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!
Showing posts with label virus. Show all posts
Showing posts with label virus. Show all posts
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.
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! :)
Thursday, 10 March 2011
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!
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!
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