skills in such matters, as well as being an M.E. sufferer himself. He had devised the powder based on what he knew of the body's chemistry and the science behind the illness and immune system, such as it stands. That, and his sheer desperation to be well again.

Again with hope and an open mind, I took the powder as prescribed through many days until the trial starter pack, at its reduced introductory cost, ran out. I still had bad days and weeks when I could manage very little and symptoms were disabling. My good periods were good when they were good, and bad, as ever, when they were bad. Please understand I am not saying that anything does or does not work, and if you believe it safe, then everyone has to decide for themself what may do them good. I object, however, to giving undue credit to substances for my regular oases of slight improvement. I have those same oases and crashes without any outside intervention or cost! The powder certainly didn't make my symptoms any worse or better in the end, but I bless him for his initiative. His website's support and information is a lifeline in itself to those struggling to understand and live with M.E.




The "Lightning Process", a hot potato of frighteningly emotional proportions in the M.E. community, is known to have transformed the lives of some and left others poorer and unhelped, longterm. I haven't tried it, so can't give my opinion either way. Others in the media are very quick to sing its praises in "curing" them, only to relapse (as I have done for at least the past 20 years, as well as going into remission without apparent intervention) before re-emerging for the next interview a few years later as miraculaously "cured" once again. It's always "once and for all" at the time, of course. Pyramid selling techniques in some "cures" mean those who find it helpful become evangelical practitioners of whichever course helped them, or, if an uncured "failure", they are quietly brushed under the carpet and not mentioned in statistics for fear of being "negative".We must draw our own conclusions, and will do so.


The Perrin Technique is another treatment involving among other things a method of massage to drain lymph nodes and provide stimulation and relief which I have tried. It feels good, when you can bear to be touched, but, for me, had no lasting measurable benefit, though I still get my Mum to press the suggested Perrin points when I'm ready to scream with discomfort and pain!



All along, I have read how NADH-Q (NADH-coenzyme Q oxidoreductase, Coenzyme Q10), a protein that occurs in the human mitochondrial genome DNA is involved in helping with energy matters in the cells. It helps to generate energy in the form of ATP (adenosine triphosphate) as it does naturally in a healthy body. Googling will explain any of this I'm not expressing clearly enough!



Considering the nature of M.E., the seeming inability for your inner battery to recharge, and all the attendant knock-on effects of this, taking this as a supplement seems to make sense to a sufferer.


So here I am. Ready to try something else. A friend whose sister has M.E, told me recently that her sister swears by taking ENADA (NADH) tablets  which have given her more energy. Yes, she still has M.E. which affects her life on her bad days, but she believes in the power of these pills to transform for the better.



This week I sent for 30 5mg tablets from Amazon (cheapest deal I could find this week, at least, at £11.90 the box). 


Reading medical opinions online, it seems that 10-20 mg is the safe and recommended dosage. At the higher end of this to be effective in touching the complex demands of a body compromised by M.E.
I've taken 10mg as an introductory dosage before lunch. I know I can't afford it regularly, but will save enough to target days when I have particular challenges, like weekends when I have promised to take a service for an hour through to the summer months. Even with a working wage, I don't see how I could do it longterm, but once back well enough to work, might only need it for extra draining challenges?


Summer is often less virus-riddled than winter (often but not predictably, as with most things M.E.-related!), so the tablets have the best chance of helping, perhaps, at this time of year. The clocks have been put forward. The spring equinox is past. The lighter nights are here!


So watch this space without judgment or fear.
Bring it on!

Voice of the Voiceless "Scum"

Hear nowt...

See nowt...

Say nowt...erm, not likely!

Guardian article about the fight for the genuinely disabled



This article (link above) highlights how one woman is making a difference. Like disabled and disabilty rights campaigning bloggers everywhere, she is helping to enable the voice of the genuinely disabled to get across, in the face of the latest panic-driven welfare reforms.

We all know reform is needed. The fear is that the "one size fits all" approach, where the form-fillers of ATOS (to whom inadequately devised new "capability assessments" have been farmed out by the Department of Work and Pensions), will deem everyone fit for work just in order to tick boxes and meet targets.

Like most of us, I've been through rigorous DWP independent disability assessments before, when the outcome was always that in no way was my health adequate to return to work, even part-time. A pen-pusher saying "you're well" has never yet been a cure for systemic disabling illnesses like M.E.!

I really admire how this disability campaigner,  Kaliya Franklin boldly calls her own website:



Benefit Scrounging Scum


This is the label the media has blithely affixed to her, to me, to you and all those forced out of their jobs and onto welfare or early pensions by genuine illness, lumping us in the same bracket as malingerers and cheats to whom we bear no resemblance at all.

For many of us who are ill, the current welfare reforms that target all alike, fill us with dread, despair and unwarranted shame. Jobs are hard to come by even for the young and fit. Those of us who might manage to muddle through for a day or two, would then be so crashed and unwell that we would be worse off than ever before.

I know. I've been there. I forced myself back to work so many times until I could no longer walk, think or speak with M.E. 

Claiming welfare is no glamorous "lifestyle choice". It's a last resort. It's a lifeline that we hate to have to ask for, and one we never in our wildest nightmares imagined we would have to rely on, for a day, let alone for an extended period.
 

I, like thousands of others, earned a decent wage in a demanding, satisfying professional career and long studied-for calling, after a lifetime's apprenticeship of experiences, work paid and unpaid, and grafting.

I paid my taxes (I never claimed for half I could have in my job!) which I still pay, of course, living greenly, cycling and walking, working on my days off whenever the phone or doorbell rang, going the extra mile without a second thought (as everyone does in caring professions and  so many others), always called "hard-working", relied on by many with a full diary of work and social commitments and connections.


Now, through no choice of my own, here I am. Through some unseen virus, picked up through hard and risky work in foreign parts, (which people wrongly thought heroic, or crazy at the time, people who filled up my "spare" time for years afterwards wanting to hear all about my work, at their fundraisers and meetings!) I'm suddenly counted by those who don't even know me or my blemishless history of conscientious citizenship, as scum. Everyone and their dog can now say whatever they like about me and wish me to hell in a leaky handcart as a contemptible "benefit bludger."


We may be too sick to march or protest as we might have when well, as we gladly did back then on behalf of those more vulnerable people for whom we once gladly spent our time and efforts, and will again if able. (Speed that day!).


But there are ways now, by internet, for instance, by which vulnerable voices can still be heard. Some days I'm too sick to read a blog, let alone write one, but when I can, I try to do my part.


I lend my support, such as it is, to disability rights campaigners like Kaliya Franklin in this article, and her fellow blogging colleagues, like those who blog as


The Broken of Britain


and I appreciate The Guardian (for once!) for giving the unpopular hoarse voice of we voiceless "scum" a balanced airing for once, without all the devastating vitriol and hype.

"Everybody's Changing": Keane sing my M.E. song

Everybody's Changing...

I just wanted to share a song that, in so many ways, sums up my M.E. experience. (Video link to YouTube is at bottom of this post)

It is British band Keane's first hit, that was played everywhere on the radio at the time my very worst M.E. crash of all time seemed to be robbing me of my health, my job, some of my associates (true friends remain, thank the Lord!), my prospects, my ability to get out there and connect and be who I am, my identity, my strength, my hope. This song sang my story!


I had deep faith that Jesus would never abandon me, and can use every circumstance, but being an honest-to-goodness human lass, I had moments when I mourned the active, busy me my illness was stripping away. People all around me had lives moving on, when in my mid forties I was suddenly faced with early retirement, limited strength, mobility and pains that no pill could reach.

People who had only known me recently, or just saw me shuffling along on a "good" day with stick, unable to be up and about for more than an hour or two at a time without untold consequences, didn't really know me at all, I realised with increasing horror. Living in the moment suddenly didn't seem such a tempting option!

When this song came on the radio, a beautiful, emotional song, I would often find myself weeping as it put all I felt into its lyrics:

"...you're aching, you're breaking,
And I can see the pain in your eyes"


and

"...so little time,

try to underestand that I'm

trying to make a move  just to stay in the game,

I try to stay awake and remember my name,

But everybody's changing
And I don't feel the same." (c) Keane


Trying to stay awake and remembering your name is something that will strike a chord with so many of us who live with M.E.


Listening to it now, I'm thankful how songs like this, for eclectic music lovers like me and so many others, become like friends that help to express the deepest joys and agonies in our lives.

For me, I feel God uses everything to minister to us, as he reaches out his hand to us through the darkness.

I hope it blesses you too, today. You're not alone!

Keane: "Everybody's Changing" (from their album "Hopes and Fears") (c) Keane 2003

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.