Why not give your GP something worthwhile to watch?

Just got back from GP.

Had my little list with me of things I needed to ask/say. Saves the usual pantomime of playing "Twenty Questions" when I forget every other word and name! Even medicines I've been taking for a decade! Didn't entirely work. Still managed to do a bit of "Errrrrrrm...." where she had to do an impromptu prompt. Mostly correct!

First on my list: feedback on my follow-up at cardio a fortnight ago. The cardio said the various heart tests showed I had tachycardia, heart going like a steam hammer, with extra beats. Which would explain the glugs and giggles I can regularly feel there. He didn't say exactly what was causing it. But that combination sounded like A-Fib or A-flutter of some type. He put me on a low dose (2.5mg daily) of beta blocker bisoprolol. "See me in 6 months".

Trouble is, GP hadn't had a letter to confirm this.  So she was whistling in the dark. She doesn't think it'll be A-Fib, as that's irregular beats on irregular beats. (I could just see her picturing the med school diagrams in her head!). It would be ectopic beats, she said. I reminded her it was tachycardia, too, and mentioned how common P.O.T.S. (Post Orthostatic Tachycardia Syndrome) and OI (Orthostatic Intolerance) is in M.E. She actually took this suggestion on board, and seemed to think it might be a possibility. Not a diagnosis, of course. That would be asking too much, wouldn't it? Can't force them to do Tilt Table tests, can we?

By the time my month-long initial bisoprolol prescription runs out, she says, she should have the letter from cardio, and it will then be on my repeat script. We hope! Maybe I can make another appointment then to find out what's what. She mentioned what the cardio didn't, that beta blockers also tend to block diabetic hypo early warning signs like speeding heartrate. I'd read that online, but reminded her that one of my biggy problems is that I get no such helpful safe warning till my blood glucose suddenly plummets to 1.9. Shutting the stable door after the diabetic pony has bolted, as it were. So that shouldn't be any additional problem to someone who has to test as often as I do already! "To be continued," then!

Second on my list was painkillers. Mentioned that friends with M.E. had been taking Pregabalin (Lyrica) or its cheaper, sluttier sister Gabapentin. Asked also about commonly M.E.-prescribed Tramadol - but as I react very badly with sickening side-effects to anything opoid-like, this wasn't an option. She duly started me on Gabapentin. Slow build-up. 100mg tab today and tomorrow. Up to 200mg in two doses on Thursday and Friday. Then up to 300mg in 3 doses by the weekend. She did say some people take as many as 9 a day. Hope it won't come to that!

Very glad my surgery now has a fabulous, efficient chemist within the waiting room. No trailing into the shopping precinct to the Co-op Chemist. They never used to have half the stuff, even the meds you regularly ordered! So that used to mean two, even three return trips for meds you were "owed". Today, from this in-house chemist, I came home with Gabapentin in hand!

I glossed over item three on my list. The Jobcentre Plus adviser had handed me an application form for DLA (Disability Living Allowance) and told me to get help from my GP and from the M.E. Association. I hate claiming anything. I know so many friends with all sorts of life-crushing disabilities much more easily recognised than M.E. who have been turned down at the first hurdle, dropped to the lowest rates, or lost it after qualifying for years as the new Welfare Reform Act does its evil ATOS-infested devastation in lives already wrecked by illness.

 I muttered that I hate claiming anything if I can possibly manage. She already accepts that, having known me when I was still able to work, before my most recent relapse meant I was finally diagnosed and then forced to take reluctant early retirement from the ministry. GP says she would support my application by filling in her bit. But I still probably won't. Does she realise fully, even now, how badly I am affected when not inside her office for ten minutes every so often? Soon DLA will become the dreaded and much-criticised PIP (Personal Independence Payment) for which, it seems, only the semi-comatose, along with the odd corpse will qualify.

Last but not least on my list was the DVD of "Voices from the Shadows", the devastating documentary about paediatric M.E. and the ways in which the medical profession is currently failing people with neurological M.E. I simply passed one of my spare copies over to the doc, with a quick word about what it was and why she might find it interesting. She seemed intrigued and grateful. I can't be sure she will watch it, but I'm really hopeful she will. I'll be able to have a gentle check when I see her again. Maybe it's something more of us could try? Ingredients needed: DVD; GP with potential open mind. Stir. Leave to rise and mature! (Other bona fide M.E. information is available!)

I know, with me as her patient, and others over the years, she has come at least a little way towards greater understanding of M.E. She had a long way to go, let's be honest! In 2005-6, the only option she had, under NICE guidelines, was to bundle me off, as soon as I wasn't permanently bedridden and housebound, to the local CFS/ME "fatigue" clinic in the nearest town for a spot of CBT and GET after 6 months of tests to eliminate all other possibilities.

Today reminded me my own GP's not there yet! Still a way to go. She still chuckled rather dismissively when I mentioned some people had seen improvement with LDN (Low Dose Naltrexone):

"Oh yes! That's not licensed!" she laughed, "But I suppose people will try anything when they're desperate!"

We ARE those people. We ARE desperate. We need help and support and we need it NOW! We need biomedical research NOW! I pray that if she watches "Voices from the Shadows" and just once hears the haunting, heartbreaking sound of Sophia Mirza reasoning and pleading with police and psychologists who have broken down her door in the dead of the night, my GP will be changed forever. Maybe then she'll pass it on to other colleagues. Maybe they too will be changed. Maybe, just maybe, the long road towards the target of awareness of M.E. for all the medical profession and society will be lit up by one or more new lights. One day nearer to care and cure.

Another Voice from the Shadows; Another Candle in the Darkness

 

So proud of my lovely mum yesterday.

I've been too sick to go anywhere but the sofa since last week. That was when I managed to take one of the occasional church services I do voluntarily around the circuit where I was a Methodist minister till my latest major M.E. relapse. Had a wonderful hour, leading worship, kids' time & holy communion with around 100 in the congregation. The stewards and folks who help with PowerPoint, etc were so helpful, bless em all. They carried me in little unseen ways that helped me achieve playing my part as I was called to do long ago. As you can guess, I'd had to rest up and prepare for weeks prior to this. I haven't been up to functioning much since then till the next big energy "ask".

So I didn't get to my local church yesterday, but my mum did. She was staying the weekend to help me with shopping, tidying and even "strip washing" as I wait for my landlords and their contractors to get their act together to mend my boiler so I have hot water again after almost a month! I joke that unlike my last boiler fail, when the landlords/boiler contractors left me without heat for six weeks, this time I'm dreaming of having a shower before Easter! Wheeeeee!

After the service, a lady took my mum aside to tell her how she had read about a young lass in the paper who had been "cured" of chronic fatigue. My mum gave her the full lowdown on the realities of neurological myalgic encephalomyelitis. She explained how CFS has, since 1988, become the floppy expandable umbrella diagnosis for all diseases that entail some degree of fatigue. Mum explained in a straightforward way how many of these "cures" and "treatments" appear to work because they are actually applied to fatigue possibly caused by simpler things with a psychological root, or post viral states that self-correct over time. She really told it like it is. Told it plainly, but with all her usual courtesy and wisdom. She explained about my raising money for biomedical research through ""Invest in M.E." and the "Let's Do it for M.E." campaign. She challenged some of this lady's misconceptions. She even mentioned the heartbreaking video about severe M.E. "Voices from the Shadows" and even had this lady interested in seeing it. Minor result!

Drip by drip. Inch by inch. Hope against hope. We keep chipping away at neurological M.E. awareness and education. I've now bought an extra copy of Voices from the Shadows to give to my GP & practice nurse, who are open to learning, but tied by the system that bows to the anti-wisdom of CBT & GET alone. I may start carrying a spare copy in my handbag whenever I'm well enough to show my face outside, in case someone more influential comes across my path who may be able to spread the light into more dark and ignorant corners!

Today I was so sad to read via a link on the Sheffield M.E. Sufferers/Support for M.E. Group on Facebook about Lois Owen, yet another person to die from M.E.

Lois's tragic but ultimately inspiring story is told  in This is Derbyshire: Tragic tale of woman with chronic fatigue syndrome 'too tired' to eat Tragic because of the attitude of the medical profession to patients with an illness they seem incapable of handling, and unwilling to keep abreast of the most basic up-to-date knowledge of the needs of patients whose every bodily system is affected and wrecked by M.E. Inspiring, because of Lois herself and her compassionate creativity made available to others, and the way her whole attitude gives the lie to outmoded ideas of M.E. as "tiredness" or "malingering."

Lois died of M.E. aged 34, after a life filled with positivity,  talent, enterprise and creativity. She was a university graduate who set up a charity called "Therapeutic Arts" offering free classes in drama, poetry, painting, music and sculpture. She even wrote a book, one of several she was planning, in a time of remission to help others who suffer chronic illness to make the most of what strength they have, as she did. What a legacy left by a young woman whose life was ended, though never defined by M.E., bringing help and hope to others! Her loving family made sure the book was published to reach others who live with M.E. and other chronic illnesses. Her book "Bed Without Boundaries" is available from the 25% M.E. Support Group here.

Her immediate cause of death was a chest infection which her body could no longer fight off after Lois lost a great deal of weight from being too exhausted to eat. Many of us know that feeling only too well. Using all your strength to cook a simple meal, then having no energy left to eat it! All the more so when bedridden, too poorly to rise and do any such tasks. Or that pernicious exhausting toxic nausea that makes eating and appetite such a struggle. Overwhelmingly frustrating and painful to read how at her inquest, her problems seem to have been linked to anorexia.

Lois had, like other PWME such as Sophia Mirza, been statemented as mentally ill in the past. Yet every symptom she had, and the non-treatment by medical professionals who claim they felt "powerless," I and so many others can relate to entirely. The problem is compounded by the fact that since 1988 many illnesses which exhibit "fatigue" as a symptom have been lumped together as "chronic fatigue", whether or not they are also more specifically characterised by the neurological, autoimmune, cardiovascular, autonomic symptoms that are essential to the ICC definition of M.E., the multi-systemic toxic cocktail of disability that has floored us. As I commented in the Sheffield support group today:

"I can also say that almost all Lois's symptoms ring a bell with me. Often, even now, the feeling of debilitating nauseating exhaustion that accompanies my neurological symptoms makes eating a real challenge. If I can prepare something, many times that uses all my strength & there's little or none left for eating. At no stage have I had anorexia but at times I am too weak to eat. At one stage of my illness I put on weight through having to give up long walks and cycling everywhere as I had done previously. At another stage I lost 6 stone and could eat very little. None of this was down to any problem attitudes to food, but the effects of M.E. nausea & weakness in combination with type 1 diabetes where insulin has to balance with carb intake even on worst M.E. days! As for "voices" - when I was in an M.E. crash with glands so swollen & throat so sore I could barely swallow, plus feverish pain all over, neurological hypersensitivities etc I sometimes felt I was almost hallucinating and even listening to music, familiar vocal/instrumental tracks would seem to play slightly out of time with each other. After months of disturbed sleep & pain with no answers, even as an extremely positive person, I woke one morning seriously considering banging my head on the wall to try to block the pain, or throwing myself out of the window. I didn't. But only because I could not imagine even more distress and discomfort, & hadn't the co-ordination or strength to mount the sill."

Mental stress comes only as a result of the neurological damage and AFTER the illness has left our previously vigorous, joyful, busy, adventurous and forward-focused lives and dreams all but shattered.

I ask you: if Lois's doctors felt so "powerless" to treat her with the sensitivity and expertise necessary, why on earth did they not themselves, as caring GPs and "specialists" join the fight to press for biomedical research? Why did they not dig deep to ensure this would never happen to another of their patients in the future? If they refuse to change their mindsets, how long before someone in the same position as Lois's family, or Sophia's, or Lynn Gilderdale's, calls for a charge of "corporate manslaughter" against a medical, political hierarchy that stubbornly refuses to press for biomedical research and instead mutters "all in the mind" for their own vested interests and monetary ends?

But it's Lois's attitude of hope that's inspiring me today, to go on trying to be a cog in the wheel of  progress in M.E. research and awareness, not a stumbling block on the way. We can all do together, bit by bit, what we could never achieve alone. Sometimes even when we can do nothing at all, we find others, like my mum, are doing their bit too, on our behalf, to enlighten those who are still singing from a different hymn sheet!

JOBCENTRE WRAG-TIME a poem

I went to the local Jobcentre

With painkillers, stick and bag

I had to go, fearing sanctions

Cos I've gone and been put in the "WRAG."

It makes me feel poorly on buses

But with hypos I mustn't drive,

So I stumbled in all of a-tremble,

And barely a quarter alive.

It took me all my precious "spoons"

To balance and to breathe,

I had to watch the pavement

As it starts to shift and seethe.

My 80 year old mother came

To help me open doors

Which invariably seem to stick

Defying gravity's laws.

My appointment was half past eleven,

Though I hadn't slept night after night.

My legs felt as wobbly as rubber

I was sickened by motion and light.

But the Jobcentre seemed rather quiet

With everyone there in their place,

No loud noises were blorting to hurt me

Which was abso-bloomin-lutely ace.

A lass who was wearing a label

Which I guess spelled out her name

Started asking me what was my business

And the reason that I came?

I explained I'm in the “WRAG” group

And I had to meet the girl

Who's my “Personal Adviser”

Who I'll call, for rhyme's sake, “Shirl.”

She looked me up, she looked me down,

She showed me to a chair,

Where in pain I tried to balance

Near to others who were there.

Some were reading adverts,

While others filled in forms,

Some jiggled kids in pushchairs

While others stifled yawns.

But everyone seemed friendly,

Efficient, polite and calm,

And as I got my breath back

One young woman touched my arm.

She said my name and greeted me

And helped me cross the carpet,

Pulled out a chair to help me

Cos by now my “spoons” had scarpered!

She reassured me from the off

She wasn't there to press me,

ATOS had done what ATOS do,

Here no one would undress me

Or frown and say “M.E.? What's that?”

You look fit as a fiddle!”

She listened and she understood

(Not influenced by Rod Liddle!)

I didn't wear my dog-collar,

So I was a bit astounded,

She knew the kind of help I'd need,

Advice was wise and grounded.

She tapped on her computer screen

To calculate & compare,

If work from home might pay at all

What hours, what skills to share.

She knew from my work history

I wasn't one for shirking,

She knew that were I well enough

I'd much rather be working.

She totted up the hours

I could work or volunteer,

On top of what I manage now,

If better health were here.

She built on what my skills are

To make helpful suggestions,

She let me pace things as we talked

And answered all my questions

She learned about my brainfog

And saw it one-to-one,

She's the face among the faceless,

I was really glad I'd gone!

I asked if I had to see her

Every month from here on in,

She said it would not be needed,

(My knees must've met my chin!)

I could call her number any time

For any advice at all,

It should be another year or more

Till my next medical call.

She was honest about W.R.B.

And all the uncertain changes,

She well understood her clients' fears

And the future's scary dangers,

So clued up and supportive,

She went out of her way

To fetch me a pack to make a claim

If needed, for DLA.

Since then I've heard two other friends

At different JCPs,

Have also had this kind of help

In different degrees.

Although it took days to recover,

From this trip to the “bowels of hell”,

I consider myself very fortunate

I've a positive tale to tell.

Before you say, “yes but, no but,

ESA's just for a year.”

I must meet that bridge when I come to it,

I'm thankful for now and here.

For now, I was saved an unequal fight

To be put in the group for “support”,

Not terminal ill, not yet a corpse,

I guess I've been put where I ought.

I know the harsh rules of D.W.P.

Won't find me a miracle cure,

With their strict time-limitation,

But the future is seldom sure!

We can only live in the moment,

And fight on for those with no voice,

Play fair even when we've been diddled,

Or grow bitter and bolshy by choice.

Back at home I was soon reminded,

How true were the things we'd discussed,

How far I am from “fit for work”

The adrenalin soon repercussed.

I slept till the daylight was dying,

As body and brain disengages

With the payback from that short journey

I just couldn't function for ages.

But at least one Jobcentre employee,

Understands disability more,

Has more now of M.E. awareness,

It won't stop me fighting injustice,

With others whom ATOS have harmed,

But I went to the WRAG, and I learned some,

As with all things, forewarned is forearmed.

"Spooney!" said the clerk...what the Dickens? M.E. Brain Fog strikes again!

Some days I can't concentrate to read. You've probably found the same problem? I think it's a very common experience for people with M.E.

One day on Twitter, I couldn't work out, after looking at it several times, whether what I was seeing was my own Twitter name or somebody else's with very similar letters. With M.E.-related cognitive dysfunction and brain fog, inputted info sometimes gets mangled on the way in - and out!

The times I have to check and recheck what I write would have to be seen to be believed by anybody not sharing our enforced 'Spoonie'-dom! This often brings laughter. On really bad days, it brings tears of sheer frustration through exhaustion! Even after endless checks, some real "howler" mistakes slip through. As a grammar Nazi by natural inclination, few things are more galling to me than seeing errors I've made in print just through M.E., when before, I could have spotted them a mile off! The silver lining here is the empathy this frustration can give us for friends with dyslexia who deal heroically with word blindness all day, every day. Not just when brain fog descends.

Reading and writing are some of my principle joys in life. So naturally, I notice the changes to perception and information processing M.E. has brought.

Over Christmas, I was rereading Charles Dickens' "Great Expectations" on Kindle. I love Kindle. Light as a feather to lift and hold. Adjustable text size for aching eyes. Adjustable brightness for light-sensitivity. No cumbersome pages springing back or weighty tomes hurting your fragile wrists. Much as I love "real" books, with M.E. they present untold problems, though I hate to admit it as a book lover.

It shows how much M.E. changes your life when your mind immediately reads a capital "ME" as "M.E." in most contexts. I was getting tired and struggling. I was rereading a sentence, a paragraph, a short phrase time and again just to take in the meaning and follow the plot!

I was reading Chapter 20, where the hero Pip travels to London to be schooled to become a "gentleman" and fulfil the eponymous 'great expectations' predicted for him. In the lawyer Jaggers' office, Pip witnesses a heated exchange between Jaggers and a man called Mike.

I read the line:

"You infernal scoundrel, how dare you tell ME that?"

Of course, the capital letters "ME" at first jumped out at me as a reference to our illness! This wasn't helped when over the (virtual) page, came the line:

"Spooney!" said the clerk, in a low voice, giving him a stir with his elbow.

I don't recall associating either the capital letters ME or the word 'spooney' with a devastating neurological disease last time I enjoyed a Dickens novel! Really need to get out more, don't I? If only, eh?

Know when enough's enough!

I'm so sorry I'm not really up to blogging much on this today but I really want to share this excellent M.E. article from Margaret Williams which you can read here:

Margaret Williams's article "Professor Wessely over a Barrel?"

The article says it all, really.


Sorry I'm struggling to process info today. Last night I lost two hours of my life from my memory when I had the worst hypo I have had in 27 years of Type 1 Diabetes. Believe me, I've had many many hypos over the years, with little or no warning symptoms from the start.

I had just eaten part of a substantial amount of carbs in an Indian meal, with some poppadom, naan bread, onion bhaji and prawn korma with my mum who is with me as usual for the weekend. Normally, a meal like that would mean high blood sugars, without extra insulin. My sugar was 5.8 before tea. Perfect. I had the normal amount of Novorapid for the carbs I could count, but aware of the fat content which might alter the absorbtion rate, I was prepared to test my blood glucose shortly after tea to see if I needed to adjust anything to maintain good control. Usual stuff.

After tea, I felt exhausted. Singing a little meant I had to close my eyes to concentrate to remember the words and co-ordinate. My chest and throat soon made me stop. Usual M.E. frustrations. A little later, very unsteady and drained/pained, but putting it  down to M.E., I remember beginning to show my Mum a favourite music video on my laptop. I don't remember it ending.

I do recall the last thing I wanted to say, but couldn't quite manage without giggling (typical of me, hypo or not!) about something one of the band was wearing. I leaned against my mum several times, helpless with laughter, to say the joke in her ear. She ended up letting me lay down on the settee while she moved to a nearby chair. She left the room to go upstairs. I apparently had got up (I don't remember) meanwhile, and passed her crawling up the stairs on my way to lie on the bed. Not unusual with M.E. I'd need to rest after various little things achieved in the day anyway, and to digest even that modest meal.

Of the next two hours I have hardly any recall. This was about 8pm. I spoke to reassure my Mum apparently, but don't remember any of this. The next two hours were spent in locked agony for me. Sweating, in pain, disorientated. Everything like a weird waking dream. Things in the room unfamiliar and nightmarish.

My Mum let me rest (neither of us had any reason to suspect a hypo straight after a carb heavy meal like that which I've eaten before with rather the opposite effect of high blood sugars!) until 9pm. When she came to check on me, I was sitting awkwardly on the edge of the bed, with a nail file in my hand and my left contact lens on the end of my middle finger. How I took it out without losing it is one of the mysteries and things to be thankful for about this episode!

My Mum could get no sense out of me (no change there then, some would say!) but she could guess by then from my floppy incoherence that I must be hypo. As I was conscious, she attempted to get some nearby Jelly Babies (I always keep boxes of them close at hand wherever I am) into me. I apparently knocked the unfortunate Jelly Baby out of her hand and tried to punch her hand away.

Many diabetics will recognise this resistance to taking sugar when the brain is shutting down onto automatic pilot. Believe us, it's not a "silly" choice or stubbornness, just an inevitable side-effect of low blood sugar. We have no choice. I don't even remember. I kept lurching the contact lens at her, unable to form words, but groaning out quite aggressively. (One of the few times you'll see any fighting talk from me towards others, no doubt!) Lucky my Mum is so wise and understanding!

She scooped my legs back into bed, making me chew several of the soft, easily digested sweets that have so often rescued me. I became amenable enough though still remember nothing but my own inner nightmare vision of all this! She prized the file out of my hand (I have no idea why I needed it, at all!) and managed to get my lens safely into its case.

When she returned at ten, I was slowly coming back to reality. I had begun to make sense of the shapes in the bedroom, and the slow realisation that this was real, not a feverish dream. I pulled at my soaked hair and realised it was indeed attached to my head. But why was my Blood Glucose Tester upstairs when I had left it downstairs, surely? Why was my contact lens case on the bedside chair and why was I all but blind in one eye?

I had no idea what day it was, or what time.

When my mum came in, she explained, and helped me ascertain which lens was still in, so I could take it safely out and put my glasses on so I could see again. I tested my blood and it was still 2.0, after all the sugar, but I was coming back from the brink. I can register a blood sugar of 1.9 with no obvious symptoms at other times, contrary to all the official line on warning signs. I wonder if one day, what I once read about M.E. contributing to unexplained sudden hypoglycaemic attacks will finally make sense of all this?

I am crashed today, but my sugars are now at last down from double figures, where they soared due to much needed sugary compensation. You'll not question again why I choose not to drive!

My Mum has helped me to put back together my fragmentary, nightmarish memories of those lost two hours, and as usual, we can laugh about it now. But this one goes down in my diabetic history as a biggy. Still never bothered a paramedic, though. I hope I never will!

Dr Sarah Myhill - All Sanctions Removed! Woop! Woop!

Dr Sarah Myhill: sense and justice prevail as she is no longer wrongly labelled a "risk to patients" by the GMC, a body which apparently IS a risk to us in its own right!

Breaking news today is that Dr Sarah Myhill, the Powys private GP and specialist in the treatment of M.E./CFS, has been cleared to continue her tireless, expert and life-saving work with M.E. patients.

In a world where M.E. is so radically misunderstood and perversely misdiagnosed, mistreated and mismanaged, the reassuring expertise and good work of Dr Myhill has been a lifeline to so many who live with this obnoxious, crushing and life-sapping disease.

After her mystifyingly unfair suspension from practising medicine as if she were some dangerous quack, the GMC in the UK has completely reinstated her. The content of her website and advice, though given only as advice to desperate M.E sufferers who often have nowhere else to turn for real practical help with the condition, had been the ammunition the GMC used to allege misconduct. 

They have had to turn around completely and back down.

The word "repent" literally means "turn round." Perhaps now the powers that be have been shown to be in error and "repented" of their ways, it will be yet another turning point on the long road towards M.E. awareness, treatment and ultimately, a cure.

Bless you, Dr Myhill. Long may your insight, skill and wisdom reach out to heal and help those who have always believed in your innocence, and recognised your key role in the future of tackling this illness.

Dr Myhill's excellent website can be reached with a click of the link below:


http://www.drmyhill.co.uk/

Up awareness, Mr Cameron? Up yours!

While this is primarily a space for those with M.E., for many of us, there are comorbid conditions that affect us at the same time. For me this is Type 1 diabetes. The diabetes, diagnosed when I was 23, masked the M.E. for many years. I blamed my pancreas for all the symptoms I was experiencing until the day I finally collapsed unable to "push on through" for another second after so many years of struggling to keep working and active as my health deteriorated.

Even now, my Diabetes specialists know next to nothing about M.E. and vice versa. When an M.E. specialist insight gets a look in at all, that is.

So this Diabetes Week, I need to post about this.


Diabetes in UK Parliament today


Diabetes has been discussed by the Government today. That surely can't be a bad thing?


But reading the vacuous, uninformed comments of the Prime Minister in response to Diabetes UK's campaign for 2011 Diabetes Week, themed 'Let's talk Diabetes,' leaves me wondering.


We see more and more Diabetes Specialist Nurses (DSN) disappearing with the current funding crisis in the NHS. Along with specialised diabetes education and resource centres that were helping people to tackle their condition in the most productive, enlightened ways. 

Without these, we may well be whistling in the dark. Or waiting for the day when our monitoring equipment, so essential in keeping Type 2s in control of their condition, and all the more so for Type 1s to stay clear of coma, complications and death, are deemed a luxury not a lifesaver.

Adrian Sanders, MP for Torbay, asked Mr Cameron if he would support the campaign to get people talking about this illness, still so misunderstood even 90 or so years after Banting and Best pioneered insulin therapy in the 1920s.

The response was telling. And chilling, considering it's 2011.


The Prime Minister was quick to appear in favour of the campaign, saying:


"I think we have to find a way of encouraging more people to come forward and say there’s nothing abnormal or wrong about this." 

Within seconds I and many thousands of others were getting the sinking feeling that Mr Cameron had less than no idea that Type 1 and Type 2 diabetes are two completely separate illnesses, one auto-immune and not preventable at present, the other more directly linked to lifestyle.

He plunged in to show that his eye is only on the cost, and much more disappointingly, he is solely fixated on Type 2 issues. Who, Mr Cameron, has ever felt ashamed to talk about their Type 1 Diabetes which is in no way a matter of "lifestyle choice" but genetics? Who exactly do you think you're talking about?

On he ploughed, tilting his head as always in the direction the wind might be blowing at any given moment without any real depth of insight, reinforcing the stereotypes and sowing the old misinformation into the ears of the media and the waiting world:


'We just need to help people manage their diabetes, particularly because we want to see them have control over their healthcare and spend less time in hospitals if at all possible. 
So I fully support the campaign and I think we’ve got to look at the long-term costs of people getting diabetes and recognise there’s a big public health agenda, particularly about exercise and other things, that we need to get a hold of.'

I spend no time in hospitals as a direct result of my Type 1 Diabetes, Mr Cameron. I am responsible, like so many others, controlled as well as possible (considering M.E. which regularly hampers all attempts to maintain stable blood sugars). When Type 1s are hospitalised, it is more usually insulin-related, complication fuelled, or sitting in outpatient queues for hours at a time through no fault of our own. NOT as you seem to imply, as a result of sitting on our rears munching doughnuts, dodging salads and avoiding regular exercise.


Step One might be to inform yourself and your ministers of the real issues here: Prioritisation of funding, reflecting the complexities of the illnesses you clump together as diabetes, in much the same cavalier fashion M.E. is shoved under the vague, belittling umbrella of "chronic fatique and all that tiredness nonsense malarkey" (don't get me started, passive aggressive rant alert!)

Diabetes Week UK 2011 is 12th-18th June.

Further information and support available from:

Diabetes UK

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!

Promises, promises...

The ME/CFS Worldwide Patient Alliance (MCWPA) has just posted this cartoon to ask:

Mr Obama - do you remember what you promised us?

Sadly, apart from the odd mutter in parliament when pressed about ME/CFS issues, the UK Coalition Government has so far not even bothered to make any such promise to look into the issue. No promise to focus funding for decades-overdue research into the devastating illness tht costs so many citizens worldwide their jobs, their health and their whole quality of life.

Please don't make empty promises.


We need you to deliver. Now.

ME/CFS AWARENESS DAY

This Thursday, May 12th marks international ME/CFS Awareness Day, part of May's Awareness Month for those affected by Myalgic Encephalomyelitis and Chronic Fatigue Syndrome.


The world in general, as well as certain sections of the medical profession would rather turn their faces away.


Those with these crippling neurological illnesses can't turn away, much as they long to.

It's time for the world to wake up and wise up.


Please, if you know anybody who suffers from these conditions, try to give them the support, compassion and understanding they need to stop this illness (whatever label it's been given in your country) being made even less bearable because of the attitude, disbelief and ignorance of others.


Are you aware of M.E.?


It can affect anybody, man, woman or child, rich or poor.

It can  change active, vibrant, productive lives forever.


It can cripple. 


It can kill, and has killed.


It could be you next, as there is nothing  you can do to prevent it, fight it or avoid it.


But that can, and must change.


Research into the physical cause of M.E. is essential, so one day the cure may be grasped.


Understanding and research is essential, so that damaging treatments like GET or  CBT administered as if this physical sickness were some psychological aberration or self-inflicted "syndrome," can be replaced with something more than vague notions of hit-and-miss palliative approaches. A real cure for a real disease is all we ask.

Think about it. Does CBT cure cancer, AIDS or tuberculosis? NO. It can help. But it isn't all that's on offer. So how would it get to the root of an equally organic disease like M.E. affecting every system of the human body, nerves, immune system, autonomic system, muscles and cognitive function?

Some charities are already fighting for funding and rigorous research to bring ME/CFS out of the closet and into the enlightened realm of modern medicine, where it should always have been.

In the USA there's the Whittemore Peterson Institute working in research into neuro-immune disease:


Whittemore Peterson Institute website


In the UK, there is, among others, MERUK - ME Research UK


ME Research UK

and Invest in ME:


Invest in ME


and the ME Association:


ME Association


An awareness leaflet you can download to help yourself and others begin to understand this illness can be found here:

ME Awareness Leaflet: What is ME? 

One day you or a loved one may no longer have the luxury of being able to see this illness ridiculed, misrepresented or ignored. It may have stolen overnight all that you take for granted now.


Now is the time to make a difference and give ME patients a glimmer of hope for the future and a reason right now to struggle through another agonising, draining moment, hour, day.

Please don't turn away.

Formal complaint to Lancet about the PACE trials; a scandal unmasked

Quote "It is important to make very clear that ME/CFS is not a somatoform disorder but a serious multi-system organic disease." Unquote.


Quote: "The international evidence-base is that ME/CFS is a serious, inflammatory multi-system disorder with well-documented abnormalities in the central nervous system, the autonomic nervous system, the cardiovascular, respiratory, neuroendocrine, immune and gastro-intestinal systems, with convincing evidence of muscle pathology, defects in gene expression, specific HLA antigen expression, and with irrefutable evidence of chronic inflammation." Unquote. 

How long can the perpetrators of the PACE (Pacing, graded Activity, Cognitive Behavioral Therapy; a randomised Evaluation) trials deliberately surpress the evident truths in the above statements? How long will those who engineered and funded these skewed, flawed and cynically targeted trials, including the DWP and psychiatric lobby, get away with this international scandal devastating lives?


Will some influential stuffed shirt be telling me next that my Type 1 Diabetes is "all in the mind"? Can I hear a cry from the nightmare future going: "Drop the syringe, you pathetic slacker, and start producing insulin like normal upright citizens with real backbone do?"

After all these years, we wonder why folks still pat us metaphorically on the head and say "Hope you're feeling well."

Catch up, world! Our lives are slowly running out while you fail to get your heads round the all too real M.E. we have to live with every single day!

Professor Malcolm Hooper's complaint to the Lancet reminds how the PACE trials are actually designed to withdraw support and help from patients with M.E./CFS in order to deny the illness and so remove benefits and credibilty from the genuinely ill.

A long read, but one that makes plain all that is rotten in the worlds of medicine, healthcare and research, welfare reform and spin.


Formal complaint to Lancet about the PACE trial paper

In memory of Lynn Gilderdale

Today's blogpost is in memory of Lynn Gilderdale, tragically stricken down with M.E. at a young age and trapped by it in one of its severest forms until the age of 31, and for her loving mum Kay who tells us their story. It's also for everyone who knows someone, or is someone with M.E.

If you have ever said to someone with M.E. or CFS or another of the many invisible illnesses people struggle with every day,

"But you don't look sick/ill...." or "It's just mind over matter. I get tired too...."

because you thought they should be able to "snap out of it" by "positive thinking" or because you felt helpless at them "still" being ill when it became uncomfortable for you to deal with, and if you would have been shocked and offended by them not replying:

"Thank you. Glad you think so," or maybe "Well, I'm all the better for seeing you!" (as I very often say!), but rather:


"No, I don't look sick. You don't look stupid either..."


then maybe you'd better not read or listen to the links below. Or perhaps, all the more, you really should.

Please don't read further if you'd prefer to think of M.E./CFS as some joke or cushy "lifestyle choice". Or this will shock you and possibly upset you. It should. There are some difficult issues here, whatever you believe or don't believe about the sanctity of life and freedoms of choice. But some of us can't just look the other way on this one. Because we know at first hand some of the whirlwind of havoc M.E. can wreak in a vibrant, positive life.

Maybe you will find the wisdom, grace and compassion to try and understand more too. Maybe it will change the day of someone you know with this thankless monster of a disease. Maybe it will save somebody's life. Thank you.


Kay talks about her daughter Lynn Gilderdale's tragic struggle with M.E. (Kay's article in today's copy of the Daily Mail)

Kay interviewed on BBC Radio 4's Woman's Hour today

CoQ10-ergy! Still hoping!

Well, it's been over a week now that I've been trying the CoQ10 and stopped the statins. Time for another quick catch-up!

The pitch has been queered a bit this week as I developed a cold which forced up my blood sugars and left me achey and feverish.

However, the cold has dried up very quickly (by my own horribly low standards of recovery speed!). My throat is  quite sore, still, which is either from the cold, or maybe the typical M.E.-type of razor-bladey throat.

My Mum was over at the weekend as usual to help with domestic stuff. The weather was so beautiful last weekend here in northern England. Warm temperatures up in the 60s, sunshine getting everyone out in the gardens. Mum,  bless her, gave my back lawn its first taste of the lawnmower this season, while I pottered, sitting down on a chair most of the time, to do a spot of pruning. 

I managed well enough, with frequent rests and naps to keep me going, but considering I had a virus this week too, I'm really pleased to have achieved as much as we did.

I've had plenty of "payback" from that activity since then, in the first three days of this week. (The sun's taken its hat back off and the temperature has plummeted!) But on the whole, since stopping the statins and taking the CoQ10, my head has felt "clearer" and I've been able to wake earlier and felt more alert, I think. 

My current dose is about 100mg CoQ10 a day, taken in the morning. This means taking 10 capsules of 10mg, from a bottle of just 100! As you can guess, this is rapidly diminishing the stock of pills. But I have some more on order, the cheapest I could find online from a company doing a BOGOF (buy one get one free) deal. The new tabs will be a higher dose of 100mg each, and I'm getting 30 capsules with 30 extra free for £14.99 from a company called "Simply Supplements" at 

www.simplysupplements.net

I did some comparison of the prices per mg of more than a dozen brands and this was the cheapest I found online. However, after clicking send, I realised I hadn't compared the unit price of the Holland and Barrett original purchase from a branch in town. This actually proved the cheapest (about 10p per mg compared to 24p per mg). One online pharmacy was actually charging 99p per mg, while most seemed to be about the 50p mark. This is frankly unaffordable longterm, but if I am convinced of their good effects, as I said before, I can just keep them in reserve for days of particular energy need.

The original Enada Nadh has quickly run out, and as it has a very similar function to the related coenzyme, I am persisting with the readily available  CoQ10 alone. Mainly because it is well documented in the M.E. community and also among the statin takers of the world, of whose number I'm a member on both counts!

I've slept quite well, most nights, and the main difference is a clearer (if not totally clear!) head. I still struggle for words and co-ordination when I'm getting tired etc, but onward and upward! I don't think I'm as itchy as I was prior to stopping the Simvastatin. A patch on my left shoulder blade has calmed down a little.

Sadly, the online delivery from Simply Supplements was promised for the following day if ordered before 6.  I ordered on Sunday evening and even allowing for the weekend etc, it's now Wednesday! Still, I'm not quite out of the original stock yet, so if they come soon, I'll be able to go seamlessly onto the 100mg capsules by the end of the week, in the build up to Easter with its extra energy challenges!

As ever, watch this space!

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!

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.