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 In my opinion it should be withdrawn."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
Tuesday, March 24, 2009
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. ...
Friday, December 26, 2008
Fibro at Xmas
. . . is a total pain!
Tired, in pain and trying to think through the fog topped off by a chronic coucgh and the return of tendonitus in my shoulder. . .
Tired, in pain and trying to think through the fog topped off by a chronic coucgh and the return of tendonitus in my shoulder. . .
Monday, December 22, 2008
graded exercise therapy not the answer
December 2008: ME Free For All: "Re: ME controversy hampers research, Independent, 19 December 2008
Sir Peter Spencer, Chief Executive of Action for ME, writes, 'to print that 'the best treatment [for ME] is graded exercise therapy' is wholly misleading.' (ME is a devastating illness, but don't lose all hope, Independent, 15 December 2008). He is quite right and Action for ME's most recent survey, showing that GET makes a majority worse, is supported by other research in Japan and the USA.
Yet, incredibly, Sir Peter's own organisation is calling for more funding to increase the provison of the very treatment, we have all agreed, has been shown to make most M.E. sufferers worse after it, some irrecoverably so, leaving them housebound or in a wheelchair. Even more astonishingly, they are getting it.
In the meantime, promising biomedical research, including the genetic work referred to by Dr Anne Faulkner in her letter (ME controversy hampers research, Independent, 19 December 2008), is being starved of public money and is having to rely on charity or go undone.
The advice of this organisation and many other M.E. charities is, unequivocally, to choose the option, contained in the NICE (National Institute for Health and Clinical Excellence) guidelines, of declining treatment in one of the regional clinics unless or until they have reliable evidence to support them offering it.
Yours sincerely
Dr John H Greensmith
ME Free For All. org"
Sir Peter Spencer, Chief Executive of Action for ME, writes, 'to print that 'the best treatment [for ME] is graded exercise therapy' is wholly misleading.' (ME is a devastating illness, but don't lose all hope, Independent, 15 December 2008). He is quite right and Action for ME's most recent survey, showing that GET makes a majority worse, is supported by other research in Japan and the USA.
Yet, incredibly, Sir Peter's own organisation is calling for more funding to increase the provison of the very treatment, we have all agreed, has been shown to make most M.E. sufferers worse after it, some irrecoverably so, leaving them housebound or in a wheelchair. Even more astonishingly, they are getting it.
In the meantime, promising biomedical research, including the genetic work referred to by Dr Anne Faulkner in her letter (ME controversy hampers research, Independent, 19 December 2008), is being starved of public money and is having to rely on charity or go undone.
The advice of this organisation and many other M.E. charities is, unequivocally, to choose the option, contained in the NICE (National Institute for Health and Clinical Excellence) guidelines, of declining treatment in one of the regional clinics unless or until they have reliable evidence to support them offering it.
Yours sincerely
Dr John H Greensmith
ME Free For All. org"
Monday, December 15, 2008
cfs/meKnowledgeCenter - Information and Guidance for those affected by CFS/ME
cfs/meKnowledgeCenter - Information and Guidance for those affected by CFS/ME has the makings of a great site..
Debating with myself whether it is worth going back to my GP again in the maybe forlorn hope of getting her to understand how disabling my fibromyalgia is. Last visit (for RTI) I mentioned new hot sweats, quite different to the previous which probably were menopause related, but no, she insisted they were probably still menopausal. Strange then that they stopped shortly into the course of anti-biotics. Still got horrendous post nasal drip and feel like a fever / headache is creeping back up on me too...
Anyway, last week I decided to tackle emulsioning the 4th wall in our main sitting room, (I did one in 2006 and one last year) - and took me a whole bloody week, leaving me totally wiped out every day despite tackling it a bit at a time. I only made it out of the house twice, too tired and fuddled to drive. Frustrating nightmare illness. . .
Debating with myself whether it is worth going back to my GP again in the maybe forlorn hope of getting her to understand how disabling my fibromyalgia is. Last visit (for RTI) I mentioned new hot sweats, quite different to the previous which probably were menopause related, but no, she insisted they were probably still menopausal. Strange then that they stopped shortly into the course of anti-biotics. Still got horrendous post nasal drip and feel like a fever / headache is creeping back up on me too...
Anyway, last week I decided to tackle emulsioning the 4th wall in our main sitting room, (I did one in 2006 and one last year) - and took me a whole bloody week, leaving me totally wiped out every day despite tackling it a bit at a time. I only made it out of the house twice, too tired and fuddled to drive. Frustrating nightmare illness. . .
Wednesday, December 10, 2008
This Morning | Health | Myalgic Encephalopathy ME 123 - ITV Lifestyle
This Morning | Health | Myalgic Encephalopathy ME 123 - ITV Lifestyle: "M.E
Vicky Shepherd, 23 has been battling with Myalgic Encephalopathy (M.E) for over half her life.
Vicky believes the illness was triggered from when she had Glandular Fever when she was 11, but it took five years before Doctors came up with the diagnoses.
Vikki explains: 'At the time the doctors put my symptoms of contact migraine. stabbing pains in the head, flu symptoms, extreme fatigue and the fact I could only walk short distances.”
She adds: “I went from doctor to doctor, to a neurologist who couldn't see anything wrong, it wasn't until just after my 16th birthday when I finally go diagnosed.'
All types of people at all ages are affected. Severe fatigue, painful muscles and joints, disordered sleep, gastric disturbances, poor memory and concentration are commonplace in sufferers.
It is often see that viral infection can onset the disease. However, an accident or operations can also be a trigger, although some people experience a slow, insidious onset.
Unfortunately, there is no widely accepted cure and no universally effective treatment for M.E.
Doctor Charles Shepherd explains, 'We can prescribe the patient with some drugs which may help with symptoms, there's research in Amercia into an Anti-Viral drug at the moment, however as it stands, there is no cure.'
Association of Young People with ME
Web: www.ayme.org.uk
Vicky’s charity
Web: www.postpals.co.uk"
I actually mailed in as follows:
Wonderful to see the medical mindset challenged and dignity given back to ME sufferers.
I am now 50 and the past 20 years have been a living hell overall with brief periods of ok health and energy. Only once have I been treated as a whole person by the medical profession instead I get treated for numerous conditions and symptoms as if they are all seperate.
These include depression, IBS, insomnia, recurring infections, joint and muscle pain and above all tiredness and lack of energy. I have no over-arching diagnosis, the closest being my GP saying, "oh, that sounds like fibromyalgia".
The effect on my life have been immense, I went from being top first year student across the whole of Durham University going on to gain a university scholarship for post graduate study to being a suicidal psychiatric in patient soon after a strange episode when my ankles and lower legs swelled, became painful and hot, diagnosed as a virus by my GP.
From then on life felt like wading through treacle...Better jump to now or I will never get this sent. Sofa bound today because yesterday I thought I felt well enough to emulsion a small wall. By last night I was hurting all over, foggy brained and totally exhausted. This morning I feel as if I am starting with flu - this sequence happens if I ever over do it...any help and advice most welcome and the article today helps me feel a little less alone.
Vicky Shepherd, 23 has been battling with Myalgic Encephalopathy (M.E) for over half her life.
Vicky believes the illness was triggered from when she had Glandular Fever when she was 11, but it took five years before Doctors came up with the diagnoses.
Vikki explains: 'At the time the doctors put my symptoms of contact migraine. stabbing pains in the head, flu symptoms, extreme fatigue and the fact I could only walk short distances.”
She adds: “I went from doctor to doctor, to a neurologist who couldn't see anything wrong, it wasn't until just after my 16th birthday when I finally go diagnosed.'
All types of people at all ages are affected. Severe fatigue, painful muscles and joints, disordered sleep, gastric disturbances, poor memory and concentration are commonplace in sufferers.
It is often see that viral infection can onset the disease. However, an accident or operations can also be a trigger, although some people experience a slow, insidious onset.
Unfortunately, there is no widely accepted cure and no universally effective treatment for M.E.
Doctor Charles Shepherd explains, 'We can prescribe the patient with some drugs which may help with symptoms, there's research in Amercia into an Anti-Viral drug at the moment, however as it stands, there is no cure.'
Association of Young People with ME
Web: www.ayme.org.uk
Vicky’s charity
Web: www.postpals.co.uk"
I actually mailed in as follows:
Wonderful to see the medical mindset challenged and dignity given back to ME sufferers.
I am now 50 and the past 20 years have been a living hell overall with brief periods of ok health and energy. Only once have I been treated as a whole person by the medical profession instead I get treated for numerous conditions and symptoms as if they are all seperate.
These include depression, IBS, insomnia, recurring infections, joint and muscle pain and above all tiredness and lack of energy. I have no over-arching diagnosis, the closest being my GP saying, "oh, that sounds like fibromyalgia".
The effect on my life have been immense, I went from being top first year student across the whole of Durham University going on to gain a university scholarship for post graduate study to being a suicidal psychiatric in patient soon after a strange episode when my ankles and lower legs swelled, became painful and hot, diagnosed as a virus by my GP.
From then on life felt like wading through treacle...Better jump to now or I will never get this sent. Sofa bound today because yesterday I thought I felt well enough to emulsion a small wall. By last night I was hurting all over, foggy brained and totally exhausted. This morning I feel as if I am starting with flu - this sequence happens if I ever over do it...any help and advice most welcome and the article today helps me feel a little less alone.
Tuesday, December 02, 2008
Diagnostic Test for Fibromyalgia? Results of Imaging Study
Diagnostic Test for Fibromyalgia? Results of Imaging Study: "A study published in The Journal of Nuclear Medicine provides evidence of abnormal brain activity in fibromyalgia that is visible on a special kind of scan.
The scan, called single photon emission computer tomography (SPECT), showed abnormal blood flow in the brains of people with fibromyalgia - high levels of blood in an area known to deal with pain processing, and low levels in areas believed to deal with emotional response to pain. People who reported more severe fibromyalgia symptoms, based on the Fibromyalgia Impact Questionnaire, had greater abnormalities in cranial blood flow.
Significantly, researchers say levels of abnormal blood flow were not linked to anxiety and depression.
This study provides further evidence that fibromyalgia is a physiological disorder and that's it's based on neurological dysfunction. Researchers say the findings could be used in clinical trials to better gauge the effectiveness of treatments. It also could be used to confirm the severity of the illness and may someday lead to an objective diagnosis of fibromyalgia."
The evidence is piling up!
The scan, called single photon emission computer tomography (SPECT), showed abnormal blood flow in the brains of people with fibromyalgia - high levels of blood in an area known to deal with pain processing, and low levels in areas believed to deal with emotional response to pain. People who reported more severe fibromyalgia symptoms, based on the Fibromyalgia Impact Questionnaire, had greater abnormalities in cranial blood flow.
Significantly, researchers say levels of abnormal blood flow were not linked to anxiety and depression.
This study provides further evidence that fibromyalgia is a physiological disorder and that's it's based on neurological dysfunction. Researchers say the findings could be used in clinical trials to better gauge the effectiveness of treatments. It also could be used to confirm the severity of the illness and may someday lead to an objective diagnosis of fibromyalgia."
The evidence is piling up!
Abnormal Brain Structure Predicts Severity of Fibromyalgia Symptoms
Abnormal Brain Structure Predicts Severity of Fibromyalgia Symptoms: "Imaging scans called magnectic resonanace diffusion-tensor imaging (MR-DTI) and magnetic resonance imaging of voxel-based morphometry (MR-VBM) showed what researchers call a 'striking pattern of changes in brain morphology' in people with fibromyalgia (FMS).
In this study, abnormal brain morphology (form and structure) was detected in multiple regions of the brain. Changes detected with MR-DTI correlated with pain intensity, fatigue, self-perceived physical impairment, and stress symptoms. MR-VBM measurements didn't correlate to symptom intensities.
Researchers concluded that MR-DTI may support a diagnosis of FMS and possibly of similar pain syndromes as well."
In this study, abnormal brain morphology (form and structure) was detected in multiple regions of the brain. Changes detected with MR-DTI correlated with pain intensity, fatigue, self-perceived physical impairment, and stress symptoms. MR-VBM measurements didn't correlate to symptom intensities.
Researchers concluded that MR-DTI may support a diagnosis of FMS and possibly of similar pain syndromes as well."
Genetic factors may help to identify Fibromyalgia
This reads like a huge break through but will such tests and the aknowledgment of physical basis for fibromyalgia filter down to the GP surgery level?
May genetic factors in fibromyalgia help to identify patients with
differentially altered frequencies of immune cells?
Clin Exp Immunol. 2008 Dec;154(3):346-52.
Carvalho LS, Correa H, Silva GC, Campos FS, Baião FR, Ribeiro LS,
Faria AM, d'Avila Reis D.
Department of Morphology, Universidade Federal de Minas Gerais, Brazil.
PMID: 19037919
There is common agreement that fibromyalgia (FM) is an extremely
heterogeneous entity. Patients differ in their clinical symptoms,
endocrine and immune parameters. In this study we evaluated endocrine
and immunological features of distinct subsets of FM patients.
In contrast to previous attempts to identify subsets of FM patients,
based solely on their psychological and cognitive features, herein we
propose to separate FM patients by genetic features. Allelic
expression of the polymorphic promoter region of the serotonin
transporter (5-HTTLPR) was analysed as a relevant genetic factor for
FM. Seventy-five patients meeting the American College of
Rheumatology criteria and 27 healthy age-matched controls
participated in this study. All controls and FM patients were
submitted to genotyping of 5-HTTLPR. Twenty-seven FM patients, who
were able to discontinue hypnotic, sedative or psychotropic
prescription medications for at least 2 weeks, were then subdivided
into L (homozygote LL) or S groups (genotypes LS and SS). They were
evaluated for salivary cortisol levels, absolute number of leucocyte
subpopulations, including natural killer (NK) cells and activated T
and B lymphocytes.
Both groups presented decreased cortisol levels, more intense in the
L group, increased all B lymphocytes subsets and reduced
CD4(+)CD25(high) T lymphocytes. The L group had increased
CD4(+)CD25(low) activated T lymphocytes, while the S group displayed
elevated CD4(+)human leucocyte antigen D-related (HLA-DR)(+)
activated T lymphocytes and decreased NK cells.
We demonstrate that genetic factors may help to identify FM
individuals with differentially altered frequencies of immune cells.
May genetic factors in fibromyalgia help to identify patients with
differentially altered frequencies of immune cells?
Clin Exp Immunol. 2008 Dec;154(3):346-52.
Carvalho LS, Correa H, Silva GC, Campos FS, Baião FR, Ribeiro LS,
Faria AM, d'Avila Reis D.
Department of Morphology, Universidade Federal de Minas Gerais, Brazil.
PMID: 19037919
There is common agreement that fibromyalgia (FM) is an extremely
heterogeneous entity. Patients differ in their clinical symptoms,
endocrine and immune parameters. In this study we evaluated endocrine
and immunological features of distinct subsets of FM patients.
In contrast to previous attempts to identify subsets of FM patients,
based solely on their psychological and cognitive features, herein we
propose to separate FM patients by genetic features. Allelic
expression of the polymorphic promoter region of the serotonin
transporter (5-HTTLPR) was analysed as a relevant genetic factor for
FM. Seventy-five patients meeting the American College of
Rheumatology criteria and 27 healthy age-matched controls
participated in this study. All controls and FM patients were
submitted to genotyping of 5-HTTLPR. Twenty-seven FM patients, who
were able to discontinue hypnotic, sedative or psychotropic
prescription medications for at least 2 weeks, were then subdivided
into L (homozygote LL) or S groups (genotypes LS and SS). They were
evaluated for salivary cortisol levels, absolute number of leucocyte
subpopulations, including natural killer (NK) cells and activated T
and B lymphocytes.
Both groups presented decreased cortisol levels, more intense in the
L group, increased all B lymphocytes subsets and reduced
CD4(+)CD25(high) T lymphocytes. The L group had increased
CD4(+)CD25(low) activated T lymphocytes, while the S group displayed
elevated CD4(+)human leucocyte antigen D-related (HLA-DR)(+)
activated T lymphocytes and decreased NK cells.
We demonstrate that genetic factors may help to identify FM
individuals with differentially altered frequencies of immune cells.
Tuesday, November 25, 2008
Where is the deception in M.E.?
Strong stuff but I have to say that mental illness can be just as disabling and opportunity limiting....
As animals living in a dangerous world, humans have to 'get it right' a lot
of the time in order to survive. Misjudgments can lead to various dangers
for people.
Given this imperative it is not surprising that humans are very sensitive to
being deceived. When people are deceived they 'get it wrong' and are put in
danger.
When M.E. psychologizers (hereafter 'Meps') use terms like 'secondary
gains', 'undeserving sick', people with M.E. (hereafter PWME) might feel
they are being accused of deception. When Meps use terms like 'illness
beliefs', 'scanning', 'hysteria', they are implying that PWME are deceiving
themselves and are therefore (albeit unintentionally) deceiving other
people.
The common factor is that Meps perceive some kind of deception. Detection
and denouncement of this perceived deception has many rewards and generates
reasons to maintain this assertion. Meps may achieve a sense of superiority;
the deceiver has been outsmarted. They may gain a sense of security; they
are safe from being deceived. There is the secondary gain of gratitude from
those they alert to the supposed deception. When people can convince others
that a particular person or persons are deceiving them they may gain control
of the energy generated by the inbuilt fear of being deceived, the fear of
getting it wrong.
The satisfaction of denouncing a deception is something that most people can
identify with. In the children's story The Emperor's New Clothes
(http://en.wikipedia.org/wiki/The_Emperor's_New_Clothes), I doubt that
anyone identifies with the suckers in the crowd, they are with the child
that sees clearly how things really are.
The fear of getting it wrong is a phenomenon that can be exploited by
convincing people that a deceit exists, i.e. accusing Jews in Nazi Germany
of secret activities to undermine society or asserting that Saddam Hussein
had control of weapons of mass destruction prior to the invasion of Iraq.
False accusations of deception can give power to act in certain ways that
might not otherwise be condoned and to manipulate mass-attitudes and
behavior. Many PWME and those that know them are well aware of the abuse and
neglect to which they have been subjected. This treatment of severely ill
people would normally be unthinkable in a civilized society. The implication
that PWME are self-decieved or decieving has fostered intolerance towards
them in societies that are generally noted for their humane treatment of the
sick.
When false accusations are disseminated and widely accepted a strange
phenomenon can occur. When no weapons of mass destruction were found in
Iraq neither President Bush nor Prime Minister Blair resigned nor were
forced out of office. Both misled their countries into embarking on an
illegal invasion but both survived the exposure of their false premise for
war.
Assertions about WMD's created anxiety which may have led people to accept
their existence in the absence of evidence. In this way many people had
unwittingly accepted a share in the falsity. This may have resulted in a
reduced impetus to displace the misguiding leaders because some people
protected their egos and sense of security. People were ready to grasp at
the proffered notion that Saddam was an evil person and his regime had to go
(despite the fact that other countries with unfit rulers have not been
invaded). This justification which did not make the invasion legal,
nevertheless saved people from confronting the frightening prospect that
they had been misled by their leaders and they 'got it wrong'.
In some circumstances it is an easy thing to say, 'I was wrong', but in
certain situations such an admission can demand extraordinary courage and
humility because it carries with it a profound sense of danger. The degree
of danger is dependent on many factors which include the degree of
ego-identity enmeshed with the mistaken belief and the level of certainty
formerly espoused to others.
This means that people whose egos and personas are highly associated with
their opinions are less likely to change or modify their opinions according
to available information. Believing their opinions are 'right' could be an
imperative for them.
Some people (including myself) that have remained with the same GP for many
years may have noticed a gradual change in attitude towards a diagnosis of
M.E. This is made possible because many GP's, although frustrated by the
illness and sometimes by their patients, retained their open-mindedness and
never settled on a fixed opinion. Remaining flexible has enabled them to
accept new research findings and in some cases observe for themselves the
process of the disease in their patients.
Meps who voiced their opinions strongly are in a difficult position even
though they have succeeded in disseminating their opinions into wider
society. They cannot easily recant their opinions because of professional
pressures. They must now strive to maintain their position as best they can
or carefully reposition. Those that have to some degree colluded with their
opinions may provide support and remain reluctant to refute Meps theories
outright.
Asserting that CFS (a diagnosis that includes some PWME) is 'heterogeneous'
offers a useful way out for Meps and those that accept their theories. CFS
being 'heterogeneous' facilitates the possibility that some people diagnosed
with CFS are deluding themselves and have confused everyone. This may
create some justification for those powerful doctors that have forcefully
espoused the view that M.E. is psychological.
Other possible get-outs might include: rejecting Cartesian dualism;
misdiagnosis; patients can develop new, serious illnesses; CFS is real;
patients symptoms are real; etc. This type of wriggling and repositioning
will probably continue whilst research adds weight to the evidence of
physical disease in M.E.
I imagine it is a bitter irony for many people with M.E. that those that
implied they are deceiving themselves into thinking they are ill, must now
struggle to maintain their own illness beliefs about M.E.
Meps must ignore or devalue research that demonstrates physical
abnormalities in M.E. or strive to demonstrate that such abnormalities are
psychological in origin. Their activities may impede biophysical
investigations and they must justify this behavior. The position held by
some vociferous and active Meps is precarious, being wrong would not only
undermine them professionally and in some cases financially; but also poses
a threat to their ego identity.
Until Meps are at least theoretically able to accept the role of deluded
psychologizer they will never be able to consider their position honestly.
Their activities will probably continue to add to the considerable suffering
of PWME and impede the research that might offer real solutions. They may
also continue to influence policy makers, the media, and the medical
professions with their opinions.
Attempting to analyze any type of controversy always takes me to
considerations of what different opinions mean to me personally. If I do
not know how I prefer one side of an argument over another the temptation
may be to adopt those opinions that are most comfortable or profitable to
me. Many years ago a doctor was appalled by the way fellow physicians
treated PWME as mentally ill, and asked; 'what if you are wrong?'
The theoretical gains for a PWME in accepting a psychological interpretation
for their symptoms has led many, like myself, to attempt just that way of
thinking. Their answer to the question above might be; 'I might get a life
back, regain some social dignity, have a career and a family, go on holidays
and not be in pain all the time or worried about money and the future.'
These theoretical potential gains mean that PWME can readily weigh a
psychological interpretation in their considerations and many like myself
have tried this. I've tried every imaginable approach to GET and not just
over weeks or months but years. Not only did I have months of high quality
counseling but I am a qualified counselor with a research MA in counseling
and psychotherapy.
All this effort resulted in precisely zero benefit to my health but did
cause severe exacerbations and several relapses. It was not until I began
antibiotic therapy for the infections that were finally discovered that I
got some improvement in the disabling symptoms I'd lived with for 17 years.
As for Meps, I doubt that some can even begin to contemplate the question
posed above. For them the cost of being wrong is too high for them to
examine this honestly. They must keep in focus that M.E. is all the fault of
the patient's weak mind and self-deception. They must keep their focus of
attention narrow to avoid being disturbed by new scientific evidence. They
must shut out the shattered lives of patients that lie in the wake of their
theories.
Above all, they must obscure their own motives.
Peter Kemp
As animals living in a dangerous world, humans have to 'get it right' a lot
of the time in order to survive. Misjudgments can lead to various dangers
for people.
Given this imperative it is not surprising that humans are very sensitive to
being deceived. When people are deceived they 'get it wrong' and are put in
danger.
When M.E. psychologizers (hereafter 'Meps') use terms like 'secondary
gains', 'undeserving sick', people with M.E. (hereafter PWME) might feel
they are being accused of deception. When Meps use terms like 'illness
beliefs', 'scanning', 'hysteria', they are implying that PWME are deceiving
themselves and are therefore (albeit unintentionally) deceiving other
people.
The common factor is that Meps perceive some kind of deception. Detection
and denouncement of this perceived deception has many rewards and generates
reasons to maintain this assertion. Meps may achieve a sense of superiority;
the deceiver has been outsmarted. They may gain a sense of security; they
are safe from being deceived. There is the secondary gain of gratitude from
those they alert to the supposed deception. When people can convince others
that a particular person or persons are deceiving them they may gain control
of the energy generated by the inbuilt fear of being deceived, the fear of
getting it wrong.
The satisfaction of denouncing a deception is something that most people can
identify with. In the children's story The Emperor's New Clothes
(http://en.wikipedia.org/wiki/The_Emperor's_New_Clothes), I doubt that
anyone identifies with the suckers in the crowd, they are with the child
that sees clearly how things really are.
The fear of getting it wrong is a phenomenon that can be exploited by
convincing people that a deceit exists, i.e. accusing Jews in Nazi Germany
of secret activities to undermine society or asserting that Saddam Hussein
had control of weapons of mass destruction prior to the invasion of Iraq.
False accusations of deception can give power to act in certain ways that
might not otherwise be condoned and to manipulate mass-attitudes and
behavior. Many PWME and those that know them are well aware of the abuse and
neglect to which they have been subjected. This treatment of severely ill
people would normally be unthinkable in a civilized society. The implication
that PWME are self-decieved or decieving has fostered intolerance towards
them in societies that are generally noted for their humane treatment of the
sick.
When false accusations are disseminated and widely accepted a strange
phenomenon can occur. When no weapons of mass destruction were found in
Iraq neither President Bush nor Prime Minister Blair resigned nor were
forced out of office. Both misled their countries into embarking on an
illegal invasion but both survived the exposure of their false premise for
war.
Assertions about WMD's created anxiety which may have led people to accept
their existence in the absence of evidence. In this way many people had
unwittingly accepted a share in the falsity. This may have resulted in a
reduced impetus to displace the misguiding leaders because some people
protected their egos and sense of security. People were ready to grasp at
the proffered notion that Saddam was an evil person and his regime had to go
(despite the fact that other countries with unfit rulers have not been
invaded). This justification which did not make the invasion legal,
nevertheless saved people from confronting the frightening prospect that
they had been misled by their leaders and they 'got it wrong'.
In some circumstances it is an easy thing to say, 'I was wrong', but in
certain situations such an admission can demand extraordinary courage and
humility because it carries with it a profound sense of danger. The degree
of danger is dependent on many factors which include the degree of
ego-identity enmeshed with the mistaken belief and the level of certainty
formerly espoused to others.
This means that people whose egos and personas are highly associated with
their opinions are less likely to change or modify their opinions according
to available information. Believing their opinions are 'right' could be an
imperative for them.
Some people (including myself) that have remained with the same GP for many
years may have noticed a gradual change in attitude towards a diagnosis of
M.E. This is made possible because many GP's, although frustrated by the
illness and sometimes by their patients, retained their open-mindedness and
never settled on a fixed opinion. Remaining flexible has enabled them to
accept new research findings and in some cases observe for themselves the
process of the disease in their patients.
Meps who voiced their opinions strongly are in a difficult position even
though they have succeeded in disseminating their opinions into wider
society. They cannot easily recant their opinions because of professional
pressures. They must now strive to maintain their position as best they can
or carefully reposition. Those that have to some degree colluded with their
opinions may provide support and remain reluctant to refute Meps theories
outright.
Asserting that CFS (a diagnosis that includes some PWME) is 'heterogeneous'
offers a useful way out for Meps and those that accept their theories. CFS
being 'heterogeneous' facilitates the possibility that some people diagnosed
with CFS are deluding themselves and have confused everyone. This may
create some justification for those powerful doctors that have forcefully
espoused the view that M.E. is psychological.
Other possible get-outs might include: rejecting Cartesian dualism;
misdiagnosis; patients can develop new, serious illnesses; CFS is real;
patients symptoms are real; etc. This type of wriggling and repositioning
will probably continue whilst research adds weight to the evidence of
physical disease in M.E.
I imagine it is a bitter irony for many people with M.E. that those that
implied they are deceiving themselves into thinking they are ill, must now
struggle to maintain their own illness beliefs about M.E.
Meps must ignore or devalue research that demonstrates physical
abnormalities in M.E. or strive to demonstrate that such abnormalities are
psychological in origin. Their activities may impede biophysical
investigations and they must justify this behavior. The position held by
some vociferous and active Meps is precarious, being wrong would not only
undermine them professionally and in some cases financially; but also poses
a threat to their ego identity.
Until Meps are at least theoretically able to accept the role of deluded
psychologizer they will never be able to consider their position honestly.
Their activities will probably continue to add to the considerable suffering
of PWME and impede the research that might offer real solutions. They may
also continue to influence policy makers, the media, and the medical
professions with their opinions.
Attempting to analyze any type of controversy always takes me to
considerations of what different opinions mean to me personally. If I do
not know how I prefer one side of an argument over another the temptation
may be to adopt those opinions that are most comfortable or profitable to
me. Many years ago a doctor was appalled by the way fellow physicians
treated PWME as mentally ill, and asked; 'what if you are wrong?'
The theoretical gains for a PWME in accepting a psychological interpretation
for their symptoms has led many, like myself, to attempt just that way of
thinking. Their answer to the question above might be; 'I might get a life
back, regain some social dignity, have a career and a family, go on holidays
and not be in pain all the time or worried about money and the future.'
These theoretical potential gains mean that PWME can readily weigh a
psychological interpretation in their considerations and many like myself
have tried this. I've tried every imaginable approach to GET and not just
over weeks or months but years. Not only did I have months of high quality
counseling but I am a qualified counselor with a research MA in counseling
and psychotherapy.
All this effort resulted in precisely zero benefit to my health but did
cause severe exacerbations and several relapses. It was not until I began
antibiotic therapy for the infections that were finally discovered that I
got some improvement in the disabling symptoms I'd lived with for 17 years.
As for Meps, I doubt that some can even begin to contemplate the question
posed above. For them the cost of being wrong is too high for them to
examine this honestly. They must keep in focus that M.E. is all the fault of
the patient's weak mind and self-deception. They must keep their focus of
attention narrow to avoid being disturbed by new scientific evidence. They
must shut out the shattered lives of patients that lie in the wake of their
theories.
Above all, they must obscure their own motives.
Peter Kemp
Thursday, November 06, 2008
Fibromyalgia and IBS flare up
Irritible bowel syndrome and fibromyalgia often go hand in hand.
My IBS was diagnosed almost 30 years ago, I finally got it under some kind of control just over 10 years ago after a perod when my entire digestive tract was inflamed mouth to anus.
At that time I was being sick every day with atrocious diahreha, various investigations - colonoscopy, gastroscopy, barium push through etc showed the inflammation and the fastest push through my consultant had ever seen! It became patently obvious at this time that anything with dairy products in made the sickness and diarhea 100 times worst.
I took some advice and eliminated dairy as much as is possible, the black circles round my eyes cleared within weeks! The digestive problems took longer but settled to an almost tolerable level for a few years with a fair few flare ups along the way. I take mebeverine daily plus lopermide when needed although I try to avoid the later if I dont need to go out of the house as bunging my bowels up knocks them further out of control in the long run.
Now, however, despite being dairy free, eating no processed foods etc my bowel symptoms are out of control with diet and meds seemingly ineffective. Basically I never know if I am going to wake up and have a day of feeling I need to go and open my bowels and only pass mini pellets with a lot of effort or suffer explosive diarhea - either way I have pain and disruption to any sort of normal life....
So today I start purging for a colonoscopy tomorrow and it is not much fun at all. A very limited diet was started yesterday and 4 senna taken 10pm, which have not worked yet but yesterday was a "pellet" day. My last solida are allowed at 1pm, 24 hours before my examination, and at 2pm I take the first picolax which works something like putting caustic soda and boiling water down a blocked drain, boy does that stuff make you go! A second picolax later should keep me on the bog most of the day so I hope I won't have time or energy to feel hungry. Clear fluids only until 11am Friday then off to hospital for an enema, they sure make sure you are clean inside, and the colonoscopy..
Results to follow
My IBS was diagnosed almost 30 years ago, I finally got it under some kind of control just over 10 years ago after a perod when my entire digestive tract was inflamed mouth to anus.
At that time I was being sick every day with atrocious diahreha, various investigations - colonoscopy, gastroscopy, barium push through etc showed the inflammation and the fastest push through my consultant had ever seen! It became patently obvious at this time that anything with dairy products in made the sickness and diarhea 100 times worst.
I took some advice and eliminated dairy as much as is possible, the black circles round my eyes cleared within weeks! The digestive problems took longer but settled to an almost tolerable level for a few years with a fair few flare ups along the way. I take mebeverine daily plus lopermide when needed although I try to avoid the later if I dont need to go out of the house as bunging my bowels up knocks them further out of control in the long run.
Now, however, despite being dairy free, eating no processed foods etc my bowel symptoms are out of control with diet and meds seemingly ineffective. Basically I never know if I am going to wake up and have a day of feeling I need to go and open my bowels and only pass mini pellets with a lot of effort or suffer explosive diarhea - either way I have pain and disruption to any sort of normal life....
So today I start purging for a colonoscopy tomorrow and it is not much fun at all. A very limited diet was started yesterday and 4 senna taken 10pm, which have not worked yet but yesterday was a "pellet" day. My last solida are allowed at 1pm, 24 hours before my examination, and at 2pm I take the first picolax which works something like putting caustic soda and boiling water down a blocked drain, boy does that stuff make you go! A second picolax later should keep me on the bog most of the day so I hope I won't have time or energy to feel hungry. Clear fluids only until 11am Friday then off to hospital for an enema, they sure make sure you are clean inside, and the colonoscopy..
Results to follow
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