Just read an interesting post on another excellent blog here:
niceguidelines.blog
There is a new article which claims that 4.5% of those diagnosed with M.E./CFS have developed the disease after receiving a blood transfusion.
This adds to the debate surrounding the blood ban imposed on us in the past year in the UK.
Those of us officially diagnosed with M.E. can no longer give blood. Now this new study indicates that whatever organism/virus causes or triggers M.E. symptoms, may have its origins in the blood.
This doesn't take us much further down the route to a cure or treatment, sadly. 4.5% hardly sounds like a significant proportion.
I was one of those who have had many potential "trigger" events along the way i.e. shingles (herpes zoster virus), giardiasis, as well as several years of being severely crashed after the annual flu jab recommended for me as a Type 1 diabetic. The truth is out there. Somewhere. Medical science will one day hold the answers.
A little crashed at the mo after cutting a couple of twigs in the garden. The bushes have infinitely more energy than my immuno-compromised little body. Even with all my stubborn fightback impulses that refuse to be infinitely kept under by this darned disease!
Tomorrow is diabetic clinic. The moment of truth when I discover if I'm going to be taken to task for discontinuing my statins. Will my cholesterol be raised beyond reason without them? One diabetes specialist nurse and even the last diabetes consultant I saw 6 months ago suggested I try to come off them to see whether my M.E. muscle/nerve agonies and weakness improved without the statins notorious influence. Let's see which way the old swings and roundabouts go this time. Watch this shaky space!
Tuesday, 5 July 2011
Tuesday, 21 June 2011
Hot off the press - the trail goes cold yet again?
Daily Mail article: Doctors doubt virus is the root cause of M.E.
Interesting article in a tabloid not always known for its accuracy.
We shall see. XMRV viral link has always been controversial.
At least the media and, more importantly, doctors are now focusing on M.E. in a serious way, which will raise awareness and hopefully move us a step further towards effective treatments and the prospect of a future cure. If medical researchers are motivated to pursue this process of elimination to a positive conclusion, this might still turn out to be good news.
As things stand, however, it is hard to get the celebratory bunting and champagne out, even if we had the energy or the co-ordination, balance and strength to do it!
You don't need to tell us why, any more.
You just need to tell us M.E. will soon be a thing of the past.
Frustratingly, that just seems further away than ever, if this article is to be believed.
Interesting article in a tabloid not always known for its accuracy.
We shall see. XMRV viral link has always been controversial.
At least the media and, more importantly, doctors are now focusing on M.E. in a serious way, which will raise awareness and hopefully move us a step further towards effective treatments and the prospect of a future cure. If medical researchers are motivated to pursue this process of elimination to a positive conclusion, this might still turn out to be good news.
As things stand, however, it is hard to get the celebratory bunting and champagne out, even if we had the energy or the co-ordination, balance and strength to do it!
You don't need to tell us why, any more.
You just need to tell us M.E. will soon be a thing of the past.
Frustratingly, that just seems further away than ever, if this article is to be believed.
Wednesday, 15 June 2011
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
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
Friday, 27 May 2011
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!
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!
Monday, 23 May 2011
Miracle - a GP who understands M.E.!
Haven't posted for a couple of weeks as on May 8th I started to feel "extra" symptoms I guessed were above and beyond M.E.'s daily challenges. Mum had had a streaming cold for about three weeks at that point. I thought I might have escaped. Wrong!
By Tuesday my throat was getting a little sore (see entry about Strepsils on the 9th, when I was still well enough to joke about it!) and my chest tight. Blood sugars were climbing into double figures without a lick of food. I was sweaty hot (too much information!), dithering cold and everything in between in the space of an hour.
Just a cold. Just a throat infection. Just a chest infection. Just a virus.
Greedy as ever, though, my immune system turned up its toes and hunkered down for a sit in!
I struggled on, getting weaker, more feverish and chilled, sicker, in pain, less appetite. I was so determined, as ever, to push through and take part in speaking at a local service, as planned.
By the weekend I could hardly swallow for the pain. A bit like swallowing razor blades wrapped in barbed wire. Not that I've tried it! A dry, itchy cough was developing too.
Frustratingly, I had no option but to cancel taking part in the Junior Church's celebration that second weekend. I had promised to lead a full service plus communion the following weekend (yesterday), and a circuit service address this Thursday. I've had to pull out of them all.
My voice comes and goes at the moment. That often happens just with the M.E. on its own. With a virus I had no chance. I was getting almost delirious through the night and last Monday my Mum decided on going to ask advice at my local surgery. I was so sick I actually let her, for a change!
A young GP in the practice (not mine) said she would come to check me out, as it was on her way home.
She confirmed what I knew well already. Severe throat/chest virus. There's a lot of it around. She checked all the usual Diabetes stuff - was I continuing to inject even though I could hardly eat? Yes - 26 years of experience there. D.A.F.N.E. sick day rules and all that. Yes - check. I told her I was upping my insulin etc to bring down my sugars (fasting sugar regularly in the 20s at that point, just through the fever/virus doing its bit) and doing so as successfully as possible.
Then came that miracle! (Better miracle than the recent latest "Rapture" nonsense, too!) The GP understood all about how M.E. would be affecting me at all times, not least when a virus gets a hold. She didn't question whether or not it was "all in the mind". She didn't need a crash course in what medical science is gradually uncovering. She's in her 20s and actually on the ball!
She left, saying that considering the concurrent conditions of Type 1 Diabetes plus M.E., I could be looking at at least three weeks before seeing much improvement. So I can do what my body so needs me to do and rest to let it regenerate itself slowly as only it can do.
This virus has already made my throat as impossbly sore as I remember it 11 years ago after my first bout of shingles should have warned me my body was struggling. Back then I had no idea that my many problems were part of M.E. (not just diabetes). Back then, the severity of the throat pain was inexplicable by my then-GP in Southampton. It would be another 6 years before M.E. was fully confirmed through the local M.E. clinic and first through many tests and a session at the Immunology and Tropical Diseases Unit.
The sensation of lying on a burning mat has returned to haunt me on a regular basis as my muscles twitch with enervation, the worst it's been for quite a while. Disconcerting, as you can imagine. I don't want to slip back this time, into al major relapse.
We all know, with M.E., the next crash is always potentially just round the corner. Overworking muscles. Overworking the brain. Doing two things at once. That random virus from a cold or flu or anything at all. Ostrich head in sand and eyes on the clouds or not.
The young GP was up to speed and so reliable. With a virus, she knew antibiotics are ineffective. That's more than several people with (supposed) nursing training had advised before her visit. Thank goodness at least some younger folks in the N.H.S. have some quality basic training! That's so often NOT been my honest experience in the past, particularly with well-meaning overworked souls trained years ago. She did say that with the underlying conditions, if I wasn't improved at all after a month, I might need some blood tests (my diabetic yearly bloods are due anyway) to make sure I'm rallying.
My faith in humanity restored, I'm on my way to recovery. At least to the state of health (such as it was) I had before this virus!
Yippee-dee! Might still feel like death warmed up, but my Spirit's back to soaring with hope that centimetre by centimetre, M.E. Awareness is slowly, slowly inching forward! :)
By Tuesday my throat was getting a little sore (see entry about Strepsils on the 9th, when I was still well enough to joke about it!) and my chest tight. Blood sugars were climbing into double figures without a lick of food. I was sweaty hot (too much information!), dithering cold and everything in between in the space of an hour.
Just a cold. Just a throat infection. Just a chest infection. Just a virus.
Greedy as ever, though, my immune system turned up its toes and hunkered down for a sit in!
I struggled on, getting weaker, more feverish and chilled, sicker, in pain, less appetite. I was so determined, as ever, to push through and take part in speaking at a local service, as planned.
By the weekend I could hardly swallow for the pain. A bit like swallowing razor blades wrapped in barbed wire. Not that I've tried it! A dry, itchy cough was developing too.
Frustratingly, I had no option but to cancel taking part in the Junior Church's celebration that second weekend. I had promised to lead a full service plus communion the following weekend (yesterday), and a circuit service address this Thursday. I've had to pull out of them all.
My voice comes and goes at the moment. That often happens just with the M.E. on its own. With a virus I had no chance. I was getting almost delirious through the night and last Monday my Mum decided on going to ask advice at my local surgery. I was so sick I actually let her, for a change!
A young GP in the practice (not mine) said she would come to check me out, as it was on her way home.
She confirmed what I knew well already. Severe throat/chest virus. There's a lot of it around. She checked all the usual Diabetes stuff - was I continuing to inject even though I could hardly eat? Yes - 26 years of experience there. D.A.F.N.E. sick day rules and all that. Yes - check. I told her I was upping my insulin etc to bring down my sugars (fasting sugar regularly in the 20s at that point, just through the fever/virus doing its bit) and doing so as successfully as possible.
Then came that miracle! (Better miracle than the recent latest "Rapture" nonsense, too!) The GP understood all about how M.E. would be affecting me at all times, not least when a virus gets a hold. She didn't question whether or not it was "all in the mind". She didn't need a crash course in what medical science is gradually uncovering. She's in her 20s and actually on the ball!
She left, saying that considering the concurrent conditions of Type 1 Diabetes plus M.E., I could be looking at at least three weeks before seeing much improvement. So I can do what my body so needs me to do and rest to let it regenerate itself slowly as only it can do.
This virus has already made my throat as impossbly sore as I remember it 11 years ago after my first bout of shingles should have warned me my body was struggling. Back then I had no idea that my many problems were part of M.E. (not just diabetes). Back then, the severity of the throat pain was inexplicable by my then-GP in Southampton. It would be another 6 years before M.E. was fully confirmed through the local M.E. clinic and first through many tests and a session at the Immunology and Tropical Diseases Unit.
The sensation of lying on a burning mat has returned to haunt me on a regular basis as my muscles twitch with enervation, the worst it's been for quite a while. Disconcerting, as you can imagine. I don't want to slip back this time, into al major relapse.
We all know, with M.E., the next crash is always potentially just round the corner. Overworking muscles. Overworking the brain. Doing two things at once. That random virus from a cold or flu or anything at all. Ostrich head in sand and eyes on the clouds or not.
The young GP was up to speed and so reliable. With a virus, she knew antibiotics are ineffective. That's more than several people with (supposed) nursing training had advised before her visit. Thank goodness at least some younger folks in the N.H.S. have some quality basic training! That's so often NOT been my honest experience in the past, particularly with well-meaning overworked souls trained years ago. She did say that with the underlying conditions, if I wasn't improved at all after a month, I might need some blood tests (my diabetic yearly bloods are due anyway) to make sure I'm rallying.
My faith in humanity restored, I'm on my way to recovery. At least to the state of health (such as it was) I had before this virus!
Yippee-dee! Might still feel like death warmed up, but my Spirit's back to soaring with hope that centimetre by centimetre, M.E. Awareness is slowly, slowly inching forward! :)
Monday, 9 May 2011
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.
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.
Sunday, 8 May 2011
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.
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