Just over 20 years ago, I went down with acute onset ME. I had classic ME symptoms though there was not a lot of material available at that time and little awareness within the medical profession. However I was lucky and made fairly steady progress, being able to do part-time work after about four months and largely recovered by the 2 year point. Every couple of years perhaps since then, a virus or some other stress factor has triggered an “echo” which flattens me for a few weeks, and takes a few months to fully recover, but other than that I have been fit and healthy. Six months ago I had a serious onset. The initial symptoms were ME like, though I didn't have the continuous headaches and had little evidence of irritable bowels. I was still wiped out energy wise, brain fog, poor coordination and balance, my temperature control and sensitivity was all over the place, my skin sensitive to touch and I had months of crippling and painful muscle spasm. Over the next four months or so, I slowly recovered and I am now largely symptom free as long as I bed-rest, but the slightest over-exertion can bring back the full symptoms for perhaps a week or so.
I would classify my first illness as ME and my second as CFS. Certainly the Peckerman / MyHill / Teitelbaum descriptions of mitochondrial dysfunction seem to be extremely accurate in my case, and the supplement regime that they recommend is proving to be effective.
So what's my point? I have subscribed to your blog for the last six months and read it with some sympathy. I believe that ME and CFS are useful descriptions of separate but interrelated syndromes. When one has a systemic failure of one of the bodies infrastructure systems, such is its nervous system or the ability of cells to metabolise and produce useful energy, the consequences for the sufferer can be just as chronic as systemic failure of an organ. Many stress factors which trigger such failure (pathogen / para site attack, chemical poisoning, vitamin / mineral / EFS deficiency, immune system suppression, …) are common. Our problem is that medical tools and training largely do not acknowledge the concept of such a systemic failure of an infrastructure system. It is far easier to recourse to faith in “malingering” rather than apply scientific method to understand the systemic failure.
I accept that you are a true ME sufferer, but you do the causes of ME and CFS absolutely no service by adopting the position that CFS does not exist and should be banned has a valid diagnosis. You adopt a position little better than the proponents of CBT. You should know better. Shame on you.
I read this comment with interest. As someone who has been very severely affected by m.e.(or some as yet other undiagnosed neurological condition) for ten years and whose health is in frighteningly, rapid decline, I too was delighted to find both dr.speedy's blog and also the simon wessely i know it all - blog, and have been reading both with interest and enjoyment since they started.
As a fellow blog reader i have to disagree that dr.speedy gives the impression that he does not believe in cfs. what is a breath of fresh air and a joy with this blog is the very fact that dr.speedy, as both a doctor and a patient, differentiates with great clarity,wit and humour, between the all too common diagnosis of cfs - which can cover a range of conditions, of which chronic fatigue is a symptom and m.e. which is a neurological illness with a distinct aetiology.
those of us who get lumbered with the all encompassing diagnosis of cfs are generally left to rot and treated as hypochondriacs or malingerers by the health system and little attempt is made to find a true diagnosis.
i personally know of people who have been diagnosed with cfs who have been variously found, when properly tested after many years of ill health to have lyme disease,thyroid conditions, and myesthenia gravis.
if the distinction between cfs and m.e was recognised as such at the beginning and they had been properly investigated - many could have regained their health much earlier - for some the damage has already been done.
i also know of people who have died as a result as a result of not being investigated soon enough - having been labelled with an all encompassing diagnosis of cfs - through organ failure from m.e. or another condition not investigated because they were fobbed off with just having cfs.
it's imperative that doctors are educated as to the distinction between m.e. a neurological condition - thoroughly researched and documented as such, and noted as such in the WHO classification, and cfs.
- for some of us - our lives literally depend on it..and the race is on before it is too late.
i think dr.speedy does us all and the cause great service and with great wit and style. if doctors would take the reality of m.e. seriously - all would benefit - those with m.e. and those with a condition causing chronic fatigue as a symptom.
to say he adopts a position little better than the proponents of cbt - makes my hackles rise - and some! it takes energy, courage and integrity to stick your neck above the parapet and speak the truth and satirise the idiots who are making our lives a living hell.
hope and humour are great aids for getting you through most things - this blog provides both... and believe me with this illness you need them...but even more important- it validates my reality and the truth.....and strenghtens the glimmer of hope we hold on to as we fight for change. feel shame? - i don't think so - feel pride!
long may this blog continue in the same vein. it's a gem.
4 comments:
Just over 20 years ago, I went down with acute onset ME. I had classic ME symptoms though there was not a lot of material available at that time and little awareness within the medical profession. However I was lucky and made fairly steady progress, being able to do part-time work after about four months and largely recovered by the 2 year point. Every couple of years perhaps since then, a virus or some other stress factor has triggered an “echo” which flattens me for a few weeks, and takes a few months to fully recover, but other than that I have been fit and healthy. Six months ago I had a serious onset. The initial symptoms were ME like, though I didn't have the continuous headaches and had little evidence of irritable bowels. I was still wiped out energy wise, brain fog, poor coordination and balance, my temperature control and sensitivity was all over the place, my skin sensitive to touch and I had months of crippling and painful muscle spasm. Over the next four months or so, I slowly recovered and I am now largely symptom free as long as I bed-rest, but the slightest over-exertion can bring back the full symptoms for perhaps a week or so.
I would classify my first illness as ME and my second as CFS. Certainly the Peckerman / MyHill / Teitelbaum descriptions of mitochondrial dysfunction seem to be extremely accurate in my case, and the supplement regime that they recommend is proving to be effective.
So what's my point? I have subscribed to your blog for the last six months and read it with some sympathy. I believe that ME and CFS are useful descriptions of separate but interrelated syndromes. When one has a systemic failure of one of the bodies infrastructure systems, such is its nervous system or the ability of cells to metabolise and produce useful energy, the consequences for the sufferer can be just as chronic as systemic failure of an organ. Many stress factors which trigger such failure (pathogen / para site attack, chemical poisoning, vitamin / mineral / EFS deficiency, immune system suppression, …) are common. Our problem is that medical tools and training largely do not acknowledge the concept of such a systemic failure of an infrastructure system. It is far easier to recourse to faith in “malingering” rather than apply scientific method to understand the systemic failure.
I accept that you are a true ME sufferer, but you do the causes of ME and CFS absolutely no service by adopting the position that CFS does not exist and should be banned has a valid diagnosis. You adopt a position little better than the proponents of CBT. You should know better. Shame on you.
Thanks for your comments, but just read this, to see that I just think that CFS and ME .....
I read this comment with interest. As someone who has been very severely affected by m.e.(or some as yet other undiagnosed neurological condition) for ten years and whose health is in frighteningly, rapid decline, I too was delighted to find both dr.speedy's blog and also the simon wessely i know it all - blog, and have been reading both with interest and enjoyment since they started.
As a fellow blog reader i have to disagree that dr.speedy gives the impression that he does not believe in cfs. what is a breath of fresh air and a joy with this blog is the very fact that dr.speedy, as both a doctor and a patient, differentiates with great clarity,wit and humour, between the all too common diagnosis of cfs - which can cover a range of conditions, of which chronic fatigue is a symptom and m.e. which is a neurological illness with a distinct aetiology.
those of us who get lumbered with the all encompassing diagnosis of cfs are generally left to rot and treated as hypochondriacs or malingerers by the health system and little attempt is made to find a true diagnosis.
i personally know of people who have been diagnosed with cfs who have been variously found, when properly tested after many years of ill health to have lyme disease,thyroid conditions, and myesthenia gravis.
if the distinction between cfs and m.e was recognised as such at the beginning and they had been properly investigated - many could have regained their health much earlier - for some the damage has already been done.
i also know of people who have died as a result as a result of not being investigated soon enough - having been labelled with an all encompassing diagnosis of cfs - through organ failure from m.e. or another condition not investigated because they were fobbed off with just having cfs.
it's imperative that doctors are educated as to the distinction between m.e. a neurological condition - thoroughly researched and documented as such, and noted as such in the WHO classification, and cfs.
- for some of us - our lives literally depend on it..and the race is on before it is too late.
i think dr.speedy does us all and the cause great service and with great wit and style. if doctors would take the reality of m.e. seriously - all would benefit - those with m.e. and those with a condition causing chronic fatigue as a symptom.
to say he adopts a position little better than the proponents of cbt - makes my hackles rise - and some! it takes energy, courage and integrity to stick your neck above the parapet and speak the truth and satirise the idiots who are making our lives a living hell.
hope and humour are great aids for getting you through most things - this blog provides both... and believe me with this illness you need them...but even more important- it validates my reality and the truth.....and strenghtens the glimmer of hope we hold on to as we fight for change. feel shame? - i don't think so - feel pride!
long may this blog continue in the same vein. it's a gem.
Thank you Jill for voicing what so many of us feel and thank you Dr Speedy for this blog.
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