Oh lord! I wish Dr. Carruthers were my doctor!
IACFS/ME 09 Conference: Lifestyle Management: "Dr. Carruthers believes pacing is an essential strategy because the ‘delayed and prolonged’ fatigue in ME/CFS is fundamentally different from the kind of fatigue found in other diseases. Putting them rather low on the ladder of his estimation, he noted that “even the authors of the NICE Guidelines ‘ are (finally) beginning to realize this but unfortunately they still don’t fully understand what this means.'
If I understand him correctly, ‘fatigue’ is part of a complex control system. When we’re too active and our bodies are beginning to suffer, fatigue sets in and causes us to reduce our activity levels. Of course we can override this fatigue command for a time with stimulants or by ignoring it, etc. but once the command is obeyed and we become inactive, the fatigue disappears rather quickly. It’s a very easily learned behavior pattern; do too much, suffer from fatigue; obey the fatigue signal, rest and quickly recover.
That pattern, of course, has just been shredded in ME/CFS. For one, the onset of fatigue is delayed - and what a problem that causes. You can engage in an activity and feel fine and then collapse hours or even days later. Not only that, but because the fatigue state is so prolonged, it’s difficult to tell cause and effect. Was it that activity three days ago or was it something yesterday that made my symptoms so bad today? Or was it because I overdid it three days ago that this minor activity I did yesterday triggered more fatigue today? (Throw in the fact that ‘fatigue’ itself impairs our ability to understand complicated situations and you can see how difficult it is for patients to know – particularly when they’re symptomatic – what has caused what."
Sunday, May 31, 2009
IACFS/ME 09 Conference: Lifestyle Management
Not before time!
IACFS/ME 09 Conference: Lifestyle Management: "Mind:Body? Or is it Body:Mind? In the beginning, behavioral therapists suggested that people with chronic fatigue syndrome differ little from healthy people in a physiological sense but that they’re quite different psychologically; they’re either too absorbed in their symptoms or they’re depressed or anxious - i.e., if you could just get them to stop focusing so much on their problems, they’d get well.
Dr. Jason appears to believe that those early CBT practitioners were putting the cart before the horse. Rather than the mind driving the body, it may be that the body is driving the mind. All those symptoms (that anxiety, that depression. . .) are what occur when patients transgress their physiological capabilities. His research is putting stress reduction therapies into a physiological context rather than a psychological one. Instead of suggesting that ME/CFS patients are mental basket cases he’s proposing that they’re rather courageous individuals (yes, he did say ‘courageous’) bucking up against an impaired physiology that greatly limits their choices.
He proposed that, instead of cycles of maladaptive behavior driving their limitations, there are actual physiological limits to what ME/CFS patients can achieve. Once they get outside of that activity ‘safety zone’ they encounter increased levels of oxidative stress, and neuroendocrine and immune problems that cause their symptoms to flare up again.
His thinking is clearly borne out by increasing evidence that if you push ME/CFS patients too far in any way – physically or psychologically – in the street or in the laboratory – their systems are going to behave abnormally....
...
Looked at in this light, instead of correcting patient's maladaptive thought patterns, cognitive behavioral therapies and other types of stress reduction approaches are doing nothing more than reducing stressful inputs and relieving the strain on an overworked system and allowing it to heal at least somewhat.
Don't Use It - Don't Lose It - The envelope theory is perfect for Dr. Jason’s studies. It relies on the idea that there’s only so much juice in a chronic fatigue syndrome patient's batteries. If you use that juice up it’s gone and needs to be built up again, but if you don’t use it up it can actually build up over time. In his study Dr. Jason had chronic fatigue syndrome patients use envelope theory techniques and recorded their symptom levels. His graphs vividly showed that as ME/CFS patients use up their energy their symptoms rise dramatically. On the other hand, when they were using the energy envelope techniques not only did their symptoms drop – dramatically – but over time their overall level of activity increased. Here was vivid evidence that lifestyle management techniques can pay off in improved health."
IACFS/ME 09 Conference: Lifestyle Management: "Mind:Body? Or is it Body:Mind? In the beginning, behavioral therapists suggested that people with chronic fatigue syndrome differ little from healthy people in a physiological sense but that they’re quite different psychologically; they’re either too absorbed in their symptoms or they’re depressed or anxious - i.e., if you could just get them to stop focusing so much on their problems, they’d get well.
Dr. Jason appears to believe that those early CBT practitioners were putting the cart before the horse. Rather than the mind driving the body, it may be that the body is driving the mind. All those symptoms (that anxiety, that depression. . .) are what occur when patients transgress their physiological capabilities. His research is putting stress reduction therapies into a physiological context rather than a psychological one. Instead of suggesting that ME/CFS patients are mental basket cases he’s proposing that they’re rather courageous individuals (yes, he did say ‘courageous’) bucking up against an impaired physiology that greatly limits their choices.
He proposed that, instead of cycles of maladaptive behavior driving their limitations, there are actual physiological limits to what ME/CFS patients can achieve. Once they get outside of that activity ‘safety zone’ they encounter increased levels of oxidative stress, and neuroendocrine and immune problems that cause their symptoms to flare up again.
His thinking is clearly borne out by increasing evidence that if you push ME/CFS patients too far in any way – physically or psychologically – in the street or in the laboratory – their systems are going to behave abnormally....
...
Looked at in this light, instead of correcting patient's maladaptive thought patterns, cognitive behavioral therapies and other types of stress reduction approaches are doing nothing more than reducing stressful inputs and relieving the strain on an overworked system and allowing it to heal at least somewhat.
Don't Use It - Don't Lose It - The envelope theory is perfect for Dr. Jason’s studies. It relies on the idea that there’s only so much juice in a chronic fatigue syndrome patient's batteries. If you use that juice up it’s gone and needs to be built up again, but if you don’t use it up it can actually build up over time. In his study Dr. Jason had chronic fatigue syndrome patients use envelope theory techniques and recorded their symptom levels. His graphs vividly showed that as ME/CFS patients use up their energy their symptoms rise dramatically. On the other hand, when they were using the energy envelope techniques not only did their symptoms drop – dramatically – but over time their overall level of activity increased. Here was vivid evidence that lifestyle management techniques can pay off in improved health."
Friday, May 29, 2009
WOW £13 home-test kit developed for ME
The Press Association: £13 home-test kit developed for ME: "Scientists have developed a £13 home-testing kit which they claim will help identify people suffering from myalgic encephalopathy (ME).
The urine test is based on the theory that the illness is strongly linked to certain bacteria and a build up of toxins in the body. Experts are divided on what exactly causes ME, which was dismissed as 'yuppie flu' in the 1980s.
At a conference in London, Professor Kenny de Meirleir, who works at the University of Brussels, discussed his theory.
He and fellow scientists have developed a simple urine test which they say identifies the presence of high levels of the chemical hydrogen sulphate.
This chemical builds up after antibiotic use or exposure to salmonella infection, and can occur when there is too much exposure to mercury, he said.
Prof de Meirleir's research has shown that around 90% of patients with ME also have an excess of the bacteria enterococcus and streptococcus, which he believes interacts with exposure to metals to produce hydrogen sulphate.
Prof de Meirleir, who treats between 3,000 and 4,000 ME patients a year, said his patients had been shown to excrete high quantities of the metals copper, mercury and nickel, possibly contracted through the environment or food.
Prof de Meirleir said his new test, produced by his company Protea Biopharma and available via its website from Monday, accurately shows whether an ME patient has high levels of hydrogen sulphate. The patient's urine turns a dark colour when mixed with a chemical agent in the test.
'This is a test for a major cause of ME,' he said. 'Anyone with a positive result should talk about it with their GP and get referred to a specialist.'
Copyright © 2009 The Press Association"
The urine test is based on the theory that the illness is strongly linked to certain bacteria and a build up of toxins in the body. Experts are divided on what exactly causes ME, which was dismissed as 'yuppie flu' in the 1980s.
At a conference in London, Professor Kenny de Meirleir, who works at the University of Brussels, discussed his theory.
He and fellow scientists have developed a simple urine test which they say identifies the presence of high levels of the chemical hydrogen sulphate.
This chemical builds up after antibiotic use or exposure to salmonella infection, and can occur when there is too much exposure to mercury, he said.
Prof de Meirleir's research has shown that around 90% of patients with ME also have an excess of the bacteria enterococcus and streptococcus, which he believes interacts with exposure to metals to produce hydrogen sulphate.
Prof de Meirleir, who treats between 3,000 and 4,000 ME patients a year, said his patients had been shown to excrete high quantities of the metals copper, mercury and nickel, possibly contracted through the environment or food.
Prof de Meirleir said his new test, produced by his company Protea Biopharma and available via its website from Monday, accurately shows whether an ME patient has high levels of hydrogen sulphate. The patient's urine turns a dark colour when mixed with a chemical agent in the test.
'This is a test for a major cause of ME,' he said. 'Anyone with a positive result should talk about it with their GP and get referred to a specialist.'
Copyright © 2009 The Press Association"
Thursday, May 28, 2009
Treating Fibromyalgia Pain - an Organized Approach
Great advice as always..
Treating Fibromyalgia Pain - an Organized Approach: "Treating Fibromyalgia Pain — an Organized Approach
The FDA has recently (and for the first time) begun to approve medications for treating fibromyalgia pain. In the last year, the FDA has approved Lyrica, Cymbalta, and now Minalcipran. Although these medications can be helpful, and you will hear about them (each company will spend about $70 million per year advertising them), it is critical to remember that the key to pain relief is to use the 'SHINE Protocol' to eliminate the underlying causes of the pain. Pain is like the 'oil light on your dashboard' telling you that something urgently needs attention. By treating SHINE, you address:
Sleep
Hormonal support (despite normal lab tests)
Infections
Nutritional support, and
Exercise as able
Most of you will find that when you treat 'SHINE' your pain will go away, or at least markedly decrease. In the interim, or even long term in cases where we can't get to the root cause of the pain, pain medications can offer a lot of relief.
I highly recommend that you read his "detailed article which will take you through a step-by-step process to help you get pain free. It will review how to treat the underlying causes of the pain and how to use natural remedies for pain. It will also review how to use over a dozen pain medications (and the order in which to try them) so you can get pain relief while going after root causes of the pain."
Treating Fibromyalgia Pain - an Organized Approach: "Treating Fibromyalgia Pain — an Organized Approach
The FDA has recently (and for the first time) begun to approve medications for treating fibromyalgia pain. In the last year, the FDA has approved Lyrica, Cymbalta, and now Minalcipran. Although these medications can be helpful, and you will hear about them (each company will spend about $70 million per year advertising them), it is critical to remember that the key to pain relief is to use the 'SHINE Protocol' to eliminate the underlying causes of the pain. Pain is like the 'oil light on your dashboard' telling you that something urgently needs attention. By treating SHINE, you address:
Sleep
Hormonal support (despite normal lab tests)
Infections
Nutritional support, and
Exercise as able
Most of you will find that when you treat 'SHINE' your pain will go away, or at least markedly decrease. In the interim, or even long term in cases where we can't get to the root cause of the pain, pain medications can offer a lot of relief.
I highly recommend that you read his "detailed article which will take you through a step-by-step process to help you get pain free. It will review how to treat the underlying causes of the pain and how to use natural remedies for pain. It will also review how to use over a dozen pain medications (and the order in which to try them) so you can get pain relief while going after root causes of the pain."
Wednesday, May 27, 2009
'Milestone' celebrated as ME document is sent to GPs - Scotsman.com News
'Milestone' celebrated as ME document is sent to GPs - Scotsman.com News: "FOR years it has been dismissed as 'yuppie flu', fuelling a perception that it has received little attention from doctors.
But campaigners for recognition of ME as a serious illness both in the medical world and among the general public are celebrating what they are branding a 'milestone' move.
Following pressure from an NHS Lothian study, the Scottish Government has ADVERTISEMENTcirculated a document to all GPs asking them to look more closely at the symptoms and treatment of the chronic illness, which causes extreme tiredness and pain.
It is another significant progression for the condition in Scotland and further abandons the idea that sufferers are merely lazy or behaving like hypochondriacs.
The Scottish Good Practice Statement on ME comes after an internal report by NHS Lothian which acknowledges ME – or chronic fatigue syndrome – has been neglected for years and related services are in desperate need of a shake-up.
In the document, GPs are told that ME causes "significant ill health and disability in a number of adults, young people and children".
Symptoms include unexplained fatigue, sleep dysfunction and pain, and that once these are evident for six months (three months for children), diagnosis can be made.
It adds that the quicker a diagnosis can be made, the less severe impact ME can have on a victim's life. Emotional support and counselling are also pushed in the document to give maximum support to the estimated 4,000 people in the Lothians who could be affected by ME.
A spokeswoman for Edinburgh ME Self-Help Group, which lobbies for improvements in medical and public awareness, said: "This is actually something of a milestone.
"Some people do have very good doctors, but there are still those who know little about the subject, and we are pleased it is moving in the right direction.
"The ultimate goal is to have ME considered alongside other long-term illnesses like MS and rheumatoid arthritis."
Public Health Minister Shona Robison said both the Lothian study and the new advice for GPs were very important pieces of work."
But campaigners for recognition of ME as a serious illness both in the medical world and among the general public are celebrating what they are branding a 'milestone' move.
Following pressure from an NHS Lothian study, the Scottish Government has ADVERTISEMENTcirculated a document to all GPs asking them to look more closely at the symptoms and treatment of the chronic illness, which causes extreme tiredness and pain.
It is another significant progression for the condition in Scotland and further abandons the idea that sufferers are merely lazy or behaving like hypochondriacs.
The Scottish Good Practice Statement on ME comes after an internal report by NHS Lothian which acknowledges ME – or chronic fatigue syndrome – has been neglected for years and related services are in desperate need of a shake-up.
In the document, GPs are told that ME causes "significant ill health and disability in a number of adults, young people and children".
Symptoms include unexplained fatigue, sleep dysfunction and pain, and that once these are evident for six months (three months for children), diagnosis can be made.
It adds that the quicker a diagnosis can be made, the less severe impact ME can have on a victim's life. Emotional support and counselling are also pushed in the document to give maximum support to the estimated 4,000 people in the Lothians who could be affected by ME.
A spokeswoman for Edinburgh ME Self-Help Group, which lobbies for improvements in medical and public awareness, said: "This is actually something of a milestone.
"Some people do have very good doctors, but there are still those who know little about the subject, and we are pleased it is moving in the right direction.
"The ultimate goal is to have ME considered alongside other long-term illnesses like MS and rheumatoid arthritis."
Public Health Minister Shona Robison said both the Lothian study and the new advice for GPs were very important pieces of work."
Sunday, May 24, 2009
Epidemic Myalgic Encephalomyelitis: A Demand for Urgent Action and Accountability - PlateletGal's Journal - MedHelp
Scandalous and no doubt a contirbuting factor to my rude, dismissive treatment whenever referred to hospital for tests etc
Epidemic Myalgic Encephalomyelitis: A Demand for Urgent Action and Accountability - PlateletGal's Journal - MedHelp:
"The CDC has systematically failed its mission to protect the health of the global community with regard to the uncontrolled spread of the pandemic neurological and multiple systemic disease Myalgic Encephalomyelitis,to prevent the chronic lifelong disability, suffering and needless deaths ithas wreaked on the lives of millions of people around the world since the CDC became negatively involved with this infectious disease 25 years ago while in the midst of the AIDS pandemic. The CDC ignored the growing epidemics, theCheney/Peterson biomarkers and historical evidence by constructing CFS and pretending it was a new condition.
It has failed to educate the public about the 75 year epidemic history of M.E., to educate the medical profession with appropriate guidelines to care for the patients, to fund research and provide treatmentsfor the disease, and critically to ban blood donations and stop the spread ofthis disease. It has failed its mission and goals, denying the epidemics, focusing wrongly on fatigue and psychosocial factors, pursuing meaningless research studies, and subjecting sufferers to uninformed medical neglect andhuman rights abuses. Advising doctors not to do the very tests that wouldconfirm the disease? That is CDC policy.
It began with a botched investigation of a major outbreakof M.E. in a tourist village at Lake Tahoe, where the CDC ignored thebiomarkers found by Drs Cheney and Peterson which validated the disease, and continuing to the present day with its 25-year marketing exercise in rebranding this serious disease similar to M.S. and Post Polio Syndrome as CFS, renaming and redefining it as a vague fatigue state via the unscientific Fukuda and Holmes definitions and further reducing it to a �"
Epidemic Myalgic Encephalomyelitis: A Demand for Urgent Action and Accountability - PlateletGal's Journal - MedHelp:
"The CDC has systematically failed its mission to protect the health of the global community with regard to the uncontrolled spread of the pandemic neurological and multiple systemic disease Myalgic Encephalomyelitis,to prevent the chronic lifelong disability, suffering and needless deaths ithas wreaked on the lives of millions of people around the world since the CDC became negatively involved with this infectious disease 25 years ago while in the midst of the AIDS pandemic. The CDC ignored the growing epidemics, theCheney/Peterson biomarkers and historical evidence by constructing CFS and pretending it was a new condition.
It has failed to educate the public about the 75 year epidemic history of M.E., to educate the medical profession with appropriate guidelines to care for the patients, to fund research and provide treatmentsfor the disease, and critically to ban blood donations and stop the spread ofthis disease. It has failed its mission and goals, denying the epidemics, focusing wrongly on fatigue and psychosocial factors, pursuing meaningless research studies, and subjecting sufferers to uninformed medical neglect andhuman rights abuses. Advising doctors not to do the very tests that wouldconfirm the disease? That is CDC policy.
It began with a botched investigation of a major outbreakof M.E. in a tourist village at Lake Tahoe, where the CDC ignored thebiomarkers found by Drs Cheney and Peterson which validated the disease, and continuing to the present day with its 25-year marketing exercise in rebranding this serious disease similar to M.S. and Post Polio Syndrome as CFS, renaming and redefining it as a vague fatigue state via the unscientific Fukuda and Holmes definitions and further reducing it to a �"
Friday, May 08, 2009
Fibromyalgia and IBS flare up
Ho hum,
I thought I was just losing a bit of weight off my upper tum as it seemed to be getting smaller but yesterday it was a big as ever, swollen and tender plus rabbit dropping constipation so it looks like maybe the IBS is affecting my upper digestive track too...Oh poo!
I thought I was just losing a bit of weight off my upper tum as it seemed to be getting smaller but yesterday it was a big as ever, swollen and tender plus rabbit dropping constipation so it looks like maybe the IBS is affecting my upper digestive track too...Oh poo!
Thursday, May 07, 2009
When Doctors Don’t Know What’s Wrong « Happiness in this World
When Doctors Don’t Know What’s Wrong « Happiness in this World: "When Doctors Don’t Know What’s Wrong"
On Tuesday I had a mammogram and my breast ultra sound scanned at The Friarage just a week after reporting a lump to my GP, I had hoped she would say it was nothing to worry about but that was not be. Instead I got an urgent referral to the Scott Suite, an excellent breast clinic at The Friarage Hospital.
The doctor looked knackered but he listened - last time I was made to feel stupid for being concerned about my left breast starting to grow so much that was at least one cup size bigger! He said no-one is symetrical and it had probably always been like that, which was so not true. Indeed, it is now at least TWO cup sizes bigger...
So the doc sent me off for a mammogram, the staff were lovely, friendly and efficient, squeezing my boobs untill paper thin as tenderly as possible, trying to make sure they got all the breast tissue in. I was only flummoxed once when they thought I had had surgery?????
But then....I met her! The ultra sound scanner from hell! I thought I was going back to the doc but was taken to a small examination room with loads of surgical instruments laid out - I didnt have a clue what to expect next. Laid out on the examination table a door opened behind me and in she flounced saying "I am only doing this to reassure you", a phrase she must have repeated at lest 20 times.
Ordered to lie on my side then berated for not being in the exact position she wanted, the lubricant gel was slapped on and the scanner head roughly jabbed at and pushed around my already tender breast she barked "where is this lump?". I tried to put my fingers over it only to have my hand slapped away.
" I don't doubt that there is a lump" she said but it is nothing" so I had to ask "Well, what is the lump then?" Her answer? " How old are you? (50) It is because you are peri-menopausal" I tried to say but my last period was 4 or 5 years ago so I am surely post menopausal...but I was not allowed to finish my sentence as she interupted saying "if I knew why i would be a very rich woman, if i could find a cure..." as she flounced back out behind me.
I was gobstruck during all of this procedure - why as she being so rude and dismissive?
Then the article linked to above arrived in my inbox ( serendipity?) and reminded me to not take it all personally and to pity her and her anger.
On Tuesday I had a mammogram and my breast ultra sound scanned at The Friarage just a week after reporting a lump to my GP, I had hoped she would say it was nothing to worry about but that was not be. Instead I got an urgent referral to the Scott Suite, an excellent breast clinic at The Friarage Hospital.
The doctor looked knackered but he listened - last time I was made to feel stupid for being concerned about my left breast starting to grow so much that was at least one cup size bigger! He said no-one is symetrical and it had probably always been like that, which was so not true. Indeed, it is now at least TWO cup sizes bigger...
So the doc sent me off for a mammogram, the staff were lovely, friendly and efficient, squeezing my boobs untill paper thin as tenderly as possible, trying to make sure they got all the breast tissue in. I was only flummoxed once when they thought I had had surgery?????
But then....I met her! The ultra sound scanner from hell! I thought I was going back to the doc but was taken to a small examination room with loads of surgical instruments laid out - I didnt have a clue what to expect next. Laid out on the examination table a door opened behind me and in she flounced saying "I am only doing this to reassure you", a phrase she must have repeated at lest 20 times.
Ordered to lie on my side then berated for not being in the exact position she wanted, the lubricant gel was slapped on and the scanner head roughly jabbed at and pushed around my already tender breast she barked "where is this lump?". I tried to put my fingers over it only to have my hand slapped away.
" I don't doubt that there is a lump" she said but it is nothing" so I had to ask "Well, what is the lump then?" Her answer? " How old are you? (50) It is because you are peri-menopausal" I tried to say but my last period was 4 or 5 years ago so I am surely post menopausal...but I was not allowed to finish my sentence as she interupted saying "if I knew why i would be a very rich woman, if i could find a cure..." as she flounced back out behind me.
I was gobstruck during all of this procedure - why as she being so rude and dismissive?
Then the article linked to above arrived in my inbox ( serendipity?) and reminded me to not take it all personally and to pity her and her anger.
Wednesday, April 15, 2009
Managing Fibrofog - The Cognitive Dysfunction of Fibromyalgia
This is probably the sympton of fibromyalgia that most distresses me having had a first class brain prior to first becoming ill, fellow students at university used to reckon I must have a photographic memory but my brain was capable of much more than that, it could analyse the info and make connections and draw conclussions...now I often have huge difficulty even finding the right words! A nightmare..
Managing Fibrofog - The Cognitive Dysfunction of Fibromyalgia: "Perhaps the most frustrating complaint I hear from patients with Fibromyalgia is the fibrofog.
Unlike the pain and fatigue which are usually constant nuisances, this problem causes unpredictable difficulties with our thinking. The unpredictability is the very reason it’s most frustrating. You never know when it will strike.
Fibrofog… is the cognitive dysfunction brought on by Fibromyalgia. Its symptoms include:
• Forgetfulness
• Absentmindedness
• Concentration problems
• Confusion
• Disorientation (get lost easily)
• Difficulty finding or saying words
• Short-term memory loss
• Difficulty understanding what you’ve read
• Difficulty calculating simple math problems
• Mixing up words
• Right-left confusion
• Poor ability to give directions.
Additional cognitive symptoms with more emotional components include:
• Depression
• Irritability
• Anxiety
• Panic attacks.
Fibrofog is not a dementia or early Alzheimer’s.
We demonstrate normal learning and memory although we process information more slowly because of our Fibromyalgia."
Managing Fibrofog - The Cognitive Dysfunction of Fibromyalgia: "Perhaps the most frustrating complaint I hear from patients with Fibromyalgia is the fibrofog.
Unlike the pain and fatigue which are usually constant nuisances, this problem causes unpredictable difficulties with our thinking. The unpredictability is the very reason it’s most frustrating. You never know when it will strike.
Fibrofog… is the cognitive dysfunction brought on by Fibromyalgia. Its symptoms include:
• Forgetfulness
• Absentmindedness
• Concentration problems
• Confusion
• Disorientation (get lost easily)
• Difficulty finding or saying words
• Short-term memory loss
• Difficulty understanding what you’ve read
• Difficulty calculating simple math problems
• Mixing up words
• Right-left confusion
• Poor ability to give directions.
Additional cognitive symptoms with more emotional components include:
• Depression
• Irritability
• Anxiety
• Panic attacks.
Fibrofog is not a dementia or early Alzheimer’s.
We demonstrate normal learning and memory although we process information more slowly because of our Fibromyalgia."
Tuesday, March 24, 2009
Dr Bruce Carruthers condemns NICE 'CFS/ME' Guideline
WITNESS STATEMENT OF DR BRUCE CARRUTHERS FOR FRASER & SHORT V NICE.
Dear All,
In his witness statement provided for Douglas Fraser and Kevin Short for the UK High Court Judicial Review of the NICE 'CFS/ME' Guideline (CG53) Dr Bruce Carruthers, lead author of the International ('Canadian') ME Diagnostic & Treatment Protocols thoroughly dissects, assesses and then condemns the Guideline. In conclusion he unequivocally states the following:
"The NICE document does not aid the clinician by offering guidance about the defining symptomatology of ME/CFS as an aid to diagnosis and treatment: all it does is to offer a cook-book diagnostic process that must be followed, and then it recommends two non-specific behavioural approaches that are not treatment-based and which are non-specific to the disorder under review.
Overall, the process and the resulting Guideline are, in my opinion, detrimental to both patients' best interests and to best clinical practice.
The present Guideline cannot by any standards be considered as providing "best practice advice on the care of people with CFS/ME" nor is it "based on the best available evidence" as it claims. In my opinion it should be withdrawn."
Such outright international condemnation from someone of Dr Carruthers' professional standing and experience ought to ring alarm bells in any right-minded person. Dr Carruthers' full witness statement for Fraser & Short is now published with his permission. It is available now as a .pdf download at the web addresses below.
Best wishes,
Kevin Short.
contact@angliameaction.org.uk
Dear All,
In his witness statement provided for Douglas Fraser and Kevin Short for the UK High Court Judicial Review of the NICE 'CFS/ME' Guideline (CG53) Dr Bruce Carruthers, lead author of the International ('Canadian') ME Diagnostic & Treatment Protocols thoroughly dissects, assesses and then condemns the Guideline. In conclusion he unequivocally states the following:
"The NICE document does not aid the clinician by offering guidance about the defining symptomatology of ME/CFS as an aid to diagnosis and treatment: all it does is to offer a cook-book diagnostic process that must be followed, and then it recommends two non-specific behavioural approaches that are not treatment-based and which are non-specific to the disorder under review.
Overall, the process and the resulting Guideline are, in my opinion, detrimental to both patients' best interests and to best clinical practice.
The present Guideline cannot by any standards be considered as providing "best practice advice on the care of people with CFS/ME" nor is it "based on the best available evidence" as it claims. In my opinion it should be withdrawn."
Such outright international condemnation from someone of Dr Carruthers' professional standing and experience ought to ring alarm bells in any right-minded person. Dr Carruthers' full witness statement for Fraser & Short is now published with his permission. It is available now as a .pdf download at the web addresses below.
Best wishes,
Kevin Short.
contact@angliameaction.org.uk
Tuesday, March 03, 2009
February 2009: no miracle cure for M.E.
February 2009: ME Free For All: "There is no miracle cure for M.E.
Practioners of the treatment for M.E., which led to Jane Flowers's, 'Flash Recovery' (Jane's Flash Recovery, YOU Magazine in the Mail on Sunday, 22 February 2009) claim 85 per cent sucess.
AFME 2008 Survey reavealed that only 53 per cent of our survey respondents found it helpful, 31 per cent said it made no difference and 16 per cent said it made them worse.
ME is a chronic fluctuating illness and no one treatment has proven to be beneficial to everyone affected.
More research is needed into the effectiveness of treatments."
Practioners of the treatment for M.E., which led to Jane Flowers's, 'Flash Recovery' (Jane's Flash Recovery, YOU Magazine in the Mail on Sunday, 22 February 2009) claim 85 per cent sucess.
AFME 2008 Survey reavealed that only 53 per cent of our survey respondents found it helpful, 31 per cent said it made no difference and 16 per cent said it made them worse.
ME is a chronic fluctuating illness and no one treatment has proven to be beneficial to everyone affected.
More research is needed into the effectiveness of treatments."
Monday, February 02, 2009
Early menopause and hysterectomy may be one of the factors contributing to the development of FM
Increased frequencies of hysterectomy and early menopause in fibromyalgia patients: a comparative study.
Clin Rheumatol. 2009 Jan 24. [Epub ahead of print]
Pamuk ON, Dönmez S, Cakir N.
Eski Yildiz Cad. Park Apt. No. 24 Daire: 18, Besiktas-Istanbul, Turkey,.
PMID: 19169621
The objective was to determine the relationship between symptoms of fibromyalgia (FM) and early menopause and hysterectomy.
We included 115 postmenopausal patients with FM (mean age 54.6 +/- 7.6) and 67 rheumatoid arthritis (RA) patients (mean age 55.5 +/- 9) into our study. All patients were questioned about the severity of their symptoms of FM, anxiety, and depression by using a visual analog scale and FM impact questionnaire. Patients' history of menopause and hysterectomy were recorded.
Menopause ( 0.05). FM-related symptoms started in 30 patients (26.1%) with FM with menopause or within the first postmenopausal year. When the clinical features of FM patients whose symptoms started within the first menopausal year were compared to other FM patients; it was observed that the frequency of early menopause was higher in the former group (p = 0.048). Duke anxiety and depression score was higher in patients with hysterectomy whose FM symptoms started within the first year of post-hysterectomy than other FM patients (9.1 +/- 2.7 vs. 6.7 +/- 2.7, p = 0.022).
Early menopause and hysterectomy may be one of the factors contributing to the development of FM.
Clin Rheumatol. 2009 Jan 24. [Epub ahead of print]
Pamuk ON, Dönmez S, Cakir N.
Eski Yildiz Cad. Park Apt. No. 24 Daire: 18, Besiktas-Istanbul, Turkey,
PMID: 19169621
The objective was to determine the relationship between symptoms of fibromyalgia (FM) and early menopause and hysterectomy.
We included 115 postmenopausal patients with FM (mean age 54.6 +/- 7.6) and 67 rheumatoid arthritis (RA) patients (mean age 55.5 +/- 9) into our study. All patients were questioned about the severity of their symptoms of FM, anxiety, and depression by using a visual analog scale and FM impact questionnaire. Patients' history of menopause and hysterectomy were recorded.
Menopause ( 0.05). FM-related symptoms started in 30 patients (26.1%) with FM with menopause or within the first postmenopausal year. When the clinical features of FM patients whose symptoms started within the first menopausal year were compared to other FM patients; it was observed that the frequency of early menopause was higher in the former group (p = 0.048). Duke anxiety and depression score was higher in patients with hysterectomy whose FM symptoms started within the first year of post-hysterectomy than other FM patients (9.1 +/- 2.7 vs. 6.7 +/- 2.7, p = 0.022).
Early menopause and hysterectomy may be one of the factors contributing to the development of FM.
Saturday, January 24, 2009
Test for CFS
Dr Sarah Myhill MB BS, Upper Weston, Llangunllo, Knighton, Powys, LD7 1SL
Tel: 01547550331 Fax: 01547550339 E-mail: office@doctormyhill.co.uk Website: www.doctormyhill.co.uk
20 January 2009
PRESS RELEASE
A TEST FOR CHRONIC FATIGUE SYNDROME /
MYALGIC ENCEPHALOMYELITIS (CFS/ME)
The International Journal of Clinical and Experimental Medicine has published on line details of a biochemical test which measures energy supply to body cells and therefore fatigue levels in people with Chronic Fatigues Syndrome/Myalgic Encephalomyelitis (CFS/ME). The scientific paper entitled 'Chronic Fatigue Syndrome and Mitochondrial Dysfunction' is available here http://www.ijcem.com/files/IJCEM812001.pdf, Int J Clin Exp Med (2009) 2, 1-16
For treating the fatigue of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, doctors have been hampered by the lack of a good test. This scientific paper clearly shows that the fatigue of CFS/ME is a symptom of mitochondrial dysfunction. Mitochondria are the biochemical engines within every cell in the body, which supply energy to that cell. What is shown by this paper demonstrates that the more fatigued the patient, the worse is the mitochondrial dysfunction and vice versa. This means that we now have an objective measure of energy supply and therefore a test for one immediate cause of CFS/ME
This test has resulted from the brilliant and pioneering work of the internationally recognised Dr John McLaren-Howard of Acumen laboratories. He has taken cutting edge research biochemistry and applied them to the clinical conundrums thrown up by the illness known as CFS/ME.
This test can help distinguish between those people fatigued because of a biochemical problem in their mitochondria and those who are fatigued for other reasons. Other reasons include dietary causes (allergy and carbohydrate intolerance), hormonal reasons (such as borderline thyroid and adrenal function), poor antioxidant status, chronic insomnia, psycho-social causes such as anxiety and other causes.
Many doctors are already using this test and hundreds of patients are already taking the necessary nutritional supplements to support mitochondria. Many of these doctors and patients have observed significant clinical improvements. For some their health is so much improved that they have been able to lead normal lives and return to the workplace.
Dr Myhill, one of the authors of the paper, says "This test represents a huge breakthrough in the diagnosis and management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. This illness has already been classified as a neurological disease by the World Health Organisation under ICD 10 G93.3, but many doctors continue to treat CFS/ME as if it were a psychological condition. This has been enshrined in NICE Guidelines for treating CFS/ME because their recommendations are for psychological treatments including antidepressants, cognitive behaviour therapy and graded exercise therapy. This is completely inappropriate for patients who have mitochondrial pathology and indeed is likely to make the mitochondrial pathology even worse.
"A useful analogy is to compare your body with your car. The mitochondria represent the engine of that car, the diet represents the fuel that goes in the tank, the thyroid gland represents the accelerator pedal and the adrenal gland the gearbox of that car. Using cognitive behaviour therapy or graded
exercise to treat a patient with CFS/ME is akin to beating up the driver of the car when actually the car needs a re- conditioned engine, suitable fuel in the tank, resetting of the accelerator pedal, a new gear box or whatever. This test invalidates the psychological model of CFS/ME and clearly establishes this illness as having a physical basis. Sufferers of CFS/ME have known this for many years but now we have the biochemical basis to prove this.
"This study clearly shows that CFS/ME has a physical basis with the potential for correction through physical and biochemical interventions. Clinical experience has shown that the package of supplements to support mitochondrial dysfunction is effective and this will be the subject of further studies."
THE AUTHORS OF THE STUDY
Dr John McLaren-Howard is seen here receiving the Maberley Medal from the British Society for Ecological Medicine for his outstanding laboratory work in the field of Nutritional and Environmental Medicine. It is his brilliant work and skills which have made this research possible. He has developed many known biochemical research techniques and pioneered new tests for investigation of patients with fatigue syndromes and related disorders. These have proved vital in ascertaining the cause of disease. The ATP profile featured in this scientific paper is just one example of many cutting edge research tools which he has applied to establishing disease causation.
Dr Norman Booth is a retired physicist from Mansfield College, Oxford University. Dr Booth has been responsible for ensuring the necessary academic rigor to ensure publication in this scientific journal. He prepared all the necessary graphs and illustrations which clearly show the relationship between mitochondrial function and levels of fatigue
Dr Sarah Myhill is a clinical doctor with a special interest in the treatment of chronic fatigue syndrome/ME. She was responsible for collecting the original data from her patients, and from the biochemical tests, and noticing a relationship between the two.
We are all especially grateful to those CFS/ME patients and non-patients who all co-operated fully without whom none of this would have been possible.
- ENDS -
For further information, please contact
Dr Sarah Myhill, Telephone 0154755033 Email office@doctormyhill.co.uk
Dr Sarah Myhill MB BS, Upper Weston, Llangunllo, Knighton, Powys, LD7 1SL
Tel: 01547550331 Fax: 01547550339 E-mail: office@doctormyhill.co.uk Website: www.doctormyhill.co.uk
The cost of the Mitochondrial Function Profile, which will now include the mitochondrial function studies (ATP profiles), levels of Co-enzyme Q10, glutathione peroxidase, zinc copper SODase, manganese SODase and extracellular SODase together with NAD levels and cell-free DNA is £195, plus £50.00 for the letter of interpretation to the GP.
John McLaren Howard now has specialist equipment to refine these tests further, particularly in respect of oxidative phosphorylation.
Tel: 01547550331 Fax: 01547550339 E-mail: office@doctormyhill.co.uk Website: www.doctormyhill.co.uk
20 January 2009
PRESS RELEASE
A TEST FOR CHRONIC FATIGUE SYNDROME /
MYALGIC ENCEPHALOMYELITIS (CFS/ME)
The International Journal of Clinical and Experimental Medicine has published on line details of a biochemical test which measures energy supply to body cells and therefore fatigue levels in people with Chronic Fatigues Syndrome/Myalgic Encephalomyelitis (CFS/ME). The scientific paper entitled 'Chronic Fatigue Syndrome and Mitochondrial Dysfunction' is available here http://www.ijcem.com/files/IJCEM812001.pdf, Int J Clin Exp Med (2009) 2, 1-16
For treating the fatigue of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, doctors have been hampered by the lack of a good test. This scientific paper clearly shows that the fatigue of CFS/ME is a symptom of mitochondrial dysfunction. Mitochondria are the biochemical engines within every cell in the body, which supply energy to that cell. What is shown by this paper demonstrates that the more fatigued the patient, the worse is the mitochondrial dysfunction and vice versa. This means that we now have an objective measure of energy supply and therefore a test for one immediate cause of CFS/ME
This test has resulted from the brilliant and pioneering work of the internationally recognised Dr John McLaren-Howard of Acumen laboratories. He has taken cutting edge research biochemistry and applied them to the clinical conundrums thrown up by the illness known as CFS/ME.
This test can help distinguish between those people fatigued because of a biochemical problem in their mitochondria and those who are fatigued for other reasons. Other reasons include dietary causes (allergy and carbohydrate intolerance), hormonal reasons (such as borderline thyroid and adrenal function), poor antioxidant status, chronic insomnia, psycho-social causes such as anxiety and other causes.
Many doctors are already using this test and hundreds of patients are already taking the necessary nutritional supplements to support mitochondria. Many of these doctors and patients have observed significant clinical improvements. For some their health is so much improved that they have been able to lead normal lives and return to the workplace.
Dr Myhill, one of the authors of the paper, says "This test represents a huge breakthrough in the diagnosis and management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. This illness has already been classified as a neurological disease by the World Health Organisation under ICD 10 G93.3, but many doctors continue to treat CFS/ME as if it were a psychological condition. This has been enshrined in NICE Guidelines for treating CFS/ME because their recommendations are for psychological treatments including antidepressants, cognitive behaviour therapy and graded exercise therapy. This is completely inappropriate for patients who have mitochondrial pathology and indeed is likely to make the mitochondrial pathology even worse.
"A useful analogy is to compare your body with your car. The mitochondria represent the engine of that car, the diet represents the fuel that goes in the tank, the thyroid gland represents the accelerator pedal and the adrenal gland the gearbox of that car. Using cognitive behaviour therapy or graded
exercise to treat a patient with CFS/ME is akin to beating up the driver of the car when actually the car needs a re- conditioned engine, suitable fuel in the tank, resetting of the accelerator pedal, a new gear box or whatever. This test invalidates the psychological model of CFS/ME and clearly establishes this illness as having a physical basis. Sufferers of CFS/ME have known this for many years but now we have the biochemical basis to prove this.
"This study clearly shows that CFS/ME has a physical basis with the potential for correction through physical and biochemical interventions. Clinical experience has shown that the package of supplements to support mitochondrial dysfunction is effective and this will be the subject of further studies."
THE AUTHORS OF THE STUDY
Dr John McLaren-Howard is seen here receiving the Maberley Medal from the British Society for Ecological Medicine for his outstanding laboratory work in the field of Nutritional and Environmental Medicine. It is his brilliant work and skills which have made this research possible. He has developed many known biochemical research techniques and pioneered new tests for investigation of patients with fatigue syndromes and related disorders. These have proved vital in ascertaining the cause of disease. The ATP profile featured in this scientific paper is just one example of many cutting edge research tools which he has applied to establishing disease causation.
Dr Norman Booth is a retired physicist from Mansfield College, Oxford University. Dr Booth has been responsible for ensuring the necessary academic rigor to ensure publication in this scientific journal. He prepared all the necessary graphs and illustrations which clearly show the relationship between mitochondrial function and levels of fatigue
Dr Sarah Myhill is a clinical doctor with a special interest in the treatment of chronic fatigue syndrome/ME. She was responsible for collecting the original data from her patients, and from the biochemical tests, and noticing a relationship between the two.
We are all especially grateful to those CFS/ME patients and non-patients who all co-operated fully without whom none of this would have been possible.
- ENDS -
For further information, please contact
Dr Sarah Myhill, Telephone 0154755033 Email office@doctormyhill.co.uk
Dr Sarah Myhill MB BS, Upper Weston, Llangunllo, Knighton, Powys, LD7 1SL
Tel: 01547550331 Fax: 01547550339 E-mail: office@doctormyhill.co.uk Website: www.doctormyhill.co.uk
The cost of the Mitochondrial Function Profile, which will now include the mitochondrial function studies (ATP profiles), levels of Co-enzyme Q10, glutathione peroxidase, zinc copper SODase, manganese SODase and extracellular SODase together with NAD levels and cell-free DNA is £195, plus £50.00 for the letter of interpretation to the GP.
John McLaren Howard now has specialist equipment to refine these tests further, particularly in respect of oxidative phosphorylation.
The use of practice nurses in the management of ME/CFS
Abstract | Practice Nurses' views of their role in the management of Chronic Fatigue Syndrome/Myalagic Encephalitis: a qualitative study: "Practice Nurses' views of their role in the management of Chronic Fatigue Syndrome/Myalagic Encephalitis: a qualitative studyPractice Nurses' views of their role in the management of Chronic Fatigue Syndrome/Myalagic Encephalitis: a qualitative study"
Abstract (provisional)
Background
NICE guidelines suggest that patients with Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME) should be managed in Primary Care. Practice Nurses are increasingly being involved in the management of long-term conditions, so are likely to also have a growing role in managing CFS/ME. However their attitudes to, and experiences of patients with CFS/ME and its management must be explored to understand what barriers may exist in developing their role for this group of patients. The aim of this study was to explore Practice Nurses' understanding and beliefs about CFS/ME and its management.
Methods
Semi-structured interviews with 29 Practice Nurses. Interviews were transcribed verbatim and an iterative approach used to develop themes from the dataset.
Results
Practice nurses had limited understanding about CFS/ME which had been largely gained through contact with patients, friends, personal experiences and the media rather than formal training. They had difficulty seeing CFS/ME as a long term condition. They did identify a potential role they could have in management of CFS/ME but devalued their own skills in psychological intervention, and suggested counselling as an appropriate therapeutic option. They recognised a need for further training and on going supervision from both medical and psychological colleagues. Some viewed the condition as contentious and held pejorative views about CFS/ME. Such scepticism and negative attitudes will be a significant barrier to the management of patients with CFS/ME in primary care.
Conclusions
The current role of Practice Nurses in the ongoing management of patients with CFS/ME is limited. Practice Nurses have little understanding of the evidence-base for treatment of CFS/ME, particularly psychological therapies, describing management options in terms of advice giving, self-help or counselling. Practice Nurses largely welcomed the potential development of their role in this area, but identified barriers and training needs which must be addressed to enable them to feel confident managing of patients with this condition. Training must begin by addressing negative attitudes to patients with CFS/ME.
Abstract (provisional)
Background
NICE guidelines suggest that patients with Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME) should be managed in Primary Care. Practice Nurses are increasingly being involved in the management of long-term conditions, so are likely to also have a growing role in managing CFS/ME. However their attitudes to, and experiences of patients with CFS/ME and its management must be explored to understand what barriers may exist in developing their role for this group of patients. The aim of this study was to explore Practice Nurses' understanding and beliefs about CFS/ME and its management.
Methods
Semi-structured interviews with 29 Practice Nurses. Interviews were transcribed verbatim and an iterative approach used to develop themes from the dataset.
Results
Practice nurses had limited understanding about CFS/ME which had been largely gained through contact with patients, friends, personal experiences and the media rather than formal training. They had difficulty seeing CFS/ME as a long term condition. They did identify a potential role they could have in management of CFS/ME but devalued their own skills in psychological intervention, and suggested counselling as an appropriate therapeutic option. They recognised a need for further training and on going supervision from both medical and psychological colleagues. Some viewed the condition as contentious and held pejorative views about CFS/ME. Such scepticism and negative attitudes will be a significant barrier to the management of patients with CFS/ME in primary care.
Conclusions
The current role of Practice Nurses in the ongoing management of patients with CFS/ME is limited. Practice Nurses have little understanding of the evidence-base for treatment of CFS/ME, particularly psychological therapies, describing management options in terms of advice giving, self-help or counselling. Practice Nurses largely welcomed the potential development of their role in this area, but identified barriers and training needs which must be addressed to enable them to feel confident managing of patients with this condition. Training must begin by addressing negative attitudes to patients with CFS/ME.
Tuesday, January 13, 2009
Judicial Review NICE Guideline for CFS/ME London UK February
How to help:
On February the 11th & 12th, there will be a Judicial Review into
the NICE Guideline for CFS/ME at the High Court in London
It's only a month until then!
I've had a lot of emails from people asking what they can do to help.
Here are some ideas.
Come to court for one or both of the days. Turning up for the
judicial review will make a difference.
* Have you contacted your local group leader to see if other
people are going? It may be possible to get a ride to London from
other people in your support group.
* Why not hire a mini-bus or people carrier for one or both of
the days and organise people from your area?
* Have you checked to see if there are any cheap rail fares to
London for one or both days?
* Have you booked a hotel for a night or two?
* Can you offer a seat to someone else from your area? Contact
your local group and see who would like to come with London with you.
Information on transport, parking and hotels around the Royal Courts
of Justice and Hotels can be found in this website
http://www.nicemecourt.co.uk/The_High_Court.htm
(look on the right hand column under "Hotels and Parking")
If you cannot get to the hearing why not help your local group
organise transport, parking or accommodation for those who need it.
* You could also consider making a donation to send other people.
* Do you have a family member who could attend the court to
represent you? If they need to ask for leave (from work) they may
need to do so now. Even if they can "only" come to the court for a
morning or an afternoon it will help.
* Can you offer a bed for the night for people travelling to London
* Can you act as a Steward on one of the days (to help people
find their way who are coming to the court)
Please do not hesitate to contact me on this address if you can help
out at all. We really do need all the help we can get to make this a success.
contact@nicemecourt.co.uk
Kindest regards to all from,
Annette Barclay
(unofficial Supporter of the Judicial Review)
On February the 11th & 12th, there will be a Judicial Review into
the NICE Guideline for CFS/ME at the High Court in London
It's only a month until then!
I've had a lot of emails from people asking what they can do to help.
Here are some ideas.
Come to court for one or both of the days. Turning up for the
judicial review will make a difference.
* Have you contacted your local group leader to see if other
people are going? It may be possible to get a ride to London from
other people in your support group.
* Why not hire a mini-bus or people carrier for one or both of
the days and organise people from your area?
* Have you checked to see if there are any cheap rail fares to
London for one or both days?
* Have you booked a hotel for a night or two?
* Can you offer a seat to someone else from your area? Contact
your local group and see who would like to come with London with you.
Information on transport, parking and hotels around the Royal Courts
of Justice and Hotels can be found in this website
http://www.nicemecourt.co.uk/The_High_Court.htm
(look on the right hand column under "Hotels and Parking")
If you cannot get to the hearing why not help your local group
organise transport, parking or accommodation for those who need it.
* You could also consider making a donation to send other people.
* Do you have a family member who could attend the court to
represent you? If they need to ask for leave (from work) they may
need to do so now. Even if they can "only" come to the court for a
morning or an afternoon it will help.
* Can you offer a bed for the night for people travelling to London
* Can you act as a Steward on one of the days (to help people
find their way who are coming to the court)
Please do not hesitate to contact me on this address if you can help
out at all. We really do need all the help we can get to make this a success.
contact@nicemecourt.co.uk
Kindest regards to all from,
Annette Barclay
(unofficial Supporter of the Judicial Review)
Saturday, January 10, 2009
Finally!
My GP says I definitly have chronic fatigue syndrome! Plus as my mood is ok, not depressed, to cut down the main antidepresent, Mirtazapine, to see if that relieves some of the extreme fatigue. More blood tests Monday to check thyroid function and the usual range of levels. Am to go back in a month to see how mirtazapine change going - but a great breakthrough finally.
A number of events led me to write out my symptoms, how they affect me and what I try to do to have some quality of life. At a regular job centre interview they assumed my main problem is anxiety, at the colonoscopy clinc that I have COPD - tests last year showed lung function fine - plus being treat as a moron by various consultants, I thought WTF is going on here???? So this is what I wrote:
"Reason for visit: to review all symptoms rather than consult re individual symptom flare up with the goal of improving overall health in order to improve my quality of life which is currently very poor.
For example if I add one extra activity to usual routine such as changing the bed I end up semi-comatose by 6pm unable to keep eyes open, too tired to cook, think etc etc rarely leave house for anything apart from shopping, coffee at the Café is a rare treat. Would love to be more active, develop friendships, and consider work eventually. Now I am sometimes even too tired and incoherent to chat online with my daughter- without a drink in sight!
Symptoms - worst first
Fatigue - physical and mental
Example – emulsioned one wall to finish living room before Xmas, took a full week of short sessions as could not sustain activity more than ½ hour first day reducing over subsequent days. Meant no energy for cooking.
Brain fog, struggle for words - names especially. Bad days unable to start Guardian crossword (when at Uni was reknowned for completing in under 5 mins) or string sentences together. Very poor at dates.
Cough, mucous, post nasal drip – pretty bad, using mountains of toilet roll though mucous is clear unlke hay fever runny nose.
Irritable bladder – frequency and urgency, very noticeable on a morning. Fizzy wee
IBS – stopped mebeverine after phone consultation, back on this week as pain, wind, diarrhoea back
Headaches - migraines, mainly visual & pain left temple/ eye, weird semi anaesthetic numb ache/ hot sensation same area. Temperature type headache. Poor sleep headache.
Muscle/ joint pain - feels like layer under skin bruised
Blurred vision – with and without headache, worse when tired.
Noise & light - rattle my brain. E.g. Oncoming dipped headlights a big problem. Increased sound on adverts hurt.
Sleep – nortryptaline helped immensely but still wake 5 or more times a night, wake tired and unrefreshed.
Mood – OK, had a few very low weepy, irrational days in Dec but ate cows cheese 4 days running (craving) – stopped cheese, ok within 2 days.
Faulty “thermostat” – hot when other cold and vice versa. Extreme clothes & bed drenching sweats as mentioned last visit stopped after antibiotics.
Weird stuff
Tight, uncomfortable band at top of stomach, pushing up under ribs esp right side. Worse after eating, however little.
Arms & legs gone very thin, Susie calls me chicken legs now. Stomach distended.
Eyebrows & pubic hair disappearing, bit young for this?
Eyelids discoloured brown – used to them being black
No libido
Salt craving
My coping strategy
Pace myself
Stay mentally active – horse racing website in hope of online work again in future. Crosswords, scrabble, read though can now take weeks to finish one book compared to previous prodigious consumption.
Diet – dairy free – doing this in 199? Was turning point for extreme IBS etc. All home cooked, bulk cook and freeze when can for days when cannot cook.
Goal set - not greatest lover of housework but try to add an additional job that will give sense of satisfaction. Eg today cleared leaves off path for for 10 mins by the end could barely llift leaves into compost bin.
Exercise – introduction (approx 12 mins) to old aerobics video 2 –3 times a week, any more and wake up feeling like flu starting next day. Walk - length of High St often about the limit before feels like wading through treacle.
Try not to go back to bed in the day
No alcohol week days.
Cut down smoking
Note: I think I was able to lead a normal life until 1991 despite severe migraines (full blown 2/3 days dark room/sick jobs) and IBS.
Possible turning points: 1990 I sat my finals at Durham, GP prescribed beta-blockers to avoid migraines disrupting them, passed 2.1 BA Hons. Awarded Durham studentship for postgrad degree. Autumn term strange red raised rash bottom both legs, unnamed virus diagnosed. Wading through treacle feeling and extreme fatigue started, I told GP thought I was depressed did then become suicidal & hospitalised and have only had some short periods of feeling well since then. "
A number of events led me to write out my symptoms, how they affect me and what I try to do to have some quality of life. At a regular job centre interview they assumed my main problem is anxiety, at the colonoscopy clinc that I have COPD - tests last year showed lung function fine - plus being treat as a moron by various consultants, I thought WTF is going on here???? So this is what I wrote:
"Reason for visit: to review all symptoms rather than consult re individual symptom flare up with the goal of improving overall health in order to improve my quality of life which is currently very poor.
For example if I add one extra activity to usual routine such as changing the bed I end up semi-comatose by 6pm unable to keep eyes open, too tired to cook, think etc etc rarely leave house for anything apart from shopping, coffee at the Café is a rare treat. Would love to be more active, develop friendships, and consider work eventually. Now I am sometimes even too tired and incoherent to chat online with my daughter- without a drink in sight!
Symptoms - worst first
Fatigue - physical and mental
Example – emulsioned one wall to finish living room before Xmas, took a full week of short sessions as could not sustain activity more than ½ hour first day reducing over subsequent days. Meant no energy for cooking.
Brain fog, struggle for words - names especially. Bad days unable to start Guardian crossword (when at Uni was reknowned for completing in under 5 mins) or string sentences together. Very poor at dates.
Cough, mucous, post nasal drip – pretty bad, using mountains of toilet roll though mucous is clear unlke hay fever runny nose.
Irritable bladder – frequency and urgency, very noticeable on a morning. Fizzy wee
IBS – stopped mebeverine after phone consultation, back on this week as pain, wind, diarrhoea back
Headaches - migraines, mainly visual & pain left temple/ eye, weird semi anaesthetic numb ache/ hot sensation same area. Temperature type headache. Poor sleep headache.
Muscle/ joint pain - feels like layer under skin bruised
Blurred vision – with and without headache, worse when tired.
Noise & light - rattle my brain. E.g. Oncoming dipped headlights a big problem. Increased sound on adverts hurt.
Sleep – nortryptaline helped immensely but still wake 5 or more times a night, wake tired and unrefreshed.
Mood – OK, had a few very low weepy, irrational days in Dec but ate cows cheese 4 days running (craving) – stopped cheese, ok within 2 days.
Faulty “thermostat” – hot when other cold and vice versa. Extreme clothes & bed drenching sweats as mentioned last visit stopped after antibiotics.
Weird stuff
Tight, uncomfortable band at top of stomach, pushing up under ribs esp right side. Worse after eating, however little.
Arms & legs gone very thin, Susie calls me chicken legs now. Stomach distended.
Eyebrows & pubic hair disappearing, bit young for this?
Eyelids discoloured brown – used to them being black
No libido
Salt craving
My coping strategy
Pace myself
Stay mentally active – horse racing website in hope of online work again in future. Crosswords, scrabble, read though can now take weeks to finish one book compared to previous prodigious consumption.
Diet – dairy free – doing this in 199? Was turning point for extreme IBS etc. All home cooked, bulk cook and freeze when can for days when cannot cook.
Goal set - not greatest lover of housework but try to add an additional job that will give sense of satisfaction. Eg today cleared leaves off path for for 10 mins by the end could barely llift leaves into compost bin.
Exercise – introduction (approx 12 mins) to old aerobics video 2 –3 times a week, any more and wake up feeling like flu starting next day. Walk - length of High St often about the limit before feels like wading through treacle.
Try not to go back to bed in the day
No alcohol week days.
Cut down smoking
Note: I think I was able to lead a normal life until 1991 despite severe migraines (full blown 2/3 days dark room/sick jobs) and IBS.
Possible turning points: 1990 I sat my finals at Durham, GP prescribed beta-blockers to avoid migraines disrupting them, passed 2.1 BA Hons. Awarded Durham studentship for postgrad degree. Autumn term strange red raised rash bottom both legs, unnamed virus diagnosed. Wading through treacle feeling and extreme fatigue started, I told GP thought I was depressed did then become suicidal & hospitalised and have only had some short periods of feeling well since then. "
Tuesday, January 06, 2009
M.E. Resolutions
I intend getting in touch about a donation button and the contact/support offered as cannot find these on the website. .
January 2009: ME Free For All: "M.E. Resolutions"
[A version of this letter appeared as Battle to beat 'yuppie flu' in the Bristol Evening Post, 5 January 2009]
Our primary resolution, in 2009, for people affected by M.E. (Myalgic Encephalomyelitis) is to render "Yuppie flu" as extinct as the dodo.
We resolve to make people more aware of this dreadfully disabling illness, not just once a year, on M.E. Awareness Day in May, but on every one of the other 364 days, by properly educating people, who may have had no experience as a sufferer, carer, doctor, friend or neighbour, with the facts as we know them: that it is not mere tiredness; it is certainly not laziness or malingering, in people who were previously healthy and had a good work or school record but is a serious neurological illness with a range of symptoms of varying severity, including permanent muscle pain, cognitive dysfunction and dizziness, which "chronic fatigue" alone does not encompass and we'll show you how it devastates lives, isolates people, fractures relationships, breaks hearts and even takes life itself away from some poor souls. We shall no longer be slighted by ignorance.
We all agree that we need a definitive diagnostic test - perhaps a blood test or a scan - to identify M.E. as a distinct illness and that's our goal. Since there is no public funding to conduct crucial biomedical research, we are resolved to do it ourselves, for nothing but the willing, voluntary labour of those who have some background in research and the assistance of those who may not have any experience but are keen to help. We already have some members in our team, who are skilled in experimental design and statistical analysis but we want more people of all sorts - not only boffins and eggheads - committed to serious biomedical research that is so desperately needed.
In the meantime, we resolve to provide as much support for M.E. sufferers, especially those who are isolated and housebound. You can get in touch with us in every known way: write, e-mail, phone and, now, Skype, which is mushrooming, since we launched our service especially for Christmas. Skype is free to computer broadband users. It's easy to install from www.skype.com but if you can't work it out, contact us and we'll get you started. The basics are free but for less than £20, you can add a web cam and let people see you (unless you're having a bad hair day!) and you can switch it off whenever you want. You can talk about anything you like, including this awful illness, or about any problems, such as benefits, with people who understand because they're in the same boat. If you haven't got much of a voice yourself, or feel out of your depth, with doctors or civil servants and need someone to speak for you, we'll find someone to help you through it. There'll be time for some fun too.
We'll also tell you straight what are the best things, in our experience and in the light of reliable research, to do and whether you should avoid certain treatments and questionable advice, which may do you no good, might even make you worse and will almost certainly make you poorer for no benefit to your health.
These are our resolutions for 2009 and will be for every year until we succeed, on behalf of hundreds of thousands of people in this country and millions throughout the World.
If you can help us in any way - with administration, computer work, the research, advocacy, being a listening ear, making the tea, or anything else we could use - or if you are one of the people who needs the help, get in touch today and make our resolutions become reality.
Yours sincerely
Dr John H Greensmith
ME Free For All. org
January 2009: ME Free For All: "M.E. Resolutions"
[A version of this letter appeared as Battle to beat 'yuppie flu' in the Bristol Evening Post, 5 January 2009]
Our primary resolution, in 2009, for people affected by M.E. (Myalgic Encephalomyelitis) is to render "Yuppie flu" as extinct as the dodo.
We resolve to make people more aware of this dreadfully disabling illness, not just once a year, on M.E. Awareness Day in May, but on every one of the other 364 days, by properly educating people, who may have had no experience as a sufferer, carer, doctor, friend or neighbour, with the facts as we know them: that it is not mere tiredness; it is certainly not laziness or malingering, in people who were previously healthy and had a good work or school record but is a serious neurological illness with a range of symptoms of varying severity, including permanent muscle pain, cognitive dysfunction and dizziness, which "chronic fatigue" alone does not encompass and we'll show you how it devastates lives, isolates people, fractures relationships, breaks hearts and even takes life itself away from some poor souls. We shall no longer be slighted by ignorance.
We all agree that we need a definitive diagnostic test - perhaps a blood test or a scan - to identify M.E. as a distinct illness and that's our goal. Since there is no public funding to conduct crucial biomedical research, we are resolved to do it ourselves, for nothing but the willing, voluntary labour of those who have some background in research and the assistance of those who may not have any experience but are keen to help. We already have some members in our team, who are skilled in experimental design and statistical analysis but we want more people of all sorts - not only boffins and eggheads - committed to serious biomedical research that is so desperately needed.
In the meantime, we resolve to provide as much support for M.E. sufferers, especially those who are isolated and housebound. You can get in touch with us in every known way: write, e-mail, phone and, now, Skype, which is mushrooming, since we launched our service especially for Christmas. Skype is free to computer broadband users. It's easy to install from www.skype.com but if you can't work it out, contact us and we'll get you started. The basics are free but for less than £20, you can add a web cam and let people see you (unless you're having a bad hair day!) and you can switch it off whenever you want. You can talk about anything you like, including this awful illness, or about any problems, such as benefits, with people who understand because they're in the same boat. If you haven't got much of a voice yourself, or feel out of your depth, with doctors or civil servants and need someone to speak for you, we'll find someone to help you through it. There'll be time for some fun too.
We'll also tell you straight what are the best things, in our experience and in the light of reliable research, to do and whether you should avoid certain treatments and questionable advice, which may do you no good, might even make you worse and will almost certainly make you poorer for no benefit to your health.
These are our resolutions for 2009 and will be for every year until we succeed, on behalf of hundreds of thousands of people in this country and millions throughout the World.
If you can help us in any way - with administration, computer work, the research, advocacy, being a listening ear, making the tea, or anything else we could use - or if you are one of the people who needs the help, get in touch today and make our resolutions become reality.
Yours sincerely
Dr John H Greensmith
ME Free For All. org
Childhood trauma associated with chronic fatigue syndrome
Childhood trauma associated with chronic fatigue syndrome:
Childhood trauma associated with chronic fatigue syndrome
January 5th, 2009 in Medicine & Health / Diseases
Individuals who experience trauma during childhood appear more likely to develop chronic fatigue syndrome as adults, according to a report in the January issue of Archives of General Psychiatry, one of the JAMA/Archives journals. In addition, neuroendocrine dysfunction—or abnormalities in the interaction between the nervous system and endocrine system—appears to be associated with childhood trauma in those with chronic fatigue syndrome, suggesting a biological pathway by which early experiences influence adult vulnerability to illness.
Chronic fatigue syndrome affects as many as 2.5 percent of U.S. adults, according to background information in the article. Little is known about the causes and development of the condition. Risk factors include female sex, genetic predisposition, certain personality traits and physical and emotional stress. "Stress in interaction with other risk factors likely triggers chronic fatigue syndrome symptoms through its effects on central nervous, neuroendocrine and immune systems, resulting in functional changes that lead to fatigue and associated symptoms such as sleep disruption, cognitive impairment and pain," the authors write. "However, obviously not every individual exposed to a stressor goes on to develop chronic fatigue syndrome, and it is therefore of critical importance to understand sources of individual differences in vulnerability to the pathogenic effects of stress."
Christine Heim, Ph.D., of Emory University School of Medicine, Atlanta, and colleagues studied 113 patients with chronic fatigue syndrome and 124 healthy individuals who served as controls. Participants—who were drawn from a general sample of 19,381 adults residents of Georgia—reported whether they had experienced childhood trauma, including sexual, physical and emotional abuse or emotional and physical neglect. They also underwent screening for depression, anxiety and post-traumatic stress disorder and were tested for levels of the hormone cortisol in their saliva. Low levels may indicate decreased function of the body's main neuroendocrine stress response system, the authors note.
Individuals with chronic fatigue syndrome reported higher levels of childhood trauma—exposure to trauma was associated with a six-fold increase in the risk of having the condition. Sexual abuse, emotional abuse and emotional neglect were most closely associated with chronic fatigue syndrome. Patients with the syndrome also were more likely than controls to have depression, anxiety and post-traumatic stress disorder.
Cortisol levels were decreased in patients with chronic fatigue syndrome who experienced childhood trauma, but not in those with chronic fatigue syndrome who had not been subjected to trauma. Therefore, stress early in life may cause a biological susceptibility to chronic fatigue syndrome, the authors note.
"Our results confirm childhood trauma as an important risk factor of chronic fatigue syndrome," they write. "In addition, neuroendocrine dysfunction, a hallmark feature of chronic fatigue syndrome, appears to be associated with childhood trauma. This possibly reflects a biological correlate of vulnerability due to early developmental insults. Our findings are critical to inform pathophysiological research and to devise targets for the prevention of chronic fatigue syndrome."
Source: JAMA and Archives Journals
Childhood trauma associated with chronic fatigue syndrome
January 5th, 2009 in Medicine & Health / Diseases
Individuals who experience trauma during childhood appear more likely to develop chronic fatigue syndrome as adults, according to a report in the January issue of Archives of General Psychiatry, one of the JAMA/Archives journals. In addition, neuroendocrine dysfunction—or abnormalities in the interaction between the nervous system and endocrine system—appears to be associated with childhood trauma in those with chronic fatigue syndrome, suggesting a biological pathway by which early experiences influence adult vulnerability to illness.
Chronic fatigue syndrome affects as many as 2.5 percent of U.S. adults, according to background information in the article. Little is known about the causes and development of the condition. Risk factors include female sex, genetic predisposition, certain personality traits and physical and emotional stress. "Stress in interaction with other risk factors likely triggers chronic fatigue syndrome symptoms through its effects on central nervous, neuroendocrine and immune systems, resulting in functional changes that lead to fatigue and associated symptoms such as sleep disruption, cognitive impairment and pain," the authors write. "However, obviously not every individual exposed to a stressor goes on to develop chronic fatigue syndrome, and it is therefore of critical importance to understand sources of individual differences in vulnerability to the pathogenic effects of stress."
Christine Heim, Ph.D., of Emory University School of Medicine, Atlanta, and colleagues studied 113 patients with chronic fatigue syndrome and 124 healthy individuals who served as controls. Participants—who were drawn from a general sample of 19,381 adults residents of Georgia—reported whether they had experienced childhood trauma, including sexual, physical and emotional abuse or emotional and physical neglect. They also underwent screening for depression, anxiety and post-traumatic stress disorder and were tested for levels of the hormone cortisol in their saliva. Low levels may indicate decreased function of the body's main neuroendocrine stress response system, the authors note.
Individuals with chronic fatigue syndrome reported higher levels of childhood trauma—exposure to trauma was associated with a six-fold increase in the risk of having the condition. Sexual abuse, emotional abuse and emotional neglect were most closely associated with chronic fatigue syndrome. Patients with the syndrome also were more likely than controls to have depression, anxiety and post-traumatic stress disorder.
Cortisol levels were decreased in patients with chronic fatigue syndrome who experienced childhood trauma, but not in those with chronic fatigue syndrome who had not been subjected to trauma. Therefore, stress early in life may cause a biological susceptibility to chronic fatigue syndrome, the authors note.
"Our results confirm childhood trauma as an important risk factor of chronic fatigue syndrome," they write. "In addition, neuroendocrine dysfunction, a hallmark feature of chronic fatigue syndrome, appears to be associated with childhood trauma. This possibly reflects a biological correlate of vulnerability due to early developmental insults. Our findings are critical to inform pathophysiological research and to devise targets for the prevention of chronic fatigue syndrome."
Source: JAMA and Archives Journals
Tuesday, December 30, 2008
Northallerton and District ME Support Group
ME Research UK — Group friends: "Northallerton and District ME Support Group
The group was re-launched in September 2006. It is now run by local people with ME. We welcome anyone living in Northallerton itself or any of the nearby towns and villages who have an interest in ME — sufferers, their families and carers. We are a small, friendly/informal group. We meet to provide mutual support and exchange information whilst enjoying a chat and refreshments.
Meetings: The group meets on a monthly basis (usually the first Monday of the month — except bank holidays when an alternative date will be chosen) in a central Northallerton location. Meetings take place from 1.30 to 3.30 pm. The meeting room has full disabled access with parking and transport links nearby. If you would like to come along to a meeting or find out more about the group, please contact Gillian Dodsworth (Chairperson), weekdays between 1 and 6.30 pm.
Tel: 01609 779452."
The group was re-launched in September 2006. It is now run by local people with ME. We welcome anyone living in Northallerton itself or any of the nearby towns and villages who have an interest in ME — sufferers, their families and carers. We are a small, friendly/informal group. We meet to provide mutual support and exchange information whilst enjoying a chat and refreshments.
Meetings: The group meets on a monthly basis (usually the first Monday of the month — except bank holidays when an alternative date will be chosen) in a central Northallerton location. Meetings take place from 1.30 to 3.30 pm. The meeting room has full disabled access with parking and transport links nearby. If you would like to come along to a meeting or find out more about the group, please contact Gillian Dodsworth (Chairperson), weekdays between 1 and 6.30 pm.
Tel: 01609 779452."
CFS and medical textbooks, Doctor education, patients testify
Oh, please, yes, please! I am sick and tired of being treat like a moron by the medical profession or as if my condition is all my own fault...lets get them educated!
Just one extract from what seems a very important conference. CHRONIC FATIGUE SYNDROME ADVISORY COMMITTEE
http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac20081028min.pdf
"Dr. Jason's Presentation
Dr. Jason said that he also planned to give his presentation at the Reno
IACFS/ME conference.
He noted that there are about 200 publications each year on CFS, according
to Freidberg and Associates. It is unclear how CFS is represented in the
published literature, particularly with medical textbooks. Medical textbooks
are important because they are:
. A cornerstone in the training of medical staff and students.
. A main source of references and reviews for medical professionals.
. A source of information on coding and treating a variety of illnesses.
The objective of Dr. Jason's study was to evaluate the coverage of CFS in
medical textbooks to determine the extent and comprehensiveness of CFS
information.
Textbooks were gathered from a number of sources including university
medical school libraries and medical school book stores. The study looked at
129 textbooks in different specialty areas. The areas of interest in the
study were the number of pages and percent of space allotted to CFS. Dr.
Jason discussed pages in his presentation. The comprehensiveness and extent
of representation of CFS information was included, and CFS was compared with
to other illnesses.
Page representation:
. Looked at a total of 140,552 pages in 129 textbooks. Always took the most
recent version of a textbook, primarily within the last seven or eight
years.
. CFS was represented on 125 pages, or .089 percent of the potential pages
examined.
. Holistic, psychiatry, and internal medicine texts had the highest
percentage of mention of CFS; endocrinology, obstetrics, and emergency
medicine the least.
If CFS was mentioned, the study also examined information concerning:
. The illness ideology.
. The probability of Axis 1 disorder.
. Treatment options.
. Prevalence rate.
. Inclusion of ME terminology.
Results:
. 53 textbooks (41 percent) of the 129 textbooks had some mention of CFS.
The problem, of course, was that there was very little mention.
. 42 textbooks (32 percent) had something about etiology. Sometimes it was
biogenic, sometimes psychogenic, sometimes both.
. 17 textbooks (13 percent) mentioned the high probability of Axis 1
Disorder [a major psychiatric problem].
. 25 textbooks (19 percent) mentioned some criteria.
. 37 textbooks (28.7 percent) indicated some treatment associated with CFS.
The most common were cognitive behavior therapy, anti-depressants, graded
exercise or exercise, and supplements.
. Only 18 textbooks (14 percent) had any mention of prevalence rates.
. Only 19 books (14.8 percent) had any mention of ME terminology.
Summarizing this part of the study: Critical domains within CFS are not well
represented in medical textbooks, either in terms of etiology, criterion, or
treatment options.
Illness Comparison
Next the study analyzed a random sample of 45 books from the 129 to compare
CFS with illnesses that are much more prevalent-cancer and diabetes-and with
illnesses that are less prevalent-MS [multiple sclerosis] and Lyme disease.
Even the illnesses that are less prevalent than CFS have greater coverage in
medical textbooks. CFS appeared in 24 percent of the 41,922 pages while Lyme
disease appeared in 61.8 percent and MS, 53 percent.
Major findings:
. CFS is underrepresented in medical textbooks.
. CFS is also given fewer pages than diseases that are less prevalent.
Why does this matter?
. 77 percent of CFS patients reported they had experienced a negative
interaction with a healthcare provider.
. 66 percent believe that their condition had been made worse after seeking
care from their doctors.
. Family physicians feel the continuing education and training they received
leave them unable to diagnose and manage CFS.
. 48 percent of general practitioners did not feel confident that they could
diagnose CFS.
Conclusions
. Healthcare professionals need to be adequately trained and provided with
up-to-date, non-biased information in their textbooks.
. Medical textbooks may be a critical component in raising CFS awareness and
there is a clear need for this illness to receive more representation.
Additional points of interest:
Migraines plus CFS suggests:
• Autonomic abnormalities
•Neurogenic inflammation
very likely contribute to the high level of overlap between migraines and CFS.
From a treatment perspective, if you identify migraines in 88 percent of your CFS people, you should get them started on appropriate therapy.
From this we wanted to look more at the autonomic nervous system.
Hypothesis: Central nervous system dysfunction is a critical component of CFS and related syndromes such as FM, Persian Gulf War Illness, multiple chemical sensitivity, irritable bowel and bladder syndromes, and other allied conditions. Analysis of the fluid flowing from the brain will identify factors that may indicate the pathology of CFS to direct the creation of new treatments, and serve as diagnostic biomarkers for future testing.
Researchers obtained cerebrospinal fluid from Gulf War Illness (GWI) subjects (most also had CFS), FM subjects (many had CFS), and control subjects for a total of 62 subjects. Researchers compared pooled samples from GWI, pooled samples from CFS, and pooled samples from controls. The identified the proteins that were only present in the GWI and CFS people. They also took individual specimens from the CFS and GWI people and compared them to individual specimens from control subjects.
Dr. Baraniuk: It was mind boggling because we ended up with about 10 proteins that were present only in our CFS group and not present in the control group. The odds of this are about 10 to the minus 15. We’re currently doing the proteomic analysis using a high-end orbitrap mass spectrometer to see if we get the same pattern. The key proteins from the CFS-related proteome, I think, give us some potential clues as to what’s going on
Toni M., Maryland
Thank you, Chairman Oleske and members of the Chronic Fatigue Syndrome Advisory Committee, for this opportunity to address issues of help and accommodation for those living with CFS.
My story is one of resistance and denial of disabling conditions. Looking back, I had something wrong since early childhood. My body became so overwhelmed over time, I ended up in a bad state of chronic fatigue syndrome.....
As the nature of CFS becomes better understood by more professionals, more CFS patients may appreciate their physical and cognitive deficits—“may” is the operative word here. Don’t count on it. Education helps, knowledge helps, but you have to be ready to hear it. But taking limitations seriously can help you ask for help a little faster than I did. Help is hard as CFS people hold onto the idea of recovery any minute, as I did. When you can dress yourself and toilet yourself and do dishes occasionally and go out to dinner and go shopping—although not sit at a job without feeling horribly sick—when you have that going on in your life, the idea of recovery any minute is ever present…the idea that life will go back to what is normal for them—for me—before CFS was present.
Programs are severely needed that help CFS people and understand that their wishes for recovery and their up and down days are normal. We live and cope with CFS with difficulty, often struggling with symptoms for years or decades without diagnosis, as I did, without even physician support, as members of this committee know. Programs helping CFS patients cope with the nature of their conditions has the potential—the potential; don’t count on it—to short circuit patients’ denial and resistance, hastening acceptance, with which the best of us need help; helping us move toward healing.
Lars Ellen M., Arizona
I am 51 living in Tucson with my husband. I have CFS, OI, FM, allergies, Hashimoto’s disease, pernicious anemia, fluctuating thyroid, ADHD for which I cannot use drugs because of memory loss side effects, sleep apnea, restless leg syndrome, and postural limb movement syndrome causing jerking and kicking the nonsense out of bedpost and darling husband.
Disability retirement from work was a result of a series of events culminating in five back surgeries beginning in 1999. I use two canes to walk short distances and I drive a little. Antibiotics are needed for the foreseeable future due to chronic MRSA [methicillin resistant Staphylococcus aureus] infection causing chronic digestive problems.
CFS patients need programs designed to help patients more easily find resources, tools, and alternatives to maneuver past the obstacles of disability, enabling patients to feel more part of life and the lives around them. It is as confusing for patients as for their families that some days we seem almost normal only to relapse into a heap the next day. This is serious stuff, and patients and their families benefit by knowing what to expect while we wait for research to help some more.
CFS means not knowing what to expect on a given day. Some days, things get done; some days, I may be so stove up that showering, bathing, changing clothes is out of the question. Dressing, especially to be out and about, is nothing like my former life. I have no more strength for pulling on pantyhose or stumbling in high heels. I dress in easy access clothing and comfortable shoes. But there are days I crawl out of bed, rubber band my uncombed hair, and spend the entire day in pajamas.
Neurological symptoms cause brain fog and trouble holding onto instructions, directions, words, and names, including those of my two grown sons, like a game of charades or password. Shopping for a mattress, I gestured wildly with slurred speech, exclaiming, “I need bird…feather…not up…for top.” The word I sought was “down” for a mattress pad stuffed with down feathers. B12 shots help, but after a shot a few days ago, writing this has taken several days—before editing.
My best friend and husband, Glenn, and I have set up our home for my ease of movement—more accessible kitchen and laundry, floors that won’t trip me up and are softer to walk on. I need an indoor temperature of 66 degrees to deal with chronic temperature dysregulation. I wear long sleeves to hide bruises from stumbles and to keep me comfortable in my cooler than normal house.
People like me feel overwhelmed by things we must do much less fun things like travel. We feel almost forbidden to have fun once we no longer work. I have given this a lot of thought. ...
Just one extract from what seems a very important conference. CHRONIC FATIGUE SYNDROME ADVISORY COMMITTEE
http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac20081028min.pdf
"Dr. Jason's Presentation
Dr. Jason said that he also planned to give his presentation at the Reno
IACFS/ME conference.
He noted that there are about 200 publications each year on CFS, according
to Freidberg and Associates. It is unclear how CFS is represented in the
published literature, particularly with medical textbooks. Medical textbooks
are important because they are:
. A cornerstone in the training of medical staff and students.
. A main source of references and reviews for medical professionals.
. A source of information on coding and treating a variety of illnesses.
The objective of Dr. Jason's study was to evaluate the coverage of CFS in
medical textbooks to determine the extent and comprehensiveness of CFS
information.
Textbooks were gathered from a number of sources including university
medical school libraries and medical school book stores. The study looked at
129 textbooks in different specialty areas. The areas of interest in the
study were the number of pages and percent of space allotted to CFS. Dr.
Jason discussed pages in his presentation. The comprehensiveness and extent
of representation of CFS information was included, and CFS was compared with
to other illnesses.
Page representation:
. Looked at a total of 140,552 pages in 129 textbooks. Always took the most
recent version of a textbook, primarily within the last seven or eight
years.
. CFS was represented on 125 pages, or .089 percent of the potential pages
examined.
. Holistic, psychiatry, and internal medicine texts had the highest
percentage of mention of CFS; endocrinology, obstetrics, and emergency
medicine the least.
If CFS was mentioned, the study also examined information concerning:
. The illness ideology.
. The probability of Axis 1 disorder.
. Treatment options.
. Prevalence rate.
. Inclusion of ME terminology.
Results:
. 53 textbooks (41 percent) of the 129 textbooks had some mention of CFS.
The problem, of course, was that there was very little mention.
. 42 textbooks (32 percent) had something about etiology. Sometimes it was
biogenic, sometimes psychogenic, sometimes both.
. 17 textbooks (13 percent) mentioned the high probability of Axis 1
Disorder [a major psychiatric problem].
. 25 textbooks (19 percent) mentioned some criteria.
. 37 textbooks (28.7 percent) indicated some treatment associated with CFS.
The most common were cognitive behavior therapy, anti-depressants, graded
exercise or exercise, and supplements.
. Only 18 textbooks (14 percent) had any mention of prevalence rates.
. Only 19 books (14.8 percent) had any mention of ME terminology.
Summarizing this part of the study: Critical domains within CFS are not well
represented in medical textbooks, either in terms of etiology, criterion, or
treatment options.
Illness Comparison
Next the study analyzed a random sample of 45 books from the 129 to compare
CFS with illnesses that are much more prevalent-cancer and diabetes-and with
illnesses that are less prevalent-MS [multiple sclerosis] and Lyme disease.
Even the illnesses that are less prevalent than CFS have greater coverage in
medical textbooks. CFS appeared in 24 percent of the 41,922 pages while Lyme
disease appeared in 61.8 percent and MS, 53 percent.
Major findings:
. CFS is underrepresented in medical textbooks.
. CFS is also given fewer pages than diseases that are less prevalent.
Why does this matter?
. 77 percent of CFS patients reported they had experienced a negative
interaction with a healthcare provider.
. 66 percent believe that their condition had been made worse after seeking
care from their doctors.
. Family physicians feel the continuing education and training they received
leave them unable to diagnose and manage CFS.
. 48 percent of general practitioners did not feel confident that they could
diagnose CFS.
Conclusions
. Healthcare professionals need to be adequately trained and provided with
up-to-date, non-biased information in their textbooks.
. Medical textbooks may be a critical component in raising CFS awareness and
there is a clear need for this illness to receive more representation.
Additional points of interest:
Migraines plus CFS suggests:
• Autonomic abnormalities
•Neurogenic inflammation
very likely contribute to the high level of overlap between migraines and CFS.
From a treatment perspective, if you identify migraines in 88 percent of your CFS people, you should get them started on appropriate therapy.
From this we wanted to look more at the autonomic nervous system.
Hypothesis: Central nervous system dysfunction is a critical component of CFS and related syndromes such as FM, Persian Gulf War Illness, multiple chemical sensitivity, irritable bowel and bladder syndromes, and other allied conditions. Analysis of the fluid flowing from the brain will identify factors that may indicate the pathology of CFS to direct the creation of new treatments, and serve as diagnostic biomarkers for future testing.
Researchers obtained cerebrospinal fluid from Gulf War Illness (GWI) subjects (most also had CFS), FM subjects (many had CFS), and control subjects for a total of 62 subjects. Researchers compared pooled samples from GWI, pooled samples from CFS, and pooled samples from controls. The identified the proteins that were only present in the GWI and CFS people. They also took individual specimens from the CFS and GWI people and compared them to individual specimens from control subjects.
Dr. Baraniuk: It was mind boggling because we ended up with about 10 proteins that were present only in our CFS group and not present in the control group. The odds of this are about 10 to the minus 15. We’re currently doing the proteomic analysis using a high-end orbitrap mass spectrometer to see if we get the same pattern. The key proteins from the CFS-related proteome, I think, give us some potential clues as to what’s going on
Toni M., Maryland
Thank you, Chairman Oleske and members of the Chronic Fatigue Syndrome Advisory Committee, for this opportunity to address issues of help and accommodation for those living with CFS.
My story is one of resistance and denial of disabling conditions. Looking back, I had something wrong since early childhood. My body became so overwhelmed over time, I ended up in a bad state of chronic fatigue syndrome.....
As the nature of CFS becomes better understood by more professionals, more CFS patients may appreciate their physical and cognitive deficits—“may” is the operative word here. Don’t count on it. Education helps, knowledge helps, but you have to be ready to hear it. But taking limitations seriously can help you ask for help a little faster than I did. Help is hard as CFS people hold onto the idea of recovery any minute, as I did. When you can dress yourself and toilet yourself and do dishes occasionally and go out to dinner and go shopping—although not sit at a job without feeling horribly sick—when you have that going on in your life, the idea of recovery any minute is ever present…the idea that life will go back to what is normal for them—for me—before CFS was present.
Programs are severely needed that help CFS people and understand that their wishes for recovery and their up and down days are normal. We live and cope with CFS with difficulty, often struggling with symptoms for years or decades without diagnosis, as I did, without even physician support, as members of this committee know. Programs helping CFS patients cope with the nature of their conditions has the potential—the potential; don’t count on it—to short circuit patients’ denial and resistance, hastening acceptance, with which the best of us need help; helping us move toward healing.
Lars Ellen M., Arizona
I am 51 living in Tucson with my husband. I have CFS, OI, FM, allergies, Hashimoto’s disease, pernicious anemia, fluctuating thyroid, ADHD for which I cannot use drugs because of memory loss side effects, sleep apnea, restless leg syndrome, and postural limb movement syndrome causing jerking and kicking the nonsense out of bedpost and darling husband.
Disability retirement from work was a result of a series of events culminating in five back surgeries beginning in 1999. I use two canes to walk short distances and I drive a little. Antibiotics are needed for the foreseeable future due to chronic MRSA [methicillin resistant Staphylococcus aureus] infection causing chronic digestive problems.
CFS patients need programs designed to help patients more easily find resources, tools, and alternatives to maneuver past the obstacles of disability, enabling patients to feel more part of life and the lives around them. It is as confusing for patients as for their families that some days we seem almost normal only to relapse into a heap the next day. This is serious stuff, and patients and their families benefit by knowing what to expect while we wait for research to help some more.
CFS means not knowing what to expect on a given day. Some days, things get done; some days, I may be so stove up that showering, bathing, changing clothes is out of the question. Dressing, especially to be out and about, is nothing like my former life. I have no more strength for pulling on pantyhose or stumbling in high heels. I dress in easy access clothing and comfortable shoes. But there are days I crawl out of bed, rubber band my uncombed hair, and spend the entire day in pajamas.
Neurological symptoms cause brain fog and trouble holding onto instructions, directions, words, and names, including those of my two grown sons, like a game of charades or password. Shopping for a mattress, I gestured wildly with slurred speech, exclaiming, “I need bird…feather…not up…for top.” The word I sought was “down” for a mattress pad stuffed with down feathers. B12 shots help, but after a shot a few days ago, writing this has taken several days—before editing.
My best friend and husband, Glenn, and I have set up our home for my ease of movement—more accessible kitchen and laundry, floors that won’t trip me up and are softer to walk on. I need an indoor temperature of 66 degrees to deal with chronic temperature dysregulation. I wear long sleeves to hide bruises from stumbles and to keep me comfortable in my cooler than normal house.
People like me feel overwhelmed by things we must do much less fun things like travel. We feel almost forbidden to have fun once we no longer work. I have given this a lot of thought. ...
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