My Brain is Controlled by Aliens
A snippet taken from a report of the IACFS/ME conference in Reno, Day 4, March 15, written by Kim McCleary, President & CEO, The CFIDS Association of America, posted on the Life as we know it blog (http://cfs-facts.blogspot.com/).
"A short but interesting session on the brain and cognitive function followed. A most intriguing study from Harvard showed that rigorously selected CFS patients were clearly distinguishable from depressed and healthy controls using spectral coherence EEG data. Presenter Frank Duffy, MD, concluded, "These data are in accord with much previously reported data indicating that CFS is a condition that causes objective, measurable perturbations in central nervous system function." He suggested that if replicated, these EEG data in combination with other brain imaging techniques might be diagnostic for CFS. A study of adult cognitive performance by Elke Van Hoof of Brussels showed slow processing speed, as has been reported by several other groups, lower performance on tasks which require complex processing, and CFS subjects' need for more time to complete reaction-time related tasks."
This may not mean much to most of you, but for me it is highly meaningful. I know there's something going on with my brain - I am not functioning like I used to, but trying to explain this to others is close to impossible. The nearest I get is to say that my head is full of cotton wool, or I feel like I have a bad hangover - without the benefit of having enjoyed the alcohol - and drinking a good cup of coffee only makes it worse. It would be great to be able to hold up the results of a scan and show that 'here is a normal brain - and here's what's going on in my brain'.
Friday, March 20, 2009
Sunday, March 15, 2009
Not so NICE
The message below refers to the recent UK high court judicial review of the National Institute for Clinical Excellence (sic) guidelines on ME. See also: http://www.investinme.org/IIME%20Campaigning-NICE-Whats-Next.htm
Message from Kevin Short
(One of the Claimants who brought the [NICE judicial review] case)
DR RAMSAY WILL HAVE HIS DAY....
From the ashes of a certain legal case I am reminded of the words of the late Dr Melvin Ramsay, that wonderful ME sage and still ever present thorn in the flesh of establishment expediency:
"When, on occasion of a... ITV programme on the subject of Myalgic Encephalomyelitis, an immunologist stated the 'ME and PVFS are regarded as synonymous' I realised my objection to the latter term was fully justified and that it was incumbent on me to show that such a statement is blatantly untrue."[1]
Quite right. ME is NOT a bit of short-term post viral 'fatigue', neither is it a bit of short-term post viral fatigue compounded by depression and misplaced beliefs that one has a multi-system neurological disease - that in turn leads to muscle-deconditioning.
NO; Myalgic Encephalomyelitis IS a multi-system neurological disorder, and rightly recognised as such by the WHO since 1969. It is a serious disease that destroys lives and leads to early death through organ-failure in a significant minority of patients.[2]
All this is NOT mere 'outdated' Ramsay rhetoric, IT IS ESTABLISHED MEDICO SCIENTIFIC FACT.[3]
There are literally thousands of erudite and peer-reviewed biomedical studies which testify to this - and the gathering tide of such evidence swells and grows in number bringing with it the inevitable truth that one day will be undeniable: that ME is NOT the same as 'Chronic Fatigue Syndrome',
ME is NOT the same thing as 'Chronic Fatigue',
ME is NOT the same thing as 'Idiopathic or
Unexplained Fatigue',
NOR is ME the same thing as the latest NICE-sponsored crass abuse of medical taxonomy: "CFS/ME". ME patients should NOT be treated the same as Idiopathic Chronic fatigue patients, and to produce a State Guideline that does so under the misleading label of 'clinical excellence' is a national disgrace. It makes about as much sense as giving the same treatment to dental and brain-tumour patients under the dubious label of 'Chronic Head-Pain Syndrome'.
Like King Canute and his powerful friends in his court, one day the lie of those who seek to neglect, misrepresent and abuse medical taxonomy and science - including those indulging in political skulduggery with the WHO International Classification of Diseases - will be overwhelmed by the tide. The ever rising tide of biomedical scientific FACT.
They will be shown up for what they are.
Forgive me for borrowing a few words from another British sage. This time from one who was partial to a bit of rhetoric: "...we may have had our Dunkirk, but we will go on fighting and we will win the war."[4]
Kevin Short.
contact@angliameact ion.org.uk
[Permission to repost].
NOTES:
[1] The Clinical Identity of the Myalgic Encephalomyelitis Syndrome; By Dr A Melvin Ramsay MA MD; Leaflet published by the ME Association (UK).
[2] http://www.sophiaandme.org.uk/
[3] See, for example, M.E. (Myalgic Encephalomyelitis) BASIC INFORMATION, at: http://angliameaction.org.uk/docs/ME-basic-information.pdf
(this link may take time to open as it's a large PDF file. Remember to use your browser back button to return here)
[4] The words of Sir Winston Leonard Spencer-Churchill; Prime Minister and First Lord of the Admiralty.
The message below refers to the recent UK high court judicial review of the National Institute for Clinical Excellence (sic) guidelines on ME. See also: http://www.investinme.org/IIME%20Campaigning-NICE-Whats-Next.htm
Message from Kevin Short
(One of the Claimants who brought the [NICE judicial review] case)
DR RAMSAY WILL HAVE HIS DAY....
From the ashes of a certain legal case I am reminded of the words of the late Dr Melvin Ramsay, that wonderful ME sage and still ever present thorn in the flesh of establishment expediency:
"When, on occasion of a... ITV programme on the subject of Myalgic Encephalomyelitis, an immunologist stated the 'ME and PVFS are regarded as synonymous' I realised my objection to the latter term was fully justified and that it was incumbent on me to show that such a statement is blatantly untrue."[1]
Quite right. ME is NOT a bit of short-term post viral 'fatigue', neither is it a bit of short-term post viral fatigue compounded by depression and misplaced beliefs that one has a multi-system neurological disease - that in turn leads to muscle-deconditioning.
NO; Myalgic Encephalomyelitis IS a multi-system neurological disorder, and rightly recognised as such by the WHO since 1969. It is a serious disease that destroys lives and leads to early death through organ-failure in a significant minority of patients.[2]
All this is NOT mere 'outdated' Ramsay rhetoric, IT IS ESTABLISHED MEDICO SCIENTIFIC FACT.[3]
There are literally thousands of erudite and peer-reviewed biomedical studies which testify to this - and the gathering tide of such evidence swells and grows in number bringing with it the inevitable truth that one day will be undeniable: that ME is NOT the same as 'Chronic Fatigue Syndrome',
ME is NOT the same thing as 'Chronic Fatigue',
ME is NOT the same thing as 'Idiopathic or
Unexplained Fatigue',
NOR is ME the same thing as the latest NICE-sponsored crass abuse of medical taxonomy: "CFS/ME". ME patients should NOT be treated the same as Idiopathic Chronic fatigue patients, and to produce a State Guideline that does so under the misleading label of 'clinical excellence' is a national disgrace. It makes about as much sense as giving the same treatment to dental and brain-tumour patients under the dubious label of 'Chronic Head-Pain Syndrome'.
Like King Canute and his powerful friends in his court, one day the lie of those who seek to neglect, misrepresent and abuse medical taxonomy and science - including those indulging in political skulduggery with the WHO International Classification of Diseases - will be overwhelmed by the tide. The ever rising tide of biomedical scientific FACT.
They will be shown up for what they are.
Forgive me for borrowing a few words from another British sage. This time from one who was partial to a bit of rhetoric: "...we may have had our Dunkirk, but we will go on fighting and we will win the war."[4]
Kevin Short.
contact@angliameact ion.org.uk
[Permission to repost].
NOTES:
[1] The Clinical Identity of the Myalgic Encephalomyelitis Syndrome; By Dr A Melvin Ramsay MA MD; Leaflet published by the ME Association (UK).
[2] http://www.sophiaandme.org.uk/
[3] See, for example, M.E. (Myalgic Encephalomyelitis) BASIC INFORMATION, at: http://angliameaction.org.uk/docs/ME-basic-information.pdf
(this link may take time to open as it's a large PDF file. Remember to use your browser back button to return here)
[4] The words of Sir Winston Leonard Spencer-Churchill; Prime Minister and First Lord of the Admiralty.
Tuesday, March 10, 2009
Sound Familiar ?
Greg Crowhurst 8 March 2009
Permission to Repost
Its cause remains unknown. There is no known cure. It develops differently in each person and women are more likely to develop the disease than men.
Diagnosis is dependent upon the elimination of other physical causes.
The only way to be sure a person has the disease is to examine their brain after death.
Patients cannot fully recover from the disease. They can be helped, especially if the disease is discovered early enough.
It is a disease that affects millions around the world and there are huge issues with NICE.
Sound familiar ?
No, it is not ME, it is Alzheimers.
------
It is a chronic disease of the central nervous system. It leaves distinct layers of scar tissue in the brain, yet it is a fairly unknown and complex disease.
There is no known direct cause of the disease.
Diagnosis takes months of testing and the ruling out of other physical causes.
There is no single direct test for this disease.
There is no cure either. Treatment plans are highly individualised for each person.
There is no known way to prevent the onset of the disease.
It affects millions around the world.
Sound familiar? No it is not ME, it is Multiple Sclerosis.
------
In its severe state it is particularly frustrating to care for, partly because it is heterogeneous. The genetic and environmental elements that may cause the disease are still poorly understood.
No it is not ME, it is Asthma.
----
For many years doctors thought that Irritable Bowel Syndrome was a psychiatric rather than a physical disorder. Just as they still do in ME.
As Stephen Ralph asks: how many times have we seen a psychiatrist or a psychiatric study describe "CFS/ME" as a "poorly understood illness?" (2008
http://www.meaction uk.org.uk/ Why_the_CISSD_ Project_MUST_ Fail.html)
Yet ME is only one among countless poorly understood illness in the world.
Here's just a few at random (references available upon request):
Breast Cancer is still poorly understood.
The mechanisms behind the "eczema itch" are complex and still poorly understood.
Endometriosis is still poorly understood and its cause is still unknown.
Obesity's connection to Cardiovascular Disease is complex and still remains poorly understood.
Osteoarthritis is still a poorly understood disease, that has little to with wear and tear. There is still no cure.
Airport malaria is still a poorly understood disease.
Neurocysticercosis : cystic lesions on the brain, is a poorly understood disease.
Why women develop heart disease is still poorly understood. It is still a mystery, for example, why younger woman are still more likely to die from a heart attack than older woman.
Chronic Prostatitis Syndrome is a common, but still poorly understood condition.
Pulmonary-renal syndrome is still a poorly understood clinicopathologic condition .
Severe Acute Respiratory Syndrome (SARS), is still a poorly understood disease, despite being classified by the WHO in 2003 as a global threat to health .
Insomnia is still poorly understood by the medical profession.
Crohn's Disease and Ulcerative Colitis: are still poorly understood.
Calciphylaxis, a complication of end-stage renal disease is still a poorly understood clinical syndrome.
Kawasaki disease, which involves the skin, mouth and lymph nodes is a poorly understood disease, despite being studied since World War II.
What is so tragic is that NONE of the poorly understood diseases listed above cite psychiatric rehabilitation techniques as their first-line treatment interventions, as they do in ME.
People above are suffering, often terribly, but at least they taken relatively seriously; what we have to deal with is off the scale, and all because "in the
1970s certain psychiatrists became involved (with ME,) notably McEvedy and Beard, who in a paper with no scientific merit whatever, dismissed ME as mass hysteria (see: BMJ 1970:1:7-11). "Marshall E, Williams M, Vade Mecum http://www.meaction uk.org.uk/ Vade_MEcum. htm
Will we ever know just how many deaths, how many endless hours of ongoing suffering, how many broken hopes and dreams that has led to?
Me, I'm just screaming.
(Greg Crowhurst is the husband and carer of his wife, Linda Crowhurst, who has severe ME. Thanks for writing this, Greg!)
Greg Crowhurst 8 March 2009
Permission to Repost
Its cause remains unknown. There is no known cure. It develops differently in each person and women are more likely to develop the disease than men.
Diagnosis is dependent upon the elimination of other physical causes.
The only way to be sure a person has the disease is to examine their brain after death.
Patients cannot fully recover from the disease. They can be helped, especially if the disease is discovered early enough.
It is a disease that affects millions around the world and there are huge issues with NICE.
Sound familiar ?
No, it is not ME, it is Alzheimers.
------
It is a chronic disease of the central nervous system. It leaves distinct layers of scar tissue in the brain, yet it is a fairly unknown and complex disease.
There is no known direct cause of the disease.
Diagnosis takes months of testing and the ruling out of other physical causes.
There is no single direct test for this disease.
There is no cure either. Treatment plans are highly individualised for each person.
There is no known way to prevent the onset of the disease.
It affects millions around the world.
Sound familiar? No it is not ME, it is Multiple Sclerosis.
------
In its severe state it is particularly frustrating to care for, partly because it is heterogeneous. The genetic and environmental elements that may cause the disease are still poorly understood.
No it is not ME, it is Asthma.
----
For many years doctors thought that Irritable Bowel Syndrome was a psychiatric rather than a physical disorder. Just as they still do in ME.
As Stephen Ralph asks: how many times have we seen a psychiatrist or a psychiatric study describe "CFS/ME" as a "poorly understood illness?" (2008
http://www.meaction uk.org.uk/ Why_the_CISSD_ Project_MUST_ Fail.html)
Yet ME is only one among countless poorly understood illness in the world.
Here's just a few at random (references available upon request):
Breast Cancer is still poorly understood.
The mechanisms behind the "eczema itch" are complex and still poorly understood.
Endometriosis is still poorly understood and its cause is still unknown.
Obesity's connection to Cardiovascular Disease is complex and still remains poorly understood.
Osteoarthritis is still a poorly understood disease, that has little to with wear and tear. There is still no cure.
Airport malaria is still a poorly understood disease.
Neurocysticercosis : cystic lesions on the brain, is a poorly understood disease.
Why women develop heart disease is still poorly understood. It is still a mystery, for example, why younger woman are still more likely to die from a heart attack than older woman.
Chronic Prostatitis Syndrome is a common, but still poorly understood condition.
Pulmonary-renal syndrome is still a poorly understood clinicopathologic condition .
Severe Acute Respiratory Syndrome (SARS), is still a poorly understood disease, despite being classified by the WHO in 2003 as a global threat to health .
Insomnia is still poorly understood by the medical profession.
Crohn's Disease and Ulcerative Colitis: are still poorly understood.
Calciphylaxis, a complication of end-stage renal disease is still a poorly understood clinical syndrome.
Kawasaki disease, which involves the skin, mouth and lymph nodes is a poorly understood disease, despite being studied since World War II.
What is so tragic is that NONE of the poorly understood diseases listed above cite psychiatric rehabilitation techniques as their first-line treatment interventions, as they do in ME.
People above are suffering, often terribly, but at least they taken relatively seriously; what we have to deal with is off the scale, and all because "in the
1970s certain psychiatrists became involved (with ME,) notably McEvedy and Beard, who in a paper with no scientific merit whatever, dismissed ME as mass hysteria (see: BMJ 1970:1:7-11). "Marshall E, Williams M, Vade Mecum http://www.meaction uk.org.uk/ Vade_MEcum. htm
Will we ever know just how many deaths, how many endless hours of ongoing suffering, how many broken hopes and dreams that has led to?
Me, I'm just screaming.
(Greg Crowhurst is the husband and carer of his wife, Linda Crowhurst, who has severe ME. Thanks for writing this, Greg!)
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